11:30pm: Kristen and I got out of town this week and headed to the beach (Seaside, FL). We rented a one bedroom house across the street from the beach and have enjoyed being away from everything. While the beach has had some tar balls wash up from the BP oil disaster in the Gulf, the sand and water, for the most part, are clean and clear. The crews are right on top of everything - so that is good to see. Honestly though, we really haven't spent much time on the beach itself - it is way too hot (heat index of 100 and humidity so thick you can cut it with a knife) - so, we have found one of the three pools in the community to be fairly quiet and relaxing.

I have been working a little while we are here - I have put in a few hours each day and am trying to work myself back into the routine. Next week, I will be back 100% and I am not looking forward to it at all. My work has been extremely flexible so I am more than grateful that they have accommodated me. Kristen has enjoyed her time down here - mostly playing scrabble on her iPhone and reading her Kindle. Her tan is also in full gear! :)

I think we are getting close to being ready to go home - not necessarily back to reality, but to the comforts of home. We are heading back on Saturday and we are anxious to visit Reid. Our friend Shay took her son Aidan to visit Reid twice this week. They live no more than a couple of miles from the cemetery and pass it regularly, so it is good to have 'neighbors' to watch over Reid while we have been gone. Aidan, who is 5 years old, brought him a yellow and black matchbox race car and a small plant - "... a small plant 'cause Baby Reid was small". Aidan has also enjoyed talking to Reid and has told Reid all about his day. He apparently said that it was so hot out in Atlanta today that Reid was probably swimming in heaven. And even though he is an angel, he still had to stay out of the deep end! How priceless is that?!? Kids say the darnedest things and it brought a much needed smile to my and Kristen's face. Indeed, Reid is smiling too - and swimming as fast as he can with his new set of lungs.

7:30pm: Kristen and I picked up a new bouquet of flowers for Reid this morning and we stopped by for a short visit. I think we would have stayed longer but the weather was already in the 90s with very little wind - blazing hot for me. Its been an interesting day for me - everyone keeps telling me Happy Father's Day - but it is everything but happy. I am blessed to have been a father, but all I envision today are fathers spending time with their kids... something I didn't get to do.

Anyway - nothing big to post today, just wanted to get a few pictures up here of Reid's grave:






12:30am: Kristen and I made a trip to the cemetery to visit Reid today. It was the closest I have felt to him over this past week, so I imagine that we will be trying to make frequent trips. We laid down in the grass next to his grave for about 30-45 minutes... somehow the 90ish degree temperature had subsided while we were there and I joked that Reid had put a word into the man upstairs to cool it down and let there be a gently breeze. Reid and I are very hot natured people - so the cool air that seemed to be blowing by was quite pleasant.

We mostly talked about how bad we missed him, how difficult of a life that he had in his short time on earth, and the things we, as parents, will miss out in life. Kristen sang a couple of songs to him and choked back tears. We will be back tomorrow to lay a new set of flowers on his grave for Fathers Day - the ones that were placed the day of his burial have all but wilted. Someone had also placed a teddy bear on his grave, so that was nice to see as well.

The entire set of family and friends that we have had visiting over the past week have all left today. The house is empty and Kristen and I did everything possible to not be at home tonight. Just when things seem to be manageable and you think you have your emotions in check, it is if something jumps up and bites you and you struggle to keep your stomach from turning inside out. Tears roll down your face at random times and when you least expect them to. I guess this is part of the healing of our fresh wounds and it scares me to think about how long we are going to go through this roller coaster ride. If we ever thought the journey through the NICU was tough - we are in for it.

8:00pm: Somehow we managed to get through the day - I am not sure how, but I am sure it had something to do with the fact that we had so many family and friends with us. Reid had a purpose in life - and while we may never know the full extent of that purpose, it was clear today by the outpouring of support that we heard and saw, Reid touched many peoples lives.

Everything is still so surreal and I am not sure the enormity of this week has really had a chance to sink in. Our lives will somehow continue to move forward and we will eventually heal - but, as I told Kristen today, we are going to have many more rocky days before the good ones start to come around again. Our lives will be forever changed, but the immediate change has already started to show its face. As busy as we have been this week, our day's load seems to be lighter and less worrisome and the things that we used to fill our day with are now being filled with other activities.

And when I think of the new voids in our life with Reid's passing, one thing struck me in Reid's service this afternoon. Part of our daily routine (more Kristen than mine), was to call and see how our little man was doing. One of our primary nurses from Egleston, Bethany, finished off her tribute to Reid by talking about how we would call late night or early morning to get an update on how Reid's night had gone. While we don't have to make that call anymore, we were able to get one last update from Bethany on how Reid was doing... and I quote:

"Well, Reid had a good night last night
In fact, he didn't cry at all
They discontinued all his medicines and decided
we don't need to do any more procedures
It doesn't look like he's in any pain
He's been cooing and laughing like you wouldn't believe!
He is finally on "room air" and
He doesn't need his boppy or his swing because
The One who loves him more than we can imagine
is holding Reid in His arms today."


When things are put in that light, things aren't so bad. Reid is in the best hands and we can't have it any better than that.

Reid Phillips Elley, born 2 September 2009, in Austell, GA, was called home to the Lord on 13 June 2010. After nine months in the hospital, Reid lost his courageous fight and was overcome by the challenges of a premature birth. Reid’s presence was all too brief but he brought joy and courage to his family and loved ones each day he was with us. Reid is survived by his parents Chad and Kristen Elley, Smyrna, GA; grandparents Ben & Georgia Elley, Sunset, SC, Bill and Carol Hart, Woodlands, TX, and John Bell, Leavenworth, KS; Great grandmother Maxine Hinton, Manhattan, KS; Aunts and Uncles Todd and Jennifer Williams of Atlanta; Brian and Shannon Pagel of Alpharetta; David and Erica Mills, San Antonio, TX; Laura and Rocky Rosenberg, Poulsbo, WA; Bob and Kerryellen Hart, Savannah, GA; Amy Hart, Austin, TX; Great Aunts and Uncles George and Nicole Elley, Tempe, AZ; Tom and Debbie Phillips, Manhattan, KS; and numerous cousins. Services will be held on 17 June 2010 at 1pm at the Davis-Struempf Funeral Home in Austell, GA. Visitations will be held from 11am to 1pm. In lieu of flowers the family has requested donations to Children’s Healthcare of Atlanta in memory of Reid Phillips Elley. Donations may be mailed to Children’s Healthcare of Atlanta, Attention: Steven Wagner, 1687 Tullie Circle NE, Atlanta, GA 30329.

