9:15pm: Just got off the phone and Reid just had his nightly assessment and touch time where they removed his catheter. They had to move his O2 back up into the mid-70s but was confident that they would be able to wean him back down into the low-60s where he was prior to all the touching. As the nurse said tonight, Reid associates all touching as negative and it doesn't take much to set him off. His blood gasses continue to be good and they have reduced the pressure down to 31 and breaths per minute are at 28. Hopefully Reid will continue with his progress today and have a good night.
6:00pm: Reid was turned over on his back and is now only on 60% oxygen. We were nervous about him getting flippped but he seems to be handling it well.
2:45pm: We just had a gross meal at the hospital cafeteria and made our way up to Reid's room. Pleasantly surprised, he is at 70% oxygen and still sat'ing in the 96 to 98 range. His BPM is at 28 and is pressure at 33. The cultures have still not grown anything and he has been cleared of the respiratory viruses (RSV, H1N1, etc). This is good, but strange that they can't pinpoint what has caused this whole turn of events. But as long as he is still trending in the right direction, I am not going to get overly concerned.
9:00am: We aren't trying to get too excited just yet (as we know what happens when you get excited), but Reid had a decent night last night and they were able to wean his oxygen down to 83%. When we called this morning, the doctors were making rounds, so our call was very short. They did further wean some of the pressures and BPM on the vent, but we aren't sure what they were set to. Cultures haven't come back yet, so we are anxiously awaiting the results. More to come later this morning...
Sunday, January 3, 2010
Saturday, January 2, 2010
11:20pm: I just called into the NICU and the nurse was putting in a new IV (his had fallen out) so I didn't get to talk to her, but the lady who answered the phone was able to get an update for me...
As a little background, early this morning, before we got to the hospital, Reid was on his back and was only sat'ing in the low 70s with 100% oxygen. Knowing that Reid loves being on his belly, they flipped him over and he immediately started sat'ing in the mid-80s (preemies with chronic lung disease oxygenate better on their stomachs for some odd reason). The bad part about being on their stomach is that they can't be kept there for extended periods of time as they start to develop bed sores and the tissue on their knees start to break down. To help battle this, they had put a very thin, pliable, clear type material on his knees to help protect as they knew he would most likely be there for awhile. Well, when we called at 9:15 tonight, they were about to flip him over onto his back again, and I just felt the stress starting to mount...
The good news was that he tollerated the flip very well and they change his bed lenins at the same time (he had drewled all over the other ones all day long). He maintained his saturations and they were even able to wean the oxygen down to 98% as he had been sat'ing in the 96 to 98 range!!!
The plan for tonight is to keep him fairly sedated. Normally, the dose of morphine and nurcuron should keep him immobile for about 2 hours, and they are now starting to notice him moving about 30-40 minutes into it. He has developed a strong tolerance to these meds and are having to give it to him more frequently. I am not sure if there are any side effect of doing this as these drugs are fairly safe for him, but the nurse this morning said that if we were to have the amount of drugs that he was getting, we would be knocked out for days. Don't know if that is a good or bad thing, but he is a fighter and is not giving up on us.
He worked really hard today and even though he was only able to gain a reduction of 2% on his oxygen requirements, that is a huge win in my book!
6:20pm: blood gas came back good. CO2 was at 39, pH came down to 7.42 and his PaO2 was at 63. Because of the good numbers, they have lowered his BPM to 40. If everything continues to look good, next gas won't be until 8:30. Current saturations are at 95 and holding steady - he did just get a dose of morphine, nucuron and ativan so he is out of it. He was awake for a good thirty minutes prior to the last dose, so we were able to see him move around and open his eyes.
5:30pm: I won't say that Reid has stabilized just yet, but he has had some very minor improvements and a fairly quiet afternoon. When we got in this morning, his saturations were in the low to mid 80s on 100% oxygen. He is currently satting in the low to mid 90s. They have made numerous changes on the vent as they have been over venting him (pulling his CO2 off). His CO2 readings have been about 30 which is causing his pH to go a little high. Without trying to rock the boat, they are taking very small steps. Currently, his PEEP is at 9, Pisp/pressure at 35, and bpm at 42. They are taking another gas here in a few minutes and hoping that his CO2 will go back up and his pH down. Current CO2 is 29 and current pH is at 7.55.
Reid was running a 100.2 degree temperature earlier and has now dropped a little low. This would be a sign of another infection, but the cultures will not be back until tomorrow morning at the earliest. They have sent off every culture possible (urine, blood, mucus, etc) and are testing for the whole gamut of infections and viruses (RSV, H1N1, etc). They have him on a very broad set of antibiotics right now and will tailor them down when and if a culture comes back positive for something.
Reid had a catheter put in about an hour ago. They had noticed a slight decrease in urine output with all of the medicines that he is on, so they wanted to make sure that with all the fluids he is also getting that he does get a chance to get rid of them and not cause and unnecessary pressures in his body.
Anyway, that is about it for now... Just a waiting game for now, but Dr. Moore said that he is silently happy right now with the small steps that Reid has made today.
11:30am: Dr. Moore just called and said that Reid is up to 100% oxygen and he is fairly concerned with where Reid is heading. They performed another ECHO to see if there was an issue with his PPHN and everything checked out OK. This leads him to believe that there may be another infection and has sent off for cultures. In the meantime, he has stopped feeds and back up 100% on the hyperal, increased his sedative (morphine), gave him a dose of paralytic (nurcuron) and started stress-level hydrocortisone. The vent is back up to 60 bpm. His left lung seems to be opened up and the right lung is still partially collapsed. Dr. Moore's biggest concerns is that if there isn't an infection, that this is purely a fault of his lungs. He would like to see some improvement within 24 hours and will closely monitor the cultures and then we will go from there.
10:00am: I wish I had better news, but Reid's status really hasn't changed. We called a couple of times over the night and again this morning, and he is requiring near 100% oxygen. As of 9:45am, he was at 99%. The doctors are still making their rounds and have yet to get to Reid, so we will call back in a little bit to see if they are going to make any adjustments. We were praying so hard for a good night last night, but unfortunately it didn't happen.
As a little background, early this morning, before we got to the hospital, Reid was on his back and was only sat'ing in the low 70s with 100% oxygen. Knowing that Reid loves being on his belly, they flipped him over and he immediately started sat'ing in the mid-80s (preemies with chronic lung disease oxygenate better on their stomachs for some odd reason). The bad part about being on their stomach is that they can't be kept there for extended periods of time as they start to develop bed sores and the tissue on their knees start to break down. To help battle this, they had put a very thin, pliable, clear type material on his knees to help protect as they knew he would most likely be there for awhile. Well, when we called at 9:15 tonight, they were about to flip him over onto his back again, and I just felt the stress starting to mount...
The good news was that he tollerated the flip very well and they change his bed lenins at the same time (he had drewled all over the other ones all day long). He maintained his saturations and they were even able to wean the oxygen down to 98% as he had been sat'ing in the 96 to 98 range!!!
The plan for tonight is to keep him fairly sedated. Normally, the dose of morphine and nurcuron should keep him immobile for about 2 hours, and they are now starting to notice him moving about 30-40 minutes into it. He has developed a strong tolerance to these meds and are having to give it to him more frequently. I am not sure if there are any side effect of doing this as these drugs are fairly safe for him, but the nurse this morning said that if we were to have the amount of drugs that he was getting, we would be knocked out for days. Don't know if that is a good or bad thing, but he is a fighter and is not giving up on us.
He worked really hard today and even though he was only able to gain a reduction of 2% on his oxygen requirements, that is a huge win in my book!
6:20pm: blood gas came back good. CO2 was at 39, pH came down to 7.42 and his PaO2 was at 63. Because of the good numbers, they have lowered his BPM to 40. If everything continues to look good, next gas won't be until 8:30. Current saturations are at 95 and holding steady - he did just get a dose of morphine, nucuron and ativan so he is out of it. He was awake for a good thirty minutes prior to the last dose, so we were able to see him move around and open his eyes.
5:30pm: I won't say that Reid has stabilized just yet, but he has had some very minor improvements and a fairly quiet afternoon. When we got in this morning, his saturations were in the low to mid 80s on 100% oxygen. He is currently satting in the low to mid 90s. They have made numerous changes on the vent as they have been over venting him (pulling his CO2 off). His CO2 readings have been about 30 which is causing his pH to go a little high. Without trying to rock the boat, they are taking very small steps. Currently, his PEEP is at 9, Pisp/pressure at 35, and bpm at 42. They are taking another gas here in a few minutes and hoping that his CO2 will go back up and his pH down. Current CO2 is 29 and current pH is at 7.55.
Reid was running a 100.2 degree temperature earlier and has now dropped a little low. This would be a sign of another infection, but the cultures will not be back until tomorrow morning at the earliest. They have sent off every culture possible (urine, blood, mucus, etc) and are testing for the whole gamut of infections and viruses (RSV, H1N1, etc). They have him on a very broad set of antibiotics right now and will tailor them down when and if a culture comes back positive for something.
Reid had a catheter put in about an hour ago. They had noticed a slight decrease in urine output with all of the medicines that he is on, so they wanted to make sure that with all the fluids he is also getting that he does get a chance to get rid of them and not cause and unnecessary pressures in his body.
Anyway, that is about it for now... Just a waiting game for now, but Dr. Moore said that he is silently happy right now with the small steps that Reid has made today.
11:30am: Dr. Moore just called and said that Reid is up to 100% oxygen and he is fairly concerned with where Reid is heading. They performed another ECHO to see if there was an issue with his PPHN and everything checked out OK. This leads him to believe that there may be another infection and has sent off for cultures. In the meantime, he has stopped feeds and back up 100% on the hyperal, increased his sedative (morphine), gave him a dose of paralytic (nurcuron) and started stress-level hydrocortisone. The vent is back up to 60 bpm. His left lung seems to be opened up and the right lung is still partially collapsed. Dr. Moore's biggest concerns is that if there isn't an infection, that this is purely a fault of his lungs. He would like to see some improvement within 24 hours and will closely monitor the cultures and then we will go from there.
10:00am: I wish I had better news, but Reid's status really hasn't changed. We called a couple of times over the night and again this morning, and he is requiring near 100% oxygen. As of 9:45am, he was at 99%. The doctors are still making their rounds and have yet to get to Reid, so we will call back in a little bit to see if they are going to make any adjustments. We were praying so hard for a good night last night, but unfortunately it didn't happen.
Friday, January 1, 2010
5:30pm: A pretty quiet day in the NICU today. Reid was on 92% oxygen when we got here today, but has since been flipped onto his belly (which he loves) and is now at 86%. We were able to look at his xray today and it appears that both upper portions of his lungs are collapsed. They have increased the PEEP (pressure) to 8 on the vent in hopes to open them up, but not sure it is working. They just gave him a bolus of morphine and he is now three sheets to the wind.
Just a very somber day today. It is a beautiful day outside and we saw lots of families riding their bikes, strolling along in the park and, in general, enjoying their new years day. Wish that we had something more to be excited about and could be out there enjoying the day too, but I guess we will try for next year. Anyone as interested in joining us for hospital cafeteria food for new years dinner? Haha. :)
10:30am: I wish that when I woke up this morning I felt happy about it being the new year, but I think that Kristen and I are just so emotionally drained with Reid's situation that it is hard to get excited about anything right now. Thanksgiving, Christmas and now New Years have come and gone and for the life of us, we can't even start to remember where all of this time has gone. Reminiscing over 2009, I told Kristen last night that 2009 was not only the best year of my life with Reid being born, but it was also the worst year of my life with what we have had to go through (between Kristen's horrible pregnancy and now Reid's fight with his lung disease). We can only hope that God brings us a better 2010 and Reid is able to fight off his sickness. Reid is such a beautiful, happy baby and continues to prove that he is a strong fighter... he just deserves so much more than what he was dealt.
Last night proved to be another difficult night as Reid's oxygen requirements hovered between 80 and 100%. At 10pm, they had finally weaned him off his morphine and have now started the methadone (a milder sedative) that they will use to get Reid off of all pain killers. They are giving boluses of morphine when they think that he really needs it, but they are trying hard to get him off of everything. I think he is just much more aware of what is going on now and is very agitated and is not feeling well. Because of this, he is requiring much more support. His bpm is still at 53 and have not touched any of the settings on the vent other than his oxygen amounts.
