Day 6 - 1

I think I made it sound like the chylothorax was not that huge a deal, but I think it is huge. Babies that have this can become malnourished because their little bodies need all that fat; breastmilk is around 40% fat. Obviously a malnourished baby would have a hard time healing. He'll have to be in ICU and have his drainage tube in until this can resolve, which from googling (I know, I know) could take weeks or months even.

Quote:

 

Chylothorax is not uncommon following congenital heart surgery. It often results in prolonged chest tube drainage and hospital stays. Due to the feeding difficulties, it often results in malnutrition and the need for central hyperalimentation. In addition, it results in a depressed immune system with the possibility of subsequent infection. Chylothorax can be a significant contributor to post-operative morbidity and mortality.

I was so hopeful that once he was off the vent and I could hold him and nurse him, that my touch and my milk would speed his healing. I feel like babies need that human touch and all I can do is hold his little hand. He is used to me sleeping in bed next to him every single night. And I am used to that too. This is just breaking my heart and I cry as I sit here typing this.

I wondered about skimming breastmilk so he could tolerate it. I found a LLL article about a woman who went through this same thing with her baby after open heart surgery. Basically just skimming the milk would not get enough of the fat out. They actually bought a centrifuge to spin her milk for her baby, which ended up saving his life. If anyone wants to see the article it's here.


Also I have been super happy with all of the doctors and nurses until our day nurse yesterday. She seemed only to give him his meds AFTER he was super upset. She should have anticipated and gave it to him before that point like all the other nurses have done. She seemed flustered all day and like she never knew what to do first.

During her care, his drainage tube actually came apart!! After he was extremely upset (not actually crying since he can't cry with his breathing tube in, you can just see the distressed looks on his little face  ) I kept hearing this odd noise, but figured that must be what his new drainage tube sounds like. So she comes in and gives him his meds after that. Then he calms back down and goes to sleep. Hours later he is up again and extremely upset again since she is not managing his meds correctly IMO. I still hear that noise this time. When she comes in she uncovers him to check his diaper and notices that the drainage tube is apart! There is chyle (the drainage from his tube) all over the bed  The noise I heard was the tube sucking air. I was sick, just sick.

She becomes super flustered. He is still so, so upset. She freaks out and is trying to fix the tube. Once that was fixed she was going to change his diaper which apparently was super wet. But then realized oh yeah, his meds. Ugh. Because of this tube coming apart, he ended up having to have 3 additional x-rays because they had to set the tube again. They had to undo his sutures and now there is blood in his chyle (they save the chyle so they can measure the output and now it is red).

I talked to the head nurse and she won't give us this nurse again. Still makes me realize I need to be more active in his care and tell them what I think it is he needs, not just assume that they will know.


I know this is kinda gross, but this is the chyle that they drained from his right side chest cavity. It is enough to fill up a 16 ounce water bottle! I can't believe all that was inside him. No wonder he was having a hard time breathing and was so uncomfortable.