5:30pm: We will be holding a visitation between the hours of 11am and 1pm on Thursday, June 17th at the Davis-Struempf Funeral Home in Austell, Georgia. At 1pm, a funeral service will commence. Following the service, there will be a grave-side burial service (site yet to be determined) and we will be hosting an open house for those that wish to join us afterwards.

Davis-Struempf Funeral Home
1975 East-West Connector
Austell, GA 30106
770.994.2900
www.davisstruempf.com

In lieu of flowers, donations can be made to Children's Healthcare of Atlanta, where we have set up a fund that will be directed specifically to the Neonatal Intensive Care Unit in Reid's name. Please send donations to the following address and be sure to include Reid's name.

Children’s Healthcare of Atlanta
Attention: Steven Wagner
1687 Tullie Circle NE
Atlanta, GA 30329

You may also go to www.choa.org and donate online. You will be able to donate in Reid's name there as well.


Chad and Kristen Elley
4930 Durley Lane
Smyrna, GA 30082

8:00pm: Two hundred and eighty five days have passed since Reid graced us in September with his early announcement into this world. Unfortunately, it is with a heavy heart that I have to inform you that Reid lost his battle today. Our little man gave everything that he had and he has taught us some valuable lessons in life - the most important of all - to never give up. When doctors, nurses and therapists repeatedly told us that the odds were stacked against us, Reid always found a way to prove them wrong. Today, Reid didn't give up. The body that carried his spirit gave up. He could take no more.

Reid was surrounded by the closest of family and friends today as Kristen and I made the most difficult decision of our life - to let him go. His body, bearing the numerous battle wounds he had endured in the past 9 months, couldn't take it any more and we couldn't selfishly keep him here for ourselves.

He went peacefully and has gone home.

Kristen and I no longer fear death. We anxiously await the day that we meet him again in the glorious kingdom of heaven - where we will find our little boy picking up frogs, digging up worms and doing all of the things that little boys do.

This closes a chapter of our lives that wasn't ready to be closed. We are empty and lost but we will find our feet again. And we will find them again with the support that we have in each one of you. While we have our core group, there are many of you out there that we have never met that sent your prayers our way. We thank every one of you and we couldn't have made it this far without you. As I sign off for tonight, I request that each and every one of you please post a comment - even if it is as simple as writing your name. We have 40+ followers on this blog but know there are many, many more of you out there and we would appreciate it if we can know who was cheering Reid on from the sidelines.

9:30am: Around midnight last night, Reid's saturations started to fall and his CO2 and pH levels started to go in the wrong direction. They decided to go down on the hertz on the oscillator to 7 (from 8) to help pull off some of the excess CO2. After what seemed to be about 30 minutes after the orders were made, the respiratory therapist finally came in and made the change on the hertz, but also did something that she wasn't supposed to do without doctors orders - go up on the mean pressure. She took Reid from 22 (which was our landing point) back up to 25. As soon as I saw her do this, I went out in the hallway and asked to speak to the doctor. This was against the plan and is pissed me off.

We had a 20 minute conversation with the doctor to tell him how frustrated we were and that we didn't know where we were going. When he saw what had happened, he was equally frustrated and said that we will have to work on weaning it all over again. He even commented to the fact that he was happy with the progress that Reid had made during the 18 hours that the doctor had been here... and that it had all been thrown out the window with the mean pressure increase. His last words as he walked out the door was that he was going to have to have a 'talk' with the therapist.

Fast forward to this morning, the hertz was lowered again to 6 (lowering is actually increasing) as his CO2/pH balance was still not where they wanted it to be. In addition, they went back up on the Nitric Oxide from 4 to 5.7 PPM - even though they aren't confident that it is even doing anything for Reid. His sats yesterday hovered in the 90-92 range but today when we walked back in the room this morning, they were 96. His latest CO2 was 63 and a pH of 7.33 --- good for Reid.

Kristen and I both noticed that he looked really puffy today and appears that he is retaining a lot of fluids. As of about 30 minutes ago, they started a dose of lasix to see if that can clear off some of the excess. His morning xray showed some increased haziness in his lungs - which usually equates to fluids. So, we are hopeful that this will help him out.

We are worried about how long he has been on this level of support. Obviously being on artificial support for extended periods of time is not good - Nitric Oxide, over a period of time is toxic; over-extending your lungs is not good either. The uncertainty of it all is killing us, but we are quickly approaching 2 weeks since surgery.

3:00pm: The oxygen is back up to where it was yesterday and they have the NO down to 5 PPM. This will be weaned over the next 24 hours assuming Reid tolerates it. The doctors don't think this is having much effect on Reid, but they are taking it slow regardless.

He had another desat this afternoon around the same time he does every day (we think it may have something to do with his circadian rhythm). He got as low as 83, but has been coming up since. He is currently satting 91. We have noted a higher heart rate than yesterday - it is around 140 now as opposed to about 110 yesterday. Not sure if the new drug has kicked in or not, but they ended up giving chloral hydrate again to help calm him down. We hope that as his heart rate comes down, his sats go back up.

12:00pm: A new doctor took over today and there is now a new plan of action. It is good to have a new set of eyes, but it is always hard to get used to something different. Over the past few days, Reid has been starting to wake up a little bit at random times of the day and think that he is building a tolerance of the sedatives that he is on. Today, they replaced ketamine with dilaudid, which is stronger and should help him remain 'out'. There have been times when Reid destats and we think it is him waking up and trying to breath against the oscillator. They have been giving chloral hydrate as needed to help out, but the doctors don't like giving this as it is a 'dirty drug'. The new drug should alleviate having to give something extra.

The other change they made today during rounds was to no longer actively wean the O2, but rather wean the Nitric Oxide (NO). He was on the maximum of 20 parts per million (PPM) and they have now weaned to 15. Usually they like to get this out of the way before switching to the conventional vent, so we were surprised the other day when they told us that we would still be on this after the switch. I think this plan is more in line with what we have been told in the past - so we will see. Usually kids have no problem weaning really fast on the NO... that is until they get to about 2 PPM. From there, it usually can take awhile.