We are starting to get concerned that Reid is not responding well over the past few days. Realistically, he should be "healed" from the surgery and should not be experiencing any further pain from it. Talking to Dr. Moore yesterday, he said that Reid's only short term goal right now is to get him off the vent...they aren't even concerned with his hernias right now and just need to get the tube out of his mouth. The longer he stays on the vent, the further damage it can do to his lungs. If he continues at this pace, after 2 weeks, they may look at giving him a 3 to 5 day treatment of dexamethasone. This steroid has a lot of potential negative side effects (mostly impacting brain growth), so it is used with caution. Dr. Moore was quick to point out that the studies on this drug were from many years ago where doctors commonly used this drug for 42 days in a row. Nonetheless, it is not something that we want to have to use, but if it is the only way for Reid to get off the vent, we may have to go down that path.
Reid had another eye exam yesterday and it appears that laser surgery may be in the near future. I think this last exam showed some small growth in the wrong direction and will do another follow up in 7 days (next Thursday). This doesn't mean that he will definitely have the surgery, just that it is probably more likely than it was last week. Talking to Dr. Moore yesterday though, he said that babies usually stop having ROP issues when they are 40 to 45 weeks corrected gestational age. Reid is 43 weeks as of this past Wednesday. Maybe this is part of my wishful thinking, but if Reid can hold on for another couple of weeks, maybe we are out of the woods???
Hernia surgery seems to be the least of doctors concerns right now and they honestly only talk about it when we bring it up.
As far as timeline goes, I asked Dr. Moore if he could pull out his crystal ball and predict the future for us. We want to know when Reid will be able to come home, but we also realize that whatever he said would be an educated guess. Kristen and I had set a date of April 2010 as to when he would be able to come home by, and when we told Dr. Moore of this date, he said it probably wasn't too far off. Depending on how quick Reid can get off the vent, it could be a little sooner. But in the same breath, he said it could be later than that. So, we are sticking April in the ground as our target date even though that is four months away... meaning that we are only half way there as Reid turns 4 months old tomorrow.
Reid was weighed again last night and is in the neighborhood of 8.5 lbs. He probably got wiped down fairly good too as he had thrown up all over himself last night. They had to change out his NeoBar that holds his breathing tube in place as the adhesive had been fairly soiled. He did not have any further vomiting episodes last night, but that may be partly due to the fact that they put a tube down his stomach to vent and pull out any remaining fluids. They got minimal brown fluid and thought that he had probably thrown up most of it on his own.
Anyway, I could probably go on and on with what Dr. Moore, Kristen and I covered in the hour and a half conference yesterday, but a lot of it was hypothetical, what-if's, worse case scenarios, etc that are not fun topics to discuss. He wasn't suggesting that Reid was going down any of these paths, but he wanted us to be aware of all of the various roads that we may end up crossing. He said it is better to be aware of them up front than get into a sticky situation and not be prepared for it if the time came. I will spare you some of the details as I am hoping to get some of the visuals out of my head this morning.
All I want to do today is crawl into bed, watch movies and make my mind numb to the world. Dealing with this situation on a daily basis wears on your mind and body and we so desperately need Reid to have a break one of these days. Please let 2010 be OUR year!
Just a very somber day today. It is a beautiful day outside and we saw lots of families riding their bikes, strolling along in the park and, in general, enjoying their new years day. Wish that we had something more to be excited about and could be out there enjoying the day too, but I guess we will try for next year. Anyone as interested in joining us for hospital cafeteria food for new years dinner? Haha. :)
10:30am: I wish that when I woke up this morning I felt happy about it being the new year, but I think that Kristen and I are just so emotionally drained with Reid's situation that it is hard to get excited about anything right now. Thanksgiving, Christmas and now New Years have come and gone and for the life of us, we can't even start to remember where all of this time has gone. Reminiscing over 2009, I told Kristen last night that 2009 was not only the best year of my life with Reid being born, but it was also the worst year of my life with what we have had to go through (between Kristen's horrible pregnancy and now Reid's fight with his lung disease). We can only hope that God brings us a better 2010 and Reid is able to fight off his sickness. Reid is such a beautiful, happy baby and continues to prove that he is a strong fighter... he just deserves so much more than what he was dealt.
Last night proved to be another difficult night as Reid's oxygen requirements hovered between 80 and 100%. At 10pm, they had finally weaned him off his morphine and have now started the methadone (a milder sedative) that they will use to get Reid off of all pain killers. They are giving boluses of morphine when they think that he really needs it, but they are trying hard to get him off of everything. I think he is just much more aware of what is going on now and is very agitated and is not feeling well. Because of this, he is requiring much more support. His bpm is still at 53 and have not touched any of the settings on the vent other than his oxygen amounts.
We are starting to get concerned that Reid is not responding well over the past few days. Realistically, he should be "healed" from the surgery and should not be experiencing any further pain from it. Talking to Dr. Moore yesterday, he said that Reid's only short term goal right now is to get him off the vent...they aren't even concerned with his hernias right now and just need to get the tube out of his mouth. The longer he stays on the vent, the further damage it can do to his lungs. If he continues at this pace, after 2 weeks, they may look at giving him a 3 to 5 day treatment of dexamethasone. This steroid has a lot of potential negative side effects (mostly impacting brain growth), so it is used with caution. Dr. Moore was quick to point out that the studies on this drug were from many years ago where doctors commonly used this drug for 42 days in a row. Nonetheless, it is not something that we want to have to use, but if it is the only way for Reid to get off the vent, we may have to go down that path.Reid had another eye exam yesterday and it appears that laser surgery may be in the near future. I think this last exam showed some small growth in the wrong direction and will do another follow up in 7 days (next Thursday). This doesn't mean that he will definitely have the surgery, just that it is probably more likely than it was last week. Talking to Dr. Moore yesterday though, he said that babies usually stop having ROP issues when they are 40 to 45 weeks corrected gestational age. Reid is 43 weeks as of this past Wednesday. Maybe this is part of my wishful thinking, but if Reid can hold on for another couple of weeks, maybe we are out of the woods???
Hernia surgery seems to be the least of doctors concerns right now and they honestly only talk about it when we bring it up.
As far as timeline goes, I asked Dr. Moore if he could pull out his crystal ball and predict the future for us. We want to know when Reid will be able to come home, but we also realize that whatever he said would be an educated guess. Kristen and I had set a date of April 2010 as to when he would be able to come home by, and when we told Dr. Moore of this date, he said it probably wasn't too far off. Depending on how quick Reid can get off the vent, it could be a little sooner. But in the same breath, he said it could be later than that. So, we are sticking April in the ground as our target date even though that is four months away... meaning that we are only half way there as Reid turns 4 months old tomorrow.
Reid was weighed again last night and is in the neighborhood of 8.5 lbs. He probably got wiped down fairly good too as he had thrown up all over himself last night. They had to change out his NeoBar that holds his breathing tube in place as the adhesive had been fairly soiled. He did not have any further vomiting episodes last night, but that may be partly due to the fact that they put a tube down his stomach to vent and pull out any remaining fluids. They got minimal brown fluid and thought that he had probably thrown up most of it on his own.
Anyway, I could probably go on and on with what Dr. Moore, Kristen and I covered in the hour and a half conference yesterday, but a lot of it was hypothetical, what-if's, worse case scenarios, etc that are not fun topics to discuss. He wasn't suggesting that Reid was going down any of these paths, but he wanted us to be aware of all of the various roads that we may end up crossing. He said it is better to be aware of them up front than get into a sticky situation and not be prepared for it if the time came. I will spare you some of the details as I am hoping to get some of the visuals out of my head this morning.
All I want to do today is crawl into bed, watch movies and make my mind numb to the world. Dealing with this situation on a daily basis wears on your mind and body and we so desperately need Reid to have a break one of these days. Please let 2010 be OUR year!
Thursday, December 31, 2009
8:00pm: We had a long visit with Reid today as we got there at 2 and just now getting home at 8. I don't have time to post a long blog but there is a ton that I want to put up here, so it might have to wait until later tonight or tomorrow morning. Quickly though:
- We met with Dr. Moore for an hour and a half today, so there are a lot of details I want to share and document.
- Reid had his eye exam this afternoon and will have a follow up next week (laser surgery looks to be in our near future).
- Kristen finally got to hold Reid today after almost 2.5 weeks and was able to have him snuggle in her arms for about an hour.
- We had a little scare at the end of our visit when Reid decided to vomit three or four times (fairly large amounts) --- the vomit was brown in color and appeared to be old blood. The medicines that he is on and the stress that he is under can cause ulcers. He had a quick xray and everything appeared normal, so there wasn't a whole lot of concern. He will be put on an Zantac to help with this, but while it was all happening, he had his eyes open and his oxygen saturations stayed in the mid-90s. Maybe after he got it all up, he felt a little better?
Tuesday, December 29, 2009
10:00pm: Not much changed today on the vent settings, but Reid had a fairly stable day. Talking to Dr. Moore, they think that the previous change from pressure support to volume support had a fairly significant impact on Reid. With the change back to pressure support, they will keep it there for the remainder of the time. As of 9:45 tonight, the only change that had been made was the level of oxygen, which was at 60%. His gas tests looked good (pH of 7.31 and CO2 of 67).Reid had an ECHO done today and they had seen some improvements with the hypertension. Blood flow looked good, the walls of his heart looked good (no bowing of the walls) and Dr. Moore was pleased with the results. He suggested that it was probably a combination of the PDA surgery as well as the use of the NO. With that being said, they are increasing the dose of Sildenafil (Viagra) --- they will be going up by about .2mg a day until he reaches the max dose of 1mg per kilo (3mg). They have to be careful with how much they increase over a short period of time as there can be some adverse side effects with dropping of the systemic blood pressure. He assumed that Reid would eventually reach a level where they would need to back off for a day or two on the increase and let him adjust before going up some more. Research has shown this drug to do wonders for Reid's condition and this is something that he would be able to go home on if needed.
We talked to Reid's nurse today (Barbara, our favorite Egleston nurse) in regards to how he compares to a newborn baby. Much to our surprise, she said that he was probably just short of being equal to a full term baby. I would have thought that over the past 4 months of his life that he would may be be a little up on a full term baby, but I guess I was wrong. She gave us a sheet of paper of things that we can expect for Reid to be able to do and things that we should do to help stimulate his brain. One of the suggestions was for us to get a helium balloon that shines, moves and has good contrast of colors for his bedside. Thomas the Train did just the job for us. :)Reid was on 5cc per hour feeds today and seemed to continue to handle it well. They currently have his feeding tube sitting below the bottom of his stomach and in top of his intestines. They are hoping that this will help with reflux (which causes him to have some breathing issues). Once they get to full feeds (~18cc per hour), they will pull the feeding tube out just a little bit so that it sits in his stomach to see how he does. They are anxious to see how the feedings are going to impact his hernias. To date, they have not seen the hernia since they stopped feeding him about 2 weeks ago. And if they show up again (which I am expecting them to do), they will monitor it on a daily basis and only do surgery if they are difficult to reduce. I think I may have written this yesterday or the day before, but the hernias are the least of their concern and want to purely focus on his respiratory issues as long as they can without an additional surgery coming in his way.
Tonight, Reid had his first bowel movement in about 2 weeks and it was a good one! They had given him a little sliver of glycerine to see what would happen... and he was able to make the nurse to change his sheets. Atta boy. I am telling you, this boy knows how to eat and poop with the best of them. :)
OK, bed time for me. I have an early morning conference call with India, a light day at work and then it is time to relax again and start my New Years vacation (I took Thursday off).
