Tuesday, May 5, 2009
Day +34 and All is Well
Today is day +34 and all is well...Max is continuing to do well. He has had a bit of a rough time with his stomach again recently due to potassium and magnesium supplements that he was put on Friday to raise his levels of those two electrolytes. However, we are getting it under control more and more each day and, with time, his body should adjust to the new supplements and the nausea should stop.
We are definitely beginning to create a "new normal" around here. We are now down at the hospital on Tuesdays and Fridays to have Max checked out and to receive many IV meds that I cannot administer here at home. The appointments range in length from 2 to 10 hours, depending on what needs to be done and what comes up while we are there. One thing I've definitely learned through this process...hospitals do not move fast! But, we've learned to settle in down there and expect to be there for some time. We always bring good videos and games and Max always requests a portable video game system to play while we are there too. Alex has been coming with us most of the time as well so, having his best buddy there helps to pass the time more quickly as well.
I thought I would take a minute to explain a bit about where Max is in the marathon transplant process again so that everybody has a little better idea of what still lies ahead. As you all know from reading my past blogs, we are now in the final stage of the process, the growth and recovery phase. This is definitely the longest phase of the process for us. As far as I understand it at this point, this part of the process can be broken down a bit. The first +100 days post transplant are still a very critical time for BMT patients. They are under extremely close medical supervision, as Max is with our bi-weekly visits to the Clinic/Day Hospital. If they have a fever of 100.5 or greater, they must be admitted to the hospital for a minimum of 72 hours of supervision to rule out an infection and to be sure the doctors can take action as needed to help them fight the germ. We have a long list of items that warrant an immediate call to the BMT doctor on call. We just had to do this on Sunday because Max got sick to his stomach and had a bad headache. Once we talked through things with the doctor on Sunday, we all agreed that the likely cause was the new supplements and decided to monitor things. Luckily, Max improved that afternoon and we didn't have to make a quick trip down to the ER to have him evaluated.
The primary reason for this strict isolation is the lack of an immune system in Max right now. Although his white cells are re-building (thanks to Ellee's marrow) which makes him capable of fighting some bacterial infection, he has no t-cells at the moment which are used by the body to fight off viral infection. Part of the reason for the lack of t-cells now is that Max is on a pretty high dose of steroids which suppress the body's ability to create t-cells. The steroids are helping to prevent graft vs. host disease (GVHD) which would occur if Ellee's t-cells attacked Max's body. Thus, Max began a very gradual and carefully monitored process of weaning from the steroids this week. It will take place over 4 weeks and as long as no signs of GVHD occur, he should be done with the steroids and producing t-cells soon.
So, although we are home and are creating our "new normal", it's a bit like living on pins and needles. We never quite know what might happen each day. We wouldn't trade being home for anything but, living through this first 100 days post transplant is a bit nerve racking! As you all know too from reading the blog, Max is also under strict isolation orders. Basically that means that no one under age 12 can visit him (except for his siblings that live here, of course) right now and that no one with any signs of infection (ie even a runny nose or scratchy throat) can visit. In addition, it means that Alex and Ellee need to be equally isolated for now to prevent them from bringing anything into the house. If they were to get any signs of sickness, we would have to "ship them out" as our doctor put it, to a relatives house or something until they were well again. So, to avoid any further separation as much as possible, we are isolating Alex and Ellee as well for now. They cannot play with other kids like Max (we have let them a bit outside with super good hand washing) and can't even be babysat by Aunt Monica while I take Max to the hospital if cousins Will and Ben are there. It sure makes things tough! But, we keep focusing on the fact that all of this is temporary and with time, it will all be over. It is so worth it to give up these bits of freedom right now to gain back the rest of Max's life!
Once Max reaches the +100 day mark, the doctors will do some testing of his immune system to see where things stand. If he shows some t-cell growth, etc., they may lift some of these restrictions and let him play with one friend here at home or something and Alex and Ellee may be able to get out a bit more. From the +100 day mark on, the immune system just needs time to keep growing and rebuilding to what it was pre-transplant. It usually takes about a year for a BMT recipient's immune system to be back to full strength but can vary from 6 months up to 2 years. Max will not be able to return to places where there are lots of people (ie stores, school, restaurants, church, etc) until the doctors determine that his system is back to full strength.
As I've said many times throughout this blog, we are in for a long haul still. But, everyday brings us closer to the end of this isolation and closer to a return to full health for Max. We greatly look forward to the days when we can do "normal" things as a family again but, in the meantime, we are making the most of this time together. I absolutely know in my heart everyday that there is going to come a day in my future when I look back on this time and treasure it, as difficult as it has been on everyone (especially Max) to go through this. I have always loved my family but never as much as I do now...never have I enjoyed them and appreciated every single minute like this!
I thought you all might enjoy the attached video of our lazy Saturday morning last weekend. We do a lot of cuddling and are having lots of jammy days lately. It's a treat!
We think constantly about the families that we met during our stay in the hospital and keep up with their child's progress on their individual blogs or websites. Many of them are facing so much more than we have and have been so inspirational to us. On Mothers Day, please say an extra prayer for all the moms that are in the hospital here in Cincinnati caring for their little ones. They could use all the energy, strength and patience they can get!
I promise to keep updating all you faithful followers at least once a week or more often as we have news. Thank you so much for your continued support, thoughts, prayers, gifts, cards, meals, etc. We have felt your loving arms around us throughout this ordeal and know that they will continue to be there until we have that GIANT party in 2011!
Kristi (and Matt, Max, Alex and Ellee)