9:30am: Another good night for Reid last night. And a solid night of sleep for Kristen and me. His mean pressures are down to 22 where they are going to hold. If they happen to do any more weaning, it might go down to 21, but I think they are at a level where they want to get before switching over to conventional vent. The biggest thing they are going to work on weaning now is his O2.

His CO2 was 37 and a pH of 7.45. The pH was a little high, but still in the acceptable range. If it gets any higher, they are going to wean his "Delta P" which is the "wiggle factor" on the oscillator. The wiggle helps blow off his CO2, which directly effects his pH levels. His body is used to having a higher CO2. His O2 was down to 79% and he was satting in the 97-99 range.

He had another xray this morning at 4 and his left lung looked a lot better to me. His upper lobe looked to be quite a bit more open than it did yesterday. His cysts didn't look like they had grown at all. But this is just my reading and will wait to hear from the doctor later this morning for the official word.

We are moving in the right direction. Slowly but surely. But as the old saying goes, "Slow and steady wins the race".

1:45pm: Reid had a pretty quiet night last night and was weaned down to mean pressure of 24. His xrays from last night didn't show any movement of the cysts so we were relieved to hear that. His right lung looked like it had opened up a little more as well. All positive news.

After yesterday, the orders have been rewritten to be very clear. Reid is to be weaned on a precise schedule and to not deviate from it. The doctors are to be made aware before he is weaned. This way, we feel there are less cooks in the kitchen and maybe more control. Reid had a minor desat this morning during trache care and went down to 87. He recovered on his own but goes to show you how little he likes to be touched right now. During his care, they noticed the stitches looked a little odd, so they are going to have wound care stop by this afternoon to take a look.

We went home this morning and tried to have a somewhat normal start to our day. I was able to get a few things done around the house (mowed lawn) as we have been neglecting some of our other responsibilities. Bills got paid as well, so we are good for a little while at least. We are heading back to the hospital here shortly to hang out with Reid. I need to get some work stuff done this afternoon, so the laptop will be fired up at some point. We are hanging in there and when it feels like we have given all we have and our bodies are drained and our emotions have taken a toll on us mentally, we know that Reid is not giving up - we have to remain just as strong as our little fighter is - if not more.

11:00pm: I am going to try and keep this blog shorter than what it probably deserves, but Kristen and I are exhausted. Not exhausted from not sleeping enough... more so exhausted from the constant state of stress that we find ourselves living in these days. The valuable lesson we learned early on in the NICU was to take things day by day, however, we feel this past week we have lived minute by minute. Just because things are good one minute doesn't mean that as soon as you turn your head to look the other way things, everything can't fall to pieces. We feel like today was one of those days.

This morning, they were able to wean him down to 21 on the mean pressure and the doctor had commented on the fact that if we could have one more solid day like we did last night, that he would consider moving Reid onto the conventional vent tomorrow (Friday). Today was supposed to be a weaning of his O2 - nothing more than that. No more than a couple hours after he made that comment, Reid's CO2 and pH levels went out of whack and we found ourselves dropping our sats into the lower 80s. And what is the first thing the respiratory therapist does? Crank our mean pressure back up to where we started yesterday - 27. "Don't worry" he said, "I will wean these pressures quickly back down as soon as I can get his sats up." And guess what happened when his sats got back up - another explanation about how we needed to start the weaning process all over again.

At 10 tonight, we went from 27 back down to 26 with a plan of weaning again at 2am assuming his blood gasses look good. Currently we are satting 98-100 and he is resting peacefully. Our nurse tonight is great - we have had her the past 4 nights and she is very in tune with Reid. She notices when his sedation is wearing thin and is quick to make sure that he is given more medicine. One of the biggest problems with Reid even remotely coming to his senses is that he becomes somewhat aware of his reality. So much as a little breath on his own works against this very expensive machine doing the job for him. So, long story short, the more sedation he has, the better off he is.

Reid has had a busy day with visitors today. I cant even begin to count the number of people that have stopped by to say hello - he is famous and he doesn't even know it. If anything, it is a nice distraction from the monotony of sitting in his room, starring at his monitor and hoping the bottom doesn't fall out. So, a big thank you to everyone who has stopped by to say hello!

7:00am: Kristen and I spent the night at the hospital last night. She stayed in the room on the couch and I got a sleeper room that resembles a jail cell with a bed that is probably as comfy as the cots that belong in those cells. Don't think either of us got good sleep, but Reid had a really good night. I don't know all of the details as it is shift change and I can't get back in the PICU until 8. He is now on a mean pressure of 23 and satting 97-100. This pressure is down from 30 the other day and down from almost 27 yesterday. From our conversation yesterday, it sounds like we need to be in the upper teens before we can try going back to the conventional vent. They are trying to wean by 1 about every 4 hours. More to come as the morning unfolds...

4:15pm: Today's biggest concern is with Reid's lung cysts. The latest xray shows that they are growing larger - on both sides. This is making the doctors very nervous and told us that we have to go down on his pressures to prevent them from bursting. The double edge sword here is that going down on the pressures may come at a cost of his oxygen saturations. But for a cyst to burst is catastrophic - so we have no other choice.

We met with the PICU, TICU and NICU doctors/nurses at 2:30 today to discuss the plan of action and for us to understand the risks that come along with each move. It was not a very easy conversation to swallow, but there is a plan in place.

This is Reid's last chance to prove himself and he has to turn the corner.

Please pray specifically that his cysts do not burst and that he is able to tolerate the wean.

11:30am: Kristen called in at 6 this morning and Reid apparently had just finished having a de-sat. We threw our clothes on and rushed out the door for the third time in less than a week and got here to the hospital around 7. When we got here, he was satting in the low 90s but appeared to have 'recovered'. Frustratingly enough, he is back on the max O2 and fairly high settings on the oscellator. They have finally got his CO2 and pH in a sweet spot (52 and 7.35) and want to leave him alone for the day. The doctor mentioned that he was more concerned with his pH remaining around 7.35 than anything and would tolerate an above average CO2. This morning, Reid had a CO2 of 105 and a pH of about 7.15 - not good.

Reid's xray didnt look all that good today. Their biggest concern is that one of the cysts in his left lung was enlarged and they had made a slight change to the machine to back down on the pressures a little bit so that they didn't make it any larger. In general, the more pressures that are given, the larger the cysts can get.

