Day +82
WBC 10.7
Max is in a much better place than a week ago. He is still on the oscillator, but he is much more stabile, and he is doing fairly well. A week ago, his kidneys appeared to have stopped, his bowel appeared to have stopped, and he was needing "pressers" because his blood pressure was so low. The doctors told us that because he needed the oscillator, their hands were tied and there wasn't much more they could do. Thankfully, Max (and a lot of diuretics) got his kidneys moving, his bowel moving, and his blood pressure came up.
So this is what it's like: It's a championship fight and Max has been knocked down many times. This time he took the biggest hits of all, and he's not getting up. The ref is standing over him and he is counting. Somewhere around a 7 or 8 count, with the fight almost over . . . the ref faints. No one knows what to do. The fight isn't over, but Max is given a little chance. While they work to revive the referee, Max slowly gets back up on his knees. But he's still wobbly and makes it to his corner. The next round is coming up, so his corner is doing all they can to get him strong and ready to go. . .
Looking back through the tremendous amount of support we received last week is overwhelming. To see the doctors so surprised by Max's progress is encouraging. When they told us he would be on the vent (oscillator or regular) for another month, it didn't break our spirits, in fact it was nice to imagine a length of time as long as a month, and not just a day, or an hour. We are so grateful that Max is with us today. And we are so grateful to have such wonderful family and friends. We have relied on your support and we have depended on your love, but last week we needed even more, and people were there. The flood of guestbook entries kept us going in the hospital, the letters and packages were such nice surprises at the house, and the visitors - so many of you - who dropped everything to come and see us - allowed us so much special time with our guy (and surrounded him with so much love) that we are indebted once again. Thank you.
Finally, and most personally, I want to thank Margaret for being such a rock. Going into this, I was the mellow one, but out here I've been a wreck. I'm in a much better place today because of Max's health, but also because of Margaret. She has helped me take a step back and to try not to obsess over every number, every blood gas, every detail. So much of this is out of our hands and it's important to be clear-headed and not overly analytical. To that end, with things fairly stabile and the timetable for progress so unbelievably slow, don't be surprised if we skip an update every once in a while. This will only happen when there isn't much news, and that's a good thing.
Please keep the kind words and prayers coming. They really help. They've carried us through 93 days of being in this hospital. Please continue to pray for so many sick children and the families of Priyanka, Dan, Jenny, Alan, and Jake who are grieving the loss of their children from this unit. Also, continue to pray for the RMH families of Camryn, Brandon, and AJ who lost children from other units. And never forget Kendall's family and their devastating loss. We told Grace that Kendall was an angel now, and that she was flying around looking after all of us and Max. Grace said, rather jealous, "Why is my friend flying around?" It is very comforting to her to know that Kendall isn't sick anymore in heaven and that she can run and play without pain. She is such a good kid, with such a good heart, and even in our saddest times, she makes us laugh.
--mike
Max is in a much better place than a week ago. He is still on the oscillator, but he is much more stabile, and he is doing fairly well. A week ago, his kidneys appeared to have stopped, his bowel appeared to have stopped, and he was needing "pressers" because his blood pressure was so low. The doctors told us that because he needed the oscillator, their hands were tied and there wasn't much more they could do. Thankfully, Max (and a lot of diuretics) got his kidneys moving, his bowel moving, and his blood pressure came up.
So this is what it's like: It's a championship fight and Max has been knocked down many times. This time he took the biggest hits of all, and he's not getting up. The ref is standing over him and he is counting. Somewhere around a 7 or 8 count, with the fight almost over . . . the ref faints. No one knows what to do. The fight isn't over, but Max is given a little chance. While they work to revive the referee, Max slowly gets back up on his knees. But he's still wobbly and makes it to his corner. The next round is coming up, so his corner is doing all they can to get him strong and ready to go. . .
Looking back through the tremendous amount of support we received last week is overwhelming. To see the doctors so surprised by Max's progress is encouraging. When they told us he would be on the vent (oscillator or regular) for another month, it didn't break our spirits, in fact it was nice to imagine a length of time as long as a month, and not just a day, or an hour. We are so grateful that Max is with us today. And we are so grateful to have such wonderful family and friends. We have relied on your support and we have depended on your love, but last week we needed even more, and people were there. The flood of guestbook entries kept us going in the hospital, the letters and packages were such nice surprises at the house, and the visitors - so many of you - who dropped everything to come and see us - allowed us so much special time with our guy (and surrounded him with so much love) that we are indebted once again. Thank you.
Finally, and most personally, I want to thank Margaret for being such a rock. Going into this, I was the mellow one, but out here I've been a wreck. I'm in a much better place today because of Max's health, but also because of Margaret. She has helped me take a step back and to try not to obsess over every number, every blood gas, every detail. So much of this is out of our hands and it's important to be clear-headed and not overly analytical. To that end, with things fairly stabile and the timetable for progress so unbelievably slow, don't be surprised if we skip an update every once in a while. This will only happen when there isn't much news, and that's a good thing.
Please keep the kind words and prayers coming. They really help. They've carried us through 93 days of being in this hospital. Please continue to pray for so many sick children and the families of Priyanka, Dan, Jenny, Alan, and Jake who are grieving the loss of their children from this unit. Also, continue to pray for the RMH families of Camryn, Brandon, and AJ who lost children from other units. And never forget Kendall's family and their devastating loss. We told Grace that Kendall was an angel now, and that she was flying around looking after all of us and Max. Grace said, rather jealous, "Why is my friend flying around?" It is very comforting to her to know that Kendall isn't sick anymore in heaven and that she can run and play without pain. She is such a good kid, with such a good heart, and even in our saddest times, she makes us laugh.
--mike
posted by Mike Ciacciarelli
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