Saturday, July 25, 2015

Jackson's ICU Stay

My last blog had stopped at when Jackson had been in the er for the second day in row.  He had been diagnosed with lyme disease and got a iv of antibiotics, fluids and morphine.  Then he was sent home.  He was still in lots of pain.   Everytime I tried to give him pain meds, Zofran and his antibiotics he would vomit.  He was up most of the night.  So the next morning  (Tuesday ) we took him back into emergency.   They again hooked him back up to a iv.  They did blood work again and his white blood and crp was extremely elevated.   So at that point they decided to do a spinal tap and ct scan.  Results were that the lyme had gotten into his nervous system and in the spinal fluid and causing swelling.  They call it neuro lyme or lyme meningitis.   It's symptoms mimic meningitis but is not the same as the one you hear of in the public and is not contiguous.   He was then admitted to icu.  He continued to receive iv antibiotics, pain meds and fluids.   He was in the icu for 3 days and then discharged with a picc line and receives antibiotics daily through that at home.  He lost a total of 6lbs, which may not seem like a lot but he is a very small boy to begin with.   I have never seen him so sick in my life and in so much pain.  The spinal tap was very emotional for Mike and I.  Jackson got a concious sedation so he couldn't move but he could see and hear.  And Mike and I both got to stay in the room but it was extremely hard to watch.  Looking back on the whole ordeal I held up pretty well during it but now looking back makes me extremely emotional that he had to endure all that.  He still has the picc line.  He is looking a lot better and has gained 4lbs back.  He is still very tired all time and spends a lot of time laying around.   But hoping soon he will get his energy and back to his normal self.  Hopefully this whole ordeal is behind us.  I never want to experience this again. 

Monday, July 13, 2015

Not so great birthday

It was Jackson's birthday Saturday but unfortunately it was not a great birthday.  Last week on Thursday Jackson got a migraine we alternated tylneol and ibuprofen for 3 days.  He would improve at times for a few hours but then right back to pain.  Friday night he came into our room crying in the middle of the night because of the migraine.  On Saturday he was feeling a little better enough to go to chaos to celebrate his birthday and Fuji for dinner.  Later Saturday night he started getting worse, I was up most of the night with him.  He also vomited a few times throughout Saturday.   Sunday afternoon I took him to the er because he couldn't stop crying from the pain and was becoming very lathergic.  They gave him iv fluids, oxygen, anti nausea meds and pain meds and then discharged him.  His pain was still not any better Sunday night and he was again up most of the night and extremely lethargic.  So this morning Mike brought him back to the hospital.  They ran some blood work and said he has lyme disease and because he immunocompromised his body just couldn't fight it so it made him very sick.  They kept him for most of the today and gave him iv fluids and morphine and then antibotics through the iv.  He is now home and resting and will be antibotics for 2 weeks to a month.  He is still in a lot of pain and very lethargic.  Hopefully he will improve soon.
His uveitis however seems to be improving.  Last eye exam showed very minimal inflammation so we will be decreasing steroid drops over the next few weeks.  His pressures were extremely high a month ago and those are now back down so that is great.