What a day...
We started with breakfast at the hotel because we were so tired that we just wanted to sleep. The hotel breakfast was actually really economical and came with an endless cup of coffee! This morning, that alone was worth the price of breakfast!
We made it to the hospital and, while in the waiting room, we met a couple from Pennsylvania who were also here to see Dr. Grubb about POTS. He has really struggled, but his wife seems really supportive. We swapped information because they feel so alone. Boy do we understand!
We were called back in record time, and then we waited...but not nearly as long as I had feared. Dr. Grubb discussed how he is focusing on the different causes of POTS and how treatments differ for the differnt causes, he did sign the release for surgery that we needed for Cincinnati, and he did say that the impending surgery might actually make things worse for a while. I was surprised, though, when they did no EKG and no echo. Will has had some serious deterioration, his diastolic pressure has been of specific concern, and yet there was nothing pursued that would ensure that structurally all is still well. Yes, I am frustrated. I know we need a local cardiologist, but it is tough when they tell you, "Go see Dr. Grubb...I don't understand this!"
The real problem here is that Will is not a straightforward POTS patient. He has so many medical issues that how they overlap and affect one another is unknown. We do know that some issues with mito can create cardiac issues, so it would be nice to know that that has not happened...especially in light of the deterioration.
On a better note, we did get a call from Angel Flight, and we are good to go to Cincinnati. The pilot who had volunteered for our flight was able to handle the change, so we meet her at 1030 Wedneseday morning for the flight to Cincinnati's Lunken Airport.
I also received a call from Beth at Cincinnati, and our three consults on Thursday are scheduled...orthopedics, Dr. Crawford, is at 1245; Dr. Crone, neurosurgeon, is at 2; and anesthesia is at 3. It will be a full day, but at least it is back to back isntead of spread throughout the day. Friday's surgery was moved from 730 to 11so we won't have to be at the hospital until 930 or so.
We walked through the zoo this afternoon, took a couple of wrong turns (Will is learning how to manage the gps on the blackberry!) while touring some less than savory sides of Toledo, and finally found a Verizon store (in a less threatening side of town). We then made it to a Barnes & Noble for the next book in a series that was gifted to him (He was given the first three books in the series and we were blessed with Barnes & Noble cards...), finally got dinner (KT, your Red Robin rocks! This one...not so much!), and Will is now watching "Akeela and the Bee" while I type away while cross-eyed.
Tomorrow, we will hang close to the hotel. We will most likely swim, find a laundromat so we don't run out of clothes (My wardrobe is not large enough to accomodate 2.5 weeks or more of travel!), and run an infusion while playing Bananagrams, cards, and watching a movie or two...a nice, quiet day...a lovely reprieve before the insanity of the coming storm.
If anyone would like to text Will, you can do so at 540.621.4445. This number is good for only one month and is only for texting. But, he does have unlimited texts, so encourage away! :)
So, please pray for safe travel for Billy who is heading toward Cincinnati sometime tomorrow, for our safe flight on Wednesday, and for Will. He is really congested from allergies and it would be insanely frustrating to have to rescheudule this surgery!