Trey's headaches continue on. It seems to be the problem he had about a year ago where his body makes too much spinal fluid, putting pressure on his head and causing a migraine. A nonstop never-ending migraine. The only relief is when he is laying down, and sometimes that is not enough.
The meds (Acetozolomide ) the Doctor put him on, were not working. Even after visiting the neurologist and she doubled them and added one (Depakote) Trey still found no relief. We were hoping the meds would solve the problem so we wouldn't have to get another Spinal Tap/Lumbar puncture. The Dr. agreed it was time. After taking the meds for 24 hrs he should start to feel better. They told us to just go to the ER for a lumbar puncture. If we waited for the hospital to schedule one it would be a few weeks out. We have to get this kid feeling better. He has already missed about a month of school and we are only six weeks in.
On Wednesday we took him in for a spinal tap. The ER Spinal Tap didn't go as smoothly as the scheduled one at the hospital last year. The good thing about the ER was they were much faster and more efficient get Trey back to do the Spinal Tap rather than the scheduled one. Which should have been the other way around. There was so much waiting and waiting for hours even though the prior one was scheduled.
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| Trey with his ET finger/heart rate monitor |
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| Trey on Versed, he was feeling good. |
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| recovery |
The main drawback of the ER was they didn't put him under general anesthesia. I didn't let Trey eat because I wanted his body to be ready for the anesthesia. Well, that didn't happen. They gave him a dose of Versed which definitely made him feel good/different but I don't think it was enough. He did say some pretty funny stuff while he was on the drug. He talked about having one brain cell and eating a red lego. Something about how now he finally understands calculus. He was pretty loopy, I have some video He was already very anxious and terrified just to get the IV needle, he was not prepared to get a long needle stabbed into his spine. I left the room, but it sounds like it was kind of traumatic. Two big guys had to hold him down, while the Doctor did the procedure. They had to give me more Versed because he was so anxious. The doctor said he took his spinal pressure down from 31 to 16. Under 20 is normal so that was a significant decrease.
We were hoping this would do the trick and he would immediately start to feel better. Not so much. Trey didn't notice much change the next few days, then by Saturday, he said he felt worse than ever. Obviously, nothing was working. I called the neurologist Saturday evening. She said Trey needed to go back to the ER. Likely the spinal tap didn't heal up correctly and he was likely still leaking fluid. He would need to go back for a blood patch, which is kind of the reverse of a spinal tap. They take blood from his arm, then plug the hole with it where they did the original puncture. It sounds more risky and painful. Trey was not excited about going back. I convinced him to go so he could start feeling better sooner.
We arrived at the ER at about 6:15 we went back pretty soon but then we waited and waited. I decided there is no urgency at the emergency until you are actively dying. After several hours of waiting around, nurses and PAs talking to Dr. they decided they wanted to avoid the blood patch if possible and they wanted to try all other routes. Drs wanted him to try some more meds and admit him to the hospital and observe him through the night. Then they would do the blood patch in the morning. They loaded Trey up on more meds, which I was doubtful would help and so was the PA. At about 10:00 they gave trey 300 mg of caffeine. I didn't think bedtime was the best time to load Trey up with that much caffeine, but whatever. He had no place else to go. He took the meds more and more waiting. At about 2:00 a.m. they finally got him admitted and moved us to his room. What do you know Trey said his headache was much better. He walked in saying his headache was an 8 on a 10 scale and now it was about a 2-3. Amazing, I seriously didn't think that would work. Trey was up most the night, he said he finally felt sleepy about 3:00 a.m. It didn't help that we heard some kid down the hall wailing all night.
Morning came along with a parade of Drs and nurses coming through. Ultimately we decided to scrap the blood patch for now. Trey had finally turned a corner and was feeling better. I guess my grandma was always right when she would say "drink a coke, you will feel better". Trey was excited to avoid more needles and happy to go home.
We arrived home about 11:15 Sunday morning. Trey was excited to tell his brothers that he was given the equivalent of a "Bang Energy Drink" to cure the headache. He went to bed and slept the rest of the day. He needs another jolt of caffeine, but I'm afraid it will keep him up all night again.
This week I went to listen to a Holocaust survivor speak about his experience. They wanted all the youth in the ward to attend, so I got to go be a driver. It was very interesting, but also awful. I think hearing about the holocaust is important, but also one of the most awful depressing things that ever happened. I don't like watching movies or even going to Holocaust museums. This man was 94 years old and lived in Poland at the time. He was 15 when his family was taken by Germans. He was transferred to about 4 different camps and a miracle he and his sister survived. The only ones from their family of 7 to survive. I have decided everything you hear about the holocaust is 100% awful just different people and different experiences. I'm glad he had a successful life after the war, he has lived in the US for several years and had a successful career. He feels it is important to tell his story so people remember what happened. I don't know how he can get up and tell those stories over and over. They were awful.
This week was my friend Jillian's birthday. She is a big Harry Potter fan, I made this matchbox car, look like the Wesley car from Harry potter and gave her this Harry Potter "garden" she loved it.