Thursday, February 24, 2011

Our 2nd Outpatient Clinic...

...appointment has come and gone and all is well. John is doing great, he looks amazing and the doctors and nurses are just aglow with joy when they look at him. Some minor med tweaking, his liver numbers are now good enough it wasn't even brought up and his kidneys are hanging in there and improving with each passing week. He looks amazing, like better than ever before and we are looking forward to getting to go home in a few weeks so long as no unforseen things come up. We are finally starting to get a little bit more sleep, John is now awake a time or two in the night instead of every couple hours and during the day he is less anxious and more settled even though he still has a very pronounced startle reflex. We have found out from an OT here that John's tongue is just locked up, he has never had side to side motion or the ability to elevate it to his upper teeth or lip and no amount of therapy is going to fix that. In the long run this means that he isn't going to talk and will likely never be able to eat enough calories to sustain him without some form of g-tube feeds or high calorie drinks, but it means nothing about how smart, amazing and wonderful he is and is like his weak legs only a physical issue to work around, not a thing to stop him from doing all kinds of amazing things with his life.

Mark is on his way here through snowy roads and weather so that I can attend a conference on augmentative communication devices tomorrow. We are glad of every moment that we get to have together and slowly are being able to relax a bit and enjoy them more. This has been a long amazing road full of miracles and fear and friendship and one that we will not soon be off of but am glad to have had so many prayers and so much support.

Thursday, February 10, 2011

Sunday, February 6, 2011

Happy Birthday!

Today is Mark's birthday and John and I are eagerly waiting to get to tell him Happy Birthday in person and loved getting to hear his voice this morning.

I have for years called Mark 'my favorite husband', it gets some sideways looks, but probably because it is misinterpreted by the hearer. What it really means is that in all the world, over all the years, in all the stories, books, and in person, of all the husbands I have ever heard of he is my favorite.

Love is a strange thing, it can be intense and yet hard to pin down exactly why it is what that way. Mark and I have been married for almost 16 years and I love him more today than any day previous in those years and intend to love him more with each day that passes. He is the most fiercely loyal, dedicated, protective man I have ever known, at the same time he is kind, compassionate, caring, strong and gentle.

John and I are blessed each day to be Mark's son and wife and to celebrate his 41st birthday with him, may God bless us to celebrate many many more!

Saturday, February 5, 2011

Fresh Lemon and Nutmeg

John is back out of the PICU, with a new chest tube in place and doing fine. He's working on standing up again, has actually accomplished it twice and is navigating the Wii Mario Kart menus like a champ even if he can't drive well yet. Bad things could always happen but right now, with the exception of being weak and recovering strength still, and this blasted pleural effusion John is healthier than he's ever been in his whole life. News like that lets my head wander home occasionally and last night I was thinking that of the things I miss it's the smell of fresh lemon and freshly ground nutmeg that I keep looking for and not finding here. Home is starting to be a real place to me again, it's full of the smells of home cooked food, fresh garlic, dog hair that floats off the dog and dust that accumulates no matter what I do to stop it. There are orange walls, books everywhere, and the most comfortable bed in the world. Trees that have been trimmed that I've not seen but I'm sure there are lots of their leaves laying around. A crack in one window, a pane missing in the garage and a heart and rose stained glass piece that my sweetheart brought me years ago. Singing the HS'98 Divine Service with the Irish tune, communion from my dear husbands hand weekly, people who have prayed for us and who are also eager to see John healthy too. I was afraid that all these thoughts of home would make me home sick, I remember that feeling when we had been at Grandma's for several weeks and were still a week out from mom and dad coming to get us, but thankfully it hasn't done that. I am content to be right here with John, I couldn't be anywhere else, but I do look forward to when we can both go home together and maybe I'll pick up a good French cookbook at the library just to peruse while I wait because of all things I'm just really wanting to cook something, something good.

Wednesday, February 2, 2011

Breathing Issues

John's chest tube was pulled on Sunday. Since then he has had increasing difficulty breathing, culminating this morning with him being moved back to the PICU and having a chest tube placed. Already he has put out over 500 ml of fluid from his pleural cavity and is being weaned down on oxygen quickly and should be back on room air by early afternoon.

The Transplant team is divided, part of them want to wait and watch to see if he will stop putting out fluid before discussing other ways to deal with this. Part of them want to just discuss it now and maybe even get on with it. What it is, is calling in the pneumo/throacic surgeons and trying to either scar up the pleural cavity tissue or put sterilized talc in there or use a different antibiotic to see if they can make John stop accumulating fluid in his pleural cavity. These procedures have a 50/50 success rate and no one really wants to try them, but in the end we will see if it is necessary or not.

Mark is busy moving our stuff out of the hospital room back into here and our SSP room (like a small hotel room attached to the hospital that we've had all along.) We will be waiting for some lab results and then hopefully finding some lunch and coffee as breakfast and coffee was preempted by a little guy who needed mommy and daddy very close because not being able to breathe is scary.

We continue to depend on John's safety net of baptism, we continue to pray Lord have Mercy and because we've been in this long scary battle for John's life it's very easy for us to just be scared and worried first and come down from that a bit at a time. Thank you for continuing to pray for John and for us, hopefully soon he will be back up in his chair enjoying nerf guns and gaining his strength back.