Tuesday, December 14, 2010

Our Arrival Home...and the ensuing insanity...

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.

Friday, December 3, 2010

Oh What a Day!

Yesterday was like one of those perfect days. We had the day totally free (ok, there was the whole laundry thing, but other than that...there was nothing on the schedule. Do you know how often THAT happens???) so I let Will sleep til he awoke. He is 14. That does mean 130 in the afternoon. So I had the entire morning to myself...

So what did I do? I read a book. Really. Just for fun. You can do that. :) And when I was hungry, I remembered that there was this amazing German bakery just a couple of miles down the road.

When I was a kid, my mom used to buy Stollen (a German pastry/sweet bread with almonds and fruit) every Christmas season. I haven't seen it very often in Fredericksburg, but a few weeks ago, Becky G brought us one when she brought us lunch at the hospital. Talk about a flashback. That was one of my mom's favorite Christmas treats. So, I was so glad to bring home an amazing one for my kids to try.

So, I read a book and went to the bakery. But...this week, I have really fought what I thougth was carpal tunnel in my left hand. I just figured that the knitting was causing me issues. Well, Wednesday night, I tilted my head to the side and then my fingers felt like there were needles going into them. Okay. Well then. Guess it isn't really carpal tunnel. My neck has been really sore the last couple of weeks...guess the whole hand thing is related.

I had been given a gift card for a massage and there is this place just down the road like two miles, (Seriously...everything but the hospital is within two miles of this hotel!)so I called and they had an appointment available in two hours. Can the day get any sweeter?

So, back from the massage, and we head for dinner. I was so tired of places that sell burgers, so I dragged Will off to a Mexican place. We walk in, and this guy sitting at one of the tables looks really familiar and smiles. I obviously won't know anyone here, so I don't think anything else about it.

Will and I are almost finished when this guy gets up and walks over and says, "Do you remember me?" Before I can respond, Will says, "You were at the Ronald McDonald House one night with dinner." Sure enough, Scott is the youth pastor at a local Methodist church and his youth group had made Mexican food for dinner one night for the House. He and Will had chatted (ok. This guy is every bit as goofy/funny as Will so those two did a lot more than chat.) for quite a while.

Apparently, when we had left the room that night, Scott had told Will to behave or he was gonna smack him upside the head. Well, one of the girls in the group thought Scott had threatened Will and was really upset. Scott explained that he had chatted with Will for a long time, and Will knew he was playing. This girl then went home and told her mom who approached Scott and asked for clarification. So poor Scott could not escape the constant reminder of William and therefore recognized him immediately.

Scott had finished his meeting, and walked over to say hello. We invited him to join us for a few minutes, so he sat down and chatted/played with Will and related the story of how he remembered him. He asked why we were so far north of the city and we explained about the hotel and the amazing gift we had been given. It was a joy to explain how the body of Christ has supported us throughout this entire process. We chatted a few more minutes, then he headed home to spend time with his family.

We finished our meal, and the server walks over and says, "You do realize that he covered your bill." Um, no. Are you serious? With no fanfare or acknowledgement, he had quietly covered the entire check.

I guess the point I am trying to make here is that yesterday was all about rest. I rested in ways that I never do. I seldom sit down to just knit or read or even run. The list of things is never ending and the needs exceed my abilities. Yet, yesterday, I did rest, and the Lord just made all of these cool opportunities available to me and then blessed us with the reminder that He is there even when we least expect it. And rest...really, it is a good thing. :)

Wednesday, December 1, 2010

Mama Called the Doctor and the Doctor Said...

Will totally gives these poor doctors and nurses a run for their money. He is forever teasing them or pushing their buttons to get a reaction. Most handle it fine, but it is interesting the number of nurses who have no idea what to do. They are so accustomed to ensuring that patients don't fall, that when he pretends to trip, they totally whig. Or, if they want to take his temperature, he will either refuse to open his mouth or say, "If you take it I won't have one." And this week Will had ample opportunity to torture, tease, and in general aggravate plenty of medical professionals.

Yesterday, Will had an MRI of his head and an xray of his neck. We have no clue how the xray looks since Dr. Crawford is out of town. However, we saw Dr. Crone this morning and he is pleased with the appearance of fluid around the brain stem. In other words, there is sufficient room around the brain stem that it should start to fill out and hopefully recover from the compression. How long that takes is anyone's guess, but we should start to see improvement in another month or so...definitely by mid February. I have noticed that Will struggles more frequently with trying to find the "right word" when talking, so I did ask if that was caused by the surgery. Dr. C said it was possible, so we will just watch that and see how it goes.

The ENT was hilarious. He handled Will fabulously and had us all laughing. The stoma (the hole where the trach was.) is healing nicely. Dr. W did request an xray of the neck to check for scar tissue in the airway, but as long as that is clear we don't have to return to see him. He did request a hearing test which was within normal limits, so apparently Will is suffering from "male selective hearing loss" according to Dr. Willging. :)

The last doctor was Dr. B, the plastic surgeon. He walked in, took a look in Will's mouth at the incision site, and asked how speech sounded. He wants to recheck Will in April just to ensure that the tonal quality of Will's speech remains stable.

That pretty much concludes our appointment schedule here in Cinci. Will is exhausted and does not seem to be tolerating the trip all that well. He had fluids Sunday evening and again Tuesday evening. He has another IV on Friday. I am just hoping to avoid one tomorrow (Thursday). He actually fell asleep in the car (which never happens) this afternoon and was snoring (which regularly happens. This child can saw some serious logs!)

It snowed all day here but there was little to no accumulation. The snow was so much more beautiful than the inches rain of yesterday. They are calling for the first accumulation of snow over the weekend, so maybe it is a good thing that we fly out on Saturday? However, it is insanely cold here. The temps are in the 30's for highs and the brisk wind of today just made being outside (like pumping gas into my very fun Charger) insanely miserable. I do not like the cold, Sam-I-Am. I do not like it anywhere.

We are now safely ensconced in the hotel where we have heat and pillows and no intention of getting back in the car before noon tomorrow. We have experienced Cincinnati rush hour three times in the last two days which really is not all that bad, but the weather the last two days made rush hour more challenging than normal. Will is not the only one exhausted.