Hard reality of Immune suppression

Monday morning Alex woke with a fever. This was her first fever since she began the Sirolimus. Because of her immune-suppressed condition due to the medication we had to take her to see her doctors at Vanderbilt to be evaluated. It ended up being five hours at the doctor because she needed iv medication, blood is drawn, x-rays, ultrasound of her leg, and saw two of her specialists. When a little one is sick they just want to be home snuggled on the couch or in mamas arms, sitting at the doctor, being poked and prodded, is really not where they want to be. It was a hard day for her and for me and hard for the other kids because once again I was gone and they had to get their school work done and handle everything else.

I really can't brag on these kids enough. They have picked up so many pieces and for the most part, they do it with a good attitude. We have learned to have some really good conversations and ask them hard questions to give them the opportunity to express their frustrations and heartache. Early on we realized they didn't feel like they could express their struggles because they didn't want to put anything else on us. It took a while to figure out how to communicate well with one another.

Thankfully all her blood work came back negative for bacterial infection, x-rays did not show any new damage to the leg, and ultrasound did not show anything remarkable. She had started complaining of pain in her lower leg, which has never been a problem so they wanted to make sure there was nothing else going on there. We were thankful to get all of these results back later in the week. She and I were happy to get back home that evening and not to have to sit in too much traffic getting home but she was very upset that evening because she was exhausted. By Tuesday afternoon she was feeling much better but we stayed home and rested for the day.

Wednesday we had more appointments so back to Vanderbilt we went. My dear friend, Rebekah, watched Boone for me so I could spend the day at the doctor with Alex and the other kids could get their school work done and have a little break from babysitting. Between appointments, we were able to have some fun. We met Mr. Randy Travis and his wife, Mary. We also met Mr. Ben Fuller, who played a couple of Mr. Travis's songs for the Vanderbilt patients and their families. It was a good time. She loves the new shirt they gave her. After that part of the event was over the Vanderbilt staff set up a space exhibit and took her from station to station to learn some things, play games, and make some crafts. She had a great time and it really changed her attitude about the whole day. When she found out we had to head back to Vanderbilt for more doctors she was not happy about it and was in a pretty foul mood. After all of this fun her attitude changed, she was having fun, and she was happy the rest of the day. This is one of the reasons I am most thankful for Vanderbilt. They really do go above and beyond to make the kids smile.

The first appointment was fitting for a custom clamshell cast so she has more stability but can also be more active with less risk of further injury. She chose a pattern of unicorns and ice cream cones for the pattern. It will be a few weeks before it arrives but she is excited about getting it.

The next appointment was with the Vascular Malformation Clinic. We met with eleven different doctors in several groups, had a good conversation with our primary doctor, but still have a lot of unknowns and confusion. Their main concern right now is trying to understand why her left leg is going icy cold but even with all of these doctors, they have yet to figure that out. This is not something they typically see associated with this disease. The doctor did finally take her off of the antibiotic she was on each weekend because she has had some really scary reactions to it. Weekends have been very hard with her since starting it and we are happy to not have to deal with those issues anymore. Of course, now we need to be more cautious because she is more susceptible. So many things to consider and always new thoughts, questions, and items added to the we just don't know list. We have great doctors who do genuinely care for her and that has been a huge blessing. We are hoping to continue to gain more knowledge and to soon have a firm plan for her care. Right now we are still in the learning and weighing pros and cons stage.

Please continue to pray with us that we would be given direction for who to talk to and what questions to ask and that we would have clarity and peace moving forward. Pray for Alex to stay well and to be able to handle the frustrations well.