11:45am: Reid had one of the worst nights he has had in awhile... Yesterday afternoon, he started going downhill a little and continued through the night. His CO2 gasses were creeping from the upper 60s all the way into the 90s last night. They have adjusted the vent settings: changed the breaths per minute from 25 to 60 bpm; adjusted his O2 from the 50-60 range to 70%; and have switched from the vent giving volume (15 cc) to giving a particular pressure (not sure what the pressure is set at though). From what I understand, the vent will provide enough air/oxygen per breath to create a certain pressure in the lungs, rather than giving a set amount of volume every time. I assume this is to help blow off the CO2 from his lungs. They had switched from pressure to volume about 2 or 3 days ago... close to the same time that they had removed the Nitric Oxide. And speaking of the NO, since that was removed, they are going to probably increase the dose of Sildenafil today to help compensate (they both do the same job with the dilation of the vessels in the lungs). An ECHO this morning showed that there was still some slight hypertension and I am assuming this is from the removal of the NO as well. When asking the nurse as to why this all happened.... "it is just part of Chronic Lung Disease. He will have good days and he will have bad days". Anyway... because of the excess of CO2, Reid's body is working harder to remove it even though the vent is trying to do the same thing. Because of this, they have resumed the morphine drip and giving a supplemental bolus (the administration of a drug, medication or other substance in the form of a single, large dose) every 4 hours. Every 6 hours, he continues to receive the Ativan. Big babies just don't like being messed with.
Well, Kristen's folks just left for their drive back to Houston... so I guess it is time for us to get ready to head to the hospital. I didn't visit Reid yesterday and I am now anxious to see him. Maybe the step backwards was in retaliation to me not visiting him? A little temper tantrum of sorts?
Monday, December 28, 2009
6:00pm: I have gone almost an entire day without blogging, so I guess that means it is time to put my fingers to the keyboard. Kristen and her mom went to the hospital today... I was going to trail closely behind them, but decided to hang back and run a few errands that I have been wanting to do. Not a whole lot of progress today, in fact, they had to go up on the breaths per minute to 30 due to a bad CO2 gas. They suctioned him out and they were going to do a subsequent gas test in a few hours to see if that would make a change.
Kristen met with the doctor today to figure out what the game plan was. They have increased his feedings to 5cc every hour and are going to work up to full feeds over the next few days. They are curious to see if this max feeds will cause his hernias to show up again. If they do, he will take action and probably do surgery.
However, if they don't, he is going to wean Reid from the vent and get him back to Cobb hospital. He really doesn't want to do the surgery until Reid is a little larger and a little more stable. Dr. Moore thought that he could probably wean Reid from the vent faster than what he is doing right now, but he is very focused on doing things the right way and taking some time doing it.
They took a subsequent culture today to test for the three bacterias and if they don't yield anything in 24 hours, Reid will come off the antibiotics tomorrow. They have further weaned the morphine and hope to have him off it within the next day or so. Nurses don't think that he is in pain anymore and will give the Ativan every 6 hours to help with his agitation. As soon as the morphine is done, that will free up the need for one of the peripheral IVs (the one in his left ankle looks like it is about go bad soon anyway).
Reid was weighed again last night... 7.98 lbs. So... we essentially have an 8 pound baby on our hands. In two weeks, he gained about 1.25 pounds.
Erica and David left this morning and Kristen's folks will leave tomorrow. I will start work again tomorrow, so the holidays are essentially over and we are back to the grind again. Kristen starts work next Thursday and will be her first time at work in about 6 months - will probably be a hard adjustment for her. The one positive thing about her going back to work, besides an additional paycheck, is that she only works on Tuesdays and Thursdays. Her daily visits to the hospital shouldn't be too impacted.
Anyway, I need to get back to watching a sloppy UGA bowl game, so I will wrap it up here. Oh, and the picture that I posted on today's blog is of Reid sucking on a vanilla flavored pacifier. As if he didn't have enough in his mouth and nose already...
Kristen met with the doctor today to figure out what the game plan was. They have increased his feedings to 5cc every hour and are going to work up to full feeds over the next few days. They are curious to see if this max feeds will cause his hernias to show up again. If they do, he will take action and probably do surgery.
However, if they don't, he is going to wean Reid from the vent and get him back to Cobb hospital. He really doesn't want to do the surgery until Reid is a little larger and a little more stable. Dr. Moore thought that he could probably wean Reid from the vent faster than what he is doing right now, but he is very focused on doing things the right way and taking some time doing it.They took a subsequent culture today to test for the three bacterias and if they don't yield anything in 24 hours, Reid will come off the antibiotics tomorrow. They have further weaned the morphine and hope to have him off it within the next day or so. Nurses don't think that he is in pain anymore and will give the Ativan every 6 hours to help with his agitation. As soon as the morphine is done, that will free up the need for one of the peripheral IVs (the one in his left ankle looks like it is about go bad soon anyway).
Reid was weighed again last night... 7.98 lbs. So... we essentially have an 8 pound baby on our hands. In two weeks, he gained about 1.25 pounds.
Erica and David left this morning and Kristen's folks will leave tomorrow. I will start work again tomorrow, so the holidays are essentially over and we are back to the grind again. Kristen starts work next Thursday and will be her first time at work in about 6 months - will probably be a hard adjustment for her. The one positive thing about her going back to work, besides an additional paycheck, is that she only works on Tuesdays and Thursdays. Her daily visits to the hospital shouldn't be too impacted.
Anyway, I need to get back to watching a sloppy UGA bowl game, so I will wrap it up here. Oh, and the picture that I posted on today's blog is of Reid sucking on a vanilla flavored pacifier. As if he didn't have enough in his mouth and nose already...
Sunday, December 27, 2009
9:00pm: Reid continued to have a fairly agitated day but did make some progress on the vent. They have retracted his breaths per minute down to 25, his O2 to 50, his volume to 15 and his PEEP (pressure) to 6. They are really trying to wean him off the morphine as his pain should have subsided by now, but they are having a little difficulty with it. Since Reid isn't as "snowed" as he used to be, they are giving Ativan to take some of the edge off. He barely slept last night and much of the morning... it is as if he doesn't want to miss anyone talking or coming to visit. The nurse mentioned today that even if she tip-toed into the room, Reid would open his eyes and look in the direction of her walking in the room. The Ativan lets him relax and calm down and allows him to fall asleep.
Dr. Moore is back in tomorrow and we are anxious to see what the game plan is. His hernias have not been an issue over the past 4 or 5 days, so I don't think there is any pressing need for him to have surgery. They want to make sure that his respiratory issues can stabilize before moving forward, but I am going to be adamant that I am not leaving Egleston until they have done the surgery. I do not want him to be transported back to Cobb only to start having hernia issues all over again and then need to be transported back. In addition, the sooner that he can have the surgery, the sooner he can come off the ventilator... I don't want to be in a holding pattern with him on the vent just waiting for the time when the hernias become difficult to reduce.
10:30am: I was just reading through the blog this morning and I realized that I never posted yesterday that they were able to successfully get Reid off of the Nitric Oxide. They pulled it at 10:30am yesterday and with a little bump in O2 support, he was able to handle it.
9:45am: Reid had a very grumpy night last night and didn't sleep all that much. I think that with the low amounts of morphine and the fact that his body is getting used to it, he is becoming very irritable as he knows what is going on. When I called in this morning, his oxygen was at 50% and they were talking about starting some small feeds to get his gut working again. I think he is a hungry little man.
Dr. Moore is back in tomorrow and we are anxious to see what the game plan is. His hernias have not been an issue over the past 4 or 5 days, so I don't think there is any pressing need for him to have surgery. They want to make sure that his respiratory issues can stabilize before moving forward, but I am going to be adamant that I am not leaving Egleston until they have done the surgery. I do not want him to be transported back to Cobb only to start having hernia issues all over again and then need to be transported back. In addition, the sooner that he can have the surgery, the sooner he can come off the ventilator... I don't want to be in a holding pattern with him on the vent just waiting for the time when the hernias become difficult to reduce.
10:30am: I was just reading through the blog this morning and I realized that I never posted yesterday that they were able to successfully get Reid off of the Nitric Oxide. They pulled it at 10:30am yesterday and with a little bump in O2 support, he was able to handle it.
9:45am: Reid had a very grumpy night last night and didn't sleep all that much. I think that with the low amounts of morphine and the fact that his body is getting used to it, he is becoming very irritable as he knows what is going on. When I called in this morning, his oxygen was at 50% and they were talking about starting some small feeds to get his gut working again. I think he is a hungry little man.
Saturday, December 26, 2009
10:15am: Not much is new with Reid this morning other than the fact that he was bathed and weighed last night. We now have a 7.9 lb baby that smells good. :) He remains on 52% oxygen and still trying to further wean him. We will be going this afternoon to visit him at some point...
Oh, and by the way, a big thanks to Cobb Hospital for the $700,000 bill that we received in the mail the other day for Reid's stay. This brings our running total to $915,000 (which doesn't include his stay at Egleston nor his surgeries). Thank goodness for insurance.
Oh, and by the way, a big thanks to Cobb Hospital for the $700,000 bill that we received in the mail the other day for Reid's stay. This brings our running total to $915,000 (which doesn't include his stay at Egleston nor his surgeries). Thank goodness for insurance.
Friday, December 25, 2009
9:00am: I wish it felt a little more like Christmas today. It has been a busy last couple of weeks and haven't really had the chance to soak in the holidays, but I am going to try my darnedest to get in the mood. Maybe this afternoon, when we see our niece and nephews open presents, it can inspire me to remember how Christmas should feel. Nonetheless, I hope that Santa brought everyone what they had wished for! Santa brought us a wide-awake son that we have yet been able to see. I imagine that we will open presents, eat some breakfast and may our way into the NICU. I guess Reid has been opening his eyes fairly regularly and checking out his new digs. :)
His night last night wasn't as good as the one before, but I think it probably has to deal with the fact that he is probably a little more aware of what is going on. I am sure that there is quite a bit of stress for him to wake up from what he has had done to him over the past week and a half... This morning when we woke up, his O2 was at 52 (was at 56 when we went to bed around 1:30 last night) and his CO2 levels were in the "normal" range.
12:30am: Merry Christmas! We just got in from a candlelight service and a rainy drive home. About time for bed, but wanted to put up a quick note before the day was over. Reid's paralytic and anesthesia finally wore off and opened his eyes tonight for the nurse (the first time in over a week and a half), just long enough to get hit with another dose of morphine and it was good night all over again. I guess he had a "coming apart" around 7 tonight after they had given him his Lasix to help rid some of the water retention. He wet through his diaper, through his snuggly and the blankets on his bed. And if you know Reid, you know he does not like to be wet!!! They had to turn his O2 up to about 70% but had been weaning it since. Guess this goes to show that even with all of this progress today, we are not out of the woods and he still requires substantial support at times.
Earlier this afternoon, they attempted to get him off the NO, but didn't have success. He was at 1 ppm and when they shut it off, his saturations went from 93 down to 89. Since the orders call for him to be in the 92 to 98 range, they bumped up the O2 to 50 and still did not have success. And as soon as they put the NO back on, his sat's were back around 95/96. Amazing what that gas can do and how so very little goes a long way. I assume they will try to shut it off again tomorrow.
Anyway, bed time for us... We hope that everyone has a Merry Christmas. For all of those at the Cobb NICU, we thank you so very much for everything that you have helped us with over the past few months. While Reid didn't make it home in time for Christmas, we still have a lot to be thankful for this year and we couldn't have done it without you!
His night last night wasn't as good as the one before, but I think it probably has to deal with the fact that he is probably a little more aware of what is going on. I am sure that there is quite a bit of stress for him to wake up from what he has had done to him over the past week and a half... This morning when we woke up, his O2 was at 52 (was at 56 when we went to bed around 1:30 last night) and his CO2 levels were in the "normal" range.
12:30am: Merry Christmas! We just got in from a candlelight service and a rainy drive home. About time for bed, but wanted to put up a quick note before the day was over. Reid's paralytic and anesthesia finally wore off and opened his eyes tonight for the nurse (the first time in over a week and a half), just long enough to get hit with another dose of morphine and it was good night all over again. I guess he had a "coming apart" around 7 tonight after they had given him his Lasix to help rid some of the water retention. He wet through his diaper, through his snuggly and the blankets on his bed. And if you know Reid, you know he does not like to be wet!!! They had to turn his O2 up to about 70% but had been weaning it since. Guess this goes to show that even with all of this progress today, we are not out of the woods and he still requires substantial support at times.
