Patrick was finally discharged last Wednesday, Feb 2nd. Happy Groundhog’s Day to us!
On a side note, Patrick’s Aunt Aubrey also came home from Brazil that day–she had been serving as a missionary for over a year and a half. A good day all around.
Ready to roll out:
Patrick rebounded really quickly with the feeding tube (NG tube) in the hospital–we were able to keep his belly full. Unfortunately, it was a bit TOO full most of the time and he had a lot of trouble keeping the food down. I don’t think he like the Portagen any better in reverse…
I had to put the tube in to prove that we could handle it at home in order to get discharged. Here I am using my lovely plastic stethoscope to make sure the tube is in the right place. If I could hear air “popping” into his stomach when I pushed it through the tube then we were good to go.
We were pretty excited when one of the Nurse Practitioners suggested that we try Enfaport, another non-fat formula. It is new or not-as-common or something like that. Patrick likes it much better and although he came home with a feeding tube–it came out the next day and we have not needed to put it back in. He is eating on his own, and getting closer and closer to the amount of formula they would like him to have each day (about 25-28 ounces).
We are also allowed to give him breastmilk now as long as we remove all of the fat. We thought Patrick would be delighted to have breastmilk again–but he didn’t really react much. Maybe it isn’t as delish without the fat? I can’t blame him. At any rate, he likes the Enfaport just fine so we are sticking with that to play it safe. After this month his lymphatic system should be well enough to go back to our regularly scheduled feeding program of the fatty-fat milk.
Patrick is thriving at home and we are so grateful for all of the prayers and support that got him (and us) through this adventure. I can’t even tell you how nice it was to have people feed us, visit us, write/comment, and I am still amazed by Patrick’s fantastic grandmas who helped care for him in the hospital. Thanks to them I was able to spend some nights at home in my own bed, leaving Patrick in good hands. He is one loved little dude!
Patrick’s bedtime schedule is still a little out of whack from the hospital, but that is a small price to pay for his heart to be working so much better ♥.
We have their attention today because P is so miserable. He refuses to eat the formula, so we finally let them put in a feeding tube. As much as we hate it, it is better than starving the poor kid. He’s onto our tricks and won’t be convinced to eat the nasty Portagen.
Here he is asleep with a chocolate dribble down his cheek. The nurses had us try mixing chocolate syrup into the Portagen to improve the taste…it helped a little at first, but now he will probably just hate chocolate milk forever.
Yesterday after Patrick had been drinking breastmilk again his chest tube started to drain white/milky. The nurse explained that this might be a sign of chylothorax (‘chyle’ just means ‘fat’), and this morning during rounds they confirmed that it has continued and diagnosed it. Basically, during surgery his lymphatic system was traumatized somehow and is now leaking the fats from Patrick’s breastmilk.
In response, they have Patrick eating a special formula called portagen (he’s had 1 oz so far–it is funny-smelling, but hopefully he doesn’t think so). He may need to be on a portagen diet for up to 6-8 weeks, but it will just depend on how he’s doing. From what I understand, portagen contains medium chain triglycerides instead of the long chain ones found in breastmilk and regular formula. The important thing is that the portagen does not need to be processed through Patrick’s lymphatic system and therefore the fats won’t leak out. That will be a win-win because Patrick will be getting the nourishment he needs and the drainage can eventually stop so that the chest tube can be removed. He’ll be much more comfortable without the chest tube.
Other than the chylothorax, Patrick is doing great. His BP is no longer a problem and they have been able to decrease the number of drips/meds he’s on. He’s down to oral tylenol and ibuprofin (actually he’s on a stronger version of ibuprofin, but I can’t remember what it is called) for pain.
This morning he was interested in looking at his books, although he was a little frustrated that he couldn’t hold the books and help turn the pages like he usually does (he still has an IV in his right hand so it is bandaged up and has a sock on it…) He was trying to grab his feet as usual, and wanted to be picked up. Despite his annoyance at his currant limitations he is quite a trooper and is now napping.
Patrick’s surgery went smoothly and we are waiting to see him. They did a tricuspid valve repair and a bidirectional Glenn procedure. They also partially closed his ASD. The surgeon, Dr Nigro, and the anesthesiologist have both been in to let us know that things went well. They did give him one unit of the blood we had banked for him as well as 90 cc’s of platelets. He may need more blood in the next few days. The anesthesiologist told us that little P looks pinker already.