Day +88
WBC 3.2
The biggest news for Max comes not from Minnesota, but from Illinois. The raffle fundraiser that was begun by our neighbor Jodi was held yesterday and was a phenomenal success. She had the idea to ask for donations on our behalf and to organize a raffle of these items. The terrific prizes and the desire to help led so many people to buy tickets that it FAR exceeded expectations by Jodi and certainly by us. Mike's sister Dana also helped a lot and took the time to write a letter of thanks on behalf of our family and it includes all of the details. Please read all about this event. Generosity is a snowball that grows when it can get a push downhill. It started as a nice idea at the top of the mountain, but as you'll read, the generosity was quite an avalanche at the bottom. We've known that this fundraiser was building up momentum for a while now. But a couple of weeks ago we were worried about even being able to use this money. Now that he has improved so much, we promise to honor everyone's charity by putting it to good use in caring for Max. Thank you to everyone who bought tickets, donated prizes, and helped organize the actual event yesterday. We are so humbled by this support and we are in a bit of shock. Congratulations to the winners!
We are so thankful that the Heiss family moved next door to us. In addition to being a great family with wonderful fence-crossing children, we were given the gift of great friendship. Thank you Jodi for being a great organizer, a terrific fundraiser, and a special special friend. We have been shown the power of friendship. Thank you Jodi. It took the help and support of so many people, but it started with one person, and that was you. We appreciate you so much. Here is a link for the information:
Curves Fundraiser
Since it has been a couple of days since we updated Max's progress it's time to let people know that our dude has been pretty stable. Our newest concern is that his white count has been dropping a point or two for about a week and now it is down quite a bit. This is the risk of both graft vs. host disease and the meds for GVH - both suppress his immune system and make him susceptible to infection. He is still off the oscillating vent and on a regular one. His settings are being weaned slowly but are still very high. He is extremely sensitive to touch and is on a hefty dose of pain/sedation medicine. His fluid issues are being worked on by 4 diuretics, and he has lost almost 2 kilos (of the 5 he needs to lose) in the last 5 days. He has stooled a few times, and his bowel appears to be healing. His skin is also improving, with the worst areas remaining visible. He began 3 antibiotics to help attack the bacteria in his lungs and it has been noticed that he has pulmonary hypertension. This means that the blood pressure between his heart and lungs is elevated. Because he is still on nitric oxide to help him breathe, Viagra has been added to his regimen because when used with nitric oxide, it can help with pulmonary hypertension. With the Viagra and the Rogaine (for blood pressure) and his fuzzy mustache, he's the smallest 50 year old man we know. Later today he will be once again hooked up to the EEG machine and we will learn more about the seizures at that time.
Please continue to pray for Max and for every one of his problems. The love and support lately have reached unbelievable levels and they are helping Max get better. Thank you.
--Mike & Margaret
The biggest news for Max comes not from Minnesota, but from Illinois. The raffle fundraiser that was begun by our neighbor Jodi was held yesterday and was a phenomenal success. She had the idea to ask for donations on our behalf and to organize a raffle of these items. The terrific prizes and the desire to help led so many people to buy tickets that it FAR exceeded expectations by Jodi and certainly by us. Mike's sister Dana also helped a lot and took the time to write a letter of thanks on behalf of our family and it includes all of the details. Please read all about this event. Generosity is a snowball that grows when it can get a push downhill. It started as a nice idea at the top of the mountain, but as you'll read, the generosity was quite an avalanche at the bottom. We've known that this fundraiser was building up momentum for a while now. But a couple of weeks ago we were worried about even being able to use this money. Now that he has improved so much, we promise to honor everyone's charity by putting it to good use in caring for Max. Thank you to everyone who bought tickets, donated prizes, and helped organize the actual event yesterday. We are so humbled by this support and we are in a bit of shock. Congratulations to the winners!
We are so thankful that the Heiss family moved next door to us. In addition to being a great family with wonderful fence-crossing children, we were given the gift of great friendship. Thank you Jodi for being a great organizer, a terrific fundraiser, and a special special friend. We have been shown the power of friendship. Thank you Jodi. It took the help and support of so many people, but it started with one person, and that was you. We appreciate you so much. Here is a link for the information:
Curves Fundraiser
Since it has been a couple of days since we updated Max's progress it's time to let people know that our dude has been pretty stable. Our newest concern is that his white count has been dropping a point or two for about a week and now it is down quite a bit. This is the risk of both graft vs. host disease and the meds for GVH - both suppress his immune system and make him susceptible to infection. He is still off the oscillating vent and on a regular one. His settings are being weaned slowly but are still very high. He is extremely sensitive to touch and is on a hefty dose of pain/sedation medicine. His fluid issues are being worked on by 4 diuretics, and he has lost almost 2 kilos (of the 5 he needs to lose) in the last 5 days. He has stooled a few times, and his bowel appears to be healing. His skin is also improving, with the worst areas remaining visible. He began 3 antibiotics to help attack the bacteria in his lungs and it has been noticed that he has pulmonary hypertension. This means that the blood pressure between his heart and lungs is elevated. Because he is still on nitric oxide to help him breathe, Viagra has been added to his regimen because when used with nitric oxide, it can help with pulmonary hypertension. With the Viagra and the Rogaine (for blood pressure) and his fuzzy mustache, he's the smallest 50 year old man we know. Later today he will be once again hooked up to the EEG machine and we will learn more about the seizures at that time.
Please continue to pray for Max and for every one of his problems. The love and support lately have reached unbelievable levels and they are helping Max get better. Thank you.
--Mike & Margaret
posted by Mike Ciacciarelli
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