Day +85
WBC 6.8
Greetings all Mighty-Max fans!!! I was asked to write the update tonight as the guest reporter. I am Auntie Peeps (Lisa)--Mike's younger sister and proud aunt of Max and Grace. I have been in Minnesota since the SOS was called last week. When I made my plane ticket, I thought that I was going to be too late. I thought that my nephew Max would have already passed. And, I thought, sadly, that I wouldn't have had the opportunity to see his beautiful self alive again. But, it is funny how sometimes things are WRONG!!!!! Since I have been here, I have witnessed some baby steps of
opeful recovery. Like my dad wrote before, the nurses and the doctors haven't given up, Mike and Margaret haven't given up, Max hasn't given up, and I definitely haven't either. I know if you follow these reports you haven't either.
I have to admit, i was a little nervous about being here alone after all the other family members left. I know that Mike and Margaret had appreciated all the help of Grannie Judy, Auntie Katie, Grandma Chick, Auntie Dana, and Grandpa John and once they left, I wondered what I could do to help. I have been Gracie's pal, hanging out with her at the Ronald McDonald house. She is doing well. She is a barrel of fun and her imagination is bigger than anyone else I know. She introduced me to her friends at the house--Kirsten, Rileigh, Taylor, Rowan and Amelia. I have had so much fun playing with all of them--hide and seek, tag, wolf, polly pockets, my little pony, etc. Even though I don't have children, I have learned ALOT this week. I will be sad to leave them all. But, the biggest thing that I will remember about Grace is what I heard her say this morning when I woke up. She was talking to Mike and said, "Daddy, I miss Max. I wish he would come back to the Ronald McDonald House. I love him." Mike told her that he loves her too, and that he wishes he could play with her too.
Max, on the other hand is doing great too!!!! I wouldn't call myself very religious, but if there was ever a time to believe in miracles it is now. He is just such a mysterious boy. I got to see him get off the oscillator vent this week (how quiet the room is now) and I saw him work so hard to prove to all of us that he could work harder. I saw his GVH get better. I became excited if he peed or pooped. I got to feel him squeeze my hand. He is taking baby steps on this vent, and today his CT scan went well. Margaret told me it was a little scary at first because a team of people had to cart Max to the CT room. He was off the vent for the voyage and had to be bagged.
They did a scan of his head, abdomen and lungs. His lungs showed some new areas of collapse, but no new spots from the AFB (bacterium). The brain showed a small bleed that the neurologist is not worried about. So far, no one has said anything about the abdomen. Later he had a bronchoscopy, and the pulminologist tried to open up one of the closed areas and said that the Max's lungs overall look pretty good.
In other news, he is still requiring the regular vent to be on very high settings, and he hasn't stooled in almost a week. But, the bottom line is that if you've been wishin', hopin', or prayin', for Max, don't stop!!!!! I have had the opportunity to meet some Hurler's children at RMH--Taylor, Tommy and Bella and their personalities and smiles and laughs--they are all great children who are so loved by their parents. I know that Mike and Margaret wish to have Max play with them one day.
As for Mike and Margaret, they're great. I'm not the best at dealing with difficult situations, but they are rolling with everything. They desire so much for the answer to every situation with Max, they could probably pass med school with all their new found knowledge. The love that they share for one another and for their children is amazing. In fact, no matter how tired they may be, they always make time for Grace even if it is the 10th time they watch the My Little Pony video, or the hour long game of Polly Pockets they play with her before bed. I think that Grace keeps them going. Her jokes, her smile, her hugs, and just her all-around self pick Mike and Margs up when they're down. I am so proud of all of them. And, so proud that I have gotten to share this moment of their lives with them.
I told the kids at RMH that I was leaving Sunday and they were sad. I don't think they're as sad as me. There's so much more that I want to witness. I have learned alot since I have been here. Every experience you have teaches you something about life. Max has taught me not to give up, to keep fighting when things get hard. Grace has taught me jokes, magic tricks, and a love for the simplest things in life. (She also taught me "loco" in Spanish when she called me her "loco" aunt.) Mike and Margs taught me that things may be difficult or hard or confusing, but it doesn't mean you have to be too. They are the same funny, smart, and silly couple that I know and love. The bottom line is, and I apologize for this novel, is that we must NOT give up on each other. As people who follow this site, we are connected in a bond for Max. Keep up all the hard work.
--Peeps
PS--Jodie, good luck with the raffle---It's not too late to be a part of this fundraiser!!!
PPS--Pray for Kaitlyn who begins her pre-transplant work-up next week.
