Over a month has passed since my last update – the time slips away. Here is what has happened.
Bailynn’s back has still not recovered fully to what it looked like before the trauma, whatever that was, though I can not dismiss its vast improvement from June. She finished all her rounds of antibiotics, got out of the house, went swimming, and we started to live life again, though it has not been all sunshine and daisies. After her stint on antibiotics one would believe that an UTI would be an unlikely occurrence, well no! Bailynn was treated for an UTI shortly after her last round of antibiotics for the back and then we attempted to put her back on her medication for Tuberous Sclerosis. Attempted – key word. The first day I gave Bai the medication I was very excited to get her back into the routine of it. Bailynn needs this medication for her tumor growth prevention and it helps (slightly) with her seizure control and let me tell you, we have had a upsurge of seizures lately. Ugly ferocious seizures!
Attempt 1 – Bai runs an 102.5 fever a few hours after the medication is administered. I give her tylenol, a shower, and try to keep her cool. This medication explicitly states that if she runs a 101 fever or higher, we are to take her to the ER. Well, I knew the local ER would just tell me to take her elsewhere and I knew that after one dose that the need to rush her to the hospital was slim. She didn’t act lethargic, dizzy, or nauseous, so we stopped the med. No fever the next day and she seemed fine. So, I am excellent at coming up with worst case scenarios in my head, I tried to not go there. My logic at this point was that Bai must have a cold or bug and that triggered the fever. We would hold the med a few days and try again.
Attempt 2 – Bai runs an 102 fever a few hours after the medication is administered. I run through the same routine as before and call Cincinnati Children’s Hospital. I wait a few days and call Bai’s local doctor due to my lack of patience. This is where things start to get a little scary, but end up not being so. It is first thought that Bai may have a blood infection or infection in her back, like previously thought, Blood work and Blood culture are ordered. Both come back fine. Urine Culture is ran – this is were we find the issue – another UTI. Another round of antibiotics. We are currently on the last day of antibiotics and then another urine culture will be done to make sure the UTI if fully gone.
Attempt 3 will happen next week if urine comes back clean. We will see how it goes. Cincinnati wants a CT done on Bai’s back to just see what is going on. I don’t know if this is truly necessary. Without the ability to do contrast or MRI’s, imagining is limited and in some cases, pointless.
So there is our month, hope yours was as fun 😉 – really I wish everyone else out there better days than some of ours. Dealing with a lot of this on a day to day basis is stressful beyond belief. My mind is tired. My body is tired. Everyday is marvelous however – it is, because I have an amazing bunch of people on my team!
Look for my next post, coming soon…….I’m not speical