Wednesday, September 2, 2009
Day +154: Answers and Progress
Today is day +154 and we have an answer as to what has been causing Max's "poopee" issues. We were told yesterday that his stool tested positive for adenovirus. It is a very common virus, affecting the majority of the population at least once by the time you are 10 years old. The virus infects the membranes of the respiratory tract, eyes, digestive tract and urinary tract and causes diahrrea and respiratory infection. Never thought I'd know so much about a virus! Adenovirus for a normal immune functioning person is no big deal and resolves itself on its own as the immune system fights it off and forms antibodies. For Max, this fight remains a bit bigger and will probably take him more time but, with the help of the IVIG that he receives every other week, he should be adequately protected and be able to eventually fight it off (as a reminder, the IVIG is the $16,000 per dose medication created from multiple people's immunoglobulins). In the meantime, we have to keep him extremely well hydrated and watch for any signs of worsening as there can be serious complications with adenovirus in immune suppressed people. If anything gets worse, the doctor told me yesterday that they will likely up the amount of IVIG that he is receiving in hopes that more would help him fight the virus. So, I will continue watching him closely and be ready to run down there at any point if necessary to keep him safe, as usual. Beyond that, it will mean that Max will be in "strict contact isolation" when we are at the hospital so that the germ is not passed to any other patients. In laymans terms, I have come to learn that "strict contact isolation" means that the doctors and nurses and any other hospital employee that comes into his room (including cleaning people, etc) will have to wear a special gown, mask and gloves. This (theoretically) prevents them from taking a germ from one patient to another.
It is great to have an answer and to know what we are dealing with, as well as to hear them say that they feel they can keep it in check at this point. Of course, it's still a bit scary...anytime you read a website about a germ and it says "patients with compromised immune systems are especially susceptible to severe complications of adenovirus infection" (the CDCs website), you get a bit freaked out! I'll just continue my obsessive watch over Max and his body's condition and hope that by remaining vigilant, we will ride out the germ and this bump in the road. Where we picked up this germ will always be a mystery although, I think it may have been Ellee and a simple trip to the grocery store. About three weeks ago, she came down with conjunctivitis out of no where and none of the rest of us got it. Her doctor gave me some drops and it cleared right up - it was pretty weird, not like normal pink eye. About a week and a half later, Max started with the tummy issues and Alex had his fever, followed by some congestion. My theory is that it's all adenovirus and despite the fact that I had wiped the cart down, covered it with a baby seat cover, cleaned Ellee's hands multiple times both inside and outside of the store, it got us! Goes to show how virulent these germs are (not to freak anyone out...sorry)!
We did have to make a trip down to the hospital yesterday morning per the request of our nurse practitioner, Paula. We have been continuing to tweak Max's cyclosporine level (his immune suppression medication) and made another small increase in his dose last Friday. As a result, they wanted to check the level in his blood again to be sure it is back where they want it to be. They also wanted to see how he was doing with the diahrrea and stomach issues. The biggest task we have right now is keeping Max well hydrated. Under normal circumstances on the cyclosporine, they want him to drink about 40 ounces of liquid a day. The cyclosporine is hard on the kidneys and they want them to be well flushed constantly. They closely watch a panel of renal function numbers in his blood to see how the kidneys are functioning. Those numbers continue to creep up a bit as his cyclosporine dose gets higher...and now with the diahrrea they are concerned and want him to drink even more! I am constantly pestering him to drink, drink, drink and let him have anything he wants that is not caffeinated. He can't have ICEEs, his favorite thing, or fountain soft drinks as they are out on the low bacteria diet that he must follow. But, we have popsicles galore and a fridge full of gatorade and pop for him to choose from...as long as he drinks. We've gotta protect those kidneys!
So, I continue to have lots to worry about, as you can see! Although, I take comfort in the fact that the wonderful doctors and nurses down there are watching him closely still and have a course of action all the time, if it becomes necessary. Max really continues to do great, despite the tummy issues. We have taken a lot of bike rides lately and he will make it for 20 - 30 minutes easily. That says a lot about how he is progressing in my book! We got some fabulous news yesterday as well while we were at the hospital...Max is now 97% engrafted with Ellee's marrow again! It appears that Ellee is winning the little tug of war that was going on inside him and his bones are filling up more and more with her marrow! His cell counts are all looking good too. His white count is the highest it has been in months without the help of any medications, his platelet count remains stable in the normal range and his red cells continue to improve. All great news and wonderful progress!
We had a couple of other exciting things happen this week. Max started his tutoring yesterday and has a really nice home schooling teacher. I think it is going to be very enjoyable for him. We found out last night that we will probably get our puppy, Spud, next Wednesday! We can't wait to have him here - he is going to give us so much to do! We are getting things ready for his arrival and brushing up on puppy potty training, etc. I also spoke with Alex's teacher this week and we coordinated ways to get him the plans and materials she will be using each week so that I can work with him until he can return to school in a few months. Everyone was very understanding and offerring to do whatever they could to help Alex with school also. My brother, Patrick is back in town so we had fun last night having a dance party with him (picture with Max in the air). And finally, they finished paving our road the other day and the kids really enjoyed watching the steam roller (or the roller coaster, as Ellee kept calling it...another picture of them watching it out the storm door window).
Life is progressing. We are beginning to get somewhat of a fall routine around here and are enjoying our extra free time to take bike rides, walks, play games, dance, etc. Things remain challenging but we are getting there, one day at a time. The light at the end of the tunnel keeps getting brighter and brighter, despite the ups and downs along the way. I have been struck by something funny the last fews days that I thought I'd share with you all. I think it gives some perspective on where we are with things. Two days ago, Max and I rode our bikes down Nagel and then last night all of us took a bike ride (Matt with the two younger ones in a cart on the back of his bike). Of course, Max has his mask on since he is outside. I noticed several people looking at us from their cars as they drove past and I thought to myself, "their probably thinking, what a nice night for a bike ride...how nice that a family is out for a ride together." Finally, it dawned on me that they were looking at Max in the mask and probably wondering what was going on with him. I think this shows two big things: how normal this has all become to us and how much we are going on with our lives, enjoying them as much as possible while it is all going on, oblivious to how "horrible" it must look from the outside! We have tried to keep a positive attitude and upbeat perspective on this situation all along and have done our darndest to make the best of it!
That's it for another week - a busy one but a good one again. Thank you, again to all of you that have signed up to walk with us in October or sponsored one of our team members. I think we may be one of the top teams at this rate...let's go for it (check out our team on: http://giving.cincinnatichildrens.org/netcommunity/maxsmightymobs )! We are looking forward to that event and to being able to show the hospital and all of our caregivers how eternally grateful we are for what they have done for all of us!
Peace and love,
Kristi (and Matt, Max, Alex and Ellee)