Greetings all Mighty-Max fans!!! I was asked to write the update tonight as the guest reporter. I am Auntie Peeps (Lisa)--Mike's younger sister and proud aunt of Max and Grace. I have been in Minnesota since the SOS was called last week. When I made my plane ticket, I thought that I was going to be too late. I thought that my nephew Max would have already passed. And, I thought, sadly, that I wouldn't have had the opportunity to see his beautiful self alive again. But, it is funny how sometimes things are WRONG!!!!! Since I have been here, I have witnessed some baby steps of
opeful recovery. Like my dad wrote before, the nurses and the doctors haven't given up, Mike and Margaret haven't given up, Max hasn't given up, and I definitely haven't either. I know if you follow these reports you haven't either.
I have to admit, i was a little nervous about being here alone after all the other family members left. I know that Mike and Margaret had appreciated all the help of Grannie Judy, Auntie Katie, Grandma Chick, Auntie Dana, and Grandpa John and once they left, I wondered what I could do to help. I have been Gracie's pal, hanging out with her at the Ronald McDonald house. She is doing well. She is a barrel of fun and her imagination is bigger than anyone else I know. She introduced me to her friends at the house--Kirsten, Rileigh, Taylor, Rowan and Amelia. I have had so much fun playing with all of them--hide and seek, tag, wolf, polly pockets, my little pony, etc. Even though I don't have children, I have learned ALOT this week. I will be sad to leave them all. But, the biggest thing that I will remember about Grace is what I heard her say this morning when I woke up. She was talking to Mike and said, "Daddy, I miss Max. I wish he would come back to the Ronald McDonald House. I love him." Mike told her that he loves her too, and that he wishes he could play with her too.
Max, on the other hand is doing great too!!!! I wouldn't call myself very religious, but if there was ever a time to believe in miracles it is now. He is just such a mysterious boy. I got to see him get off the oscillator vent this week (how quiet the room is now) and I saw him work so hard to prove to all of us that he could work harder. I saw his GVH get better. I became excited if he peed or pooped. I got to feel him squeeze my hand. He is taking baby steps on this vent, and today his CT scan went well. Margaret told me it was a little scary at first because a team of people had to cart Max to the CT room. He was off the vent for the voyage and had to be bagged.
They did a scan of his head, abdomen and lungs. His lungs showed some new areas of collapse, but no new spots from the AFB (bacterium). The brain showed a small bleed that the neurologist is not worried about. So far, no one has said anything about the abdomen. Later he had a bronchoscopy, and the pulminologist tried to open up one of the closed areas and said that the Max's lungs overall look pretty good.
In other news, he is still requiring the regular vent to be on very high settings, and he hasn't stooled in almost a week. But, the bottom line is that if you've been wishin', hopin', or prayin', for Max, don't stop!!!!! I have had the opportunity to meet some Hurler's children at RMH--Taylor, Tommy and Bella and their personalities and smiles and laughs--they are all great children who are so loved by their parents. I know that Mike and Margaret wish to have Max play with them one day.
As for Mike and Margaret, they're great. I'm not the best at dealing with difficult situations, but they are rolling with everything. They desire so much for the answer to every situation with Max, they could probably pass med school with all their new found knowledge. The love that they share for one another and for their children is amazing. In fact, no matter how tired they may be, they always make time for Grace even if it is the 10th time they watch the My Little Pony video, or the hour long game of Polly Pockets they play with her before bed. I think that Grace keeps them going. Her jokes, her smile, her hugs, and just her all-around self pick Mike and Margs up when they're down. I am so proud of all of them. And, so proud that I have gotten to share this moment of their lives with them.
I told the kids at RMH that I was leaving Sunday and they were sad. I don't think they're as sad as me. There's so much more that I want to witness. I have learned alot since I have been here. Every experience you have teaches you something about life. Max has taught me not to give up, to keep fighting when things get hard. Grace has taught me jokes, magic tricks, and a love for the simplest things in life. (She also taught me "loco" in Spanish when she called me her "loco" aunt.) Mike and Margs taught me that things may be difficult or hard or confusing, but it doesn't mean you have to be too. They are the same funny, smart, and silly couple that I know and love. The bottom line is, and I apologize for this novel, is that we must NOT give up on each other. As people who follow this site, we are connected in a bond for Max. Keep up all the hard work.
--Peeps
PS--Jodie, good luck with the raffle---It's not too late to be a part of this fundraiser!!!
PPS--Pray for Kaitlyn who begins her pre-transplant work-up next week.
posted by Mike Ciacciarelli
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