We enjoyed the few days we had at home. It was peaceful and uneventful. Then on our regular clinic visit (I'm summarizing) he was presenting with neck swelling and they wanted to "do some testing " and " watch him overnight ." Well......the swelling got worse and became accompanied by a rash, and then a fever and rigors. Long story short we've been inpatient again for the last eight days and on isolation for the last six. They want to eliminate the possibility of the mumps virus, which causes them to wait on the state department of health to release him from isolation. They don't think it's the mumps. In fact a skin biopsy says (the rash) is a reaction to a medication. They are acting out of an abundance of caution to protect his new immune system as well as the other kids on the floor.   We are ready to go home! But we are both in good spirits and thankful for such amazing health care.   prayers and positive vibes arew welcome. christina

Things can change quickly during the first 100 days post transplant. I ran to the grocery store once and came back to a nose bleed exacerbated by low platelets. He was so tired and weak before the bleed that it took everything in him to handle it during the ten minutes I was gone! So, when they say 24/7 care, they mean it. Fever and pain can start in the blink of an eye, so keeping an eye on him is paramount. We were readmitted during our last clinic visit. Besides the generalized pain and fatigue he was feeling, he started to get rigors and chills about 40 minutes into his platelet transfusion. The infusion was stopped immediately and sent to the lab for reaction testing. They took some blood to run a blood culture to see if there was an infection. This only takes 24 to 48 hours. No infection was found and we were released. He's been eating well the last four or five days and is up 2lbs from his post transplant weight but still down ten from his pre transplant weight. The nutritionist will be evaluating him again on Monday to see if the feeding tube can be removed.  He had to get blood and platelets while we were inpatient this time as well. So we are quarantined at home like it was March 2020.  I can't think of anything else to write.

No blood products needed at clinic visit this week so far. His magnesium is low and he may need to get it bumped up through his IV at tomorrows visit, but he's eating a little better so I'm hoping it will go up naturally.  Engraftment is still going on slowly with dad's cells now at 83%. Trevor is doing excellent on medication compliance. Prior to this, it was hit and miss. He hated it. Now he can down twenty pills at once. He still hates it but it's over quickly and he understands what's at stake; liver damage, GVHD, seizures, stroke etc. So he takes a ton of pills three times a day, with little to no complaints. I received some much needed support from the inpatient pharmacist before we were discharged, she gave me a custom cooler/pharmacy bag with so many useful goodies to help me organize and administer his medicine. This was infinitely helpful to me and priceless.  Sunday evening, he got to see some of his homeschool friends! We stayed outside and everyone wore a mask. They played on the trampoline for about ten minutes until he got tired, then sat and talked. That was an amazing day for him and he's so greatful to have such great friends.  Due to his immune system being compromised, he's not able to go to an outpatient physical therapy office, so his transplant team includes a physical therapist that works with him once per week at his clinic visit. They did an initial evaluation upon admittance, before transplant, plus saw him at least twice a week while inpatient. Upon discharge, they did another evaluation and compared it to pre transplant. His strength is impressive( dad said it's the genes) yet his endurance is low. So that's our goal until day 100 is to keep his strength up and to work on his endurance.

