Last year when Bruce took the job in San Antonio and we thought about moving, we ultimately decided we could not move because of our support system here. Never have I felt that love and support more then this past week. Thank you to our "village". The love, the prayers, the meals, the help with Maddy, decorating our room, so many texts and emails. It is felt...All of it and it means so much.
When we started putting together the puzzle pieces on Tuesday we weren't even sure that we could get everyone on the same page. Tuesday evening surgery came by and said we were a go, but that it would be Thursday or Friday. Later that evening they came in to let us know that surgery would be Wednesday at 2:00. Yesterday morning they came in at 8:45 to tell us that they would come for us at 10! From there it was a scramble to make sure everything was ready and to meet with Alex's surgeon. Alex was really scared, but did a great job. He was wheeled into the OR around 11 and we got back to our room around 4:30. Surgery went well, but it was a very long day.
He is having some pain, but is on a pain pump and is doing well. We will most likely be in the hospital until mid next week. I will try and update again soon.
Alex and Maddy
Thursday, December 14, 2017
Tuesday, December 12, 2017
Hospital Update on Alex
I am trying to get out a quick update on what has happened and where we are at this point.
Saturday night Alex woke up around 10:00 and said he wasn't feeling well. We checked a temp and it was normal. He took some medication for nausea and went back to sleep. He woke me up at midnight still not feeling well. He still did not have a fever so I gave him medicine for stomach pain and sent him back to bed again. He woke me up just before 1:00 saying he felt worse and his temperature was 103.4. We quickly headed in to the ER.
On Sunday right before lunch his blood cultures came back growing the same bacteria that he has grown every other time. A quick explanation for all the people who have asked...Alex's intestines especially his colon are extremely damaged from years of not working correctly. The continuous horrific distention from gas has caused the lining of his intestines to stretch to the point that it is leaking into his bloodstream. At this point the only solution is the major GI Surgery that we were planning to do in January or February.
Alex ran fevers until Monday morning, but has been fever free since then. He is being treated with the only two antibiotics that this bacteria is sensitive to. There has been much discussion about trying to leave his port in place and treat with the antibiotics or pull his port finish his course of antibiotics to be sure we have cleared the infection and then replace his port. Infectious Disease feels strongly that removing his port is the safest course long term. The fear of leaving this port and trying to treat is that if we don't clear it we are allowing the bacteria to become resistant to the only two medications that we can use.
Here is the catch...putting in a new port makes no sense until the GI surgery is done because we will just infect the new port as well. So we are trying to get all the specialties here to talk and do one surgery later this week to include the GI surgery and remove his port. Then we would finish the antibiotics and replace his port after the holidays.
Alex is doing pretty well emotionally today. He is feeling as ready as he can to do the major surgery. He is scared, but doing a great job talking about his feelings.
Please continue to pray for Alex, physically and emotionally, pray for the doctors to coordinate and make this plan work, pray for Maddy as our hospitalizations are hard on her, pray for me as I am so tired.
Saturday night Alex woke up around 10:00 and said he wasn't feeling well. We checked a temp and it was normal. He took some medication for nausea and went back to sleep. He woke me up at midnight still not feeling well. He still did not have a fever so I gave him medicine for stomach pain and sent him back to bed again. He woke me up just before 1:00 saying he felt worse and his temperature was 103.4. We quickly headed in to the ER.
On Sunday right before lunch his blood cultures came back growing the same bacteria that he has grown every other time. A quick explanation for all the people who have asked...Alex's intestines especially his colon are extremely damaged from years of not working correctly. The continuous horrific distention from gas has caused the lining of his intestines to stretch to the point that it is leaking into his bloodstream. At this point the only solution is the major GI Surgery that we were planning to do in January or February.
Alex ran fevers until Monday morning, but has been fever free since then. He is being treated with the only two antibiotics that this bacteria is sensitive to. There has been much discussion about trying to leave his port in place and treat with the antibiotics or pull his port finish his course of antibiotics to be sure we have cleared the infection and then replace his port. Infectious Disease feels strongly that removing his port is the safest course long term. The fear of leaving this port and trying to treat is that if we don't clear it we are allowing the bacteria to become resistant to the only two medications that we can use.
Here is the catch...putting in a new port makes no sense until the GI surgery is done because we will just infect the new port as well. So we are trying to get all the specialties here to talk and do one surgery later this week to include the GI surgery and remove his port. Then we would finish the antibiotics and replace his port after the holidays.
Alex is doing pretty well emotionally today. He is feeling as ready as he can to do the major surgery. He is scared, but doing a great job talking about his feelings.
Please continue to pray for Alex, physically and emotionally, pray for the doctors to coordinate and make this plan work, pray for Maddy as our hospitalizations are hard on her, pray for me as I am so tired.
Thursday, December 7, 2017
A Really Rough Week!
We have had an incredibly rough week. Last Monday, Bruce was informed that his company had drastically over forecast their sales predictions for 2017. Consequently they reduced the workforce by one third. Bruce was a casualty of those layoffs. It was completely unexpected. It has left us scrambling. There is never a good time to face a lay off, but December is brutal and having no warning adds insult to injury. Bruce is searching and we are hopeful that he will find employment quickly.
Last Wednesday, Maddy had an endoscopy and colonoscopy to investigate her stomach pain and vomiting. Despite doing a 24 hour clean out and receiving an enema she never had a bowel movement. Dr. O is confident that her slow motility and constipation is causing her pain and making her reflux worse. We are working hard to get her constipation under control so she can feel better.
Alex's acting class had their spring recital Friday and Saturday. Alex was amazing. It is so fun to watch him perform with so much confidence and really enjoy himself. By Saturday he was not feeling great, but he still gave a good performance. By Saturday night he was really starting to decline. His stomach was hugely distended and he was in quite a bit of pain. It continued to get worse all through Sunday to the point we were considering going to the ER. We knew there wasn't really anything they could do so we stuck it out at home. Luckily, Dr. O had a cancellation on his Wednesday procedure schedule and he was able to get Alex in to decompress his intestines and buy us more time before his surgery. Alex is feeling much better today!
Please continue to pray for our family. Pray for Bruce to find employment. Pray for Alex to feel better physically and to come to terms emotionally with his upcoming surgery. Pray for Maddy to continue to stay healthy and thriving. Pray for me to be there for everyone in the way that they need me.
Ali
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Last Wednesday, Maddy had an endoscopy and colonoscopy to investigate her stomach pain and vomiting. Despite doing a 24 hour clean out and receiving an enema she never had a bowel movement. Dr. O is confident that her slow motility and constipation is causing her pain and making her reflux worse. We are working hard to get her constipation under control so she can feel better.
Alex's acting class had their spring recital Friday and Saturday. Alex was amazing. It is so fun to watch him perform with so much confidence and really enjoy himself. By Saturday he was not feeling great, but he still gave a good performance. By Saturday night he was really starting to decline. His stomach was hugely distended and he was in quite a bit of pain. It continued to get worse all through Sunday to the point we were considering going to the ER. We knew there wasn't really anything they could do so we stuck it out at home. Luckily, Dr. O had a cancellation on his Wednesday procedure schedule and he was able to get Alex in to decompress his intestines and buy us more time before his surgery. Alex is feeling much better today!
Please continue to pray for our family. Pray for Bruce to find employment. Pray for Alex to feel better physically and to come to terms emotionally with his upcoming surgery. Pray for Maddy to continue to stay healthy and thriving. Pray for me to be there for everyone in the way that they need me.
Ali
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| We are so blessed by this incredible nurse. She is so much more then just a nurse. She truly is family and we all love her! |
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| Alex going to his youth group progressive dinner. |
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