Day +72
WBC 11.8
Max has spent the last 24 hrs. bouncing away on the oscillator. Why bouncing? The machine works by delivering high frequency bursts of oxygen and nitrous oxide to Max's lungs. These bursts cause Max's whole body to bounce up and down rapidly with the machine. And the nitrous oxide acts as a "carrier" to help deliver the oxygen to the lungs more easily. It is actually a gentler way of oxygenating him than the regular vent, and I know he needs it, but it sure looks like torture to me.
On the positive side, Max finally began urinating last night with the help of drugs called Albumen and Bumex (and a pee dance done by Dr, Charnas, Max's neurologist and cheerleader). He has A LOT of catching up to do though, and he is extremely swollen with fluid and air. His abdomen looks uncomfortably huge, as does the rest of him. He has gained over 4 pounds in 2 days.
His skin looks terrible, and his whole body is red. One of the meds he is getting for his heart may be contributing to the redness. Yesterday afternoon his blood pressure was too low, but now it has gone up and they are giving him meds to lower it. What a seesaw!
His vent settings were lowered a tad bit today which is always good news. As Dr. Cornfield said yesterday, they have had kids much sicker than Max live, and have kids as sick as Max die. The trajectory he is on is not good, but there is still hope.
Special thanks go out to Auntie Bethie for flying in today to watch Grace. Other family members will be out the rest of the week to lend a hand.
We received an extra special delivery tonight from our friends, the Whites, from San Diego. Their daughter Susannah was transplanted twice in MN and went through a very difficult time. They sent us dinner, complete with dessert, wine, Halloween plates and napkins. It was delicious, especially the cake, which looked too pretty to cut, and was a much needed indulgence. Thank you Amy, Klane, Madeline, Susannah, and Gayle (who delivered the food)!
Please say extra prayers for Max's friend Sophie. She went into cardiac arrest and stopped breathing for a while. As of their last update, she is stable and is off the oscillator and onto a conventional vent. Please send them a guest book message of encouragement, as it makes a world of difference during times like these. Please also pray for Max's friend Cecelia in Chicago who was vented recently (non Hurler), and the families of two transplant patients who passed away this week. Alan was 13 and Jake was 21. They neighbored Max on both sides, and while we never met them we did meet their families. Alan's sister recently watched Sleeping Beauty and ate popcorn with Grace and another friend. His dad was so dedicated, his mom recently had a baby and we can only imagine how heartbroken they are. Jake married his fiance in his hospital room before he was placed on the vent. His mom Peg is so nice, and she remarked once that she loved to see Grace in the hall because she has so much life in her.
A few weeks ago we mentioned that there were 5 ICU rooms on 4A. Of those 5 Max is the only one still alive. We are so blessed to have each day with him, as we know the alternative is so much worse.
Thanks so much for your support,
Margaret
Max has spent the last 24 hrs. bouncing away on the oscillator. Why bouncing? The machine works by delivering high frequency bursts of oxygen and nitrous oxide to Max's lungs. These bursts cause Max's whole body to bounce up and down rapidly with the machine. And the nitrous oxide acts as a "carrier" to help deliver the oxygen to the lungs more easily. It is actually a gentler way of oxygenating him than the regular vent, and I know he needs it, but it sure looks like torture to me.
On the positive side, Max finally began urinating last night with the help of drugs called Albumen and Bumex (and a pee dance done by Dr, Charnas, Max's neurologist and cheerleader). He has A LOT of catching up to do though, and he is extremely swollen with fluid and air. His abdomen looks uncomfortably huge, as does the rest of him. He has gained over 4 pounds in 2 days.
His skin looks terrible, and his whole body is red. One of the meds he is getting for his heart may be contributing to the redness. Yesterday afternoon his blood pressure was too low, but now it has gone up and they are giving him meds to lower it. What a seesaw!
His vent settings were lowered a tad bit today which is always good news. As Dr. Cornfield said yesterday, they have had kids much sicker than Max live, and have kids as sick as Max die. The trajectory he is on is not good, but there is still hope.
Special thanks go out to Auntie Bethie for flying in today to watch Grace. Other family members will be out the rest of the week to lend a hand.
We received an extra special delivery tonight from our friends, the Whites, from San Diego. Their daughter Susannah was transplanted twice in MN and went through a very difficult time. They sent us dinner, complete with dessert, wine, Halloween plates and napkins. It was delicious, especially the cake, which looked too pretty to cut, and was a much needed indulgence. Thank you Amy, Klane, Madeline, Susannah, and Gayle (who delivered the food)!
Please say extra prayers for Max's friend Sophie. She went into cardiac arrest and stopped breathing for a while. As of their last update, she is stable and is off the oscillator and onto a conventional vent. Please send them a guest book message of encouragement, as it makes a world of difference during times like these. Please also pray for Max's friend Cecelia in Chicago who was vented recently (non Hurler), and the families of two transplant patients who passed away this week. Alan was 13 and Jake was 21. They neighbored Max on both sides, and while we never met them we did meet their families. Alan's sister recently watched Sleeping Beauty and ate popcorn with Grace and another friend. His dad was so dedicated, his mom recently had a baby and we can only imagine how heartbroken they are. Jake married his fiance in his hospital room before he was placed on the vent. His mom Peg is so nice, and she remarked once that she loved to see Grace in the hall because she has so much life in her.
A few weeks ago we mentioned that there were 5 ICU rooms on 4A. Of those 5 Max is the only one still alive. We are so blessed to have each day with him, as we know the alternative is so much worse.
Thanks so much for your support,
Margaret
posted by Mike Ciacciarelli
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