We were released on Monday. June 6, which was day 35. It was a late afternoon, early evening release that almost didn't happen. Sunday night he had a pain episode that was reminiscent of a Sickle Cell pain crisis. He was screaming and writhing and complaining of back pain. They got his pain under control within about thirty minutes or so, but, experiencing pain like that is exhausting. It's as of he ran a marathon and worked a twelve hours shift right after. His little body was so tired but his anxious mind wouldn't let him sleep. He kept saying he wasn't ready to go home and that he wanted to stay in the hospital. He literally sat up in the bed all night distracting himself with his phone. Believe me if he could have slept he would have the boy was beat. He finally went to sleep after they came in for his morning weight, which as about 4:30am. Surprisingly, when the doctors rounded, they were still planning on discharging us! However, after consulting with his dad and my mom, I decided to tell them we would stay one more night. However, after seeing how hard and with such vigor he was sleeping, finally, I just couldn't do it. I knew that this little body needed some reeeeeeaaaaallll sleep. Like, for a day.....no interruptions for vitals every three to four hours, no beeps, no random lights, just peaceful sleep. So as he began to stir and wake a little, I sat down and told him we were leaving. He could see I meant it and there was no way around it, so he finally agreed.  We got home that night and he was a little anxious, but he slept well and woke up bright eyed and bushy tailed ready to take on a productive day of video game play. All he had to do was get his morning meds out of the way, which ended up ruining his game play plans because someone gave him twice the dosage amount of  a schedule III appetite enhancing drug for chemo patients (basically weed) on accident, sending him high into the clouds and off to sleep. Yes, the some one is me and yes I felt horrible, at first. Once it kicked in, he started telling me how he was feeling and that his " brain wouldn't give him peace" and how " we are just tiny specs in the universe but we still do activities " oh, and the room was spinning. Once I was on the phone with the hospital to report the symptoms, I heard myself speaking and it clicked, he's high! I was mortified! I immediately pulled out the med list and saw that he was getting 2, 2.5 mg pills in the hospital ( we had been " rooming in" for a week while still inpatient, which means I administered all his meds during that time and I got used to it) but upon discharge he was only supposed to take one pill because he was prescribed 5mg pills. It was an honest mistake, and he will never forget me breaking the news to him....I started out with " First off, I love you very much and we all make mistakes" ......he eventually understood and went on explaining the mysteries of the universe to me as he giggled and ate Hershey bars inevitably drifting off to a very deep, very long nap. We go to clinic in Nashville at Vanderbilt, 3 times per week. He needed a transfusion on our first visit due to his hemoglobin being low and he needed platelets on our second visit which was much quicker. As we get closer to our 100 days, he will need less and less blood products to eventually needing NONE, soon thereafter. This is something that we both look forward to.  At home I've got all his medical supplies (heparin syringes, line flushes, Hickman line dressing kits, feeding pump, formula for feeding pumpand feeding pump bags) all nicely organized in his bedside drawers for easy access. I decided to keep the feeding tube cause he wasn't really ever eating consistently and things still just don't taste right to him right now. So we do feeds overnight to maintain his nutrition and hydration.   That's it for now.

There are many idiosyncrasies with long-term hospital stays, and rounds are one of them. You're basically welcoming a team of highly trained specialist into your home not really knowing when they will show up. Dr. Connelly did rounds today. He's our favorite not only cause he's a genius, but because he generally doesn't round before 9:30 or 10. ;) While his IQ and his penchant for later rounds may be mutually exclusive, they are of equal importance and make us love him that much more! Today's major topic was fever. His fever has spiked overnight the last three nights in a row. This has caused some restless nights and a change in mood and appetite. This is all completely normal and the team is used to dealing with this while waiting on engraftment. However, fever is dangerous due to his white blood cell count, so they do everything they can to diagnose and treat.  I said all that to say, we are not going home today. He back tracked on eating and hydrating himself this weekend and he has had to get platelets every day due to his counts. We will be working on reversing all of this for the remainder of the week and into the weekend. They should be making a decision to send us home or not at the beginning of next week.  Thanks to everyone for your prayers and support.   Christina  

