Daniel Updates 8/26/2018

Daniel has had a tough six weeks.

1. He was born on Saturday, July 14th.

2. He had the pulmonary bands surgery on Friday, July 20th.

3. He started having Brady episodes on Wednesday, July 25th. He would stop breathing, his heart rate would crash, and he would de-sat over and over again. They were able to stop them by bringing his dose of prostaglandins down and giving him caffeine.

4. His PDA started closing on Wednesday, August 1st because of the lowered dose of prostaglandins. The PDA was the opening that had to stay open for him to live. When it started closing, it was a huge crisis, and he was almost rushed to emergency surgery. Thankfully his PDA started opening again when they blasted him with a huge dose of prostaglandins. I was scared he would have Brady episodes again because his dose was so high, which is what caused them the last time, but thankfully his maturity and the caffeine did the job.

5. He had the Norwood procedure on Friday, August 10th.

6. He was extubated on Monday, August 20th. He spent 10 days intubated. It was a really terrifying ten days. Daniel seemed like he wasn’t making any progress, and he was incredibly swollen and sedated. Doctors did so many things to try to get the fluid off. In the end, Daniel just needed some time to heal.

7. He had his right atrial line (a line going directly into his heart) removed on Tuesday, August 21st, along with the remaining chest tube. He also had his arterial line (an IV going into an artery in his right wrist) removed then too. He had his art line since the PA bands surgery, and it felt like a huge accomplishment to have it removed.

Since then, Daniel has been primarily sleeping and growing. He weighs 6 pounds 4 ounces, which is up from 5 pounds 2 ounces at birth. He is totally stable, and he is very easy to console. Any time he cries, it is really easy to get him to calm down. He seems so incredibly sweet, and he loves snuggling. He loves it when his daddy reads to him, and he watches our mouths when we talk, moving his mouth too. He also loves his pacifier, but only when he is happy. If you try to give him his pacifier when he is upset, he gets even more outraged.

Around the time he was extubated, we found out Daniel has acquired a bacteria called Serratia. He somehow got it here in the PICU, and several patients have gotten it. The hospital has no idea how it spread. While it is unfortunate that Daniel got it at all, it is good that this bug responds well to antibiotics. Daniel has recovered quickly from the infection, but now he is in isolation. Apparently bacteria colonize even when they aren’t active, so Daniel will always be in isolation when he comes to the hospital now. When he comes back to get his Glenn heart surgery in a few months, he will still be in isolation. Because of the Serratia outbreak, we will remain in the PICU until Daniel is discharged from the hospital.

Daniel’s eating is the last thing we have to figure out before we can go home. Right now Daniel is getting continuous feeds through an NG tube. The NG tube goes down his nose and throat into his stomach. The NG tube is the white and purple tube in the picture below, and the white tape holds it in place.

On Thursday, August 23rd we found out Daniel has a paralyzed left vocal cord. The nerve of the left vocal cord wraps around the aorta. When Daniel had his Norwood, the surgeons had to move the left vocal cord nerve out of the way so that they could dissect the aorta. When they moved it, the vocal cord nerve stretched, which caused his vocal cord paralysis. Hopefully this paralysis is temporary. Usually the function of the vocal cord returns in a few months. However, it might not. There is a chance this paralysis is permanent.

In the short term, the paralysis causes problems with his eating. Apparently the vocal cords sit at the entrance of the wind pipe. When one is paralyzed, it prevents the opening from opening or closing completely. If Daniel’s wind pipe never fully closes, then it might mean he is aspirating (fluid going to the lungs) when he drinks from a bottle. Aspirating can cause pneumonia, which would be really serious for Daniel.

On Tuesday, August 28th, Daniel will have the barium swallow study done. I’m not sure how this works, but the occupational therapist will feed Daniel a small amount of breastmilk, and somehow the doctors will be able to see where the milk goes– down to his stomach or down his wind pipe.

If Daniel is aspirating, he will get a G-tube. The G-tube will be inserted through the abdominal wall directly into the stomach. This is very common in babies with HLHS, and it is apparently very little trouble to deal with, all things considering. He will receive his breastmilk directly into the G-tube. Twice a day, I will give him between 5-10 ml of breastmilk from a bottle just to practice sucking, but otherwise he will be fed completely from the G-tube.

If Daniel is not aspirating, he will still probably get a G-tube. Daniel is 6 weeks old and hasn’t had much practice feeding from the bottle. He is enthusiastic about it, but he tires out very easily and can’t quite get the rhythm of sucking, swallowing, and breathing down. If he is not aspirating, I will feed him as much as he will take from the bottle and then give him the rest into his G-tube.

***I just deleted a big paragraph about breastfeeding. I would prefer to breastfeed Daniel. I deleted the paragraph because I will probably not get to even try. If you are curious to know more, feel free to ask me. I know I am very blessed that I am producing breastmilk for him to bottle feed, and I am very thankful. I am just including this paragraph because someone out there reading this who has a baby with CHD might be wondering, “what about breastfeeding?” If you do have a child with a CHD and a paralyzed vocal cord and succeeded at breastfeeding, please contact me!***

In the long term, Daniel’s paralyzed left vocal cord may mean he has a very quiet voice. Right now he has a very quiet cry, and he sounds like is snoring when he breathes and sleeps. Even if the paralysis is permanent, there is a good chance that his body will compensate somehow so that he sounds normal when he speaks. To be honest, at first I was heartbroken when I found out about the paralysis. It is just one more thing Daniel has to deal with. I hate that he may be even more limited than he was before.  I don’t want him to have to wonder whether he can be a lawyer or a teacher because of his quiet voice. After thinking about it, now I am not worried at all about the long term effects of the paralysis. I am just glad my baby boy is alive and doing well. Who knows what kind of therapies will be available for Daniel down the road. If it is permanent, we will work with a speech therapist and do everything we can to help him deal with it.  Who knows what the future holds. It is all in God’s plans, and we will continue to fight for Daniel.

Thank you all so much for the incredible support. Please continue to pray for Daniel. We are almost home!!! The last piece of the puzzle will be figured out Tuesday (swallow study). I will post more updates then.