Earlier this afternoon, they attempted to get him off the NO, but didn't have success. He was at 1 ppm and when they shut it off, his saturations went from 93 down to 89. Since the orders call for him to be in the 92 to 98 range, they bumped up the O2 to 50 and still did not have success. And as soon as they put the NO back on, his sat's were back around 95/96. Amazing what that gas can do and how so very little goes a long way. I assume they will try to shut it off again tomorrow.
Anyway, bed time for us... We hope that everyone has a Merry Christmas. For all of those at the Cobb NICU, we thank you so very much for everything that you have helped us with over the past few months. While Reid didn't make it home in time for Christmas, we still have a lot to be thankful for this year and we couldn't have done it without you!
Thursday, December 24, 2009
1:00pm: Reid had an awesome night and continues to have an even better day. Currently, he is on 33% O2 (12% over normal room air and the lowest he has been able to sustain for an extended period of time) and are working on bringing down his breaths per minute on the vent. They have also lowered his Nitric Oxide down to 1 ppm and hope to get him off that today. His nurcuron (paralytic) has been stopped and he is starting to move again... right now he has twitching hands and feet and occasionally moves his head back and forth. They are anxious to see how well he is going to treat not being on the paralytic, but he is still heavily medicated with morphine. Everyone seems to think that he is over the hump in terms of surgery recovery and should hopefully be moving nowhere by forward from now. His hernias were not present today but know they will be back as soon as he starts to bear down and cry when he wakes up. Right now, with where Reid is at, it is the best Christmas present we could have asked for this year. A few more days, and hopefully we will have his next surgery over with as well.
Reid has a lot of new visitors today: Grandma and Grandpa Hart (Kristen's mom and step father), Erica and David (Kristen's sister and brother-in-law) are here. He has his "A" game on and trying to impress the new family members he has not yet met. :)
Reid has a lot of new visitors today: Grandma and Grandpa Hart (Kristen's mom and step father), Erica and David (Kristen's sister and brother-in-law) are here. He has his "A" game on and trying to impress the new family members he has not yet met. :)
Wednesday, December 23, 2009
10:25pm: I talked to the nurse tonight around 9:30pm and his oxygen levels have been going up and down a little bit. He was currently at 68% but were in the process of weaning him a little bit on the vent settings. They moved the frequency down to 42 from 45. His CO2 was at 48. We are praying for a good night and will probably be calling every couple of hours to check in on him...
5:48pm: They have been able to further wean Reid on his oxygen. His 02 is down to 40% and his breath per minute is down to 42. Post-op xray supposedly looked better than it did pre-op (less mucus). Our little rock star is hanging in there...
3:45pm: Sorry for the delay in getting this blog out there, but as you can imagine, today has been a long, hectic day for us. Without wasting anymore time, I will say that Reid has passed his surgery with flying colors. The surgeons did have a few obstacles to cross with his arterial line and ended up having to 'dissect' his artery in his left arm so that they could get the line in. What this means is that they made a very small incision into the artery to get a visual on where they had to insert the line. I don't think this is all too common, but going back to my point I probably made a week ago, his arms and legs have been abused over the past 4 months. In addition to the arterial line, they had to put a larger ET tube down his throat for his ventialator. The one that he had was a little too small for this body size and he was having some air escape when the machine was taking the breaths for him.
After they got everything taken care of and under control, the surgery went fairly normal. One of the first things they have to do once they entered through his ribs was to deflate the left lung. They do this so that they can see the heart, but in Reid's condition, he didn't like his lung being messed with and started to de-sat into the upper 70s. They quickly inflated his lung and his saturations went right back up, so they ended up intermittently deflating his lung, doing a little work and then inflating it back to normal and repeated this process until they were done with surgery. This took them a little longer than normal, but it worked and they were able to place a small titanium clamp on his ductus arteriosus. His heart and lungs appeared to be functioning as normal and they sewed him back up. We had a quick chat with the surgeon in the waiting room to let us know how everything worked out - virtually no bleeding and no chest tube needed. We then walked back to the NICU where we were expecting for Reid to be and he wasn't back yet. Waiting another couple of minutes, here came Reid rolling down the hallway... About 20 minutes later, we were able to go into the NICU and check him out. His incision is about an inch and half long and starts in the middle of his side under his arm and works its way towards his back near his shoulder blade. It is probably a little bigger than what we expected it to be, but right now, nothing matters --- just make him a healthy baby!!! His oxygen settings were at 100% and a breath per minute rate of 45 and after about an hour, he was already down to 45% oxygen (only 10% more than pre-op).
So, initially, it looks like everything went as planned. He is now in the "honeymoon" period where things seem to be going OK, but from what we hear, he has 12-18 hours of good/normal behavior before they typically take a step backwards. In this sense, it may be extra respiratory help needed or maybe high blood pressure. His body needs to get used to having normal blood flow to the lungs and this can sometimes take a toll on their body. Typically after 2 days, they will start to rebound. However, knowing that Reid doesn't know how to follow the norm, we may be in for a fun ride.
Reid will stay heavily sedated and medicated for a couple days and then they will start to wean the nurcuron and morphine. Partial feeds may come back into the picture and if he is up to it, he might have his double hernia repair early next week. It is so hard to even start thinking about the next surgery after today, but it is the reason we are at Egleston and the sooner we get these things checked off our list, the sooner we make it back to Cobb Hospital, and eventually back home.
We have received so many emails, text messages and phone calls over the past few days from friends of yesteryear and friends of today and I can't say enough how blessed we are to have the family and friends that we have. We are very loved people and appreciate everything that everyone has done to help us through these tough times.
Today is a deep sigh of relief for the Elley family. :)
10:45am: Just received a call from the nurse in the operating room. They had some troubles getting an arterial line in that they needed for surgery as they needed to closely monitor his blood pressure. They are just now starting surgery and should be another 45-60 minutes before we hear any more news.
9:45am: The doctors and anesthesiologist came into Reid's room around 8:30 to start getting ready for his transport to surgery. When it was all said and done and when he was in his transport isolette, they had a train of equipment and machines that marched through the NICU, down several hallways, up an elevator and into the cold OR. If you think that the NICU is sterile and stressful, take a quick peek into the OR staging room. When we saw Reid wheeled into his room, another family was rushing into the OR where their newborn baby (born today) was undergoing a massive emergency heart surgery that was to last 6 to 7 hours and unsure of survival. It quickly puts things into perspective about the seriousness of what kids are going through while at this hospital.
We are now sitting in the waiting room anxiously waiting to hear our name called to hear the good news. I will post again when we hear something. Thank you all for your continued prayers!
Reid had another good night last night. They lowered his O2 down to 35 and further weaned the pressure on the vent (PIP set to 22 -- was at 24). His PEEP was at 7. We know that those settings are going to be short lived and are expecting him to be on heavy respiratory support in the next day or two. We are just hoping that with the progress that he has made over the past 4 days that it will do well for him.
5:48pm: They have been able to further wean Reid on his oxygen. His 02 is down to 40% and his breath per minute is down to 42. Post-op xray supposedly looked better than it did pre-op (less mucus). Our little rock star is hanging in there...
3:45pm: Sorry for the delay in getting this blog out there, but as you can imagine, today has been a long, hectic day for us. Without wasting anymore time, I will say that Reid has passed his surgery with flying colors. The surgeons did have a few obstacles to cross with his arterial line and ended up having to 'dissect' his artery in his left arm so that they could get the line in. What this means is that they made a very small incision into the artery to get a visual on where they had to insert the line. I don't think this is all too common, but going back to my point I probably made a week ago, his arms and legs have been abused over the past 4 months. In addition to the arterial line, they had to put a larger ET tube down his throat for his ventialator. The one that he had was a little too small for this body size and he was having some air escape when the machine was taking the breaths for him.
After they got everything taken care of and under control, the surgery went fairly normal. One of the first things they have to do once they entered through his ribs was to deflate the left lung. They do this so that they can see the heart, but in Reid's condition, he didn't like his lung being messed with and started to de-sat into the upper 70s. They quickly inflated his lung and his saturations went right back up, so they ended up intermittently deflating his lung, doing a little work and then inflating it back to normal and repeated this process until they were done with surgery. This took them a little longer than normal, but it worked and they were able to place a small titanium clamp on his ductus arteriosus. His heart and lungs appeared to be functioning as normal and they sewed him back up. We had a quick chat with the surgeon in the waiting room to let us know how everything worked out - virtually no bleeding and no chest tube needed. We then walked back to the NICU where we were expecting for Reid to be and he wasn't back yet. Waiting another couple of minutes, here came Reid rolling down the hallway... About 20 minutes later, we were able to go into the NICU and check him out. His incision is about an inch and half long and starts in the middle of his side under his arm and works its way towards his back near his shoulder blade. It is probably a little bigger than what we expected it to be, but right now, nothing matters --- just make him a healthy baby!!! His oxygen settings were at 100% and a breath per minute rate of 45 and after about an hour, he was already down to 45% oxygen (only 10% more than pre-op). So, initially, it looks like everything went as planned. He is now in the "honeymoon" period where things seem to be going OK, but from what we hear, he has 12-18 hours of good/normal behavior before they typically take a step backwards. In this sense, it may be extra respiratory help needed or maybe high blood pressure. His body needs to get used to having normal blood flow to the lungs and this can sometimes take a toll on their body. Typically after 2 days, they will start to rebound. However, knowing that Reid doesn't know how to follow the norm, we may be in for a fun ride.
Reid will stay heavily sedated and medicated for a couple days and then they will start to wean the nurcuron and morphine. Partial feeds may come back into the picture and if he is up to it, he might have his double hernia repair early next week. It is so hard to even start thinking about the next surgery after today, but it is the reason we are at Egleston and the sooner we get these things checked off our list, the sooner we make it back to Cobb Hospital, and eventually back home.
We have received so many emails, text messages and phone calls over the past few days from friends of yesteryear and friends of today and I can't say enough how blessed we are to have the family and friends that we have. We are very loved people and appreciate everything that everyone has done to help us through these tough times.
Today is a deep sigh of relief for the Elley family. :)
10:45am: Just received a call from the nurse in the operating room. They had some troubles getting an arterial line in that they needed for surgery as they needed to closely monitor his blood pressure. They are just now starting surgery and should be another 45-60 minutes before we hear any more news.
9:45am: The doctors and anesthesiologist came into Reid's room around 8:30 to start getting ready for his transport to surgery. When it was all said and done and when he was in his transport isolette, they had a train of equipment and machines that marched through the NICU, down several hallways, up an elevator and into the cold OR. If you think that the NICU is sterile and stressful, take a quick peek into the OR staging room. When we saw Reid wheeled into his room, another family was rushing into the OR where their newborn baby (born today) was undergoing a massive emergency heart surgery that was to last 6 to 7 hours and unsure of survival. It quickly puts things into perspective about the seriousness of what kids are going through while at this hospital. 
We are now sitting in the waiting room anxiously waiting to hear our name called to hear the good news. I will post again when we hear something. Thank you all for your continued prayers!Reid had another good night last night. They lowered his O2 down to 35 and further weaned the pressure on the vent (PIP set to 22 -- was at 24). His PEEP was at 7. We know that those settings are going to be short lived and are expecting him to be on heavy respiratory support in the next day or two. We are just hoping that with the progress that he has made over the past 4 days that it will do well for him.
Tuesday, December 22, 2009
5:15pm: Reid was bumped from surgery. An emergency surgery was needed on another baby and since he was an "add-on" to the schedule today, he was the first to go. He is, however, on the schedule at 8:00am tomorrow morning. Hopefully we will have better luck.
We did get a little bad news today. In addition to the E. coli and klebsiella that grew in the mucus culture, MRSA seems to reared its head. It took three days to culture and with the fact that Reid has improved so much over the past few days, they are hoping that they caught it early. What does this mean? He is now on an antibiotic for 2 weeks and is being moved into isolation where he will remain until he comes home. From what we understand, once you get it, you are always a carrier and the hospitals don't take risks and put you in isolation. Long story short, we picked the short straw again...
