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. 

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. 

Complications

Jackson has had some complications since August.  Because of this his infusion he was suppose to get this past Monday has been postponed until we get past this.  Back in beginning of August Jackson got a infection in his upper thigh.  I took him and they gave him 10 days of a antibiotic.  It did clear up.  But then in the end of September it came back worse than it was the first time.  He was given the same antibiotic again for 14 days.  Last week it still wasn't much better so I took him into urgent care one evening and they gave him 2 shots of a different antibiotic and we sat there for awhile to monitor to make sure he didn't have a reaction.  And then we were sent home with another round of the same antibiotic again.  I called the rhematolgist last Friday to discuss if we should even come up for the infusion on Monday.  Jackson's rheumatologist was on vacation but the other one thought we should still go and let Jackson's normal rheumatologist look at him and make a decision and they also fit us in to see a pediactric infection disease doctor there.  Dr. Vehe (rheumatologist) said we should probably hold off on the infusion as it might be like putting gasoline on the fire.  He also informed me that the antibiotic he was interacts with methotrexate by lowering white blood cells to a very low level and the 2 should never be taken together.  When Mike looked up the antibiotic online it clearly states not to take those 2 meds together!  So I am wondering how 3 different doctors and 3 different pharmacists catch this!  Makes me extremely mad as because Jackson is on so many meds I put my trust in these doctors and pharmacist to know what meds cannot be taken with ones hes on daily basis.  We also go over his med list everytime he sees a doctor so they know what meds he is on!  So I guess I will have to be more proactive when they are prescribing a new med.
Monday we saw a pediactric infectious disease doctor, Dr. Sharon.  His main goal is to get this taken care of so that Jackson is not off his remicade too long which will put him at risk for joint and eye flares.  He took him off the old antibiotic and put him on 2 different ones to take everyday for 2 weeks.  We are scheduled to go back to see him on the 20th.  If the infection is not gone they will put a pic line and Jackson will receive iv antibotics here in our hometown.  So we are really hoping we can get him better and avoid the pic line.  However he is vomiting within 10 minutes of taking the new antibiotics so hes not even getting any in his system.  I have a call out to the nurse coordinator at the childrens hospital so well see what to do now.
The older Jackson gets the harder this all becomes for him.  This recent issue has been the worst for him.  He keeps saying things like why does this have to happen to me its not fair.  He even said one day why does everything happen to me, why can't it happen to my sister.  It was easier when he was little and just assumed that this was normal for everyone.  The older he gets the harder it gets for him.  It breaks my heart.

Ear problems and blood work off

Jackson has been having trouble with fluid in his ears and hearing for a few months now.  His rhematolgist wanted the fluid taken care of over a month ago but of course its been a fight with the peditrcian here.  She wanted him on allergy meds first for awhile.  Well he went back in last week for a hearing test and fluid test and guess what theres still fluid!  If only she would have listened to me.  She kept talking down to me like I had no idea what I was talking about and the fluid would be gone.  Unfortunately for her I was right.  So Jackson will be seeing a ENT this Friday to get the fluid removed and possibly his 4th set of tubes!  Dr. Vehe thinks we should dig deeper as to why this keeps happening.  So he did some extra blood test Monday while we were there for Jackson's infusion.  Those tests came back fine however his routine blood work did not.  His albumin levels were low so he is sending some paperwork to Mayo here so he can get further testing on his blood and a urinalysis.  Its always something!
Jackson just turned 7 last Friday.  It is bittersweet for me as I love celebrating my kids birthdays but really feel sad that my kids are growing so fast.  We celebrated the day by going to the Wisconsin state fair.  Jackson had a great time and said it was the best birthday ever!