We are hanging out in the hospital today. Stressed to the max, but hanging in there.

11:00pm: Today was a day of no progress and a few ups and downs more than we had hoped for. The doctors have ordered for the nurses to pretty much leave Reid alone and to not make any changes. When they did trache care today, he de-satted down to 77 but was able to recover. I think they see how fragile he still is and want to give him some time to recuperate.

His mean pressure was actually down by one to 25 but his oxygen was around 54%. He is satting at 98. His CO2 levels are a little high tonight (73) and they could adjust some of the settings on the oscillator to get it down, but they are just going to let him remain as is for tonight.

We went out to dinner tonight and I had a margarita in hopes that it could calm my nerves, but it didn't. We are still on edge and constantly have the feeling that the bottom could drop out at any minute. We desperately need some more good news - living with this stress is not fun.

Anyway, bed time for me. I was able to get a solid 8 hrs of sleep last night but dont think it was enough to recover from this horrible weekend. Until tomorrow...

12:15pm: Reid had a desat this morning and his sats went down to 85. They decided to do a suction (which is usually ill-advised while on the oscillator) and they were able to get quite a bit of mucus. They ended up going up high on his O2 to help him out, but after the suction, his sats were back in the 90s and the were actively weaning his O2 again. We are still not out of the woods, but is good to know that we do have a little room to move on his settings.

His feedings are going to remain at 26cc per hour as they are afraid that any more than that will add too many fluids and take a toll on his respiratory condition.

Reid's neonatologist stopped by yesterday to visit with us and to talk with Reid's doctors. During rounds today, they had brought up the advice that he had give them - Reid takes a long time to recover and that they needed to move very slowly on the weaning of the machines. I think the new doctors have taken this very seriously and will probably not move very much today - allow him to further stabilize and get another good day under his belt.

11:00am: Kristen and I had some really good sleep last night and while we could probably sleep for days, we have things to do and a baby to visit. Reid had a good night last night. His oxygen was further weaned to 40% and they were able to further wean the mean volume (the volume his lungs are kept at). The mean volume - which I am not really sure how it is measured needs to come down to a number of about 18 or 19 before he can be removed from the oscillator and onto the conventional vent. Yesterday, he was at 32 and today he is at 26. They will only wean by a maximum of 2 per time.

His xray at 4 this morning still showed some haziness in the upper lobes of his lungs which would be a sign that they are still partially collapsed. They noted that there was marginal improvement in the xray - but improvement is improvement - and we will take that.

The ECHO that he had yesterday showed that there was probably no impact of his pulmonory hypertension on his respiratory condition. While I know little to nothing about how these results are measured, I know that there is a number that is assigned to the reading. His baseline in December was 66. His reading yesterday was 22. A normal set of healthy lungs and a healthy heart will produce a number between 10 and 15 so he isn't too far out of 'normal' range. This is probably due to his sildenafil (Viagra) that he is currently on. Yesterday they put him on inhaled nitric oxide (NO) which is compared to as a gaseous form of Viagra. They aren't sure the NO is doing anything for him but was added yesterday when they put him on maximum support. They will need to wean this over the coming days as well.

His feedings are up to 26cc per hour and they will discuss with his dietitian today to see if they can start going up to his full feeds of 42cc per hour. Yesterday, he had two bowel movements, so his belly is still working fine. The larger volume could put pressure on his lungs, so they want to be careful with how much he gets.

We are waiting to see what changes are going to be made during rounds and should know more soon. I will post more as soon as we hear anything. Kristen's mom and sister flew in last night so they will be able to visit with Reid today. They will be a good help for us over the next few days and help Kristen and I get some things done for us that have been put on the back burner.

The outpouring of support and prayer seems to be continuing for Reid. We have received numerous emails from people who we don't even know but are friends of friends/family and have caught word of Reid. It is amazing the number of people who's lives have been impacted by Reid - and it is amazing the number of people who have helped give us the support that we have needed.

9:30pm: In the nine months that Reid has graced us with his presence, we have never seen Reid fight harder than he has today. This morning was the lowest of all lows and thought the worst may be upon us. This morning, he was put on the maximum ventilating support possible. The room was quiet and absent of doctors and therapists - just Reid, mom, dad, grandma and grandpa Elley and lots of prayers. It was the first time that we had witnessed a critical situation like today and have little to no medical staff around to give us the peace of being alone with our little loved one. The machines had to do their work and if they failed, there was no backup plan to go to.

Reid, over a period of very stressful ups and downs, decided that he wanted to turn the corner and not look back. When Kristen blogged at 11am this morning, Reid was heading in one direction and has somehow managed to come down to 44% oxygen (satt'ing 98 to 100) and has had beautiful blood gasses. At a level below 50% O2, they are now able to start weaning some of the other support and so far, has done an awesome job.

Today, outside of the oxygen and pressure support changes, they have resumed feeds, started a few new drugs/steroids, got an arterial line in his left leg and a central line in his femoral artery in his right leg/groin. He definitely has things connected to him and has been poked more times than we care to think - but if this is what it takes, this is what we will do.

I sign off tonight being emotionally drained, physically exhausted (7 hrs of sleep since Saturday morning) and the proudest daddy in the whole wide world. We have witnessed first-hand all of the prayers that are being sent this way and are floored by the large support group that we have seemed to band over the past 9 months. It is an honor to have each and everyone of you in our lives!

11:03am: I don't want to jinx us but for the past hour Reid has consistently been sat'ing in the high 90s. The respiratory therapists have weaned twice on some pressures and Reid is apparently liking it. Go baby! Go!

7:40am: We have been here with Reid since 1:30 this morning. He is in very critical condition. We had him baptized and now we simply ask that you pray for his lungs to open up. His upper lobes are closed and he is not oxygenating well at all. He's on the max settings of everything and his sats are ranging from mid 70s to low 90s. Soon some of the settings will have to be weaned for fear of popping a hole in one of his lungs.

We've come so far and Chad and I keep second guessing ourselves with regards to his latest surgery. Hard to believe that just a week ago I was holding and playing with my happy, smiling baby boy. He's fighting so hard--please pray that he can hold on and that his lungs open up.