A fever is the last thing I wanted to hear about tonight! Especially after preparing to go home! Right now it's at 101.1 which is not good. Last time he was febrile, which was day 1 or 2, they took blood for a culture, which eventually came back with no growth. That process took several days and we were supposed to go home in twodays from today. I'm actually thankful this is happening here and when we aren't 45 minutes away.  This is a late night half sleep post. I'll update when I know more or when the sun comes out. Update. The fever may have put us back a few days to a week. He hasn't felt like eating so far today and his weight went down overnight. They will be restarting his feeding tube feeds tonight and they started him on IV antibiotics and are watching the culture for growth. No more going home on Tuesday. We are taking a few small steps backwards, but they are just precautionary.  Side note: I discovered Hattie B's. By discover, I mean in the most Columbus way possible. The line to sit down and eat was literally wrapped around the building to where people were standing in the middle of the street, stricken with hunger like zombies. So then I was like. Oh yeah Hattie B's! So I went and picked up a to go order and the have banana pudding ( which he relentlessly begs for me to cook from scratch continuously) so I got him some to try and a plate of wings. He says, the banana pudding is the third best in the world (Nana's, mine and Hattie's) and I say the rest of the food is FIRE. Also, we tried Crumble cookies which he didn't care for but I thought was pretty good. Back to hospital food for now.    Thanks everyone    

Woke up bright and early to the most massive nose bleed! It lasted for a good 2 hours and we used every towel available to us to soak it up. He is low on platelets, of course, due to everything. Platelets help the blood clot at the sight of injury, so not having enough of them made his nose bleed epic. Luckily the nurses are used to this level of bleed and was able to get him some platelets quickly. The ear nose and throat team came in like gang busters, 3 deep and lots of equipment. 

Generally speaking, this is the day where the bone marrow has found it's way to it's dedicated spot inside of the body. The new bone marrow begins to take over the work of the old marrow making his neutrophil count go up. Neutrophils are the first white blood cells to respond to an infection.  This has not happened yet. We are still waiting. He is healthy. In good spirits and hopefully safe from infection. He is not allowed to leave the sixth floor and social distancing is at play for any visitors.  They will be giving him a medicine today which helps his neutrophils get started moving. We will see what happens then. Until then, thank God for Fortnite, a supportive family/friend network and an A plus care team.   

I can't even believe that we have come this far so quickly! Even though we are stuck in the hospital, we have stayed busy so time seems to be moving by quickly.  Every 3 or 4 days I rearrange the furniture in the room (couch and chair). It's amazing how big of a difference this makes! I also bring specific items to the forefront ( i.e pictures from friends, cards from loved ones) which brightens the room in a special way. We have a count down calendar, made by a friend, which tracks the time we've been here and let him know when he should start feeling better. I have been practicing my newly found nursing skills by stopping and starting his feeds, changing his dressing and administering his meds. This is all done under a watchful eye of his nurse(s). The more I do it, the more I feel confident about it. Hopefully, this will help make our transition home easier.  

The past few days since the last post have been up and down. He is being monitored very closely and being given a ton of medication to prevent things like Graft vs Host Disease (GVHD),    GVHD is a condition that occurs when donor bone marrow or HCT attack the recipient. This  can occur at any time after a transplant. However, it's more common after the marrow has started to make healthy cells. The condition can be mild or severe. When I first started looking at transplant, 13 years ago when he was an infant, GVHD scared the crap out of me. It seemed to be a lot more severe and common, making transplant look not as desirable. Nowadays, however, after years of experience and information sharing across the globe, safety protocols have been put in place  making GVHD less of a threat during and after transplant. Basically the benefits of transplant, out weigh the risk for our family. Dr. Debaun, who is an internationally recognized physician-scientist whose advocacy and research have resulted in fundamental advances in medical care of children and adults with sickle cell disease (SCD), came to visit us! This was a huge and welcome surprise! I attended a one-on-one class led by a registered nurse with 20 plus years experience, on caring for Trevor's feeding tube and Hickman line once we leave the hospital. I learned how to remove and  insert a new tube into his nose if needed, as well as how to administer feeds and give medicine through the tube. She also gave me tips and tricks on how not to get the tube clogged, which is evidently a thing. With the Hickman line, she taught me the steps on how to keep your area completely sterile and how to change the dressing, flush the line and change out the claves.  Trevor has been spending most days playing RUST on PlayStation. He excercises by walking the unit and getting on the stationary bike. His friends at home are a big support too, playing Roblox and other online, multiplayer games.