Post op Day 3-4

Saturday - The ventilator is OUT! The extubation went very smoothly to say the least. The Drs. were well prepared for whatever may happen after the extubation, but thankfully all he needed was the nasal cannula, on a very high flow of air. This is creating 'postive pressure' against his floopy airway to keep it opened up. They are also trying to wean him from some of the meds, but that is a very slow process. So now that he is breathing on his own, they have to change what sedation meds they can give him, so that has been interesting on what works and what barely touches him. I have learned that kids with Downs metabolize certain meds very quickly and some of the pain meds/narcotics and sedation meds are included in this. The extra chromosome causes this quick metabolizing of some meds.

Sunday - Today was a long, uneventful day. Caleb's pulmonologist is now in the picture to look over his floopy airway issue and to make sure he is getting all the attention he needs in that regard. They left his airflow in the nasal cannula at 10 for now, which is alot! I think they are all a little aprehensive about changing anything in this regard just because of what may occur. Here's hoping they feel they can start to turn it down little bits at a time to see how he does. Caleb was more awake today and I actually could make some eye contact with him for a few moments at a time before he would fade off to sleep again. I am not sure this is a good thing because when he comprehended that it was me, he started to really fidgit and put his arms up as to say "pick me up mom!" Ugh...I can't! He still has two main IV lines in so he cannot be held. It has been 5 days since I have been able to hold my precious boy! He was able to start very small feedings this afternoon through his feeding tube. They will increase that little by little as he tolerates them. I am sure he would much rather suck on a bottle though! :) Our setback today was blood in his urine...not sure what this is from and of course to send it to the lab to check for infection takes a couple days. So hopefully nothing is brewing in his bladder/kidneys in the way of an infection. We are all hoping it is just irritation in the bladder from the catheter. They did remove the catheter because of this, so hopefully it will clear up soon.

We also added to the daily playbook some horrible looking "breathing treatments". These are for a section of his upper right lung that is deflated. Apparently normal after surgery, but there none the less. So they put a mask over his face to force a large amount of air into his lungs to try and get this section to open up. Caleb resists these treatments and gets very upset, obviously...it has to be quite scary to a little guy! To me it just looks like torture. They do this every 4 hours.

Thank you all so much for your prayers and support.
We would not make it this far without you! Caleb is coming along...one baby step at a time! :)
Joanna