Day +71
REVISED AND UPDATED AT 11PM (LENGTHY)
>From earlier:
Max was just put on an oscillator because of new bleeding in his lungs. His saturations dropped very low during a suction and it took a very large team of people a fair amount of time to work him back up to a more stable situation. They bagged his lungs until the oscillator came in and he's now hooked up. The ICU doctor was suspicious of some heart trouble and an echo showed that his heart was a little empty in the left ventricle. This indicated that he lost blood from the bleeding. They have added blood products to replace this and have started a more rigorous schedule of administering some clotting medicine. Overall he is retaining fluid, and they are trying their best to get his kidneys to kick into high gear.
Perhaps most telling of the seriousness of everything, during the chaos the chaplain came and asked if we'd like a priest to administer Anointing of the Sick. It sure can't hurt. Please pray for Max, his doctors, and us as we are put through another tough trial. We will try to write more when we can.
Updated 11pm:
The Anointing of the Sick went well but was nearly overwhelming emotionally. It's awkward to have a priest you've never met and has never met your kid come in to say some prayers. It's hard to know what he was told before entering, but it was clear by how things went that he thought we were close to a place where we would be saying goodbye to our son. In addition to the prayers to get well, there was one that is said as Max gets to heaven. I came so close to grabbing his arm and stopping him because that's what my mind was telling me. "Wait just a minute, these doctors haven't stopped fighting" but my heart was breaking, and with all religious ceremonies, there is such rigid protocol and leave it to me to mess it up. But it was a nice prayer and there was a gap where he asked us to ask God for some of the key things about Max that Max would need to get better. Margaret and I couldn't sob any words outt, but Grannie was there and offered up the most beautiful words for Max. She asked for his courage and his strength first to help him fight on, and she spoke of how much Max has taught us about unconditional love. I can't thank you enough Grannie for speaking when we lost our voices, but for saying what was in our hearts. And for getting us paper towels to dry our eyes and blow our noses. We love you so much.
I know I had some reservations about asking the priest to come in, just because in some way it might show some resignation. But we haven't given up and neither, for sure, has Max. And I hope he knows that.
Also in the not giving up club are Max's doctors and nurses too and I want to mention a very special person in case she is checking up on Max. We have the best nurse in all of 4A in our room every time she works, Anmarie. Now I know that might upset some other nurses, but I asked Max and he said Anmarie. She became our primary before we ever knew how important it was to have one, and every shift she spends with Max she helps him so much. She also is cool under fire and believe me, in this room there is a lot of fire. She is such a good person, and has a good heart, and is very sensitive to our needs. At the key moment today when it looked like things were not going well, I asked her if I should get Margaret and she said yes, and that alone was done with such sincerity and compassion and I really appreciated it. She was asked to stay on for a double today and she agreed even though today must have felt like a triple! I'm sure she's exhausted. She may seem demur, but when she wants to kick a little butt on behalf of Max, she can do it. We hope to have you again on Wednesday!
Now back to Max. Since earlier, he has not gotten rid of any fluid. Are his kidneys failing? Tonight will tell us the answer for sure. His weight is up about 30% and he looks so bloated. If only some Oompa Loompas could take Max down to be juiced like Veruca Salt. Two peripheral IVs have been added because Max is on so many medicines. Another IV pole was brought out to help hold all the auto-syringes. His belly is also full of air because of all the emergency bagging they had to do to get him enough oxygen. His skin is beet red because of many factors, the newest being a streptococcis bug that was discovered with the last bronchoscopy. That may be the cause of the lung bleeds, but most likely it is the abuse his lungs have been taking (like the rest of him) from graft vs. host disease. We got some good news about his EEG, his seizure activity looks the best yet. He is on a new anti-seizure regimen now and it has pretty much put him into a deep deep sleep. That was good for his seizures, and good for all the messing around they had to do today.
Again, with so many systemic issues all going on at the same time, it seems like something major is popping up every day. Today in addition to the bleeding, we had a surprise with the heart looking a little weird. Now it's his kidneys that aren't working well enough. At some point, something, some one thing, needs to get better, or this trend is going to be very bad for Max. Have kids recovered from all this? Yes. And so can Max. But he needs some major good luck.
Max, we are so proud of you. You are courageous and brave. And you have our unconditional love for now and forever.