9:30pm: Kristen said it best earlier today: as strong as Reid has proved to be in the past and as much smiles and laughter we have seen in recent months, it is easy to forget how fragile Reid really is. We have seen some things today that I never care to witness again in my life, but we are still here fighting and making little baby steps of progress. While the day started off on a bad foot, Reid has been weaned a little bit on his oxygen (85%) and still satting about 94. The sun has come and gone today and Kristen and I are drained. We remain optimistic and know that Reid will keep fighting the fight. The medical staff in the PICU have been a huge support for us this week and have taken the time to make sure we are comfortable with what is going on and understanding every move they make. Please keep the doctors, nurses and therapists in your prayers tonight for God to give them the strength and knowledge to help our baby have a speedy recovery.

7:30 p.m. The 2.5 hour attempt at the arterial line was unsuccessful. So for now the nurses will draw gases from the PICC line every 12 hours. The problem with this is that they have to waste 5 cc's or so of blood every time they draw from this line to get an accurate CO2 measure and over time this adds up to quite a bit of blood loss. I'm sure a blood transfusion is in our near future. The goal for tonight is to wean the O2 down to 60%. We are currently at 100% so this could be a lofty goal. The Dr. wants to see improvement in Reid's lungs by tomorrow. Hopefully with all of this oscillating, his lungs will open back up.

Another concern is the pulmonary hypertension. Currently, there is no evidence that it is acting up and we pray that it stays out of the picture. It is likely that Reid will have an echocardiogram tomorrow just to be sure but the Dr. said that judging by his oxygen saturations and PaO2 levels that we are safe for now.

So come on Reid!! Let's have a stable and successful night of weaning that O2!!

Thank you again for all of your thoughts, well wishes, prayers and positive energy you are sending our way. As more than one person has pointed out to us today, Reid has been on the oscillator before and survived, and now that he is bigger and stronger he will prove once again that he is one tough little guy!

3:30 p.m.: Well, we are on the oscillator. We are praying that it opens up his lungs. While we associate the oscillator with something very negative, the doctor told us that in this case he is simply using it as a tool to help recruit Reid's lungs, in other words open them up. Reid has been on this machine for about 30 min and he just had his first desat. His CO2 is 66 and soon the doctor will give him an arterial line. Since he's on the oscillator, his blood gases must be checked more frequently. So, in addition to the 2 IV's, PICC line, pulse ox, drug patch, heart monitor, trache, and oscillator tubes he will now have an "art" line. His poor little hands are so bruised from being stuck with an IV.

We are drained. Chad's parents have been here throughout the day to keep us company and bring us lunch. It's so hard on everyone to see Reid so lifeless.

Well, the doctors just asked us to leave for an hour so they could insert the arterial line. Please pray they get it in swiftly and on the first try.

1:00pm: After a significant de'satting episode where the drs almost decided to pull the trache and intubate Reid through the mouth, he is stable for the moment. During that episode which lasted about 20 min, the drs could not get his sats above 60. Finally after some "aggressive suctioning" his sats came back to the 90s. The pulmonologist deducted from the bronchoscopy that the collapsed portions of Reid's lungs are due to the leak in his original trach. Because he wasn't receiving the necessary pressures parts of his lungs collapsed and perhaps all of his secretions are contributed to this. Time will tell. We are praying that with this new trach Reid will receive the support he needs and will be on the road to recovery.

10:15am: [Kristen's blog] Before we went to bed last night I had called Reid's nurse to see how he was doing. We were pretty optimistic that he would be doing well since he had had a decent day and when I had called at 8:00pm he was status quo.

Unfortunately things had worsened. He was starting to desat again, although not as low as the day before, and they had ordered a chest x ray. She said she would call me if there were any changes. Well at 530 this morning both Chad and I were awake and realized that we hadn't received a phone call so we thought Reid must have had a decent night. No sooner did we think this when the phone rang. It was the doctor (never a good sign) and she proceeded to tell me that they were preparing to put Reid on the oscillator because they could not get his sats above mid-low 80's on 100%O2. Well that news is enough to make you jump out of bed.

We arrived at the hospital a little after six and were pleasantly surprised to see that the oscillator was sitting in the hallway. Reid is tough and he is hanging on and so they have not needed to use that dreaded machine. The doctors also decided to do an urgent trache change. Reid's trache had a leak in it and therefore was not receiving all of the pressures the ventilator was giving him. This trache change occurred 2 days ahead of schedule and the surgical resident, chief surgical attending, two critical care pediatric fellows, Reid's nurse and respiratory therapist were all present. It went off without a hitch and now Reid is receiving all of the pressure support he needs to keep his lungs open.

To add to the complication, Reid has an infection. We're not sure exactly what type of infection he has but it looks like pneumonia and staph. He has significant clear secretions coming from his nose and mouth and brown tinged secretions coming from his lungs. In a bit, the pulmonologists will be coming in to do a bronchoscopy. They will send a small camera down his airway and check out his lungs. The x-ray shows that his upper lobes on both lungs are collapsed and they hope to find out if this is due to the infection or perhaps a mucus plug. I think it's amazing they can do this and I can't wait to see what Reid's bronchial tubes look like :)

He is still heavily sedated and paralyzed. Since the trache change his sats have held steady in the low 90's. They just got a blood gas and we (Chad, the nurse, RT and me) all took bets on what his CO2 levels would be. The nurse went the negative Nelly route and said low 80's (she justified it by saying that b/c of his bad night she wouldn't be surprised it his CO2 was high), the RT said 68 as did Chad and I said 66. Reid blew us all out of the water. His CO2 was 55. I like to think he was secretly laughing at all of us :) He's such a tough little guy.

They were just able to wean his O2 to 80%. Hurray!! And with all of these complications it looks like we will be able to stay in the PICU longer than expected.

We will post more as soon as we know more.

6:15pm: well, the respiratory culture has come back with gram stains and shows a sign of infection. It is still too early to know what is growing but we should know within the next 24 to 48 hours. They have started an antibiotic that he will have for 7 to 10 days and depending on what grows, they may have to change it to something else.

They were successful in getting the PIC line in and only took 2 sticks. Thank God!

Feedings are going to resume momentarily at 5cc an hour and will go up by 5cc every 2 hours. At least there is a little bit of good news today...

3:15pm: Just got word that they want to do a PIC line on Reid. His IVs aren't lasting that long and the nurses have started realizing how hard of a stick he is. If they can get this line to work, it will be the first time that anyone has been successful as they have all failed in the past. Please pray that they can accomplish it with not too many sticks.

