Thursday, April 23, 2009
From the Home Front
Three days at home and mom is about to go crazy already! Just kidding but, things are definitely taking some getting used to again! It's wonderful to be home, no doubt about that...but, it is quite challenging for me at the moment. As I've said to Matt a few times throughout this experience, things were busy for us before this happened with Max! So, now they are just plain chaotic much of the time.
Besides trying to take care of the three of them, which has it's own set of never-ending demands, I feel like I am quite litterally trying to be a nurse for Max. I am running three different IV medicines twice a day (cyclosporine and gancyclovir in the morning and evening and fluids over night) and giving him more than 12 different oral medications four different times throughout the day! It is quite a load! We have said to each other several times that there have just got to be people that cannot handle this...so, we asked the Home Care nurse about it the other night and she said that there definitely are people that can't handle it...and they are in the hospital for a LOT longer time! So, it is worth the juggling...it's just exhausting! I keep thinking that they are going to call me one of these days from down there and say, "actually, we were just testing you to see if mom's can really handle this." Don't I wish!
On top of the meds, Max has quite a HUGE appetite! I think he is training me for when he and Alex are teenagers! He pretty much eats non-stop...all normal behavior from the steroid that he is on. A typical snack for him these days is a bowl of mac n cheese or a slice a pizza! A bit different than the granola bar or cheese stick of his former days. However, they already talked at our visit yesterday about starting to ween him from the steroid over the next month so, that is good news for our grocery bills!
I'm not complaining (well, maybe I am a little bit), it is fabulous to be home! Max has said it so many times...especially as he climbs into bed at night and wakes up first thing in the morning. There is NOTHING like your own cozy bed. I feel like being here is really going to help him to heal even better. We no longer have the major germ risk that being down at the hospital 24x7 posed and he is definitely more comfortable resting here.
It's been tough for Max though too since we've been home...especially since the Cincinnnati weather has turned today and it is beautiful and 70 degrees outside. He is getting the itch to do his normal hoops shooting in the driveway, biking, scooter riding and ramping and, obviously, much of that is out for some time yet. He is allowed to venture outside but, he needs to wear his mask, which he hates, and he has to be extremely careful about the sun as over-exposure to it could trigger graft vs. host disease, a dangerous potential complication at this point in the marathon transplant process. So, his doctor said at our check-up visit yesterday that a shady walk down a sidewalk would be ok but, not a whole lot more than that. We are trying to figure a way to get him out shooting some hoops at least or something a bit more fun like that. He also has to avoid areas with lots of wood and mulch because of the possibility of mold spores that could also affect him at this point. So, getting outside is challenging and it's been tough looking out at this gorgeous day and not being able to enjoy it as we usually would. But, I keep reminding Max that this is only temporary and with time, we'll be able to do more and more until we get back to normal eventually.
We are getting creative about staying entertained. We have two new hoops in the basement for the boys to slam on (as you can see in the video) and we have taken a couple of car rides jusst to get out a bit. We got ice cream and went through the car wash last night...a big family outing! Today we got ice cream at the Graeters drive thru and drove past Coldstream Country Club to see the people golfing. Such fun!
We got some wonderful news this week, again...Max has been granted a wish from the Make A Wish Foundation! We are thrilled about this, of course, and can't wait for the day when Max gets to have his wish come true and just be a 7-year old kid again for a while. It probably won't happen for some time yet due to his need for immune system growth but, stay posted for more about that exciting part of this adventure...we expect that the wish will have something to do with a certain Mr. Tony Hawk!
We are back down to Children's for the majority of the day tomorrow to what they call the Day Hospital. Max will have an infusion of a medicine called Cytogam to protect him against cytomegalovirus (CMV). CMV is a common virus that can lay dormant in people's bodies that Max tested positive for after transplant. It is currently inactive in his body and they want to keep it that way as it could be dangerous with his suppressed immune system. In fact, a common cold could be dangerous. Yesterday I asked the doctor if Max could have his cousin William over to play for a bit and she immediately told me no and followed by saying that even a cold virus could put Max in the ICU down at Children's as he has zero t-cells (major infection fighting white cells) right now. So, no visitors the kids ages for a while...bummer.
When we came home on Monday, the house was decorated adorably with balloons and banners for Max (as you can see in the attached picture). Max loved it and felt very special. Thanks to all our neighbors and friends that made that happen. It was much appreciated by Max as well as all of us. A bit after we got settled in at home, our neighbor Katie called to tell us that there was a beautiful rainbow over the house (see the picture below). We ran out to see it and were flabergasted to see a huge arching rainbow framing the house...I swear to you! It sure felt like a smile from above to Matt and I!
It's very busy here at home but, I promise to find minutes here and there to keep you all updated on Max's progress. Please keep your prayers coming as he has a very long road ahead and we all need patience and strength to endure it!
Peace and love,
Kristi (and Matt, Max, Alex and Ellee)