--Mike & Margaret
>From earlier:
Max was just put on an oscillator because of new bleeding in his lungs. His saturations dropped very low during a suction and it took a very large team of people a fair amount of time to work him back up to a more stable situation. They bagged his lungs until the oscillator came in and he's now hooked up. The ICU doctor was suspicious of some heart trouble and an echo showed that his heart was a little empty in the left ventricle. This indicated that he lost blood from the bleeding. They have added blood products to replace this and have started a more rigorous schedule of administering some clotting medicine. Overall he is retaining fluid, and they are trying their best to get his kidneys to kick into high gear.
Perhaps most telling of the seriousness of everything, during the chaos the chaplain came and asked if we'd like a priest to administer Anointing of the Sick. It sure can't hurt. Please pray for Max, his doctors, and us as we are put through another tough trial. We will try to write more when we can.
Updated 11pm:
The Anointing of the Sick went well but was nearly overwhelming emotionally. It's awkward to have a priest you've never met and has never met your kid come in to say some prayers. It's hard to know what he was told before entering, but it was clear by how things went that he thought we were close to a place where we would be saying goodbye to our son. In addition to the prayers to get well, there was one that is said as Max gets to heaven. I came so close to grabbing his arm and stopping him because that's what my mind was telling me. "Wait just a minute, these doctors haven't stopped fighting" but my heart was breaking, and with all religious ceremonies, there is such rigid protocol and leave it to me to mess it up. But it was a nice prayer and there was a gap where he asked us to ask God for some of the key things about Max that Max would need to get better. Margaret and I couldn't sob any words outt, but Grannie was there and offered up the most beautiful words for Max. She asked for his courage and his strength first to help him fight on, and she spoke of how much Max has taught us about unconditional love. I can't thank you enough Grannie for speaking when we lost our voices, but for saying what was in our hearts. And for getting us paper towels to dry our eyes and blow our noses. We love you so much.
I know I had some reservations about asking the priest to come in, just because in some way it might show some resignation. But we haven't given up and neither, for sure, has Max. And I hope he knows that.
Also in the not giving up club are Max's doctors and nurses too and I want to mention a very special person in case she is checking up on Max. We have the best nurse in all of 4A in our room every time she works, Anmarie. Now I know that might upset some other nurses, but I asked Max and he said Anmarie. She became our primary before we ever knew how important it was to have one, and every shift she spends with Max she helps him so much. She also is cool under fire and believe me, in this room there is a lot of fire. She is such a good person, and has a good heart, and is very sensitive to our needs. At the key moment today when it looked like things were not going well, I asked her if I should get Margaret and she said yes, and that alone was done with such sincerity and compassion and I really appreciated it. She was asked to stay on for a double today and she agreed even though today must have felt like a triple! I'm sure she's exhausted. She may seem demur, but when she wants to kick a little butt on behalf of Max, she can do it. We hope to have you again on Wednesday!
Now back to Max. Since earlier, he has not gotten rid of any fluid. Are his kidneys failing? Tonight will tell us the answer for sure. His weight is up about 30% and he looks so bloated. If only some Oompa Loompas could take Max down to be juiced like Veruca Salt. Two peripheral IVs have been added because Max is on so many medicines. Another IV pole was brought out to help hold all the auto-syringes. His belly is also full of air because of all the emergency bagging they had to do to get him enough oxygen. His skin is beet red because of many factors, the newest being a streptococcis bug that was discovered with the last bronchoscopy. That may be the cause of the lung bleeds, but most likely it is the abuse his lungs have been taking (like the rest of him) from graft vs. host disease. We got some good news about his EEG, his seizure activity looks the best yet. He is on a new anti-seizure regimen now and it has pretty much put him into a deep deep sleep. That was good for his seizures, and good for all the messing around they had to do today.
Again, with so many systemic issues all going on at the same time, it seems like something major is popping up every day. Today in addition to the bleeding, we had a surprise with the heart looking a little weird. Now it's his kidneys that aren't working well enough. At some point, something, some one thing, needs to get better, or this trend is going to be very bad for Max. Have kids recovered from all this? Yes. And so can Max. But he needs some major good luck.
Max, we are so proud of you. You are courageous and brave. And you have our unconditional love for now and forever.
--Mike & Margaret
posted by Mike Ciacciarelli
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