11:45am: Reid is still holding steady and there weren't really any changes during rounds. They are still holding on feeds for the time being. Nurse reiterated that what she sees of Reid is typical trache post op and that he stoma (site where trache is) looks good. They did an xray and see something in the upper right lobe and are going to do a culture. One more thing to worry about...

9:15am: I called around 4:15 this morning and he had two more episodes of desatting. He hadn't gone all the way down to 5 like he did previously, but had bottomed out around 35-40 both times. They did a manual deep suction again and was able to get some more thick mucus. The RT had explained that every time they suction, it is kind of the luck of the draw as to what you are going to get back. Sometimes, his lungs may be in a position or be tight and may not allow them to get everything that they want to get, so it was probably mucus that was there the first couple times that they had suctioned him.

The ketamine was somewhat doing the job, but Reid was starting to show signs of agitation again and they decided that it was probably best that they use a paralytic to get him completely still (think the drug is called Rocuron). Before they paralyzed him, they had to make sure that he was heavily sedated as they didn't want to paralyze him with him being awake and conscience. That would just render him motionless and allowing him to know that he couldn't move. So, they had a hard time getting him completely sedated, but they eventually got him there.

On top of this, he spiked another fever - this time to 39.1 C (little over 102 degrees F). They gave him some tylenol and it quickly came down. No cultures were taken as they had already sent some off the night before - and since it had been less than 24 hours, they didn't need to pull any more blood.

I called again around 9 this morning and the new day nurse said that since he had been paralyzed that he hadn't had any more episodes of de-satting. His oxygen was back down to 50% and was satting 100.

The doctors will be rounding in about an hour so we will call back after that takes place. We are interested to see what they are going to do about his feeds as he is still on an IV fluids. Oh, and speaking of IVs, he had another one placed in his right hand as the sedatives and the paralytic cannot be run through the same IV.

More news to follow in a little bit...

12:45am: What started out as a good day ended up being the farthest thing from that. Reid had a pretty relaxed day and had been in and out of sleeping for most part. We left about 7:00 to eat dinner with some friends we met in the NICU and when we came back to the room around 8:45p, we noticed that Reid was on higher vent settings and on 100% oxygen. The nurse mentioned that he started de-satting really quick and his saturations went down to 8! They did a quick suction, used the ambu-bag and brought back Reid into the 90s again, but he was still very agitated and he was still working on recovering. We sat in the room for a good 20 minutes and no more than 5 seconds after I mentioned that he was looking better and his sats were looking good, he dropped from 91 to 76 to 45 to 13 to 5 in a matter of seconds. This scared the crap out of us as we have never seen him drop so quick. And before we knew it, all of the lights in the room were flipped on, the nurse ran in, Kristen stuck her head out the room and yelled for help. Within seconds, we had several nurses and two respiratory therapists in the room doing a manual deep suction where they pulled a very thick mucus out. And after a minute or so of bagging him, his sats were back in the upper 90s. The volume of mucus to us was pretty significant, but talking to the RT and nurses, they didn't seem to be phased by it and they said that the way Reid was behaving was pretty typical of post operative trach surgery. The secretions that are generated by having a foreign object in your throat can be significant and can cause "plugs" in the lungs. And when these plugs of mucus are there, they can quickly prevent you from oxygenating.

I felt better knowing that there was a reason as to the madness, but Reid's saturations were still teetering back and forth between the upper 80s and lower 90s. He has little to no 'reserves' and takes time to recover from something like this. The doctor ended up ordering a new sedative called ketamine since the other drugs he was on weren't doing any bit of good. Even after tripling the fentynol, Reid was still awake and thrashing around in pain. Ketamine quickly did its job and you could tell by the monitors that he was relaxed. His heart rate dropped significantly from its elevated state and he seemed to be in a much better place.

We ended up leaving about midnight and on 80% oxygen, he was satting 100. We felt comfortable about leaving Reid and he seemed to be pretty stable. However, they did decided to stop feeds for tonight and put him on IV fluids as a precautionary measure. If he remains stable throughout the night, he will most likely be put back on feeds in the morning.

A very scary night that was full of stress and even as I type this, I am still in shock that it all happened. Seeing this tonight reminded me of the earlier days when Reid was hanging on by a thread. Kristen and I thought that we were prepared for this surgery. We knew what we expected to see visually, but were not prepared for how Reid is struggling to recover from surgery. He has powered through his previous surgeries and when we thought that this one would be somewhat minor compared to the rest of them, we were quickly proven wrong.

When will these days start getting better?!?

10:00am: His temperature broke last night and his labs didn't show anything out the norm, so for the moment, we seem to be in the clear. His 'stool medicine' seems to have worked its magic and there isn't an issue in that department anymore. His pain meds have been increased again back to where they were before they made the cut yesterday. The nurse said he still has his moments of awake pain, but he seems to be a little more sedated than yesterday.

12:30am: It has been a long day at the hospital. Reid is miserable as they have weaned his pain medicines in half. They are afraid of the long weaning process like his morphine/methadone proved, so they are really trying to limit the amount that they are giving him. However, he is receiving extra boluses of the fentynol to help keep it in check. He seems to sleep peacefully and then abruptly awakes and is in excruciating pain.

Kristen was able to hold him this afternoon. He wasn't in a great mood, but was somewhat relaxed compared to the way the rest of the afternoon had ended.

When we left tonight around midnight, they ended up having to give him chloral hydrate to help him sleep/relax. He has fever of 38.3 C (about 101 F) and his heart rate is rather high. While temperatures are fairly common after surgery, he really shouldn't be having one 2 days later. They are running a bunch of blood labs and cultures tonight to see if there is anything that shows up. In the mean time, they have given him some tylenol to help break the fever. We are very nervous as to what this is going to show, but he is in so much pain that it kills us watching him thrash around when he is awake. His heart rate tonight, even while sleeping was around 160. Normally it is around 115-125.

He still hasn't had a bowel movement and has been three days since his last. They have ordered Reglan and MiraLAX to see if they can give him some help in that department. He has been getting feeds for almost 2 days now and I am sure he is uncomfortable from that as well.

