Gavin’s in the emergency room at Akron Children’s Hospital. The doctor came in and again, isn’t super experienced in what Gavin has going on. It’s not his fault though because no one is experienced in this and that part of the problem.
These Autonomic Crises are so rare that our specialists at the Cleveland Clinic are only aware of 3 or 4 cases in the world. Gavin is the only case to ever go through the Cleveland Clinic.
Anyway, we were transferred from the infusion lab and sent to the ER because Gavin went into an Autonomic Crisis again.
By the time we made it to the ER, he was still very unsteady, his color was bad and he was lethargic. His vitals were increasing towards stable and he was still breathing okay.
When the doctor came into the room, he felt Gavin was pretty stable but I explained that it can appear that way and then he will rapidly go down hill. The standing order from the Cleveland Clinic is IV fluid bolus, Ativan, oxygen and heart monitor. That’s the only known treatment.
Unfortunately, because this is so rare, most people aren’t comfortable with this treatment, specifically the Ativan, especially when his BP is already too low.
Typically they would be right. However, in Gavin’s case, the Ativan slows down the nervous system and helps it to stabilize, subsequently bring his vitals back in line.
Even thought the doctor hasn’t really seen this before, he was really, really open to what I had to say and relied on my experience with Gavin and his health. I’m so grateful for that. We had actually decided to hold off on the Ativan because he was pretty stable. We were going to push fluids and prep him for his IVIG Infusion, that will hopefully get done today.
No sooner did we decide that and they started the IV, I noticed the transient rash that was starting on his neck and moving down his chest.
This rash only happens when he’s in a crisis.
Because the rash showed up, we decided to do the whole the shabang. He was hooked up to oxygen and given Ativan.
The rash has since cleared up and he’s resting.
He’s getting a 1000cc bolus and they are hoping to transfer him back up to the infusion lab at some point. He needs to have his IVIG Infusion today because he’s been sick for almost 2 weeks now and without an immune system to fight it off….well, you can imagine.
I’ll be honest, I’m really freaked out. Gavin is scaring me to the point I feel sick to my stomach. He’s lost 25+ lbs since June and his diet hasn’t been reduced. In fact, it’s been increased and he’s still losing weight. He weights 110 lbs now and that really scares me.
Because we are going to be here much longer, I have to find someone to pick up the kids from school. There is no way we will be back in time to get them.
I don’t even know how we are going to get home because I spent my last $7 on gas for the trip up and because of the issues with the van and traffic, there may not be enough to make it back. I’m so stressed out right now.
I don’t think that we can do these IVIG Infusions at the hospital anymore. He just can’t handle the trip back and forth. Anytime he’s in a crisis, his life is in danger and we just can’t keep taking the chance. Sometimes he does okay and other time he doesn’t. There’s no way to know until we try.
Doing these at home will be really challenging because of the dose and the fact that we have to stick him in the stomach and attach the mini infusion pump. I don’t even want to think about this.
My goal for today is to hopefully get him home today and I’m praying that we don’t have to admit him again. At this point he’s not sweating. If he was sweating, that would pretty much mean he would be admitted because he is physiologically incapable of sweating. He will only sweat when a crisis is going to go really, really bad.
Right now I’m counting my blessings and trying to remain positive.
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No, I read it, but I was unsure if the place they go to for the infusions would be the same place they would need to go to if an emergency happened I guess you can say. Especially knowing Gavin’s complicated health issues, the possibility of needing to drive to another place could be there.
i am sorry you had to explain about the gas situation. I know you werent asking for assistance but sometimes people just have to think bad things. If you were asking for gas money, as I know from your blog, you would not have veiled it in the extremely emotional post. You are man enough to just ask for it. I am sure people were just misunderstanding. people dont know that you/we live from moment to moment. when my kid was having to go for regular bone marrow biopies, you had to get there (you cant miss that appt or put it off), if i didnt have the gas i would still go and worry about it after i got there. even though this was not your situation, you thought you had it covered, people need to think that people run out of gas all the time without a good reason. So many prayers are with you and i think most people were thinking good and some people are not aware how one bad thing can seem to colapes the whole house of cards
janeslist123 again. You’re right about it being a planned trip. But it wasn’t that I went without enough gas to get home. Please read the above comments. Perhaps I didn’t express myself clearly enough yesterday. I wasn’t in the best of places.
Silachan thanks. 🙂 there’s been some misunderstandings here. Check my comment above. As always, I appreciate your kindness and support. 🙂
JLLee thank you. I appreciate the support. This was a planned trip that went bad. The cars not running right and so I was nervous that if I had anymore driving to do, we wouldn’t be able to make it home. We were either bring through the has to quick or the gauge isn’t accurate.
