11:50pm: Reid is still at 38% O2 and has had a pretty uneventful evening. We left the NICU around 7pm and he has been asleep pretty much ever since. There isn't much weaning left to do and the nurse said the logical next step would be extubation. She was going to weigh him and bathe him, so hopefully we continue to have another good night.

The nurses have noticed a large amount of secretions coming out of his stomach - clear liquid that has a consistency of saliva (which is what they assume it is). They are curious as to why this isn't being digested so they ordered an ultrasound on his stomach and bowels to see if there was something that they were missing. His milk is obviously being digested normally, but it is being fed to him past his stomach. The ultrasound was looked at by the tech this morning/afternoon but has not been formally read by the doctor. We are assuming no news is good news. Probably not worth mentioning... but there really isn't a whole lot going on in room 2258 these days.

It felt awesome to hold him today... Kristen held him for about an hour and I held him for maybe a little longer than that. He needed some male bonding time as I hadn't held him since about the 15th of December. At one point, we both took a little snooze together. :) Anyway, hope you guys enjoy the pictures (the main reason I wanted to blog tonight).

3:45pm: things are holding pretty steady today. He is currently on 38% O2 and they have reduced his pressure support to 6 and his BPM to 14. Inspiration time down to .55. PEEP is still at 8. He looks like a whole new baby though as he has lost about a pound of water weight. It was about 10.5 pounds a few days back and when they weighed him last night, he was at 9.4 lbs. I am going to keep this blog short as they just finished a blood gas (7.38 pH, 39 CO2 is 39) and he is about to be put into Kristen's arms. Pictures will come at some point tonight.


9:00am: Reid decided to throw up again last night --- the same kind that he did about 3 weeks ago when he had come off of nurcuron and also when he was getting stress levels of hydrocortisone. These steroids tear up his intestines and causes ulcers to form that eventually bleed. Luckily, he only had one episode of that last night, but they did take his feedings away.

I just got off the phone with the nurse and his O2 was at 42 and was wide awake. She said he was looking at his balloons and at the nurse when she was talking to him. He was also holding her hand and just very content, so hopefully when we go in today, he can be as wide awake as he is now.

They are about to start resuming his feedings at a cautious 1cc per hour just to make sure that he can tolerate it. They looked in his stomach and the only thing that was found was a normal clear liquid - so it looks like he got rid of all of the old blood by himself.

I can't remember if I posted this yesterday or not, but his IV in his scalp had fallen out. His nurse at the time couldn't get a new one started (and she is one of the best IV-givers in the unit), so they decided to let him rest and wait and try again later. The nurse this morning found a good vein on his foot and tried that one two times, but she said the vein forked like a road and could get it threaded... so, they are letting him rest again. If there is someone that is working today that is really good at giving IVs, they will try again, and if not, they will keep administering the medicine through his central line. This isn't ideal (as I believe the IV was used for the morphine) as it goes straight to his heart, but they will make use of it for the time being. What they don't want to do is stress him out.

Long story short... Reid is doing pretty good and is requiring a little more O2 than he was yesterday, but I think he is quite a bit more alert now. Looking back a week or so ago when they tried this (taking him off the nurcuron), he was at 100% O2 (compared to 42% today). This kid has some fight in him!


12:15am: It is getting late but I wanted to get the video up on the website that Alison made today. It is so wonderful to see his eyes open again!! Kristen and I have felt very disconnected with Reid over the past week as there has been zero interaction, but with the visit today, it makes everything that we have been going through worth it.



Reid has a meeting with endocrinology on Monday. Dr. Piazza has started the weaning of the dexamethasone today, but is very cautious as to how to move forward with the finalizing doses. Reid has been on hydrocortisone for quite a while now, and he is a little concerned with weaning both steroids at the same time. The dexamethasone can have some impacts on the pituitary gland and he wants to make sure that he is weaning the drug at the correct times. The endocrinology team will help devise a plan.

When I asked Dr. Piazza tonight, he was very pleased with Reid's progress. I had also asked when a possibility of extubating him was... and was thinking that it might be a week or so away, but he had hoped it would be sooner than that. If his oxygen requirements can maintain where they are at, I am curious to see if they could skip the CPAP and move straight to the high flow cannulas. Wouldn't that be the best thing in the world?!?!

Currently, his rate (BPM) on the vent is 16 and his PEEP is 8. We are starting to get close to extubation numbers and it is overwhelming to even begin to think about it.I can't even begin to tell you how excited we are... and are dreaming again about the day that he gets to come home. We deal with this constant fear of the unknown... and it wears on us... but we have a new focus on what we have in front of us and cannot wait for the day that we get to load him up in the car and bring him home.

OK, bed time for me. Thank you to all that have kept Reid in their prayers --- It means the world to us!