After our big snow last week, Isaac was able to return to school this week – yay! He loves school, and today we learned that is school loves him 🙂
When he came home today Isaac handed me an envelope from school, we opened it together and couldn’t believe the contents…. It turns out that when Isaac’s teacher shared the Cincinnati story with the administration at their school a plan was put into place.
The school held a “jeans day”, those that donated could wear jeans to work on a designated day, the donations were for Isaac! OUR boy is that blessed, and he is OUR boy at this point.
Of course, the staff at the amazing school didn’t have to do this, but they did. This feisty, resilient, hilarious 5 year old continues to touch hearts. Just when we think his circle of love and support can’t get any bigger – it does.
Not only are we blessed to have him, we are blessed to have all of the love that has come along with him. This is Isaac – love 🙂
Saturday we get to bring our superman home! We were a bit confused, since the problem that was solved in Cincinnati was not the problem we sent Isaac for. He will come home with a CPAP machine, that will help reduce aspiration with his constant reflux – which, in turn will help to make his lungs healthy.
The team decided this was the priority, get the lungs better. They found evidence of significant aspiration in both lungs, not good. So, in 3 or so months Isaac will return for another scope and evaluation. At this point we will discuss how to address the hole in his esophagus (that MAY close up in the mean time, but probably will not).
Being separated doesn’t get any easier, I think it’s getting harder. Isaac gets this more, and he voices his frustration. Eli gets this more, and he is acting out in frustration. Talia has always gotten it, and it has worn on her.
This can only be done because we all work as a team – everybody who steps in to help out, the kids, and most importantly Greg and I. We literally trade places, he walks in – I walk out, it’s the only way to do it sometimes. We have to be at work, and with our other kids.
We argue, and we get frustrated with our inability to properly communicate (because it is so hard with kids in each of our ears and hospital staff in and out of a room), we rely on texts and we sometimes get on each other’s nerves or push too hard.
In the end, we are a team. We are the team that has kept Isaac as healthy as we have. We won’t always agree, and we will sometimes take our frustrations out on each other. We will always do what’s best for the kids, and in the end we really do make a really good team.
Isaac is still in Cincinnati, his dad took over Thursday, just in time for him to get discharged to the Ronald McDonald House! He had a fun weekend, and some experimentation took place. This experimentation didn’t really tell us anything we didn’t already know….. Isaac has HORRIBLE (nonstop!) reflux. It IS an issue. As a result of his nonstop reflux, and not so great airway he aspirates – A LOT. None of this was a surprise (to us, at least).
As a result, he was admitted again yesterday to do a CPAP trial. This machine forces air into his lungs, and will only be used at night. The hope is that the pressure will at least stop the majority of the aspiration at night, whatever he aspirates goes right into those precious lungs.
Still staring us all in the face is that hole in the esophagus. What we know about that is that it no longer connects to his lung – but it did. The assumption is that those super antibiotics are at least stopping the connection (we can at least do that now!), but we need to make sure those connections don’t form in the first place.
Because Isaac was blessed with a psycho mama I emailed the surgeon yesterday, just to make sure he’s still thinking about that hole as much as the rest of us 🙂 He is…… and he is discussing possible solutions with all of the other surgeons involved (5 total) to figure out a safe way to fix this.
Our sweet boy is very good at throwing curveballs, and the Cincinnati surgeons are just as uneasy about entering that chest, which makes solutions few and far between.
We have no doubts that between Minnesota and Cincinnati this can be solved. We pray it doesn’t involve major surgery, but will get Isaac through – whatever it takes.
Last night Isaac had his triple scope – ultimately, 5 experienced doctors took a look at his esophagus, lungs, stomach and trachea. Their findings have us all scratching our heads….
Isaac most definitely has a hole in his esophagus. However, this hole is not presently where the others have been found, and it is connected to nothing (good news for his lung). As it leaks it is pooling in his chest cavity, then draining.
This is confusing – because we had a very sick little boy last week, who most definitely appeared to have a hole in his lung. The doctors are suspecting that a big part of Isaac’s problem may be aspiration when he sleeps, and they have some ideas about how to confirm that.
We think that is a problem, but I’m not sure I’m sold on it being THE problem.
It was agreed last night that first we need to determine what is making Isaac sick, then we need to deal with the hole in the esophagus.
We were told to plan to be here for a few more weeks, as they test and do what they need to do. With any luck he will be discharged to the Ronald McDonald House for part of the stay.
After sleeping on everything I still have questions for the doctors, and am hoping they swing by before I head out to the airport. Mommy heads home tonight, and daddy will take over as slumber party coordinator. I will plan to go back and forth between Ohio and Va as much as I can.
Fingers are still crossed that we figure this out soon!
We arrived safely in Cincinnati Friday night, it was a long drive! Isaac was settled in his room rather quickly, and we have been nothing but impressed so far.
We have given his history to an assortment of doctors so far, and will probably start giving that history all over again tomorrow, as the actual team that will assess him gets back to work then. We have already heard a lot of things we like, and look forward to where this team will take Isaac.
Isaac is already starting to show improvement, after a weekend of very good IV antibiotics. Today we finally have the return of big smiles, jokes, and we made a triumphant walk to the hospital playroom! We haven’t seen this Isaac for a week, and we’ve missed him.
Our plan for this week is to get to know the team, and let them get to know Isaac. He will have a PICC line placed tomorrow (a better version of an IV, much longer lasting) and we are hoping the 4 doctors that need to get together to check out his esophagus and lung can do that on Wednesday and we can start talking shop.
I got a wonderful email from our beloved Dr. Hess today, reassuring us that we made the right choice to bring Isaac here. He clearly loves our superman and wants the best for him – and agrees that the team here may be able to provide Isaac a better long term solution. We may be faced with another very big surgery here, and it may mean losing that esophagus and replacing it, something we have always tried to avoid.
It is very hard to have fought so hard for that little esophagus for so long, and now face the possibility that it may need to be removed and replaced. In the long run we want Isaac to be the healthiest he can be, and the leaking esophagus is the one and only thing holding him back now.
Isaac has worked so hard, and come so far – we owe him the best options. We say it all the time, he is an amazing child. He has made this very long journey worth it.