Yesterday was the day we took Ryan to Johns Hopkins (Baltimore) for all the exams and tests. We had him up early and in the ambulance by six o’clock. Fourteen hours later, we finally returned home. It was exhausting.
I guess the best way to update you is to present it in chronological order:
- Platelet Function Test. Our first stop was in Express Testing. This is deceptively named (as I soon found out). Ryan is on some medications that have the potential to lower his platelet count. We’re considering adding even more. These medications (and some supplements) makes him prone to poor clotting. So, every once-in-a-while we need to make sure this is not the case. It’s a simple procedure of drawing blood. We hope to know the results by the end of the week.
- Vascular Doctor. This was the main appointment. We needed to gather more information on the decision to attempt to remove the Celect IVC Filter implanted in his vena cava vein or just leave it in place. Both carry risk. You can read about them in one of my earlier posts, Ultimate Paradox: Damned if You Do, Damned if You Don’t. Like with most doctors and their fear of liability, I cannot simply ask a question. This forces me to dance around them to get the information. So much for really ever getting a “second opinion”. Come to think of it, I never really got a “first opinion”. Anyhow, here’s the plan. We’re going to attempt to retrieve the filter, even though it’s probably not likely. If the surgeon feels at any time during the operation that it is too risky, the procedure will be called off and we’ll live (or die) with the alternative risk. This is an outpatient operation, so we’ll be heading back to Baltimore soon enough.
- Corneal Specialist. We had Ryan’s eyes examined to see what could be done to prevent further scarring or the lose of an eye (or both). It’s always a tough call with Ryan on everything. There are competing goals. On one hand, we want the eyes open so he can get as much visual cortical input as possible to help his brain recover. On the other, we must protect his eyes and this might involve stitching them shut. Our solution, that we feel is worth a try, is to partially close them (imagine how your eyes slit when looking into the sun). It’s a compromise… for now.
- MRI. We’re now into mid-afternoon and Ryan is registered to go in for an MRI of his brain. It never happens. Johns Hopkins administration has botched the paperwork. The MRI Technician will not accept him until it is all in order. Two hours later it is still not resolved. The hitch? Ryan’s shunt he has embedded in his brain (to drain off excesses cerebral fluid) cannot be verified. It doesn’t matter that we know the model, it must be confirmed by the original surgeon. The hospital that put it in (Piedmont in Atlanta) does not respond after repeated attempts. I am upset with Piedmont, but don’t blame them. They were needlessly put on the spot. The fact is, this should have been taken care of before the appointment was ever scheduled.
- Pre-Op. The day ended with Ryan being taken to register for the upcoming IVC surgery. He was also give a quick physical examination. We answered the same set of endless question we always answer. Yesterday it happened with each new appointment, despite being the same facility. I’ll never really get why that has to happen. We always send Ryan’s complete medical files to the doctors well in advance, with answers to the questions we know they will ask, but it’s always the same routine.
With everything wrapped-up for the day we finally left, navigating the endless maze of tunnels with Ryan in the stretcher. We had the same EMT crew with us the entire day. It was necessary because we had to transport him from building-to-building on the Hopkins Medical campus. I can’t even imagine — nor do I want to — how much that bill will total.
The ambulance arrived home an hour and thirty-minutes later. It was eight o’clock at night. Just because we were home didn’t mean we were done. I spent the next ninety minutes putting Ryan through some passive exercises and back massage before getting him into the shower. He deserved to get loosened up after a rough day out!
Ryan could not have asked for better parents. Your dedication to him is beyond comprehension – it truly brings tears to my eyes. God bless you and Sue (and Kari!), Ken!!
After reading about your grueling and draining day of navigating the halls and underground tunnels of Hopkins, of having folks try to push and rush past or wisk by onto their busy lives, of navigating the inner city rush hour traffic of a large city, you have to be drained. Anyone would be. The story does not end there, THANKS to Austin Vantrease, Jon May, Colin McKeefry, and the rest of the kids who stood by and watched in Morgantown, that was just a part of your DAY SHIFT schedule yesterday. I have gone to Hopkins – the best in the world – for just one appointment, and as anyone who has been there knows, just parking and getting in the door there is exhausting in itself, then you wait and wait and get moved onto the next.. The Hopkins hospital campus is larger than some cities. God bless you Ken and Sue!
Gail Doyle says
Ken, What a day!!! I agree so much with you on sending Ryan’s records ahead and answers to questions you think they might ask ,but WHY ,can’t they read them, so you can skip that part:(. Praying all goes well with surgery and what a shame about MRI. Glad you got home safe and for keeping us updated. Hugs to Ryan and you all… 🙂 love Gail
Oh my goodness Ken, how utterly frustrating to go through all that and then learn that all the necessary paperwork was not done. It seems like no matter how thoroughly one prepares, there is always some kind of hitch or glitch. I think you may have mentioned this in one of your prior blog posts, but isn’t it rather laughable to realize that our society that was supposed to becomee “paperless” never really did? It seems if the paperwork process associated with all these tests and procedures could be streamlined, it would make life easier for everyone.
Is Ryan going to get an MRI at his next visit, or does that have to wait? I know exactly what you mean about doctors dancing around answers. If they knew you, they would know you are a straight shooter — all you need are the facts and you can go from there.
I am really sorry it was such a long, tedious and frustrating day for you. You surely didn’t need that on top of everything else. And in spite of your great fatigue, you still managed to give Ryan a work out. You are amazing. I am praying the surgeon will be able to remove the filter with no complications. I hope by a miracle you are able to get some rest today. At least we’ve got great weather on tap and hopefully you and Ryan can enjoy some time in the sunshine.
Thinking of you, and as always sending my love and support, along with continuing prayers for strength and healing
We intend to get the MRI on the next visit, but it all comes down to timing and administrative people just doing their damn job. Yes, it is true that I usually only want the facts. I’ll make the decision, thank you very much, Doc. Sue thinks they’re intimidated by the breadth and depth of questions. She might be right, but I’m not going to act ignorant to make a doctor feel good. In the end (or, more accurately, from the beginning) I really don’t focus on how they feel about me.
As in all things with you, Ken, it always gets down to what is best for Ryan — so, if you feel like you have to push for answers, that’s what you’ll do, and if you’re disliked for it, so be it. You’ve sacrificed everything to help Ryan in every way possible. And for that you have our utmost respect, support and admiration.
Jo Hobbs via Facebook says
So nice to be back in close touch!
Ken, I don’t know how you have enough strengh to write today! You are indeed an amazing man. I know we are all grateful that you keep us updated, and we can never thank you enough. Yesterday sounds like a nightmarish day; some things were not accomplished, and I know this is disappointing.
I’m thinking that the word “express” should be removed altogether from our language since it means nothing whether it’s the supermarket (haha), super-highway or testing. The same goes for “fast,” which really only applies to Nascar and runners!
Happy you arrived home safely and fairly quickly. 🙂 Always here.
That sounds like a horrendous day. I’m finally over my cold, hope to stop by to say hello soon!