Eyes and Ears

Last week Jackson had a eye appointment that Mike took him to.  His eyes are improving but his pressures are way up from the steroids despite being on the pressure drops twice a day.  Normal range is 12-22 and Jackson's were 35/36!  So off the pred forte and back to FML.  But everytime we switch to FML the cells get bad.  Its like a bad back and forth game we keep playing.  So today we saw rheumatology and Dr. Vehe said we may just do another increase in the remicade infusions.  Joints are looking good.  The warmth in his knee joints was gone today so the new med, Mobic is helping!  But I had told Dr. Vehe that Jackson just recently had a double ear infection and after 3 days on antibiotics he was still crying in pain and he had a bunch of fluid come out of one ear which I belived was from his ear drum rupturing.  So Mike had brought him back into the doctor who said he was fine and the pain was just from the fluid in his ears.  And one doctor I talked to when I called said he didn't need the antiobitics that ear infections don't need to be treated.  Well Jackson's hearing has been bad since before the ear infection so about 4 weeks now.  Dr. Vehe looked in his ears and said there is still fluid and you can see some damage from where his ear drum burst.  Dr. Vehe was pretty disgusted with the doctors here and said they just don't seem to understand given Jackson's health issues and meds he needs special care and should of been switched to a different antibiotic.  I always say a mother knows best and I knew there was more going on.  So he told me to make a appointment to have his hearing checked so they can see that the fluid is causing him problems and then hopefully we would get a referral to a ENT doctor who can remove the fluid.  Dr. Vehe said be prepared to fight and probably have multiple appointments before someone will listen as they just don't understand Jackson is not a normal healthly child.  So we are scheduled for tomorrow morning for a hearing test and appointment with the ped.  Wish me luck!

Back on track

We had a infusion scheduled for last Monday.  We had switched insurances effective April 1st.  Mike and I had both called prior to this and made sure infusions were covered and we would be set.  We were told they would be covered and we would be ready for Mondays appointment.  Well Thursday the childrens hospital billing department sent of the paperwork to verify coverage with the insurance company and they were told we needed a prior authoraztion which could take anywhere from a few days to a few weeks or so.  Since this was Thursday afternoon by this point we were told we had to cancel his infusion for Monday as it was not likely the prior authoraztion would be approved by then. I had called the insurance back and argued that they said everything was set and I was told I must of been misinformed.  I was very angry told them he has been on this med for 3 years and this med has made so he can live as a normal child and run and play.  It isn't fair for a 6 year old boy to not be able to run and play and be normal because of some stupid insurance not wanting to pay for something he needs for his quality of life!   We still went Monday for the eye appointment and kept our appointment with the rhematolgist.  His eyes are improving not cell free yet but improving.  Eye doctor was pretty concerned about being off the remicade and upped his steroids in his eyes while he is off the remicade.  The rhematologist said his knees still have warmth.  Jackson has a lot of pain in his legs lately that they said is from his hypermobility.  He put him on a new med for pain called Mobic.  So hopefully it helps.  After the appointments we stopped at the Minnesota Zoo.  The kids had fun but halfway through Jackson was having a really hard time walking and needed the stroller.  His body gets very tired easily.  Saturday he had t ball practice and by the time he got home he tried to play outside with the neighbor but just couldn't handle it and had to come in to rest.
The Children's Hospital called this past Thursday and got the approval from the insurance to go back on the remicade infusion.  So we head back tomorrow morning to get the infusion.  Hopefully being a week behind schedule won't hurt!
Jackson finished swimming lessons last week and for the first time he can now swim.  Not great but he can swim.  I will be putting him in next level to help him get better.  He also went off the diving board for the first time!  He was so proud and did it several times!  He also just started tball and has his first game next week!

More pain lately

Last month Jackson had a appointment with Dr. Vehe (rheumy), Dr. Bothun (eyes) and a infusion.  His neurologist appointment was cancelled that day due to doctor having a emergency.  Overall a disappointing day.  We started with Dr. Bothun to check eyes.  Both eyes still have cells and one of his eyes is worse than before.  So we added another drop, one they have been avoiding because it shoots his pressures in his eyes way up but we are desperate at this point to quiet the eyes.  Next we saw Dr. Vehe for the joints.  He said his knees felt warm and was worried there may be a flare starting.  But since infusion was schedueled that day we were hoping that would quiet it down.  He did complain of his knees for a week afterwards but now this week he has been complaining of his left legging hurting.  He did not sleep well last night and I think its because of his pain.
Otherwise he has been doing well and stayed fairly healthy this winter compared to last.  He just started swimming lessons and will start tball in the next couple of weeks.  Hopefully we can get his pain under control by then so he can enjoy playing!