I was informed today that I don't blog when I am home. So true. I hardly sit at my computer when I am home 'cause I am so busy doing everything else! The demands and needs here far exceed my ability to meet them, so every day feels like a flat out sprint.
However, I do realize that there are a few of you out there who are concerned and wish for information so you can pray more effectively, and there are a few out there who just like a good laugh, so here goes the insanity of our last ten days.
It was snowing in Cinci the morning we left, but our flight was "on time." We managed to check our bags (TSA has a thing against needles in suitcases...), get through security (Will gets to know TSA agents really well...the neck brace sends off all the alarms.), grab a bottle of water, and board "on time." What no one realized is that the line of planes to be de-iced was extensive.
Two hours later, Will was not looking so great. The plane was over 80 degrees (even I was warm!), there had been no food or water (and we had boarded at 1100), and the end of the wait was not in sight. So I called the flight attendant, explained that Will had an extensive medical background, and was headed for trouble. She provided a Coke (sugar for the mito, caffeine for the blood pressure) and cookies which I then forced Will to eat. You try forcing a 14 yo who doesn't feel well to do something. I love my job. :) I called Billy, who was just getting ready to get on the interstate, and ask him to return home for a bag of IV fluids. Will is going to need them.
So, finally, three hours after boarding this plane, we finally take off. The captain of our flight kept repeating that he had never seen such an abysmal de-icing situation, and the flight attendant stated that she had never seen such an insanely long delay. Their frustration was understandable, but I am sitting here watching William not doing so well and wondering if I should have gotten him off the plane while we were sitting on the tarmac.
I finally asked the flight attendant if they could remove our medical bag from the rest of the baggage before sending it to baggage claim. I really need that medical bag, but do not want to drag Will through the whole terminal before starting an IV. She heads back to the pilot to see what she can do.
When she returns, she informs me that they will be able to separate it and hand it to me upon landing. What they did not tell me is that they also radioed for assistance. So when we finally landed, Will is really not feeling well which makes him insanely grouchy. I look at him and warn him that he is gonna do exactly what I tell him to do without arguing. I grab his backpack, realizing he should not spend the energy to carry it, when I look out the window. There are lots of flashing red lights and a posse of EMS personnel. And they are walking toward our plane. Ooooooh. They are for us. Oh, this is so gonna make Will so not happy.
I wait until just about everyone is off the plane, allowing the airport personnel time to grab my medical bag. As we step out onto the walkway, we are greeted by no less than six paramedics and a wheelchair. They look at me like I am the patient, and I let them know that it is Will. They ask how they can help, and I tell them I need to start an IV. There is a nice warm ambulance just steps away, so off we go.
They ask about Will's medical history, and they get that glassy-eyed look that says, "Um, wow. I have no idea what you are talking about but I am sure glad you do." They offer their assistance and are invaluable in finding a way to get dextrose into the IV solution and graciously all wear masks while I access the port. While I was really not expecting the attention-grabbing welcome in Richmond, the paramedics with both the Sanston squad and the airport fire department were more than professional and gracious. Within minutes of landing, we were able to get an IV started in a warm, safe, moderately germ-free location with more than competent assistance at our finger tips. It was certainly not the arrival we had anticipated, but it was incredibly helpful and helped prevent yet another dash to MCV.
Will has been stably unstable since. He has caught a cold going through the family, but he is home and not in MCV. He is receiving fluids almost every other day, but he is holding his own.
Benjamin is scheduled to have an umbilical hernia repaired Friday morning. This should be a simple, same day procedure, but after Will, I always worry about anesthesia issues. Will has had a procedure with complete awareness so I just dread the whole process.
Caroline did see Will's GI doctor this past week. She has fallen off her growth curve and is complaining of chronic abdominal pain. Will's managing physician, Dr. T, did call Dr Graham, and they are both aware that Will started this whole mito issue at the same age with the same complaints. Does this mean it is the same? No. But the strong possibility exists. Dr. Graham was fabulous with Caroline and is performing the tests that will confirm whether this is gastroparesis or not.
Erlene worked her magic today with our house and it is beginning to look like Christmas. My tree is beautiful, my home is decorated, and all that is left is for me to find some of that magical Christmas joy and actually go shopping...in between IV's, dr appts, school commitments, grocery shopping, and laundry. I have been accused of being Scrooge this year, which really isn't true. I am just really struggling to find joy or even the desire to add one more thing to a schedule that is already out of control. I am not paralyzed by fear of Ben's surgery or what could be beginning with Caroline, but I do appear to be paralyzed by grief...and that doesn't always seem so compatible with joy.