Its been a long day- on the good news front, his lungs are almost clear and he has gone from 3 liters of oxegyn to just 1/4. The hope is to have him off the oxygen by morning if he continues to do well. They have dialed back his diuretics and hopefully, the fluid will continue to drain and no more will build up. He needs to build up his electrodes now that the diuretics have been backed off. Also, Grandma and Grandpa came down from Metuchen to visit, it was a nice dinner break from the cafeteria.
On the concerned front, no eating still. He did 15 ml overnight at each feeding with the nurse but had to do the tube the remainder (85ml/3 hours). When I got here this morning, he was awake and ate for me, two times he had 40 ml by mouth and 45 by tube, but the rest of the day, zip. Doctors think its a matter of time for him to start eating, really when he starts feeling better and more like himself. Ugh.
His breathing\respiratory rate has also increased quite a bit but again, doctors assure me that this is also a result of fluids leaving his body and he is testing his lungs out. Its just hard to see him breath so hard, even in his sleep. They are monitoring this and keeping an eye on him.
Its exactly a week ago Liam and I boarded the helicopter to CHOP and began the journey to a healthy heart. Now, the heart is healthy but so many other things are frightening me. His feeding really concerns me because that was the strongest skill he had developmentally, and I want him to be able to nourish himself. They discussed us maybe going home with feeding tubes. I hope we can avoid that, I truly do. As the motto at CHOP goes, Hope Lives Here.
When we first met the team here, they said the average recovery was 4-7 days post surgery. Tomorrow is 7, so looks like we are going to be here a little bit longer than that. I want him to be healthy before he comes home but I really do miss holding him without wires and cuddling in bed. I think he does too, he is becoming more fussy and I am having a hard time keeping him quiet sometimes. Gloworm is doing a better job keeping him happy right now, as you can see in the picture.
That's all for tonight, need to go get a shower and some sleep. Keep praying for us and we thank you all for the love.
Hoping you can go home soon! By the way, that's the thing about sick babies that I still struggle with...when they don't feel well, they don't eat. I always try to force my daughter to eat when she's sick, but she just doesn't want to.
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