Anderson's Medical Expenses
I took today off work, I didn’t sleep well and wasn’t feeling 100%. I figured I’d sleep it off and hopefully head up whatever I was fighting against at the pass.
Around 1230 or so AJs nurse woke me up, something was wrong, though we weren’t sure what. She started to set up for a trach change and I grabbed things to bag him.
He was very blue. Shaking. Cold. His lower lip was quivering. And generally he just was not doing not well. I called 911, and ultimately when our first responder team arrived he was in bad enough shape that they asked the ambulance to step it up and get there faster.
Trach change didn’t help. Bagging him didn’t help. Turning his oxygen up to 6 liters didn’t help. Albuterol neb didn’t help. Nothing was ultimately helping. His heart rate hit the 180s. That’s 3 beats per second and roughly twice his norm.
We hopped into the ambulance and headed to Iowa City as soon as we could. Around halfway through the journey he calmed down a little and we were able to turn his oxygen back down to 1 liter. He was still pretty lethargic and his breathing was erratic and fast.
Fast forward to now. We’ve been in the ED for probably 3 hours. His EKG was fine. X-ray was fine. Cultures have all been fine thus far. His breathing has regulated and aside from being unhappy about having an IV in his hand, he’s contently taking a nap. The only thing “wrong” so far has been a fever, which has come down after Tylenol - but he’s also hot blooded like his daddy and always runs a fever after cuddling.
Needless to say, we have no direct answers on what happened. He may have overheated while sleeping. He may have been pissed off and clamped down and had a PH episode that escalated as it continued. Maybe it was both. Or maybe it was something else entirely.
This wasn’t the first time I’ve seen him in a state like that, but it was the first time I could see the fear in his eyes and could tell he knew something was wrong. I’m sure he could sense how the rest of us felt too despite trying to stay calm. A cold, limp, convulsing kid isn’t fun for anyone, especially when he can’t tell you what’s going on even if he wanted to.
Incredibly thankful for his nurse, who woke me up from my nap and helped me do everything we could, for the 911 operator (who could tell this wasn’t our first rodeo and got our info and kicked things off right away and let me off the phone), for the first responders who always get to our door quickly (and who know our kiddo well enough at this point that we don’t have to give a crazy medical history), for the ambulance team that come over from Belle Plaine and their paramedic (who knows him well too), for the ER staff who are used to us by this point as well, for Amy for snagging Averie despite having other plans, and for whatever reason it was that I felt crappy this morning and stayed home - not that I don’t think our nurse could have handled it, but because when he has a moment like that it’s so much better to have two sets of hands.
Praying that as we head home in a few minutes we don’t have a repeat episode at home, that we go back to status quo, and hopefully stay there!
As a side note - I miss the old coffee shop in the hospital, the new one isn’t the same, and we’ll be sending over a list of app recommendations for the ER iPads - AJ is bored out of his mind and most of them require using your hands, which he doesn’t have use of when they’re bundled up with an IV.
When we went to Philadelphia to discuss AJs airway repair, we came back and ultimately weren’t sure if he would ever be a candidate to have it done. Without the airway repair, plugging his trach could be fatal as he’s not able to breathe around above/around it. Also - cardiology won’t do his next heart surgery unless the repair is done and they can intubate him from above.
Fast forward to now. We obviously haven’t had the procedure yet, but for the past month or so I’ve been working with CHOP, talking to cardiology out there, expressing my concerns about not being able to get him to where ENT wanted him to be. Everyone managed to get together and come to an agreement.
The ENT nurse called me and said that Dr Jacobs has agreed to do his LTR (reconstruction surgery) but wanted to be clear that he had concerns about AJ’s airway not healing well enough due to his lower o2 saturations - meaning he believes he can open his airway up so it’s a little safer, but isn’t convinced it will be well enough to ultimately remove his trach.
I think the nurse talking to me was geared for me to be disappointed, but truthfully that’s all we want — a safer airway. Where when he plugs his trach it isn’t a panicked emergency because he can’t breathe at all (He’s done that twice this week alone - dried snot pictures provided to illustrate, sorry if it grosses you out!). And of course we really would like to make it possible to have his next heart surgery when it’s time.
So the plans are the following - sometime in the new year (Jan-Mar) we will be heading to Philadelphia again.
Week 1: we will have outpatient appointments with all of AJ’s specialists at CHOP - Cardiology, Hematology, Pulmonology and Gastroenterology.
Week 2: we will have a triple scope with ENT, GI, and Pulmonology to make sure his airway is still safe and there are no barriers to doing the reconstruction. While he is in the OR they will keep him sedated for extra time to make sure he can maintain his saturations. We will likely be inpatient overnight for that procedure, but outpatient again after that.
Week 3: if everyone has given the green light and sedation goes well, AJ will have his reconstruction surgery. They will leave his trach in place and open the airway above it, using cartilage from his rib and place a stent in to hold it open. He will be inpatient afterwards.