We will be calling in a couple of hours to see if there is any news on his labs and to see if his fever has broken. Anyway, here are a few pictures from this afternoon when Kristen was holding him:

12:45pm: Not much to report today. Reid had a stable night - his feeds have been increased to their maximum and his oxygen has come down to 45%. His urine output yesterday was less than what he consumed, so they are going to give him a little extra lasix to help get the fluids off of him.

Since I have a little extra time on my hands without a lot of news to report, I thought I might upload a little video that we took the other day (about 2 or 3 days prior to surgery). His new trick was laying in his crib and grabbing the rings that we have attached to a mirror above his bed and shaking them and kicking his feet. Of course the day I video it, he doesn't giggle and coo like he normally does, but nonetheless, you can see him having fun:

11:15pm: We got into the hospital this morning and Reid was wide awake as the nurses had just finished giving him a bath. He was still in quite a bit of pain and was flailing his arms and legs in the air. He was using his right arm to try and rub his eyes and suck on his fingers, but his arm is taped to a board to keep the IV in good shape. Since this posed a threat to injuring himself, they had to use soft restraints and keep his arms tied down to his legs. He has some movement of his arms, but not much. What pained us the most was that this prevented him from rolling to his side --- which he loves to do to comfort himself.

I was able to give Reid his pacifier this morning and he quickly went to town on it. As I was talking to him, I noticed that he stopped sucking, let the pacifier fall out of his mouth and gave me the biggest smile. It nearly brought tears to my eyes to see him in so much pain and discomfort, but still have the strength to give his father a ear-to-ear smile. Talk about making my day! That one smile is the only one that we got today and at times had tears running down his face with no noise. But that one smile made today a better day than yesterday - a step in the right direction.

As the day went on, they stopped the ativan drip and started him back on the normal bolus doses that he had been getting prior to surgery via g-tube. His fentynol drip continues to ease his pain and keeps him fairly sleepy. He didn't seem to be as agitated when we left tonight and from what we have heard from the night nurse, he has had a pretty quiet evening thus far.

His feedings were around 25cc per hour and are supposed to go up by 5cc every 4 hours until he gets to full feeds. I think hunger may have been a part of him being upset this morning as well. He knows what it feels like to have a full belly and getting a continuous feed probably doesn't give him that satisfaction.

Kristen and I are still in awe of how different he looks without the nasal cannulas on his face -- he looks like a much older baby. I am sure this newness will wear off with time, but it is sure nice to see his entire face! His nose has taken a little bit of a beating from the CPAP and nasal cannulas that he has worn since birth and appears to be a little squished and enlarged nostrils, but we assume this will fade with time as he grows.

Reid has had quite a few visitors today. Four of his nurses from the NICU have stopped by and my parents were able to see him on their way out of town.

No pictures to post as it isn't really a pretty picture to see. His bandaging/padding has a little dry blood from surgery and his neck is being squished pretty tightly as they do not want his trache to come out within the first 7 days. He also has some sutures taped to his chest that are present to help open his stoma in the event of an emergency. Those will be removed next Tuesday assuming things go as planned. He also has two IVs - one in each arm. His circumcision doesn't look pretty and now understand why they usually do this when they are first born. Anyway, long story short, I probably won't post any pictures of him until we get the first trache change and we are moved back into the TICU next week.

Kristen and I are very proud of him. He remains one tough little guy and know that he has proven himself time and time again. We have no other expectations of him other than to keep amazing us with his strength. It brings tears to my eyes every time I think about what we have done to him, but the three of us will get through this bump in the road. And as we have learned over the past nine months (born 9 months ago today), the journey through the NICU and on his final leg towards home is nothing short of a roller coaster ride and I am sure we will have more ups and downs in the future.

I thank every one of you again for your continued prayers and support. We couldn't have made it this far without them.

9:00am: Reid had a stable and quiet evening last night. He is still heavily sedated and they did not make any weans on the ventilator. Keeping his pain in check for the first 24 to 48 hours is their primary goal. They did, however, go ahead and start feeds at 5cc an hour on a continuous feed. The maximum will be 42cc per hour until he gets back on the bolus feeds of 125cc every 3 hours.

Kristen and I will be heading in late this morning to spend the day with Reid. My parents are going to head back to South Carolina today but will make a pit stop at the hospital to visit with Reid on their way out. Kristen and I didn't want any visitors to see Reid yesterday as he was in so much pain and wasn't a pretty site to see. Today, hopefully it will be a different story.

6:00pm: Kristen and I are back in the room with Reid and the dust seems to have settled --- for the moment anyway. We got back here around 4pm and at first sight, things were as we had expected them to be. That was until the nurse had to take a blood gas and pricked his foot which sent Reid into a thrashing, crying (without sound) fit. At that point, we realized that things weren't as we (nor the nurses) expected them to be. He was supposed to be knocked out an comfortable, but with the drugs that he has had over the past 9 months, his drug tolerance has skyrocketed. Even with bolus doses of morphine and fentanyl, they only lasted for about 10 minutes. He is now on ativan and morphine drips to keep his discomfort in check and will most likely be until tomorrow. Seeing Reid in that much pain and not being able to do anything about it broke our hearts.

He is connected to a vent that is breathing for him. They are actively weaning it and hope to have him off of it by tomorrow but will let Reid be the one who dictates the moves they make. They want to push him a little bit, but not to the point where he takes a step backwards.

Feeds will resume this evening at some point and will be given continuously, working from about 10cc per hour and eventually getting up to full feeds.

Kristen and I are going to take off around shift change and head home. My parents are in town and are staying with us and are cooking dinner. We haven't really been home for dinner in a long time, so I think we are both looking forward to a night away from the hospital. Our latest routine has had us at the hospital until about 10:30 at night, so there might be a glass of wine or two tonight to relax, collect ourselves and get ready for tomorrow.

A new journey has begun today --- and it is one that is going to land Reid at home. We still have a lot of questions and don't know how it is all going to pan out, but all of those questions will be answered with time. Thanks for all of the prayers that have been sent our way.

3:15pm: The ENT surgeon just came out and told us that the trache surgery went as planned and Reid did well. The other surgeon took over for the "little whack" as he called it. We should know more shortly. The hard part is over with!!!


1:00pm: We just met with the surgeon and they said that they will come to get Reid in about thirty minutes. We had to sign two new consent forms: one for the circumcision (they got it all worked out) and another for the surgeon to look at his ears while he is under. When Reid had his hearing tested, they noted some fluid on his left ear and they are just going to takes look at it while they have him.

