The plan

Yesterday was a big day full of meetings with Doctors and surgeons and everyone else who wanted to have a say in Pierce's care moving forward. His primary surgeon described it rather well when he said that the main problem with all of the misinformation we have received is due to an over abundance of chefs in the kitchen. 

After a nice long discussion though, we did finally come up with a plan that they may even stick to this time! Yesterday they restarted his NG feed, and increased it steadily to 45 ml/feed over 45 minutes as of 8 am this morning. In contrast his last attempt on Friday they did only 10 ml over a two hour period. Then at 2:30 today he was taken to the OR where they placed a sort of electrode down his esophagus to do what is called an impedance study. It basically records for the next 24 hours every instance of reflux, as well as how far up the esophagus it goes. Once that is finished it will take the surgical team a few days to interpret the information and see how aggressive his reflux is. 

The next for sure step is a second bronchoscope. That could be done any time between Friday and next Tuesday, depending on the availability of the ENT surgeon. The scope would be looking for two things. First, Dr Fenton believes there is a possibility of a laryngeal cleft. If that was present it could account for the majority of his symptoms and a simple surgery could correct it. The next thing they look for is a localized narrowing of the trachea. Something to show evidence of the innonimate artery pressing down on it. Once they have the answers to those two questions plus the results of the impedance study, we will have enough information to make a much more concrete decision about how best to move forward. 

Pierce is continuing to be a rockstar, and although I hear them say it about every baby to every parent, I feel like they REALLY mean is when they say what a cute little boy he is! On another quick note, Amy and I would like to express how incredibly grateful we are for the support we have received from everyone. The phone calls and texts of encouragemrnt from friends and family, Kristi and Ski for putting up with our craziness for a wonderful thanksgiving dinner, Guy and Carol Ann for their nonstop support, Dave and Dorothy Gregorson for being so quick to run down the hill with a helping hand, and everyone else. Truly we are blessed and I for one don't know how I will ever repay all of the kindness. So again, sincerely, thank you!

Pierce Day 57

Hey!  Sorry about the big delay between posts. This week has been a lot of sitting and waiting and very little new information so it has been a bit frustrating. Rather than an update every day that would basically say that we didn't know anything else, I just decided to wait.

Yesterday was Thanksgiving and I do want to say how grateful I am for Pierce, for Amy, and for modern medicine. Not too many years ago, we wouldn't have our beautiful little man with us any longer. We live in a wonderful world,and frustration with still being in the hospital aside, I'm grateful that we are able to be here and get Pierce the care and support he needs.

So today after a week of being fed through the NJ tube, they finally started him on NG feedings again. It's a relatively slow process, they leave the NJ tube in, and put a second tube down the other nostril through which they will slowly reintroduce his NG feedings over the next week. They started that at 2 pm today with 10 ml fed over a two hour period. He tolerated that like a champ but when they went to do his next feed at 5, he still had 7 out of 10 ml left in his stomach. This is fairly common when first restarting feeds until the stomach remembers to push the food through, so they just held off on that feed and checked again at 8, and he is in the middle of his second feed now. The plan is to increase his feed by 10 ml per time per day. Monitoring meanwhile to check for signs of reflux and or distress.

They didn't learn anything from this past week. Instead of it being obvious pretty quickly as we were told, instead they kept him on an oxygen cannula all week and didn't record any of his little episodes, so there was little point to his week of NJ feeding other than a stall tactic so that the surgeon can get back from vacation. We are being told that they don't record self correcting episodes, and it feels like the blank stare Olympics when I ask how exactly it's a "self" correcting episode when he is on oxygen. To me that's a machine corrected episode that we have no clue how extensive it could have been if it were "self" corrected, but I'm just using common sense, not vast medical knowledge. We have a meeting with Dr Fenton and the neonatologist and the nursing staff on Tuesday to hopefully provide some clarification about all of this and some idea as far as what to expect with a plan moving forward. Amy will be the one there, so I'm confident we will get some answers.

That's it for tonight, we will just be watching his tolerance of his feeds and hopefully it all goes well.

Day 49

Not much for news today. They did remove his intubation, or I guess more accurately HE removed his intubation. Apparently early this morning he finally managed to grab ahold of the tube and extubate himself. Lucky that was already the direction they were planning on taking him!

The main surgeon told us that it should be pretty obvious pretty quickly whether or not the NJ tube fixed the problem by getting rid of the reflux. Well....his bradycardia/dsat issues have continued. Amy and I are both pretty floored at this point in time that the same surgeon who told us that if the breathing issues continued or worsened is still saying that we should wait and see. To be honest, we were told by the hospital that he is going on vacation next week, so we are both feeling like he is using the "wait and see" technique to buy time so that Pierce's surgery doesn't cut into his vacation time. Heaven forbid, since he just got back from France two days ago.

Sorry all, that was my moment of vent. Pierce will be great! He's a very strong little man and despite being a pretty unhappy little boy about the pain in his throat, he was able to have mommy hold him for several hours today so that is progress and we are both grateful for that.

No more news tonight that I can think of! I'll write more tomorrow and maybe even figure out how to get a few pictures on here!

Pierce Day 48

Well, it's never too late to start a day by day updated blog, right? It's been a fairly busy several days, and seeing as Amy and I have been told different information by different doctors seemingly every hour on the hour since Pierce was moved back into the NICU, I will work from the assumption that everyone is completely in the dark about the current status and plan of action. This is probably a pretty safe assumption because I myself had no clue what was going on until a few hours ago.

Pierce's surgeon, Dr Fenton has been out of town for several days, and we were waiting for him to come back today (we were told to make a decision about when to proceed with surgery, as this seemed to be the foregone conclusion of every other doctor and surgeon who poked their heads into the room.)

While Amy was at the hospital this morning waiting to talk to him, she was informed that his flight was delayed due to the air France threats. Obviously he had no control over that, but the frustration of waiting and waiting with no answer had both of us wanting to strangle him at that point. Finally we were able to talk to him, and here is the updated information and plan as well as I know it.

What Pierce is dealing with right now is called tracheomalacia. It is common in babies who go through the TEF repair surgery, however, not usually as extreme as Pierce's case. In his case, with the severity, they believe there are only two possible causes. Either he has severe reflux which is causing distress to his trachea on the inside and causing it to shut down intermittently, or his right innonimate artery is pressing on it causing the collapse. Because they can't rule either out yet, what they are doing is changing (or actually already changed earlier today) his NG tube to a NJ tube. What that means is that his feedings will be delivered directly into his intestine, skipping the stomach. This will allow them to extubate him and monitor for any further Bradycardia/apnea issues. If his little episodes stop, they will know that it's the reflux causing the issue. If they continue or worsen, they will know it's the artery at which point they would proceed with the aortopexy. Aortopexy is a surgery where they go through his side, with an incision very similar to his TEF repair and staple his aortic arch to his sternum to relieve that pressure. If it's the reflux, they can do a procedure that disallows anything coming back up from the stomach, but would also more than likely have to insert a g tube through the wall of his stomach for food. Typically TEF repair children have a difficult time swallowing and eating as it is, so the additional procedure to disallow the reflux would compound that.

It will be a very intense few days for us as we monitor his status and pray for the best outcome. Honestly I don't know what to hope for as far as the cause of the issue, I just want him to recover and get healthy. Thank you everyone for the prayers and well wishes. I will try to update this a little more often so that everyone is up to date.