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.

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

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!

Alex going to his youth group progressive dinner.

.

Long Overdue Update

I have been trying for a month to find the time and sit down to get a blog post done. The fates have not been kind, but I am finally doing it tonight!

Maddy had such an awesome Birthday and Halloween. This was the first year she really got that Halloween was her birthday and she loved that the whole day was full of celebrations. She started the day with a Costume Parade at School. Then we brought donuts for her class to enjoy.

After lunch her class had a halloween party with crafts and snacks. We left school and headed to therapy for trick or treating. We quickly opened presents before it was time to hand out candy. She was exhausted by bedtime! 

On November 4th, Alex participated in Extra Life for the Second year in a row. It is a day he looks forward to all year. It is amazing to be able to do something you love for a good cause. Thanks to the generosity of our friends and family, Alex was able to raise over $2000 for Cook Children's Hospital!

The rest of our month has been pretty busy medically. Alex has made 3 trips to the ER, 2 of them winding up in admissions. Maddy has been sick twice and has had an increase in her reflux and we've had a host of doctors appointments. 

For Alex, the problems we are having all stem from his GI system. His GI system has been cruddy for years, but starting in January we saw a decline in function leaving him with horrendous distention, increased nausea and relentless pain. His GI function has declined to the point that he has now had two episodes of sepsis (serious bloodstream infection) caused by his gut leaking bacteria into his bloodstream. We have tried as many interventions as we can and are at a crossroads. We have decided that the only option is to have a pretty major surgery to try and alleviate his symptoms and the infections. It is not a decision we have reached lightly. Alex will have surgery after the first of the year (probably February). In the meantime, we are going to do a procedure to try and offer some short term relief. 

Maddy has had an easier time, but she hasn't had a great month either. She has had two colds and has been vomiting on a regular basis. We thought she had a stomach bug, but at this point we believe it is just reflux as it has been going on for weeks, and almost always happens when she is lying down. She will be having an endoscopy and colonoscopy on Wednesday to try and see if there is any signs of what could be causing this. She has also been complaining of daily stomach pain for a few months. 

Alex has not been able to participate in most of his activities, but he has managed to stay in acting. He has his performance this weekend and I am praying he feels well enough to enjoy it after all of his hard work. 

Maddy continues to thrive in school and dance. She hates to miss either one! I was sad to miss two special events while Alex was in the hospital, but was grateful for friends and her awesome teachers who took pictures and kept me up to date!

Maddy loves to help me cook!

Crazy girl!

Alex "riding" Zoey

Hanging out at the Hospital

Best Visitor

True Love

So happy to be together

We had a really quiet Thanksgiving. Dad was supposed to come visit, but because Alex was in the hospital and we weren't sure when we would be discharged, he cancelled his trip.

Baking on Thanksgiving

Best part...licking the bowl!

Today we went to get our Christmas tree. It was good for Alex to get out, but he only lasted a short time before he wasn't feeling great again.

Please continue to lift us up in prayer as we try and help Alex both physically and emotionally overt he next several months.

Ali

Details on Hospitalizations for my records... Alex went to ER on Sunday, November 5th, but was sent home from ER. Back to the ER on November 9th with 101.4 fever and cold symptoms (Maddy also had a cold). Discharged the next morning to make it to a pain team appointment. All cultures were negative. Back to ER on November 16th. Fever of 104.1. Admitted and blood cultures grew out in less then 12 hours. Inpatient until November 21st.