So I'll admit, I'm not a great blogger! Seems just when things get stable and I think I can do something in a consistant fashion it gets crazy again. On October 19 we went to see the pediatrician (and to make a long blog shorter) he decided to start Boo on O2. That was the begining of the end for the day because just as we left the office Cleveland Clinic called wanting to know if we could be there in 1 week for his muscle biopsy. Uhhhh sure we can do that. So we started getting things in order, had the ped write up his report and fax it over and did the same at the ENT appoinment the same day. The ENT thought Boo needed a sleep study because he didn't think he was suffering from obstructive sleep apnea due to a throat issue, which was one of the things we were considering as a reason for the O2 need. As we left the office Cleveland called again about the O2 order. They wouldn't sedate him without knowing why he needed it to start with. So they scheduled him to see a pulmo and cardio in Cleveland because the ones here are nearly impossible to get into on short notice. So they canceled the biopsy and scheduled the new appointments for Nov. 1st
This was emotional for me because we had been waiting for the biopsy to be scheduled for such a long time and to have it and then not have it and to be bounced around so much in one day was draining. Because God is always in the details I wondered what we needed to find out before the biopsy.
That was a Tuesday and by the time the medical supply company got it together and delivered the O2, it was Friday evening. They took a monitor download the same day and it showed 33 events over 3 nights. This is not a terrible report, many children will have 33 or more episodes per night but for us it showed that there WAS something going on. After the O2 was delivered we packed up and went to visit my parents 1.5 hrs away. That night we started him on 1 Lpm and the next morning we woke up to a completely different child. The boy we always knew was inside came out. For the first time in his life Boo played without fatigue for FIVE HOURS straight. Normally he wouldn't be able to play for more than 30-45 minutes at a time without a break or a rest and this is in our tiny house where you practically have to crawl over the dining room to get to from the kitchen to the living room. (We placed the O2 concentrator by the fridge and the 25ft of tubing reaches every corner of the house!) My parents home has a flight of stairs and he must have climbed them at least 3 times and ran through the offices, guest space and of course tore up my parent's livingroom. (My parent's home is built over the offices and warehouse of the family business so this is a pretty large running space!) I couldn't believe the change. Day after day it was the same. We kept him on the O2 only at night, naptime and for long car rides and he was doing great! After spending a little over a week with my parents we all left for Cleveland for his appointments.
Since this "update" is turning into an "upbook" I'll shorten it to say that we took the girls with us this time because we were able to confirm a room at the wonderful Ronald McDonald House there the day before, arrived and had a great evening as a family. During the night Boo started struggling with congestion and we had to double his O2 usage. The next morning it was obvious that he was not in the best shape. For that matter neither was I. I didn't think I had much choice other than to press on with the plan though. Hubs was to stay with the girls at the RMH and try and have a fun day together between work phone calls while I shuttled Boo around. Our first appointment was with Cardio at 9:30am for an EKG and Echo. Both of which turned out fine and we were told to come back every year for a check up and not worry about his autonomic heart rate changes unless they stayed high or low "for a long time". Then off to pulmo after a 5 minute coffee break. I have to say, any peds doctor that sports a pink shirt and bright blue polka dot bow tie to his appointments to impress the kids is a winner in my book. He was really interested in the whole picture and trying to figure out what part he was going to play in it. He also took time to make sure Boo was comfortable during the exam part. He wants a sleep study, a broncoscopy and a chest x-ray when we come back for the biopsy and was all for keeping him on the O2 if it was helping so much. Yay!! Another doctor who trusts parents! During the appointment Boo started screaming in pain and it took me awhile to figure out that he was bloating. I vented his g-port and dark green bile came flowing out. Great, just great, his motility had shut down. I stopped his feeds and dumped the bile and he was much more comfortable in about 10 minutes. The resident had been in the room during this time so got to see first hand what happens when Boo has a cold. I was secretly praying that we wouldn't end up inpatient. We got back to the house and I started him on Pedialyte and he seemed to perk up after a bit. Enough to play in the room while we packed up to leave. I felt SOOOOO guilty having a sick child in the room so we kept him sequestered and after taking him from the room I cleaned, then disinfected every inch and then cleaned again praying the whole time we'd leave no germs.
We went back to my parents as Hubs had more work to do there and ever since it's been like a children's hospital around here. We had to nearly triple Boo's O2 one night and during the times he managed to get his cannula dislodged he'd drop to the 80's. Pudge has also gotten very sick running high fevers and being very lethargic so at one point Hubs considered trying to figure out a splitter for the O2 because Pudge's sats where hoovering in the low 90's but then the motrin kicked in and they went back to normal. So now we know that Motrin has to be kept running for her because if it wears off she goes from sick to very sick fast. Princess has managed to stay fairly healthy and has only developed a dry cough so far.
So that has been the last fortnight here in the Mito Lane. A never ending series of adventures which has required an enormous supply of coffee, chocolate and of course much, much prayer!