Relief, sorta
Sam survived the upper and lower endoscopies yesterday. The poor guy had to wait until the very last case of the day so it made for one long day. He was able to sleep the entire morning away but the afternoon he was very anxious and I could not get a smile out of him to save my soul.
At the hospital, he laid in his bed with his head bowed and his eyes closed. He was taking deep breaths. I said, "Sam, you are meditating?" He shook his head no. "Are you praying?" He shook his head no. "Are you sleeping?" He shook his head no, "What are you doing?" He wouldn't answer me.
It was the strangest thing I have ever seen him do. When the nurse came in to ask him questions, his response was barely audible and he never lifted his head or opened his eyes. She was really nice, tried to involve him in starting the IV, wrap the coban and all sorts of things but Sam would have nothing of it. He just laid there with his head bowed. Sometimes, a tear would escape his eye but he never really broke down in tears. It was almost worse to see than a big old tantrum of fear which I probably would have rather had since at least it would have been an expression of something rather than this flat, dead look. I fought the tears the whole time because it was the saddest sight.
Everything went well, except I was a bit miffed with the Anesthesiologist at first. He was a new guy and when I asked him if he had spoken with the docs at Seattle Children's he said, "Well, I saw the note but I think we can handle it so I didn't bother to call." I wanted to tackle him to the floor but remained calm instead. The nurse actually handled it quite well instead. She said, "Sam has some complicated health problems and might have been really important to hear what they had to say." He came back a while later and said he tried to call but could not reach anyone, just a bunch of voice messages but reassured me that he would not use Propofol. I am glad he swallowed his pride and tried but it was a little late in the game.
Dr. Hansen was of course the best part of the day. I knew Sam was in good hands and even though Dr. H had had a huge day of other surgeries, he was energetic and happy. Sam finally smiled when they gave him the Versed, he laughed even. The OR nurse came in to take him and said, "Can you tell me your name?" Sam looked at me, then looked at his hospital band," I know my name but I can't pronounce it." then he started laughing and made a feeble attempt to say his name.
Anyways, the bottom line is, Sam has about an 8" length of bowel that is inflammed and a good portion of it covered in ulcers. He either has infectious colitis (C-Diff) or Inflammatory Bowel Disease. One takes months to treat, the other a lifetime and is an auto-immune disease. He also showed abnormalities in his duodenum which is located in the small bowel, closer to his stomach. That could be indicitive of Celiac's Disease but it could be a manifestation of mitochondrial disease or Shwachman Diamond Syndrome. Spencer has the very same abnormality and he had a negative Celiacs test.
I am very grateful that we have been able to catch this 'early' before his bowel was perforated or blocked. It is causing some spasms which can act like a blockage but that can be treated with medication. It's so crazy because in Seattle, I told the doc that Sam was my 'easy', healthy child. I truly did not see this coming. Just shows how unpredictable these diseases are.
Last night, we were home about 40 min. and Spencer was flat out in excruciating pain coming from the center of his chest. I tried everything from essential oils to acid blockers and reducers but none gave him relief. This morning he is feeling better.
Monday, Shelbie will be in the hospital for her transfusion which I am dreading since the past three times have been horrendous. Currently, there is a small boy in the UK clinging to life because of the same virus that Shelbie has had for almost year, Adenovirus. It has attacked his lungs. Shelbie's is working on her eyes and sinuses. I had no idea it could get so ugly and it scares me, so, we will gladly endure these transfusions if it keeps the viruses under control.
Thank you to those who have offered such kindness and warm thoughts. I will end on a funny note...My neighbor took a Jimmy Johns sandwich and Pepsi up to the hospital on her lunch break for me but she didn't know we hadn't checked in yet so she asked the admission clerks if they could keep it in their fridge until I arrived. At first, (the admission clerk told me) they said they were going to flat out tell her that they don't hold food for people but then when she said it was for me, they said, "Oh Kathy, ya, no problem." So funny but sad at the same time that we are there so much, they know us on a first name basis.
At the hospital, he laid in his bed with his head bowed and his eyes closed. He was taking deep breaths. I said, "Sam, you are meditating?" He shook his head no. "Are you praying?" He shook his head no. "Are you sleeping?" He shook his head no, "What are you doing?" He wouldn't answer me.
It was the strangest thing I have ever seen him do. When the nurse came in to ask him questions, his response was barely audible and he never lifted his head or opened his eyes. She was really nice, tried to involve him in starting the IV, wrap the coban and all sorts of things but Sam would have nothing of it. He just laid there with his head bowed. Sometimes, a tear would escape his eye but he never really broke down in tears. It was almost worse to see than a big old tantrum of fear which I probably would have rather had since at least it would have been an expression of something rather than this flat, dead look. I fought the tears the whole time because it was the saddest sight.
Everything went well, except I was a bit miffed with the Anesthesiologist at first. He was a new guy and when I asked him if he had spoken with the docs at Seattle Children's he said, "Well, I saw the note but I think we can handle it so I didn't bother to call." I wanted to tackle him to the floor but remained calm instead. The nurse actually handled it quite well instead. She said, "Sam has some complicated health problems and might have been really important to hear what they had to say." He came back a while later and said he tried to call but could not reach anyone, just a bunch of voice messages but reassured me that he would not use Propofol. I am glad he swallowed his pride and tried but it was a little late in the game.
Dr. Hansen was of course the best part of the day. I knew Sam was in good hands and even though Dr. H had had a huge day of other surgeries, he was energetic and happy. Sam finally smiled when they gave him the Versed, he laughed even. The OR nurse came in to take him and said, "Can you tell me your name?" Sam looked at me, then looked at his hospital band," I know my name but I can't pronounce it." then he started laughing and made a feeble attempt to say his name.
Anyways, the bottom line is, Sam has about an 8" length of bowel that is inflammed and a good portion of it covered in ulcers. He either has infectious colitis (C-Diff) or Inflammatory Bowel Disease. One takes months to treat, the other a lifetime and is an auto-immune disease. He also showed abnormalities in his duodenum which is located in the small bowel, closer to his stomach. That could be indicitive of Celiac's Disease but it could be a manifestation of mitochondrial disease or Shwachman Diamond Syndrome. Spencer has the very same abnormality and he had a negative Celiacs test.
I am very grateful that we have been able to catch this 'early' before his bowel was perforated or blocked. It is causing some spasms which can act like a blockage but that can be treated with medication. It's so crazy because in Seattle, I told the doc that Sam was my 'easy', healthy child. I truly did not see this coming. Just shows how unpredictable these diseases are.
Last night, we were home about 40 min. and Spencer was flat out in excruciating pain coming from the center of his chest. I tried everything from essential oils to acid blockers and reducers but none gave him relief. This morning he is feeling better.
Monday, Shelbie will be in the hospital for her transfusion which I am dreading since the past three times have been horrendous. Currently, there is a small boy in the UK clinging to life because of the same virus that Shelbie has had for almost year, Adenovirus. It has attacked his lungs. Shelbie's is working on her eyes and sinuses. I had no idea it could get so ugly and it scares me, so, we will gladly endure these transfusions if it keeps the viruses under control.
Thank you to those who have offered such kindness and warm thoughts. I will end on a funny note...My neighbor took a Jimmy Johns sandwich and Pepsi up to the hospital on her lunch break for me but she didn't know we hadn't checked in yet so she asked the admission clerks if they could keep it in their fridge until I arrived. At first, (the admission clerk told me) they said they were going to flat out tell her that they don't hold food for people but then when she said it was for me, they said, "Oh Kathy, ya, no problem." So funny but sad at the same time that we are there so much, they know us on a first name basis.
Comments
Post a Comment