9:15am: Kristen just got off the phone with the surgeon so that we could provide consent to do the surgery. Sounds like the surgeons do this exact procedure quite often. The three risks of surgery are: 1) blood loss; 2) infection; 3) nerve damage. The typical amount of blood loss is about 1cc, the doctors administer antibiotics before and after surgery, and they do their best to preserve all nerves. They have Reid penciled in for a 3:30pm surgery today, but is subject to change.
6:45am: Reid will have surgery today and is listed as an "add-on" in the OR. This means that there is no definitive time as to when he will be admitted... so we will be sitting around and waiting to hear something. They did say, however, that it will most likely be later this afternoon. No other news to report... he had a good night again and seems to be very stable. They didn't touch any of his vent settings or change any of his medication.
We did get a little bad news today. In addition to the E. coli and klebsiella that grew in the mucus culture, MRSA seems to reared its head. It took three days to culture and with the fact that Reid has improved so much over the past few days, they are hoping that they caught it early. What does this mean? He is now on an antibiotic for 2 weeks and is being moved into isolation where he will remain until he comes home. From what we understand, once you get it, you are always a carrier and the hospitals don't take risks and put you in isolation. Long story short, we picked the short straw again...
9:15am: Kristen just got off the phone with the surgeon so that we could provide consent to do the surgery. Sounds like the surgeons do this exact procedure quite often. The three risks of surgery are: 1) blood loss; 2) infection; 3) nerve damage. The typical amount of blood loss is about 1cc, the doctors administer antibiotics before and after surgery, and they do their best to preserve all nerves. They have Reid penciled in for a 3:30pm surgery today, but is subject to change.
6:45am: Reid will have surgery today and is listed as an "add-on" in the OR. This means that there is no definitive time as to when he will be admitted... so we will be sitting around and waiting to hear something. They did say, however, that it will most likely be later this afternoon. No other news to report... he had a good night again and seems to be very stable. They didn't touch any of his vent settings or change any of his medication.
Monday, December 21, 2009
3:30pm: Here is a PDF that further explains the process of the PDA ligation: click here. And for some further reading, I found this article helpful. And for those of you that don't mind watching surgeries, here is a YouTube video actually shows the surgery (I had to stop watching as I am not sure I want to know exactly how it is going to be done on Reid).
2:00pm: Cardiology and Dr. Moore have confirmed that Reid's PDA needs to be closed for his lungs to properly heal. With that being said, they are going to ligate the PDA within the next 24 hours. Unfortunately, they will not be able to do the hernia repair at the same time as there are sterility issues. PDA ligation is considered a "clean" surgery and the hernia repair is considered "dirty" as it deals with the bowel. In addition, the PDA ligation will need to be completed in the OR (instead of bedside) due to anesthetic reasons.
Also, the antibiotics that Reid has been on for the past few days are used for pneumonia. They are not 100% convinced that it was pneumonia, but did say that it was pneumonia-like and are treating it accordingly. No wonder he was so sick. The combination of the steroids, the antibiotics and the fixing of the collapsed lung have all contributed to the success we have seen over the last three days.
Reid will answer the question as to when his hernia repair will be completed. I assume he will need at least a few days of recuperation from the PDA before they even consider the hernia repair as an option.
1:30pm: The good news is that Reid's O2 is now at 38%. The bad news is that the pulmonary hypertension is back. Not sure yet as to what they are going to do about this. My thoughts are that it may be due to the fact that they have almost completely weaned Reid off of the NO and he hasn't been increased on the Sildenafil. Not sure if there is a direct correlation there... Still no word on the surgery.
9:00am: Our little rock star had another great night. His O2 is at 40% and they were able to reduce his respiratory rate down to 19. His blood pressure medicine, dopamine, was started again yesterday for a short period of time due to his pressure being a little low. They had previously reduced his hydrocortisone which they think may have been the result of the reduction. When they increased the hydrocortisone then stopped the dopamine. His pressures seem to be OK again. We are still waiting to hear if he is going to have surgery today. His respiratory conditions clearly show that he is ready, but I imagine they will be doing an xray and ECHO prior to. Will keep the blog updated as soon as we hear anything...
2:00pm: Cardiology and Dr. Moore have confirmed that Reid's PDA needs to be closed for his lungs to properly heal. With that being said, they are going to ligate the PDA within the next 24 hours. Unfortunately, they will not be able to do the hernia repair at the same time as there are sterility issues. PDA ligation is considered a "clean" surgery and the hernia repair is considered "dirty" as it deals with the bowel. In addition, the PDA ligation will need to be completed in the OR (instead of bedside) due to anesthetic reasons.
Also, the antibiotics that Reid has been on for the past few days are used for pneumonia. They are not 100% convinced that it was pneumonia, but did say that it was pneumonia-like and are treating it accordingly. No wonder he was so sick. The combination of the steroids, the antibiotics and the fixing of the collapsed lung have all contributed to the success we have seen over the last three days.
Reid will answer the question as to when his hernia repair will be completed. I assume he will need at least a few days of recuperation from the PDA before they even consider the hernia repair as an option.
1:30pm: The good news is that Reid's O2 is now at 38%. The bad news is that the pulmonary hypertension is back. Not sure yet as to what they are going to do about this. My thoughts are that it may be due to the fact that they have almost completely weaned Reid off of the NO and he hasn't been increased on the Sildenafil. Not sure if there is a direct correlation there... Still no word on the surgery.
9:00am: Our little rock star had another great night. His O2 is at 40% and they were able to reduce his respiratory rate down to 19. His blood pressure medicine, dopamine, was started again yesterday for a short period of time due to his pressure being a little low. They had previously reduced his hydrocortisone which they think may have been the result of the reduction. When they increased the hydrocortisone then stopped the dopamine. His pressures seem to be OK again. We are still waiting to hear if he is going to have surgery today. His respiratory conditions clearly show that he is ready, but I imagine they will be doing an xray and ECHO prior to. Will keep the blog updated as soon as we hear anything...
Sunday, December 20, 2009
5:30pm: Reid continues to have an awesome day. Most everything is the same with the exception that they have lowered his O2 down to 61% and his NO to 2.2 ppm. Even with all of the changes, he is still maintaining a 94 saturation. He looks really good as he has lost some of those extra fluids that were bloating his hands, feet and face yesterday. The question now... is surgery going to happen tomorrow??? A follow-up ECHO will be done in the morning and the doctors will assess. On a different note, Shannon, my sister, came to visit today and brought us cookies, pumpkin bread and dinner for tonight!! Thank you Shannon.
10:00am: Reid had a really good night last night. As of 6am this morning, they had weaned him down to 30 breaths per minute (which is the lowest he can be at while paralyzed), have his Nitric Oxide at 5 ppm and his O2 at 80%. Last night when we called at midnight, he was at 96% O2, so he made huge progress is a short 6 hours. He is also on Lasix to help him with his urine output --- he was getting rather puffy from laying still while on the Nurcuron. The nurses said he looked much more normal last night after he had rid himself of some of the extra fluids.
Today promises to be a full day of visiting Reid, cleaning house, finishing Christmas shopping, working and picking up Erica (Kristen's sister) from the airport tonight. Somehow, I need to find time catch up on some of the things that are starting to be neglected around the house (i.e. laundry and bills). There is rarely a moment when we can sit down and relax these days. Some of you will probably say that this all comes along with having kids... but I will gladly welcome the day that Reid comes home and causes me not to have time. These long commutes downtown everyday usually kill everything that we try to accomplish for the day. The other night, it took us nearly an hour and a half to come home from visiting Reid (and its only about 12 miles away). Anyway, I will finish my gripe section and actually do something about it. Time to start the laundry. :) By the way, here are a few pictures of him from yesterday:
10:00am: Reid had a really good night last night. As of 6am this morning, they had weaned him down to 30 breaths per minute (which is the lowest he can be at while paralyzed), have his Nitric Oxide at 5 ppm and his O2 at 80%. Last night when we called at midnight, he was at 96% O2, so he made huge progress is a short 6 hours. He is also on Lasix to help him with his urine output --- he was getting rather puffy from laying still while on the Nurcuron. The nurses said he looked much more normal last night after he had rid himself of some of the extra fluids.
Today promises to be a full day of visiting Reid, cleaning house, finishing Christmas shopping, working and picking up Erica (Kristen's sister) from the airport tonight. Somehow, I need to find time catch up on some of the things that are starting to be neglected around the house (i.e. laundry and bills). There is rarely a moment when we can sit down and relax these days. Some of you will probably say that this all comes along with having kids... but I will gladly welcome the day that Reid comes home and causes me not to have time. These long commutes downtown everyday usually kill everything that we try to accomplish for the day. The other night, it took us nearly an hour and a half to come home from visiting Reid (and its only about 12 miles away). Anyway, I will finish my gripe section and actually do something about it. Time to start the laundry. :) By the way, here are a few pictures of him from yesterday:
Saturday, December 19, 2009
8:30pm: This has, by far, been one of Reid's better days this past week and they have been working on weaning Reid off of the Nitric Oxide. Yesterday, he was on 20 ppm (which is the max), and is currently at 4.8 ppm. They probably won't wean him all the way tonight and will probably wait until tomorrow when the doctors are around (assuming he is ready for it). They were also able to wean his breaths per minute down to 30 (down from the mid-40s yesterday). The collapsed portion of his lung seems to be back to normal again (I guess as normal as normal can get for having chronic lung disease)
From a medicine standpoint, they got Reid off of the Dopamine (blood pressure medicine) and have put him on hydrocortisone (steroid) to further help his lung development. They have also added an antibiotic and are culturing his blood and some mucus that was removed during one of his CPT treatments. I believe his blood was sent off 2 or 3 days ago and hasn't returned anything yet, but the mucus that was sent out yesterday has returned a gram negative rod bacteria. Seems like he has had these all too many times, so they will probably continue with a 7-10 day regiment of antibiotic. Premature babies just don't have the immune system that they need to ward off infection. This very well could have been what caused Reid to take a turn for the worse the other day.
And the best news of the day ---- Reid had an ECHO this morning that showed that his pulmonary hypertension has gone away. Now, this doesn't mean that it won't come back, but this is still great news. With that gone, they have been able to reduce his oxygen saturation limits to be between 88 and 92. However, with all of the weaning today, he has still been hovering in the 93-95 range at 100% oxygen. When the nitric has been removed, they will start the weaning on the O2 levels.
We met with a new doctor today (Dr. Cornish) who is covering for Dr. Moore over the weekend. It was a very informative chat and he probably sat down for 20-30 minutes with us. He walked us over his xrays, drew diagrams (explaining pulmonary hypertension and chronic lung disease) and talked about some of the things that we, as parents, will endure along the way. Dr. Cornish has a son with Down Syndrome that was born prematurely and had two holes in his heart. He was quick to point out that he knew what it was like to be a parent going through this rollercoaster of a ride so he was able to come down to our level with some of the emotional side effects that come along with the territory. I could go on and on with what we learned from him today, but I will sign off tonight with a lesson that he said we need to remember (which is probably heavily paraphrased): "Don't take the highs to high and don't take the lows too low. Doctors give you good news that can change at any second and can give you grim news that may not turn out to be all too bad. You are in this for the long haul and need to focus on Reid getting better and keep stable and positive outlook."
10:00am: Reid had marginal progress last night. They were able to wean him down to 95% O2 and when they got his breaths per minute (BPM) down to 37, he starting sat'ing in the lower 90s. Their goal is to have his saturations stay around the 95 mark, so they ended up pushing his O2 back up to 100%. I have to keep reminding myself that the lowering of the BPM is a really good thing though. When it is all said and done, the BPM is one of the key points that decides when he is extubated. After surgery, they will extubate when they can remove the paralytic and get the vent to only giving about 15 assisted BPM (in addition to whatever Reid is doing on his own). Progress is progress... regardless of how big or small. The key thing is that we are moving in the right direction.
