Connor had a very good night and slept all the way through without needing a bathroom break. I woke up at 3 AM and saw his oxygen level at 87 so went to check with the nurse. She came in and looked at his toe and saw that the tape was loose which was good news for us because when she tightened the tape his level went to 91. Not perfect but I prefer him in the 90's then the 80's :)
I gave him Tylenol at 6 AM and he woke up at 7 AM with a smile on his face... that lasted for about 1 hour when he realized he was not getting any food or anything to drink for the test of his esophagus. He was suppose to lay down, drink Barium and swallow. This is something he was not able to do since he even has a hard time to swallow when sitting up. The Technician was not very nice to Connor so the whole event went very badly.
Today he also got just 10 mg of Prednisone and he will be back on his regular does of 560 mg tomorrow. Our nurse today said they start going to pill form and reducing the overall doses when you get ready to leave. We still are not sure how many times a week he will need to get this IV but I am sure we will find out soon....
The biggest news but really not surprising for Ron and I was the fact that we will not be released tomorrow. Dr. Miller another Doctor came by and took us to the Parents Lounge to talk to us about the scenarios they are looking at for Connor.
There are 4 main Doctors who make up Connor's team. Dr. Pachman, Dr. Curran, Dr. Miller and Dr. Cline. They have been debating Connor's future treatment options yesterday and will meet again tomorrow. Here are the two ideas they are mentioning to us:
First of all they are all in agreement that Connor can not be discharged as of now. So we will stay for a few more days. How many we do not know yet.
We were also told that the first option is Connor staying here in Chicago but being admitted following his release here to an Rehabilitation Hospital.
The second option, and this is the one Ron and I would prefer, is us staying here for a couple more days and then being send and readmitted to the Denver Children's Hospital. There Dr. Soep would take over his care but Dr. Pachman would still be his primary Rheumatoligist. They would then reassess Connor and also would be more attune to the concern we are all having about his oxygen levels and us living at an higher altitude. Chicago really does not have this worry in the patients they usually see :)
From there it would be up to the Denver Doctors to recommend either a Rehabilitation Hospital or any other option they have to offer in Colorado.
If we can get transferred to Denver then Ron and I could set up a 2 or 3 day on and off rotation for each of us so we could get the dogs back home and also get Alexander back to a somewhat normal life
Also since our precious daughter has been on our mind daily it would be wonderful for Ron to make it to Anchorage in time to meet the newest family member. Alexander most likely would go as well and I would stay with Connor.
So no packing up for us just yet but it is in the near future so that keeps us hopeful :)
Connor also had his vocal cords looked at today via a camera that was inserted through his nose. It did not look like fun and Connor got through it but said he never wants this done to him again.
My lovely husband during all of this still managed to do our laundry today and make a run to Target. It is amazing how even the simple things take a lot of effort to get done!
Alexander spend a lot of time in the 4th floor playroom and he is getting a bit stair crazy again. He unfortunately has been banned for a while from playing video games since he has been throwing little tantrums when playing. It is painful to see how even with the best efforts it is impacting everyone here.
Connor has been doing well for most of the day and we feel it is due to Ron and I keeping him steady on Tylenol. The nurses now give it to him when we ask after each 6 hours pass. He also went to play BINGO today and won a toy. He was smiles from one ear to the next for quiet a long time
Tonight is is Ron's turn to stay with Connor and I heard they went to the 5th floor for some coloring, which did not last to long before Connor said he was tired. He asked to go to sleep at 8 PM but Ron tried to keep him up until 8:30 PM when his vitals were due.
Alexander and I found a pleasant surprise when we got to the Kohl's house. On the 1st floor family room they had an arts and craft table set up for the kids to do some valentines cards and boxes. Alexander made a really sweet heart for Connor and a pretty Box for the Lady that takes care of the house here.
Now he picked out a movie and is watching it quietly while yawning while I am typing the blog.
As all our days they are long but seem to go so fast. I think I am on a record when it comes to drinking coffee from McD's... Medium with 4 milks and 3 sugars about 4 times a day :)
Wishing you all a Good Night or a Good Day depending when you are reading this :)
Hugs,
R A C A
P.S. a highlight for the boys tomorrow will be a visit to see Hope. Hope's Mom said it would be good for her to have them visit. Both Connor and Alexander look forward to this!!!!
I don't know if you realize when it happens, but I see you 2 are falling into the care giver mode quite nicely. Your pain observation and remedy was outstanding! You are growing into this role easier than some I've seen. Congratulations! It really does make things easier when you can reconize the problen and tell them what he needs. The best thing is it worked! Hang in there, You guys are getting good at this! :)
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