Week 4-5: when it’s time they will remove the stent they had placed. How long he will remain inpatient for after that is unknown.
From there, we have to remain outpatient in the Philadelphia area as they monitor his healing and do additional bronchoscopies/microlaryngoscopies. 6 weeks is how long they expect an average kid to need, AJ isn’t average, so we could be looking at double that.
If you’re still with me, that means we are looking at 10-17 weeks in Philadelphia, most of which is outpatient with AJ. We don’t know yet exactly where, or how this is going to work. Obviously I’ll need to work, and am lucky enough that we have an office in the Philadelphia area. But we unfortunately can’t take our nurses with us, and our private insurance nursing coverage will likely already be maxed out and Medicaid won’t pay for out of state nursing. So we have to figure out how to balance all of that.
Needless to say there is a lot to iron out logistically and financially, not to mention emotionally. Handing over your “healthy” and aware little boy for surgery definitely feels a lot different than handing over your very sick baby who is struggling to stay alive.
If you could keep us in your thoughts and prayers as we navigate and prepare for all of this, we would definitely appreciate it. As we know more we will be sure to update with more information.
Definitely thankful today for family and friends, our nurses, for the doctors in both Iowa City and Philadelphia for working together to make this possible for AJ, and much more.
For those interested, you can find more info about the reconstruction surgery itself here: https://www.chop.edu/treatments/laryngotracheal-reconstruction-ltr-double-staged-repair
AJ is making strides in his physical strength. He’s mastering riding his horse and has lately preferred that to any other method of transportation.
However... this week something amazing happened. I’m in a tight knit group of amazing girls I’ve met online. We do a secret sister gift exchange. She sent me some amazingly fun things for me, but she also sent AJ this metal guardian walker. So he will now have this to learn with at home. It’s going to take some time but I truly believe it will open up a lot of opportunities for him — even just in terms of learning balance and strength. I feel like I keep using the word amazing, but that’s precisely what it is. And to say we are thankful would be a serious understatement!
Academically he shocked us all the other day. I asked him to hand me the letter of the fridge that made the short A sound and he could find it. And he kept doing it for L, R and M etc. so now we are moving on to putting letters together to make words!
On the eating front he’s still making slow progress. He is still interested and tries, and is finally starting to eat some dissolvable snacks.
We do have some developing info on the horizon for his next trip out to Philadelphia for his airway reconstruction that hopefully I’ll be updating on soon. For now we could use all the prayers and happy thoughts you can manage.
AJs blood cultures from the ER came back showing bacteria (Granulicatella adiacens). Unfortunately this particular bacteria has a tendency to kick off endocarditis - basically inflammation in the heart.
So today he had an echo (no areas of concern at this time), and we continued toward a ten day MINIMUM course of an antibiotic (vancomycin). He’s going to have daily blood cultures drawn in addition to other labs as needed to balance the antibiotic and figure out what is going on with his iron/anemia related issues as well.
He’s already bored out of his mind trying to keep busy doing something other than playing on the iPad all day so I’m hoping we can come up with some new ideas to keep him busy.
On the upside, we will have a good view for the game on Saturday, and will get to experience the Iowa wave from the hospital viewpoint. On the downside, he doesn’t actually care about that so much as the adults do. And he’s pretty tired of not being able to move around like he wants to and of being poked for labs.
That said — It’s amazing that this was even caught since blood cultures weren’t part of the typical plan for the issues he presented with in the ER. We are incredibly thankful that it was caught when it was and that the outlook is optimistic at this point, but we all know that things can often change very quickly - especially when it comes to AJ. So needless to say if you have a moment to spare and can say a quick prayer, we definitely appreciate it.
Perhaps the reason he has a hard time sleeping is it is too quiet. Hospitals are not know for being quiet, even at the best of times, with all the monitors, nurses checking in, etc. Maybe turn on a radio. Even without the hospital situation it seemed to help my two go to sleep. Martin.
Hey Amber, I'm Tina, and I work for hibu as a Premise Sales Rep in Macon , Ga. I have been following AJ since you subscribed to gofundme. I just wanted you to know that prayers are constant, and I think you are an awesome mother of two adorable children. I cannot possibly imagine how hard this has been for your entire family. Praises for good days, and prayers for bad days.
Amber, I don't know you personally but I work for hibu. I'm a sales rep in North Carolina. Since the day the message went out to all of us about your situation, I sent a financial support but I have also sent prayers and cried tears with you! I think about you often and I read every single update that is posted. I will not stop praying for all of you! Love and prayers! Shondra Grant
We've posted this on our Facebook page (Irish Philadelphia) and we may have some help for them in terms of lodging. In the meantime, they can check this website someone posted. They do lodging for patients in Philadelphia. http://www.hostsforhospitals.org/website/