From a medicine standpoint, they got Reid off of the Dopamine (blood pressure medicine) and have put him on hydrocortisone (steroid) to further help his lung development. They have also added an antibiotic and are culturing his blood and some mucus that was removed during one of his CPT treatments. I believe his blood was sent off 2 or 3 days ago and hasn't returned anything yet, but the mucus that was sent out yesterday has returned a gram negative rod bacteria. Seems like he has had these all too many times, so they will probably continue with a 7-10 day regiment of antibiotic. Premature babies just don't have the immune system that they need to ward off infection. This very well could have been what caused Reid to take a turn for the worse the other day.
And the best news of the day ---- Reid had an ECHO this morning that showed that his pulmonary hypertension has gone away. Now, this doesn't mean that it won't come back, but this is still great news. With that gone, they have been able to reduce his oxygen saturation limits to be between 88 and 92. However, with all of the weaning today, he has still been hovering in the 93-95 range at 100% oxygen. When the nitric has been removed, they will start the weaning on the O2 levels.
We met with a new doctor today (Dr. Cornish) who is covering for Dr. Moore over the weekend. It was a very informative chat and he probably sat down for 20-30 minutes with us. He walked us over his xrays, drew diagrams (explaining pulmonary hypertension and chronic lung disease) and talked about some of the things that we, as parents, will endure along the way. Dr. Cornish has a son with Down Syndrome that was born prematurely and had two holes in his heart. He was quick to point out that he knew what it was like to be a parent going through this rollercoaster of a ride so he was able to come down to our level with some of the emotional side effects that come along with the territory. I could go on and on with what we learned from him today, but I will sign off tonight with a lesson that he said we need to remember (which is probably heavily paraphrased): "Don't take the highs to high and don't take the lows too low. Doctors give you good news that can change at any second and can give you grim news that may not turn out to be all too bad. You are in this for the long haul and need to focus on Reid getting better and keep stable and positive outlook."
10:00am: Reid had marginal progress last night. They were able to wean him down to 95% O2 and when they got his breaths per minute (BPM) down to 37, he starting sat'ing in the lower 90s. Their goal is to have his saturations stay around the 95 mark, so they ended up pushing his O2 back up to 100%. I have to keep reminding myself that the lowering of the BPM is a really good thing though. When it is all said and done, the BPM is one of the key points that decides when he is extubated. After surgery, they will extubate when they can remove the paralytic and get the vent to only giving about 15 assisted BPM (in addition to whatever Reid is doing on his own). Progress is progress... regardless of how big or small. The key thing is that we are moving in the right direction.
Friday, December 18, 2009
4:00pm: We drove all the way downtown today, visited with Reid for about 20 minutes and was then kicked out as they were doing the same surgical procedure that they did on Reid last night to another baby. Not fun to come all this way and then sit and wait in the wating room...
Reid hasn't had much progress today. His lung collapsed again and they are working hard (frequent CPT) to get it to open back up again. His oxygen levels remain at 100%, but is sat'ing in the 93-97 range. They have also noticed that he is becoming immune to the nurcuron, so they have up'd the dosage (twice the amount). They have also put te morphine and nurcuron on a drip so that there isn' a chance of Reid starting to wake up and become stressed out. They are focused on healing those lungs, and are taking all measures to ensure that he does just that.
8:30am: Kristen called the NICU at 6:30 this morning as we hadn't heard if Reid was going to go into surgery. At that time, they were on the phone with the OR and still hadn't had a doctor or surgeon assess Reid. They did tell us that he had a fair night and had to go slightly up on his breath frequency on the vent. Other than that, I think everything remained the same --- 100% O2 requirement. They called back a little after 7 when Dr. Moore made the decision that they wanted to wait until at least Monday on the hernia repair.
I am doubtful that they will return feedings and will probably keep him in the sedated/paralyzed state that he has been in for the past few days until they do surgery. The milk feedings will require him to work (digestion) and would also require him to be off the paralytic (which would also make him work). The hyperal and the lipids give him all of the essential nutrients and he can live just fine on them. I think there is a mentality that you have to have food in your tummy to grow, and I am trying to get over this thought. The nurse the other day said that you could essentially live your entire life on these fluids if needed...
Anyway... it was a long day yesterday, but Kristen and I are glad it is over with. We are also both glad that surgery was postponed again. When suggesting this to the Nurse Manager this morning when I talked to her, she sounded a little surprised (I think she assumed we were ready to get this over with), but I told her that I didn't him going in there on 100% oxygen. She said that he would probably be fine as he handled his Central Line very well, but that they didn't see the need for further risk.
Anyway, my eyes are heavy and I am still exhausted but I can't sleep. Guess I will go downstairs and eat some breakfast... I smell my parents cooking some bacon and eggs. :)
2:30am: My apologies for not posting many entries today, but today ended up being a fairly bad day for Reid (and mom and dad for that matter). When we were finally able to get into the NICU around 4pm yesterday, we came to find out that they spent 2 hours trying to get the PICC line put in place. Prior to that, they had failed at placing 6 peripheral IVs. The poor little guy looked like he had chicken pox with so many red dots all over his body where they attempted to get access points in place (Kristen counted over 20 marks). The reason this all started was that the IV that he had placed in his scalp went bad and this is the spot where they were administering his blood pressure medication (a very critical medicine). They were desperate to get something in place and tried so many times and they were finally only able to get another IV in another location on his scalp. This wore Reid out and he was then placed back on 100% oxygen because he either in a little bit of pain or his body was too stressed out.
Knowing the issues that they had today, they made the decision to surgically insert a central venous catheter (a.k.a Central Line). Surgery was at his bedside in the NICU and started at 9pm tonight and lasted about an hour. To do this, they make two incision points, one on his chest just above his nipple and another one on his neck, just above his collar bone. The process involves threading the line through his chest, up into the neck, where they insert it into his jugular vein and then all the way down to an area just on the outskirts of the heart. Passing the catheter under the skin (from the chest to the neck) helps prevent infection and also provides stability and is a process is called "tunneling". If an infection is to occur, it is most likely to attack at the chest opening and will take some time to reach the insertion point of the catheter in the jugular vein. This time will provide the doctors the ability to administer antibiotics to thwart off the infection before reaching the critical areas. In terms of stability, if the catheter is accidently tugged on or moved outside of his body, the extra tissue (the area between the insertion point in the chest and the access point in the neck) allows for a sturdy anchor without the threat of it tugging on his jugular. This should now allow the doctors and nurses to administer drugs very rapidly, as they are being administered almost directly into his heart. And it also has the added bonus that this should prevent him from needing to be stuck with new IVs several times a day and can last several months.
Kristen was a little nervous about seeing Reid in his post-op state, so my father and I drove back down to the NICU and got there just as they were finishing up. He looked much better than I had envisioned, but as you will see in the pictures, he had a rough day. Both sides of his head have been shaved in various attempts over the past two days to get some IVs going and his forehead was splotchy from the administration of the blood pressure medicine (which highly agitates the soft skin tissue). The pictures will show the two access points the surgeon used to place the line. You will see some areas of deep pink or redness, but this is just the way the picture turned out as those areas are where there is glue on his chest... Kristen, my mom and dad all thought it was part of the wound, but it's not. Actual incisions are maybe a quarter of an inch long. The new line now has three different things going in: 1) his hyperal (nutrition); 2) lipids (fats); 3) his blood pressure medicine.
His hernia surgery is supposedly to begin at 7:30am tomorrow morning. I am anxious to see if this is really going to happen, but they felt fairly certain that it would go on as planned. With that being said, I have a few hours to catch some sleep before tomorrow begins so I will wrap up. For the faint of heart, look at the images with caution.
Pre-Operation Pictures:
Reid hasn't had much progress today. His lung collapsed again and they are working hard (frequent CPT) to get it to open back up again. His oxygen levels remain at 100%, but is sat'ing in the 93-97 range. They have also noticed that he is becoming immune to the nurcuron, so they have up'd the dosage (twice the amount). They have also put te morphine and nurcuron on a drip so that there isn' a chance of Reid starting to wake up and become stressed out. They are focused on healing those lungs, and are taking all measures to ensure that he does just that.
8:30am: Kristen called the NICU at 6:30 this morning as we hadn't heard if Reid was going to go into surgery. At that time, they were on the phone with the OR and still hadn't had a doctor or surgeon assess Reid. They did tell us that he had a fair night and had to go slightly up on his breath frequency on the vent. Other than that, I think everything remained the same --- 100% O2 requirement. They called back a little after 7 when Dr. Moore made the decision that they wanted to wait until at least Monday on the hernia repair.
I am doubtful that they will return feedings and will probably keep him in the sedated/paralyzed state that he has been in for the past few days until they do surgery. The milk feedings will require him to work (digestion) and would also require him to be off the paralytic (which would also make him work). The hyperal and the lipids give him all of the essential nutrients and he can live just fine on them. I think there is a mentality that you have to have food in your tummy to grow, and I am trying to get over this thought. The nurse the other day said that you could essentially live your entire life on these fluids if needed...
Anyway... it was a long day yesterday, but Kristen and I are glad it is over with. We are also both glad that surgery was postponed again. When suggesting this to the Nurse Manager this morning when I talked to her, she sounded a little surprised (I think she assumed we were ready to get this over with), but I told her that I didn't him going in there on 100% oxygen. She said that he would probably be fine as he handled his Central Line very well, but that they didn't see the need for further risk.
Anyway, my eyes are heavy and I am still exhausted but I can't sleep. Guess I will go downstairs and eat some breakfast... I smell my parents cooking some bacon and eggs. :)
2:30am: My apologies for not posting many entries today, but today ended up being a fairly bad day for Reid (and mom and dad for that matter). When we were finally able to get into the NICU around 4pm yesterday, we came to find out that they spent 2 hours trying to get the PICC line put in place. Prior to that, they had failed at placing 6 peripheral IVs. The poor little guy looked like he had chicken pox with so many red dots all over his body where they attempted to get access points in place (Kristen counted over 20 marks). The reason this all started was that the IV that he had placed in his scalp went bad and this is the spot where they were administering his blood pressure medication (a very critical medicine). They were desperate to get something in place and tried so many times and they were finally only able to get another IV in another location on his scalp. This wore Reid out and he was then placed back on 100% oxygen because he either in a little bit of pain or his body was too stressed out.
Knowing the issues that they had today, they made the decision to surgically insert a central venous catheter (a.k.a Central Line). Surgery was at his bedside in the NICU and started at 9pm tonight and lasted about an hour. To do this, they make two incision points, one on his chest just above his nipple and another one on his neck, just above his collar bone. The process involves threading the line through his chest, up into the neck, where they insert it into his jugular vein and then all the way down to an area just on the outskirts of the heart. Passing the catheter under the skin (from the chest to the neck) helps prevent infection and also provides stability and is a process is called "tunneling". If an infection is to occur, it is most likely to attack at the chest opening and will take some time to reach the insertion point of the catheter in the jugular vein. This time will provide the doctors the ability to administer antibiotics to thwart off the infection before reaching the critical areas. In terms of stability, if the catheter is accidently tugged on or moved outside of his body, the extra tissue (the area between the insertion point in the chest and the access point in the neck) allows for a sturdy anchor without the threat of it tugging on his jugular. This should now allow the doctors and nurses to administer drugs very rapidly, as they are being administered almost directly into his heart. And it also has the added bonus that this should prevent him from needing to be stuck with new IVs several times a day and can last several months.
Kristen was a little nervous about seeing Reid in his post-op state, so my father and I drove back down to the NICU and got there just as they were finishing up. He looked much better than I had envisioned, but as you will see in the pictures, he had a rough day. Both sides of his head have been shaved in various attempts over the past two days to get some IVs going and his forehead was splotchy from the administration of the blood pressure medicine (which highly agitates the soft skin tissue). The pictures will show the two access points the surgeon used to place the line. You will see some areas of deep pink or redness, but this is just the way the picture turned out as those areas are where there is glue on his chest... Kristen, my mom and dad all thought it was part of the wound, but it's not. Actual incisions are maybe a quarter of an inch long. The new line now has three different things going in: 1) his hyperal (nutrition); 2) lipids (fats); 3) his blood pressure medicine.
His hernia surgery is supposedly to begin at 7:30am tomorrow morning. I am anxious to see if this is really going to happen, but they felt fairly certain that it would go on as planned. With that being said, I have a few hours to catch some sleep before tomorrow begins so I will wrap up. For the faint of heart, look at the images with caution.
