This will be short as I am wiped out! I went to sleep shortly after blogging last night. I was sound asleep until Alex woke me at 4:00 this morning complaining of his belly hurting. I assumed it was his new tube and went to ask if he could have something for pain. The pain quickly progressed and even after one dose of pain meds he was miserable. Then he started retching and gagging. I had them page the doctors again. I asked them to run an Amylase and Lipase (blood tests to check his pancreas) as the pain was becoming unbearable. Even after a second dose of pain meds he was writhing, thrashing and crying in the bed. He just kept begging me to help him. His lipase came back to high to quantify and his amylase was also extremely high meaning he has acute pancreatitis once again. For most of the morning we were not able to control his pain or nausea. He was screaming out like I have never seen him. There was talk of sending him to the PICU where we could be more aggressive in pain management. Luckily, we have awesome doctors and pharmacists here who know Alex well and started him on a PCA pump of fentanyl. He is able to push a button every 20 min to get a dose of pain meds. They have also doubled up his nausea medications. After spending most of the day either awake and crying/screaming or sleeping, he woke up around 4 pm and asked for his ds. It was like music to my ears. He is still in some pain. He is pushing the button quite frequently. His heart rate skyrockets everytime he moves in bed, but he is doing SO much better. For a few hours he played ds and watched movies before going back to sleep. His liver numbers are now the highest we have ever seen in Alex (one is almost 700 and the other just under 400). We have been waiting on ultrasound to see if there is anything we can pick up. Unfortunately it is the weekend so the one US guy is swamped. Alex is also running a low grade temp. There are some changes in his cbc, but the decision for right now is to watch and wait before starting antibiotics. I think that is all of it.
I will continue to update facebook during the day and the blog at night. Thank you again for all the prayers. They were needed (and felt) today!
Ali
Alex and Maddy
Saturday, March 17, 2012
Friday, March 16, 2012
Rough Night
The week has gone from crazy to crazier! After Alex's labs Monday and a visit to the pediatrician, it seemed that Alex had a virus and we were going to stay home and manage him from there. However his liver enzymes had jumped about 150 points from last week so it was decided that we needed to repeat labs on Tuesday.
Tuesday's labs were not good. His CBC showed that his body was quite neutropenic and his liver numbers had jumped by about another 100 points. But he seemed to be feeling better.
Wednesday his cbc looked the same, but his liver once again jumped by almost 100 points. His cough was also starting to sound pretty nasty.
Thursday's CBC was marginally better and his liver numbers while still trending up, did so by a much smaller amount. I really began to think we might escape an admission. However, my little Buggy had other plans! He was watching TV in his room. He got down from his bed to get a book and his tube was caught on one of the drawer knobs (He has a captain's bed). As he went for the bookcase, his Jtube was pulled out. He cam out to the family room crying, bleeding, holding his tube in his hand. I quickly inserted something to hold his stoma open then began the mad dash to pack and get to the hospital. We made it to the ER about midnight. After a long night in the ER with virtually no sleep we made it up to a room around 5:30 this morning. There was still no sleep to be had as our room was a revolving door of people coming and going. After lunch Alex and I crashed and slept for several hours. We were awakened about 4:00 by someone coming to take us down to the OR. We waited for a while. Alex was nervous as he hates anesthesia and we were using someone new to us. Alex was finally taken back for a VERY short surgery to replace his tube. We spent a short time in PACU before heading back to our room. As soon as we got up to the room, I had a feeling something wasn't right. I couldn't put my finger on it, I was just uncomfortable. A resident came in and I expressed my concern that Alex was not on monitors so soon after surgery and with him still not awake. Then the nurse came in and I told her his tongue seemed swollen. Another resident came in and Alex started seizing. She was worried and quickly to made the decision to transfer him to our "normal" unit. (He had been on the general peds floor). We also hurried to give a dose of keppra (his seizure med). Alex seized off and on for about an hour and a half. His heart rate was very high with each seizure and he was having a hard time with his orientation, not to mention the involuntary movements of his legs, arms and tongue. We have run labs and he is finally resting comfortably. His little face is red as a tomato, not quite sure what that is about, but everything else seems ok. I am hoping the seizures are over. No matter how many times you see a seizure it is always scary. I am so thankful for the incredible doctors and nurses who always take such good care of Alex and were so quick in acting tonight.
Please pray for a peaceful, restful night for both Bug and I!!!!
Ali
Tuesday's labs were not good. His CBC showed that his body was quite neutropenic and his liver numbers had jumped by about another 100 points. But he seemed to be feeling better.
Wednesday his cbc looked the same, but his liver once again jumped by almost 100 points. His cough was also starting to sound pretty nasty.
