Update

Hi friends.

I wish I could brag that I have amazing news again, but I do not. Uuug. We have had a rough week or so with Oakes.

He is in the OR right now, so I am going to make this short and sweet so that I can be hands free when he gets back.

So in my last update I shared that Oakes was going through withdrawal. He has had classic signs - elevated heart rate, feverish, sweaty, loose stools, and just rageful fits occasionally. Oakes has had withdrawal issues before and it is just so upsetting to watch, but Greg and I knew that he would get through the worst of it and we would move on. However, even though his CICU docs have been increasing his meds and treating his fits, he has continued to have them, which has left them scratching their heads, and they have been asking, "What else can be causing these fits."

On Monday, Oakes went to the OR for a rigid bronch procedure - they wanted to look at his airways. It had been about 5 good weeks since the last one, and they wanted to see if there were any issues there that could explain his behavior. This turned out to be a great move - his left bronchi was almost completely closet and his right was barely open. At the time the decided to dilate the left side, but once the balloon was inflated his stats plummeted so they wrapped things up and brought him to his room. He has been paralyzed and sedated ever since. There is a chance that the obstructed airway could cause the fits that Oakes was having, but the doctors are not convinced.

There is speculation that Oakes withdrawal symptoms were mistaken for "Neuro storming". This happens sometimes when a person has been on sedation meds for an extended period of time. When their meds are slowly taken away the brain kind of freaks out and causes theses fits. Of course it is not that simple. That is my non-medical explanation. The big piece of storming that is most upsetting is that his would indicate a brain injury for Oakes. Obviously, devastating news that we do not want.

Neurology actually came to see Oakes on Monday before he was put to sleep for the OR and they were shaking their heads saying, "Nope, this kid is not storming." They shared that he was alert, interactive, responsive, his eyes looked good, his movements were controlled and coordinated, they thought this was 100% withdrawal. And standing in front of them was our Attending, Dr. Oren shaking his head saying, "This is not withdrawal." Obviously, we are not 100% sure what is going on, but Oakes is scheduled for an MRI tomorrow morning at 8:30am, and this should give us a lot more info about his brain.

This could be crazy ramblings of a mother in denial, but a brain injury makes NO sense to me. NONE. I was a weepy mess on Monday night, I just can't begin to wrap my brain around that pending diagnosis, so I decided I wouldn't. I will wait till they give me final details till I melt into a pool of goo. For now I am praying that this is not an issue that we will have to deal with.

So, Oakes is in the OR now. Like I mentioned both Bronchi looked crummy and his left side was ballooned on Monday. Right now they are going to peek at the left side and see if it looks any better, as well as balloon his right side. Much more minor, his broviac line, a med line that delivered meds very close to his heart that he has had since before his transplant in July was suspected to have a small infection in it. It was removed on Monday and they are planning on replacing that in the OR during this visit as well.

Since Monday, and the discovery of these tiny airways has again brought the discussion of stenting Oakes' airways to the surface. I know I have shared, but to remind you, traditional stents would not be good. They would likely give Oakes a few months of life and that would be it. Devastating. After these last 5 weeks of dreaminess, I can not even go there. Dr. Egtastady, however is talking about "new" biodegradable stents that could also last a few months, but they could be inserted over and over with the hope that they would, over time, allow Oakes' airway to grow and hopefully outgrowing this small airway issue. Dr. E had never placed these stents, but the guy that has done the most placements, with the best success rate is in London. Dr. E has been in touch with him and he has agreed to come here to St. Louis for our Oakes. Ok, so there is some amazing news! We are in the wait and see mode right now. But if that is a direction that we have to go in, as my Mom recently shared, "Bring on the Brit!" Of course, I will share all details as soon as we hear something.

It has been some time since I have asked for lots of prayers, but I'm asking again. It makes me sick that Oakesie has been doing so well, and we have now made a complete 180, we have takes an enormous step back, we are in a place that I thought we would never revisit. Please pray for Oakesie. For more restful healing, expanding airways and a beautiful and perfect little brain. Please pray for Greg and I, our sweet Isla and our families as we strap our seat belts back on. Please also pray for all of our CICU friends and families. We have become friends with some really sick but really special little ones here lately, and the need for those healing prayers never ceases on this floor.

Love to all of you, heart strings, hugs and kisses!

Becky