Pre-Operation Pictures:
Post-Operation Pictures:
Thursday, December 17, 2009
3:15pm: Kristen and I just got to the hospital and when we called in to the NICU to let us in, they told us that we had to wait. Apparently, they are in the process of putting in a PICC line that they had told us about this morning. The IV that was in his scalp had fallen out or was no longer working. Since the other veins in his hands and feet are used up, and with the thought that he might be here for a little while, they decided to go ahead and put one in. He has had one in the past and they do last much longer (~3 weeks), so it will be nice if they don't have to poke him much more.
9:00am: Reid's surgery was scratched again as they are still waiting to make some further progress. He had a great night last night though and is moving in the right direction. They were able to reduce his oxygen requirements down to 87% from 100% and even further reduced his breaths per minute to 44 (which was at 60 yesterday). He CO2 levels were at 48 last night which is a completely normal level and don't think that we have ever seen them that way before. He just needs to keep up this progress...
We haven't made it into the NICU today, and probably won't be there until much later as they are closing it down for three surgeries. They commonly operate on babies inside the NICU and restrict people from coming in at those times. This is such a foreign concept to us that they wouldn't take them to the operating room, but they feel that being able to do it there rather than transport babies to other floors in the hospital is less stress on the babies. They don't do all surgeries there, but there are quite a few procedures that they can. Reid's hernia surgery will be in the OR due to the fact that it is going to be laparoscopicly done --- they just cant move all of the equipment into the NICU. Although, when he has his PDA (heart) fixed, that can be done at bedside.
Anyway... not much else is new... but that is a great thing. He had an awesome night last night and we are praying for an even better day.
9:00am: Reid's surgery was scratched again as they are still waiting to make some further progress. He had a great night last night though and is moving in the right direction. They were able to reduce his oxygen requirements down to 87% from 100% and even further reduced his breaths per minute to 44 (which was at 60 yesterday). He CO2 levels were at 48 last night which is a completely normal level and don't think that we have ever seen them that way before. He just needs to keep up this progress...
We haven't made it into the NICU today, and probably won't be there until much later as they are closing it down for three surgeries. They commonly operate on babies inside the NICU and restrict people from coming in at those times. This is such a foreign concept to us that they wouldn't take them to the operating room, but they feel that being able to do it there rather than transport babies to other floors in the hospital is less stress on the babies. They don't do all surgeries there, but there are quite a few procedures that they can. Reid's hernia surgery will be in the OR due to the fact that it is going to be laparoscopicly done --- they just cant move all of the equipment into the NICU. Although, when he has his PDA (heart) fixed, that can be done at bedside.
Anyway... not much else is new... but that is a great thing. He had an awesome night last night and we are praying for an even better day.
Wednesday, December 16, 2009
10:00pm: No real updates right now. When Kristen talked to the nurses at 8 tonight, there hadn't been any change in his breathing. We are both expecting the surgery to be cancelled as we feel they are going to want some improvements in his breathing before moving forward. We will call at 6am to see if there are any changes...
4:30pm: Looks like surgery may be a go for tomorrow. Cardiology cleared him so all teams are getting ready for tomorrow. In the morning, he will undergo one more ECHO and one more xray to ensure that he is stable. We still don't know the time slot that he will be put in, so I will update when we know. They told us to prepare for about 3 hours (half for the actual surgery, and the other half for prep, transport to OR and transport back to the NICU).
His oxygenation seems to be marginally improving (they have slightly lowered the breathing frequency and his saturations seem to be holding up). They are assuming that some of the collapsed portion of his lung may be functioning again -- I think the breathing treatments, the suctioning and the CPT seem to be helping.
1:00pm: Not a fun sight to walk into the NICU and see your son laying in bed with a blood transfusion going in at a vein on the right side of his head. His arms are already used and I think that his feet are all used up. The head, believe it or not is one of the easiest places for an IV... so if it easy for the nurse to give it, it means that it is less painful for Reid. Just not pleasant to look at.
When we got into the hospital today, his sats were starting to decline, but he had just had another ECHO and he was starting to wake up. Any kind of stimulation causes stress and in turn hurts his saturations. Also, any sort of muscle movement, other than just laying down and relaxing, causes the body to require more oxygen. While we thought the nurcuron (paralytic) was to keep Reid unaware of his pain, we found out today that it is predominantly used to restrict his movements, which in turn deduces the levels of oxygen that his body requires. The nurse made the analogy that, in a car, its fuel tank is only so large. How you drive the car, fast or slow, defines how much fuel it is going to consume. So, if we are driving slower, we can use the fuel more efficiently. Long story short, they administered another dose of nurcuron to keep his body more oxygen efficient and his oxygen saturations went back up into the low to mid 90s.
The ECHO results should be available in about an hour and we are anxious to see the results. His lung is still partially collapsed and we are praying that this can correct itself soon so that we can come down on his oxygen requirements. Another xray is scheduled for the morning. I think we have seen enough between yesterday and today to know that surgery is probably not likely for tomorrow as well. Maybe Friday???
9:00am: Reid didn't improve much over night and his xray showed that his lung was still collapsed. His CO2 levels are hovering in the 60s and is still on 100% oxygen. His hematocrit level (red blood cell levels) was at 34, and when on the vent, that requires a blood transfusion (normally they would have let it get down to 30 before transfusing). The red blood cells are the ones that are responsible for delivering oxygen to the body. The nurse this morning was able to suction a fair amount of fluids/mucus out of his throat, so I am not sure if some of the medicines that they have put him on to help lubricate his lungs are causing this.
On a different note, Kristen was able to get a good 9 or 10 hours of sleep last night so she seems to be well rested this morning. Me, on the other hand, only got about 6, which is about normal, but somehow struggling to wake up. Anyway, we will eat some breakfast and head out to the NICU late morning. Our friend Alison is coming to visit this afternoon. I am sure it is going to be another long day...
4:30pm: Looks like surgery may be a go for tomorrow. Cardiology cleared him so all teams are getting ready for tomorrow. In the morning, he will undergo one more ECHO and one more xray to ensure that he is stable. We still don't know the time slot that he will be put in, so I will update when we know. They told us to prepare for about 3 hours (half for the actual surgery, and the other half for prep, transport to OR and transport back to the NICU).
His oxygenation seems to be marginally improving (they have slightly lowered the breathing frequency and his saturations seem to be holding up). They are assuming that some of the collapsed portion of his lung may be functioning again -- I think the breathing treatments, the suctioning and the CPT seem to be helping.
1:00pm: Not a fun sight to walk into the NICU and see your son laying in bed with a blood transfusion going in at a vein on the right side of his head. His arms are already used and I think that his feet are all used up. The head, believe it or not is one of the easiest places for an IV... so if it easy for the nurse to give it, it means that it is less painful for Reid. Just not pleasant to look at.
When we got into the hospital today, his sats were starting to decline, but he had just had another ECHO and he was starting to wake up. Any kind of stimulation causes stress and in turn hurts his saturations. Also, any sort of muscle movement, other than just laying down and relaxing, causes the body to require more oxygen. While we thought the nurcuron (paralytic) was to keep Reid unaware of his pain, we found out today that it is predominantly used to restrict his movements, which in turn deduces the levels of oxygen that his body requires. The nurse made the analogy that, in a car, its fuel tank is only so large. How you drive the car, fast or slow, defines how much fuel it is going to consume. So, if we are driving slower, we can use the fuel more efficiently. Long story short, they administered another dose of nurcuron to keep his body more oxygen efficient and his oxygen saturations went back up into the low to mid 90s.
The ECHO results should be available in about an hour and we are anxious to see the results. His lung is still partially collapsed and we are praying that this can correct itself soon so that we can come down on his oxygen requirements. Another xray is scheduled for the morning. I think we have seen enough between yesterday and today to know that surgery is probably not likely for tomorrow as well. Maybe Friday???
9:00am: Reid didn't improve much over night and his xray showed that his lung was still collapsed. His CO2 levels are hovering in the 60s and is still on 100% oxygen. His hematocrit level (red blood cell levels) was at 34, and when on the vent, that requires a blood transfusion (normally they would have let it get down to 30 before transfusing). The red blood cells are the ones that are responsible for delivering oxygen to the body. The nurse this morning was able to suction a fair amount of fluids/mucus out of his throat, so I am not sure if some of the medicines that they have put him on to help lubricate his lungs are causing this.
On a different note, Kristen was able to get a good 9 or 10 hours of sleep last night so she seems to be well rested this morning. Me, on the other hand, only got about 6, which is about normal, but somehow struggling to wake up. Anyway, we will eat some breakfast and head out to the NICU late morning. Our friend Alison is coming to visit this afternoon. I am sure it is going to be another long day...
Tuesday, December 15, 2009
11:15pm: Just got off the phone with the nurse and they still have the ventilator at the same settings as they did earlier but it appears that his repositioning and his breathing treatments are working.... his oxygen saturations are now hovering around 99-100%. They are going to reposition him fairly soon so that his other long doesn't collapse (which can commonly happen if one collapses). They feel that the collapsed portion (upper right) has started to inflate again as seen by the high oxygen saturations. Another xray is due at 4am. With that said, this will be my last post for the evening. And now that the house is quiet and everyone in bed.... time for me to start work. :(
8:15pm: After a chest xray tonight, they have located the source of the poor oxygenation: a collapsed lung. This sounds bad, and it kinda sorta is, but he has had them several times in the past. The corrective action is for them to give him some breathing treatments and change his position (usually by propping up one side of his body so that he lays at an angle. Hopefully if we can get this lung working again, he wont need so much support. His 6pm gas test showed a CO2 in the low 80s and at 8 tonight, it was back down into the mid-70s.
5:00pm: Looks like they are going to hold off on surgery until at least Thursday as they want to give Reid a little more time to recuperate. He will most likely stay paralyzed and doped up until surgery. Because of this, he will not resume his feedings, instead, he will start his hyperal (IV fluid that will replace the breast milk for all of his nutritional needs) tonight. He is still on the NO and will probably come off of that tonight, but he is still requiring large amounts of O2 to keep his saturations high (90-100% range). He was administered a blood pressure medicine (dopamine) as his was falling a little. Unfortunately, this required a second IV... so, once again, he is well connected with tubes. Grandma and Grandpa Elley came for a visit today, as did his nurse Rachael from his previous NICU. It was nice to have company as it helped pass the day. We are on our way out the door now, so I wanted to post a quick update. We are both exhausted.
Noon: The cardiologists didn't think that Reid was stable enough for the catheter and took advantage of his PDA so that they could monitor the flow and pressure of the blood in the heart. They took another baseline ECHO and then hooked him up to Nitric Oxide (NO) for 25 minutes. They used this to see if opening up his veins would lessen the stress on his heart. Apparently there was some success, so they are going to prescribe Sildenafil. This is something that is going to help Reid in both the short and long run. I keep relating all of the scans/tests with an immediate need... but I am quickly learning that some of the pokes and prods are just precautionary and looking at long term solutions. It is nice to have a team of specialists hovering around Reid. New nickname: Woody.
9:15am: Surgery has been postponed to at least tomorrow. The ECHO showed signs of the PPHN that was originally shown while at Cobb Hospital. They aren't overly alarmed, but they think that it is worthy of postponing the surgery until he has had a day to calm down after the episode that he had last night. Talking to the doctor, apparently the episode he had, which he called an acute episode, was most likely due to the fact that he had spit up at the same time as receiving higher levels of oxygen and it all went downhill from there. Nonetheless, they got him stabilized.
We got the results of the head/brain scan this morning and everything looked normal. He did have a cyst, but apparently it was the type that is very normal in newborns. There was no evidence of brain bleeding (which is unfortunately a common thing that is seen in premature babies that are born as early as Reid). So, this was good news to us and this adds to things they can check off.
