AV Canal Defect & Chylothorax

If you haven’t read the first part of our journey with Down Syndrome, you can find it here: Part 1: Two Words…
At this point of our story, Joshua is just about 3 months old and suffering the effects of congestive heart failure due to his AV Canal Defect. They scheduled Joshua to have surgery on March 26, 2011. We knew that he would have to stay at Yale for about a week after his surgery, so we spent the week before his surgery, busily trying to get everything at home organized and get the lists made for the family members who were watching our 3 year old while one or both of us were absent.
The night before surgery, we stayed at a hotel about 10 minutes from the hospital. We  decided to stay local because we had to be there at 7 am and Joshua was not allowed to eat or drink after midnight the night before and neither of us felt like driving for an hour with a hungry baby in the backseat. I remember that night clearly. I was laying next to him in bed and just watching him sleep. I barely slept that night. I knew God was going to take care of him but I wanted to cherish every moment I could should something happen to him during the surgery.

 

We made it to the hospital by 7am,  got Joshua all registered and in his gown for surgery. I couldn’t bare to be the one to watch him go to sleep so I had my husband carry him to the OR and hold him while he drifted off. And then we waited. All of our families came to sit with us for those 8 hours and we anxiously looked forward to any word from the OR. Finally the doctor came out and told us that the surgery went successfully and we would be able to see him in a little while.
Even though I had spent hours researching this surgery and the procedures they would use to repair his heart; I don’t know if I was completely prepared for what I saw when we were finally able to see him. It was so heart breaking to see him connected to all those tubes and wires.
That night was the longest night of our lives….they say the first night is the worst and if anything is going to go wrong, it usually happens then. There was a nurse or two in with us all night, constantly checking and changing his lines, flushing his IV’s with saline and administering pain meds. Sleep was not really an option with all the people and beeping machines. At one point, we were talking to the nurse and we could see Joshua (who was still sedated) trying to move around and they had to ask us to whisper because they said he could hear our voices and was getting agitated in his sedated condition because he wanted us.
The next day they finally took out the breathing tube and allowed him to completely wake up. It was so exciting to see his eyes open and him smile at us. Honestly, I had read too much about all the bad things that could happen during this surgery and worried he would wake up and not know who we were. (Google can be my worst enemy sometimes!)
(One of my favorite pictures, is this one, of my father in law visiting Joshua. I just love the way Joshua looks at him. It captured such a sweet moment.)
We still weren’t able to hold Joshua until they took out the chest tubes and when the anticipated day came, the doctor noticed a milky substance leaking into the tubes. This led to the diagnosis that Joshua had chylothorax. Apparently, the surgeon had accidentally cut some of Joshua’s lymph nodes around his heart. Now the chest tubes would have to stay in a little longer and he was going to be unable to consume any fats for 6 weeks until the lymph nodes healed and were able to handle the fat again.
At this point I was still breastfeeding and was told I was going to have to either stop breastfeeding or pump it and save it for the next 6 weeks. Then a doctor mentioned that this had happened a while back to another child whose father was a chemist and he had figured out a way to use a centrifuge to separate the fat from the skim. The process was basically to take the pumped breast milk, put it in test tubes, spin it for a certain period of time at a certain speed and then skim the fat off the top and feed the skim milk to the baby.  That family had donated their centrifuge to Yale in case this random occurrence happened to another child whose family really wanted to continue breast feeding. The hospital offered to let us try it if we wanted to go that route, and we could see if Joshua responded well to the skim milk or else we would have to switch to formula . So, for the rest of the week in the hospital, I would pump and then Daniel and I would put it in test tubes, spin it then feed it to Joshua. It took multiple batches to produce enough for a single feeding and we became quite the tag team. Anyone walking by our room probably wondered what in the world these two mad scientist were doing! Thankfully, it worked and Joshua stopped having as much white discharge coming from his chest tubes and we were given the ok to continue this method when we went home.
Final the day came for the chest tubes to come out and I was finally able to hold my baby boy. It was such a long anticipated moment. I held him for what seemed like hours but I was trying to make up for lost time and hoped he wasn’t upset that I had not picked him up all those times he had cried for me. After a few more days, we were finally discharged with clear instructions that, for the next six weeks, we needed to pick him up using the scoop method and not pick him up under his armpits as this could separate his sternum. There was also the general wound care instructions and germ prevention suggestions. A visiting nurse was also sent out every few days, in the beginning, to check on his incision and make sure he wasn’t getting an infection.
 It was so nice to finally be able to bring Joshua to church to meet all of our friends and the people who had been praying for him. It worked out that the first Sunday after his discharge was Easter Sunday. It was a great day of celebrating both the Lord’s Resurrection and our healthy little boy.
Easter 2011
The next six weeks were very long. Mainly because I would have to pump multiple times a day and store my milk in the fridge, then when Daniel got home from work we would spend over an hour spinning countless cycles of milk in the centrifuge, scooping off the fat and saving the skim. Then we would have to sterilize the tubes for the next day. Meanwhile, I would also have to bottle feed Joshua. So, I feel like all I did for six weeks was feed Joshua, but to me, it was worth it if he was getting the essential vitamins and nutrients in my breastmilk.
 All those long days and sleepless nights trying to keep him comfortable were worth it. When it got hard and I was discouraged and exhausted, I would just look at his smiling face and be encouraged that I could make it through another day. My favorite verse that helped carry me through the tough times, was Jeremiah 29:11 that says, “For I know the plans I have for you, saith the Lord, plans to prosper you and not harm you, plans to give you a hope and a future”. We ended up using that as Joshua’s dedication verse at church, as well.
  We would have never chosen to have a child with Down Syndrome and when we found out his diagnoses we honestly felt like our life was over. But now, looking back, it’s not even close to as scary as they told us it would be. I’m not saying every day is easy, it’s honestly exhausting and down right hard, but he is so worth it. He has taught us so much about life, empathy for others, and strength. This kid is a fighter and he is determined to do everything everyone else does. We have learned to not limit him, he is far smarter than I ever anticipated. He surprises us every day and we are so blessed to have him as our son.

 

 

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