I was also really freaked out by Everton ping on and that was something I focused on. 🙂
Badmitton06 I’m sorry that you feel this way but most of my readers are people in similar circumstance. The only fundraising I do is for server costs and I’m very open about that.
Thank you for your concern.
tbrandon1 @Angela Stull @Ekaterina Davydenko rjones22 @Denise Reynolds Laubacher Badmitton06 @Meri Beller Kelly Silachan @Aimie Marie
Just to clarify. This was a planned trip to the hospital for his monthly IVIG Infusion. He crashed on the way and while we were there. As far as the gas thing goes, I had more than enough gas but the vans acting up and so I either burned through more than I should have or it wasn’t displaying correctly on the gague. My concern was if we would have had to go to Cleveland or if he needed to be admitted.
I had 1/4 of a tank, which is more than enough to make the 40+ mile round trip. The dash said I had 98 miles remaining in the tank and after I got up there, it was reading that I only had 46 miles left on that tank of gas. That’s why I was worried.
If you have been reading this blog, you would know that we are having car trouble.
I wasn’t looking for money. You have to understand that the very nature of this blog is such that I share what I’m experiencing. At that moment, I was panicking. I write exactly what we are going through and the reality is that sometimes, money is a problem and so I share that. It’s important that everything is kept in context.
I don’t think either of the above actually read the op post. This wasn’t an emergency trip… it was planned. The emergency occurred while at the hospital.
Reading IS fundamental…
it scares drs because my son is on so many “respitory depressents” and walks around like normal. thank God the dr listened to you. isnt it amazing that moment that you know a dr is not going to fight with you or you dont have to fight them. like i said before i had learned to bring the video camera. the bad thing is i looked like someone should do something to help me (that is how bad off i looked) and it is weird because I can see myself shifting on the video from looking perfectly normal to a banshee and then back to a perfectly normal person. I do believe the drs about the drugs that are respitory depressents it just doesnt go for my kid. I am sorry for all you and lizzie are going thru. prayers your way.
You must not have children if you think that makes sense. I’m not even a parent and I totally understand it. It’s called care and worry. He needed to go to the ER- if your child was showing symptoms like this and you knew they had a dangerous illness that could potentially kill them, wouldn’t you rush them to the ER immediately regardless of if you had enough gas to get there and back? I’m pretty sure that, at that point, that’s the last thing on their minds. Their first thought is “Gavin is in trouble, he needs to get to the ER” not “Oh will my car have enough gas to get me back later?” Come on. :/
Whoa, if my son needed emergency treatment, or could die, I would spend my last penny getting him to that help. I certainly wouldn’t be worried about how I was going to get home!
Your well-wishing seems shallow and meaningless when you immediately pick apart the poor woman in a horrific situation. I can’t imagine what she is going through.
I hope your son is feeling better, but I have a question:
Why would you spend the last of your money getting to the hospital when you weren’t sure if you would have enough gas to make it home? Wouldn’t you plan to have an “exit strategy” before transporting your sick son? If he does so poorly during car rides, wouldn’t you be thinking that he’d do worse if the car ran out of gas?
It’s posts like this that make your blog seem like a thinly veiled attempt at fundraising from sympathetic readers.
OMG! So much for ANYONE to handle!!! So very sorry for you & your family…there are just no words….hang in there….please know a lot of us care & have you in our thoughts & prayers….
🙁
Thinking of you guys of course but I have a question…why are the measurements done in metric?? I mean, they should be because that’s the right way 😉 but I didn’t expect them to be…
Do you have pediatric home health in your area? My company does home infusions for kids here in Texas. That could be a real relief for you. Your doc would write orders.
Poor Gavin. I hate when kids suffer like this. I’ll never understand it. My thoughts and prayers are with you guys. At least the doctor respected your expertise this time, though. Parents are the expert on their own children.
Do you think they can put in a pic line or a cath of some sort so you dont have to keep injecting him yourself if you did it at home? It’d be work to keep the area clean and free of injury but it’d be much easier I think.
Would you be open to accepting a money transfer to help with gas? I’m in Vancouver BC – but e-mail money transfers are fast.
Keeping you all in my prayers.
Oh my goodness.. my thoughts are with you and your family. Heading to the donation button….
Praying right now for you guys..esp Gavin! Hang in there!
Thanks everyone.
The poor kid….:(
Praying for you
Prayers for your family.
Your family is in my thoughts and heart.
keeping you in my thoughts and prayers!