The butterflies are flying.

11:30am: Hurry up and wait is the story of today. We were told at 6 this morning that there was a 25% chance of him having surgery at 8:30... that is until they told us that they were not planning on doing the circumcision (we requested last week that this HAD to be done at the same time). To many, today was the first time they had heard of this request and they said that it was a slim to none chance of having that procedure done today. Kristen, being Reid's biggest advocate, made it very clear that this was unacceptable. Being such a minor procedure in the whole scheme of things, they needed to figure out a way to get it done.

Fast forward a few hours and we have been told that the surgeon that did Reid's last surgery is now trying to fit the circumcision into her schedule. Reid has an IV in his right arm and getting fluids but has not eaten since 10:15pm last night. He has been asleep in his mother's arms for most of the morning, so he is actually handling the lack of feeds a little better than we had expected.

We have been told that we will probably have about 10 minute's notice before the OR comes up to get Reid. He will be getting a dose of Versed right before to help him relax and not remember his little journey to the operating room. We are just afraid that he is going to "lose it" on the way and this medicine will not only help keep Reid calm, but his mom and dad as well.

Anyway... not much else to report. We are in a holding pattern and I will update the blog after we get Reid moved to the OR. We have had a couple of visitors from the NICU stop by this morning to wish Reid well and have had numerous text messages and emails from friends and family. Keep the prayers coming that we get through today successfully and that it is a smooth transition for Reid over the next few weeks.

10:00am: Not much to report today... we are just hanging tight until surgery on Tuesday. Thought I would post a couple of pictures from the past couple of days. The first one is him getting a respiratory treatment. You can tell we are in an ICU with older kids when the masks themselves are funny little creatures. :)



NOTE: after several comments Kristen has received this morning in regards to the second photo - no, Kristen is not pregnant. :)

4:30pm: I have signed the consent forms and it is now official. Reid is on the books for Tuesday as an add-on so we really aren't sure as to what time. He will be intubated, have an IV placed and will hopefully have his circumcision done at the same time as the trache. Very nervous about our decision but I know it is right. We met with the anesthesiologist as well as one of the surgeons and have walked through the game plan. Guess we are as ready as we will ever be.

On a different front, Reid had a good CO2 this morning of 42. They increased hid lasix diuretic and discontinued the one other diuretic he was on. The methadone wean is going really well and he gets the minimum dose every 12 hrs. Before we will know it, it will be gone. Just nice to see some of these drugs getting out of his system and have noticed that he is more awake during the day which affords for a few more smiles, giggles and coos along the way.

We have a fairly quiet weekend planned and looking forward to doing much of nothing and hanging out at he hospital with Reid. On the way to see Reid today, we noticed the holiday traffic and it made me a little jealous that we can't really do anything, but at the same time, it is OK since we are starting to see the light at the end of the tunnel for Reid coming home.

Anyway, we hope that everyone has a safe and happy Memorial Day weekend!

9:00am: I am a 31 year old man and cannot remember the last time that I cried myself to sleep. Last night was one of those nights.

The past few days have been tough and when we went to bed last night, I think it all came crashing down on me and the reality of it has started to sink in. I try to keep thinking of another possibility of how we can avoid this procedure, but all roads lead to the decision that Kristen and I have made. I keep hoping that the fog will lift and it all turns out to be a dream, but I am only kidding myself.

The last time I have felt this upset/emotional was the day my Uncle Jim passed away a few years ago. And as I type up this blog, I am wondering how I can even start to compare this procedure to a family members death?!? But I guess for Kristen and I, this is the death of the dreams we had of bringing home a healthy and normal baby boy. I feel like the past 9 months should have prepared me for what is forthcoming, but I can't even begin to put this into words of how bad this has my head spinning.

8:00 pm: Kristen and I met with the "team" which was composed of the attending pulmonologist, the resident pulmonologist, assistant nurse manager, physical therapist, occupational therapist, student occupational therapist, house supervisor/patient representative, social worker and the case manager at 3pm this afternoon. We believe word had spread, either by word of mouth or via this blog, that we were unhappy with multiple things hence the House Supervisor/Patient Representative. The pulmonologist thought it was in Reid's best interest to have a trache as Reid's development (physically, mentally, etc) was being stunted due to his weakened pulmonary system. The fact that Reid has to compensate for his poor lungs (either by sleeping to recover from the fatigue he endures when trying to do things other than breathe, or by other organs in his body compensating for his high CO2 levels), he is at a disadvantage, and as bad as Kristen and I do not want the trache, it is going to be the best thing for him. This is going to be a huge undertaking for us and I am still not sure we know what we are going to get ourselves into, but at this point it is about giving Reid the support he needs and the environment he belongs in. Spending nine months in the hospital, regardless of age, is not good. As much as our nurses have given Reid, it will never be as much as he will get from us at home.

We are meeting with the trache educator tomorrow and will give our final thumbs up to the procedure on Friday. From there, we will meet with the ENT surgeons to discuss the procedure and will most likely have it done before the end of next week. After surgery, he will spend 7 days in the Pediatric ICU and on the last day, he will have his trache changed by the surgeon. During this week, Reid will be fairly sedated to not only keep his pain in check, but also to prevent him from grabbing at his new 'appendage'. After a successful change, Reid will then be moved back into the TICU where we will probably spend about 4 weeks getting trained and accustomed to the new way of life for Reid. Our philosophy right now is that the sooner we get it done, the sooner we come home.

Life is not going to be a walk in the park and we are going to have a huge lifestyle change. Not that having a new baby at home is not a lifestyle change in itself, but EVERYTHING is going to be different. At first, we will probably have a nurse at our home 24 hrs a day and this will probably be another challenge. We are going to have very little privacy or alone time, but whatever makes the transition home easier, we are all for it. And as much as we hate to ask, we are going to need lots of support from our friends and family over the next few months.

The past few days have been stressful as we have been trying to wrap our brains around this. I think we have made our decision and we are slightly more at peace with what has been put in front of us. I still question why God did this to us and I hope that one day we can figure it out, but right now, we are still very angry about the cards we have been dealt. We are weary about our decision, but we are more than ready for Reid to come home. The trache will be a means to an end and the start of our new life. The day that he is running around and breathing on his own will make this decision well worth it.