For today, there are going to be some follow ups with the cardiologists to see if a pulmonary artery catheterization is needed to further evaluate the stress that is causing his PPHN. With this catheter, they can get direct readings from the heart and also administer medicines to see their direct impact. This will be a good read to help determine if he is a candidate for Sildenafil (Viagra) to help treat the hypertension. This may sound odd... but if it takes a 'woody' to help him breath, I am all for it. :)
That is about it for now. Kristen and I will hunker down for the day and stay by his side and await any news from the cardiology team. Reid is paralyzed and calm - not a fun thing to see, but at least we know he is comfortable. I would expect that if the cardiology team doesn't take any action today, they will wean Reid off the paralytic and hopefully resume feedings.
8:30am: Surgery is being delayed for the time being. After the rough night they wanted to do another ECHO to ensure that he is still stable enough for surgery. The cardiologist just reviewed the scan and is now talking to the staff of doctors. We are trying to be patient but we are full of nerves this morning. Seeing Reid paralyzed again and on the vent brings back too many unwelcomed memories of the past. They just did another CO2 gas and it came back at 51 (the one at 4am was 65). The vent is obviously doing it's job of removing the excess gas.
6:00am: Reid didn't have a good night last night. After a third dose of arginine that didn't work and a CO2 of 104, they decided to intubate him. They are not sure why he was requiring so much oxygen or retaining so much CO2, but they knew that the needed to be intubated for surgery this morning anyway, so they went ahead and did it. When they did it, he apparently "clamped down" on the tube and stopped breathing (think it is a fairly normal reaction in babies when they have something foreign in their breathing path). He is old enough now to know what is going on, so they ended up using an ambu bag to mechanically breath for him and gave him norcuron to paralyze him to prevent him from clamping down again. Once that took, he relaxed and now the vent is breathing for him. He is on a breathing rate of 45 bpm and at 80% oxygen. Kristen and I are getting ready and will be in at 8am when the NICU opens back up for visitors. I will blog again after he goes into surgery.
8:15pm: After a chest xray tonight, they have located the source of the poor oxygenation: a collapsed lung. This sounds bad, and it kinda sorta is, but he has had them several times in the past. The corrective action is for them to give him some breathing treatments and change his position (usually by propping up one side of his body so that he lays at an angle. Hopefully if we can get this lung working again, he wont need so much support. His 6pm gas test showed a CO2 in the low 80s and at 8 tonight, it was back down into the mid-70s.
5:00pm: Looks like they are going to hold off on surgery until at least Thursday as they want to give Reid a little more time to recuperate. He will most likely stay paralyzed and doped up until surgery. Because of this, he will not resume his feedings, instead, he will start his hyperal (IV fluid that will replace the breast milk for all of his nutritional needs) tonight. He is still on the NO and will probably come off of that tonight, but he is still requiring large amounts of O2 to keep his saturations high (90-100% range). He was administered a blood pressure medicine (dopamine) as his was falling a little. Unfortunately, this required a second IV... so, once again, he is well connected with tubes. Grandma and Grandpa Elley came for a visit today, as did his nurse Rachael from his previous NICU. It was nice to have company as it helped pass the day. We are on our way out the door now, so I wanted to post a quick update. We are both exhausted.
Noon: The cardiologists didn't think that Reid was stable enough for the catheter and took advantage of his PDA so that they could monitor the flow and pressure of the blood in the heart. They took another baseline ECHO and then hooked him up to Nitric Oxide (NO) for 25 minutes. They used this to see if opening up his veins would lessen the stress on his heart. Apparently there was some success, so they are going to prescribe Sildenafil. This is something that is going to help Reid in both the short and long run. I keep relating all of the scans/tests with an immediate need... but I am quickly learning that some of the pokes and prods are just precautionary and looking at long term solutions. It is nice to have a team of specialists hovering around Reid. New nickname: Woody.
9:15am: Surgery has been postponed to at least tomorrow. The ECHO showed signs of the PPHN that was originally shown while at Cobb Hospital. They aren't overly alarmed, but they think that it is worthy of postponing the surgery until he has had a day to calm down after the episode that he had last night. Talking to the doctor, apparently the episode he had, which he called an acute episode, was most likely due to the fact that he had spit up at the same time as receiving higher levels of oxygen and it all went downhill from there. Nonetheless, they got him stabilized.
We got the results of the head/brain scan this morning and everything looked normal. He did have a cyst, but apparently it was the type that is very normal in newborns. There was no evidence of brain bleeding (which is unfortunately a common thing that is seen in premature babies that are born as early as Reid). So, this was good news to us and this adds to things they can check off.
For today, there are going to be some follow ups with the cardiologists to see if a pulmonary artery catheterization is needed to further evaluate the stress that is causing his PPHN. With this catheter, they can get direct readings from the heart and also administer medicines to see their direct impact. This will be a good read to help determine if he is a candidate for Sildenafil (Viagra) to help treat the hypertension. This may sound odd... but if it takes a 'woody' to help him breath, I am all for it. :)
That is about it for now. Kristen and I will hunker down for the day and stay by his side and await any news from the cardiology team. Reid is paralyzed and calm - not a fun thing to see, but at least we know he is comfortable. I would expect that if the cardiology team doesn't take any action today, they will wean Reid off the paralytic and hopefully resume feedings.
8:30am: Surgery is being delayed for the time being. After the rough night they wanted to do another ECHO to ensure that he is still stable enough for surgery. The cardiologist just reviewed the scan and is now talking to the staff of doctors. We are trying to be patient but we are full of nerves this morning. Seeing Reid paralyzed again and on the vent brings back too many unwelcomed memories of the past. They just did another CO2 gas and it came back at 51 (the one at 4am was 65). The vent is obviously doing it's job of removing the excess gas.
6:00am: Reid didn't have a good night last night. After a third dose of arginine that didn't work and a CO2 of 104, they decided to intubate him. They are not sure why he was requiring so much oxygen or retaining so much CO2, but they knew that the needed to be intubated for surgery this morning anyway, so they went ahead and did it. When they did it, he apparently "clamped down" on the tube and stopped breathing (think it is a fairly normal reaction in babies when they have something foreign in their breathing path). He is old enough now to know what is going on, so they ended up using an ambu bag to mechanically breath for him and gave him norcuron to paralyze him to prevent him from clamping down again. Once that took, he relaxed and now the vent is breathing for him. He is on a breathing rate of 45 bpm and at 80% oxygen. Kristen and I are getting ready and will be in at 8am when the NICU opens back up for visitors. I will blog again after he goes into surgery.
Monday, December 14, 2009
Updates:
8:00pm: We made it home and are now parked on the couch for some mind-numbing TV watching. The only other update I have is that Reid had a brain/head ultrasound this evening but do not know the results of it. I assume we will hear more tomorrow.
4:00pm: It has been a long day and for the most part, everything has been done that needed to be done today. The eye test that was supposed to happen at noon ended up being around 2. Good news though, no laser surgery needed today. Dr. Hubbard's prognosis was Stage 2, Zone 2, which is better than what was determined at Cobb Hospital (Stage 3, Zone 2). A follow up will occur in 7 to 10 days... so for now, we are out of the woods for at least another week.
And just when we get something to go our way and have a little good news, the cardiologist presents us with the news that his PDA has opened back up and may need repair. This is something that has habitually plagued us since he was born and tends to open and close, but being at the age that he is, it appears that mechanical intervention is needed. Between the two ECHO's that he has had (last week and today), there is a bit of disagreement between the two as to how much pulmonary hypertension he has. This may be the deciding factor as to if he will have PDA ligation this week. Another ECHO is planned for Wednesday and should tell us whether or not he can go longer before he needs repair or if it is something that they can do now while he is here. This surgery involves an inch long slit on his left side underneath his arm near his armpit. The surgeon will then, between his ribs, lift up his lung to get a clear shot at the heart. The ductus will be located and will be temporarily clamped down until they are able to watch his blood pressure and vitals to ensure they have it correct. Once sure, they then insert a medical clamp to secure it (which he will have for the rest of his life). Once complete, they go through and sew up the incision. All said and done, it is a 20 to 30 minute procedure --- one that is fairly common amongst premature babies.
Hernia surgery is tomorrow. We just got done talking with the surgical staff and signed the consent forms. Surgery is planned around 8:30-9am tomorrow and he should be back in the NICU by noon. This surgery is about 30-45 minutes per side and since both are there, it will be a fairly long procedure. Talking to the surgeon, he said the lining (hernial sac) that they have to separate from the boy parts and the intestine itself is the thickness of saran wrap and has the consistency of wet tissue paper. Doesn't seem to be a difficult surgery, just very tedious.
Reid will go on a ventilator, sedated and medicated in the morning and will be "out of it" for the majority of the day. After 24 hours, he should be coming back to normal but will most likely be on morphine to help with the pain of both the surgery and the tube down his throat. If Wednesday's ECHO proves that he can have surgery on his PDA, he will remain ventilated for a possible Thursday or Friday surgery. Once that is all complete, they will work on weaning him from the vent.
Well, Kristen and I need a breath of fresh air, so we are going to step outside. I don't imagine there will be any more news for today, but will keep you informed tomorrow. As I always say, keep the prayers coming this way!!!
8:00am: Reid did well last night. The medicine that they had administered yesterday seems to be working and his CO2 was 63 (a number that he hasn't seen in quite some time). Kristen and I are getting ready to head in and go visit. His last feeding was at 6, so we are prepared to see a cranky baby. Jennifer and Shannon (my sisters) are going to be there this morning as well.
8:00pm: We made it home and are now parked on the couch for some mind-numbing TV watching. The only other update I have is that Reid had a brain/head ultrasound this evening but do not know the results of it. I assume we will hear more tomorrow.
4:00pm: It has been a long day and for the most part, everything has been done that needed to be done today. The eye test that was supposed to happen at noon ended up being around 2. Good news though, no laser surgery needed today. Dr. Hubbard's prognosis was Stage 2, Zone 2, which is better than what was determined at Cobb Hospital (Stage 3, Zone 2). A follow up will occur in 7 to 10 days... so for now, we are out of the woods for at least another week.
And just when we get something to go our way and have a little good news, the cardiologist presents us with the news that his PDA has opened back up and may need repair. This is something that has habitually plagued us since he was born and tends to open and close, but being at the age that he is, it appears that mechanical intervention is needed. Between the two ECHO's that he has had (last week and today), there is a bit of disagreement between the two as to how much pulmonary hypertension he has. This may be the deciding factor as to if he will have PDA ligation this week. Another ECHO is planned for Wednesday and should tell us whether or not he can go longer before he needs repair or if it is something that they can do now while he is here. This surgery involves an inch long slit on his left side underneath his arm near his armpit. The surgeon will then, between his ribs, lift up his lung to get a clear shot at the heart. The ductus will be located and will be temporarily clamped down until they are able to watch his blood pressure and vitals to ensure they have it correct. Once sure, they then insert a medical clamp to secure it (which he will have for the rest of his life). Once complete, they go through and sew up the incision. All said and done, it is a 20 to 30 minute procedure --- one that is fairly common amongst premature babies.
Hernia surgery is tomorrow. We just got done talking with the surgical staff and signed the consent forms. Surgery is planned around 8:30-9am tomorrow and he should be back in the NICU by noon. This surgery is about 30-45 minutes per side and since both are there, it will be a fairly long procedure. Talking to the surgeon, he said the lining (hernial sac) that they have to separate from the boy parts and the intestine itself is the thickness of saran wrap and has the consistency of wet tissue paper. Doesn't seem to be a difficult surgery, just very tedious.
Reid will go on a ventilator, sedated and medicated in the morning and will be "out of it" for the majority of the day. After 24 hours, he should be coming back to normal but will most likely be on morphine to help with the pain of both the surgery and the tube down his throat. If Wednesday's ECHO proves that he can have surgery on his PDA, he will remain ventilated for a possible Thursday or Friday surgery. Once that is all complete, they will work on weaning him from the vent.
Well, Kristen and I need a breath of fresh air, so we are going to step outside. I don't imagine there will be any more news for today, but will keep you informed tomorrow. As I always say, keep the prayers coming this way!!!
8:00am: Reid did well last night. The medicine that they had administered yesterday seems to be working and his CO2 was 63 (a number that he hasn't seen in quite some time). Kristen and I are getting ready to head in and go visit. His last feeding was at 6, so we are prepared to see a cranky baby. Jennifer and Shannon (my sisters) are going to be there this morning as well.
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