Thursday's CBC was marginally better and his liver numbers while still trending up, did so by a much smaller amount. I really began to think we might escape an admission. However, my little Buggy had other plans! He was watching TV in his room. He got down from his bed to get a book and his tube was caught on one of the drawer knobs (He has a captain's bed). As he went for the bookcase, his Jtube was pulled out. He cam out to the family room crying, bleeding, holding his tube in his hand. I quickly inserted something to hold his stoma open then began the mad dash to pack and get to the hospital. We made it to the ER about midnight. After a long night in the ER with virtually no sleep we made it up to a room around 5:30 this morning. There was still no sleep to be had as our room was a revolving door of people coming and going. After lunch Alex and I crashed and slept for several hours. We were awakened about 4:00 by someone coming to take us down to the OR. We waited for a while. Alex was nervous as he hates anesthesia and we were using someone new to us. Alex was finally taken back for a VERY short surgery to replace his tube. We spent a short time in PACU before heading back to our room. As soon as we got up to the room, I had a feeling something wasn't right. I couldn't put my finger on it, I was just uncomfortable. A resident came in and I expressed my concern that Alex was not on monitors so soon after surgery and with him still not awake. Then the nurse came in and I told her his tongue seemed swollen. Another resident came in and Alex started seizing. She was worried and quickly to made the decision to transfer him to our "normal" unit. (He had been on the general peds floor). We also hurried to give a dose of keppra (his seizure med). Alex seized off and on for about an hour and a half. His heart rate was very high with each seizure and he was having a hard time with his orientation, not to mention the involuntary movements of his legs, arms and tongue. We have run labs and he is finally resting comfortably. His little face is red as a tomato, not quite sure what that is about, but everything else seems ok. I am hoping the seizures are over. No matter how many times you see a seizure it is always scary. I am so thankful for the incredible doctors and nurses who always take such good care of Alex and were so quick in acting tonight.
Please pray for a peaceful, restful night for both Bug and I!!!!
Ali
Sunday, March 11, 2012
A visit, a trip, and a fever
What a crazy few weeks! Mimi and PopPop flew in on March 2nd for a visit. We always love having our family around. Mimi and Alex both had appointments with Dr. Koenig on March 6th so after one day of relaxation we headed to Houston. Using Hotwire, we were lucky to be staying in a beautiful hotel. Unfortunately, I started not feeling well the day before we left. I really pushed myself to try and keep going so we could enjoy our trip, but I felt pretty bad the whole time. On Monday we spent the morning at the hospital and then had a quiet aftenoon at the hotel. Tuesday we had our apointments. We just saw Dr. Koenig in January and February so there wasn't too much to discuss. Our main concern from a neurological standpoint right now is that Alex is having increased neuropathy and we haven't looked at his syrinx in over a year. We have been trying to avoid putting Alex under anesthesia for elective procedures as he always struggles and it sets us back. However, we cannot wait any longer. If the syrinx expands it can do damage to the spinal cord. So we will be scheduling that shortly. We also discussed a possible 24 hour VEEG, but decided against it right now. Alex has been having some "tremors" at night which we thought might be an increase in seizures. After talking to both Alex and I, Dr. K is hopeful it is just sleep myoclonus so we will just wait and watch for now. I think that was mostly it. I was also able to quickly check in with GI about a few concerns, mainly that we have not been able to increase Alex's feeds anymore and also his extreme bloating is back after stopping the antibiotics we were on. We are still discussing our options.
Once we left the clinic, we headed to Kemah Boardwalk for an afternoon of fun. Alex loved the rides, especially the drop zone. It was hysterical watching him. He kept getting off and insisting he needed to get back in line (there was no one there) and running back around the ride to the entrance. Then he would scream and giggle the entire ride before doing it all again!
After one more night in Houston, we headed home on Wednesday. PopPop and Bruce did some much needed work on the house. It was so nice for Bruce to have someone who knows what they are doing to help him. PopPop definitely earned his keep!!!! Hopefully, I'll have pictures for next update! Thursday we took Alex to see a movie. It is so awesome to go to a matinee during the week because it is always empty! Friday we headed to Great Wolf to let Alex play some MagiQuest. We were so sad to see Mimi and PopPop go yesterday. We always wish we had more time to enjoy our family. Unfortunately, by yesterday morning Alex had a nasty wet cough and a low grade temp. It was up to 101 by midday and I had to decide whether to head to the hospital or not. I decided to give a dose of tylenol (which we normally don't use bc of Alex's liver disease) and so far his temp has stayed in the 100's. He doesn't feel great, but is holding his own. I am so happy we have managed to survive the weekend without having to head to the hospital. I will have to take him to the pediatrician tomorrow as I am sure he has what I do and I needed antibiotics.
We are hoping for a quiet few weeks before we need to head to Houston the first two weeks on April. Hopefully, things will settle down and give us those few weeks of quiet we so desperately need.
Ali
Once we left the clinic, we headed to Kemah Boardwalk for an afternoon of fun. Alex loved the rides, especially the drop zone. It was hysterical watching him. He kept getting off and insisting he needed to get back in line (there was no one there) and running back around the ride to the entrance. Then he would scream and giggle the entire ride before doing it all again!
After one more night in Houston, we headed home on Wednesday. PopPop and Bruce did some much needed work on the house. It was so nice for Bruce to have someone who knows what they are doing to help him. PopPop definitely earned his keep!!!! Hopefully, I'll have pictures for next update! Thursday we took Alex to see a movie. It is so awesome to go to a matinee during the week because it is always empty! Friday we headed to Great Wolf to let Alex play some MagiQuest. We were so sad to see Mimi and PopPop go yesterday. We always wish we had more time to enjoy our family. Unfortunately, by yesterday morning Alex had a nasty wet cough and a low grade temp. It was up to 101 by midday and I had to decide whether to head to the hospital or not. I decided to give a dose of tylenol (which we normally don't use bc of Alex's liver disease) and so far his temp has stayed in the 100's. He doesn't feel great, but is holding his own. I am so happy we have managed to survive the weekend without having to head to the hospital. I will have to take him to the pediatrician tomorrow as I am sure he has what I do and I needed antibiotics.
We are hoping for a quiet few weeks before we need to head to Houston the first two weeks on April. Hopefully, things will settle down and give us those few weeks of quiet we so desperately need.
Ali
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