Today was a busy day at school. Brent came with me to help with the carnival and to keep an eye on Jilli. Last night she made it til 3am before her croup decided to join the party and she started coughing. She was excited to go see her friends though today. I don't think she is understanding what it means that she will be staying at home with mommy now and not going to school. She seamed very confused by today, and I am sure it is really strange for her.
The carnival went great and the families seamed to really enjoy it. I was given several potted plants, which are now on my front deck and will make me smile and think of my kiddos each time I see them. It was very sweet!
After the carnival we packed up my last few things. I had cleaned out most of my room already but there were the odds and ends that still needed to come home. It was strange seeing my room so bare.
My co-workers made me a goodbye card. Jillian's teacher got her a little toy. I really am grateful for everything they have done for her!
Saying goodbye to my kids was hard. They will all be at a different building next year and this goodbye was probably a forever goodbye for many of them and I will really miss them. I made them each a DVD of pictures from our school year and I have a copy too to remember all of the fun memories.
This morning the sleep study doctor left me a message that she had not looked at Jillian's sleep study yet but that she would do it in the next hour and then someone would call me today. Brent, Jilli and I went out for lunch after leaving work and while at lunch I got a call from Jillian's pulmonologist. She said that she had just talked to the sleep doctor and Jillian's sleep study was fine and her blood gasses were fine (interesting because the results they put on her mychart showed that a few of the parts of her blood gas test were off and one by a substantial amount) She said that maybe her 24hr test had more artifacting (errors where it did not read correctly) then we thought and maybe it was both night and day leaving question to her oxygen use during the day. This is where I jumped in. I told her how EVERYONE is noticing how much being on oxygen is helping Jillian, from her therapist, to her teachers to family and friends, it is a noticeable difference for the better so obviously it is helping her. A two year old can not fake that. She said then maybe she should keep using it during therapy. I told her that she needs to continue using it anytime she is wake and moving. I told her the story about how Jillian will sit for hours straight while not on oxygen (the day of Bren't surgery she sat ALL day til we got home) but once back on oxygen she is up and moving. Why would we not give it to her if it is so obviously helping (note also this is the FIRST time ANY medical professional has talked to me about Jillian's oxygen use and how she is doing on it since we started it OVER a month ago... no one has checked in until now) We have months of pulse ox tests during therapy at this point that all show how much she needs it. That 24hour test was not wrong, and maybe she was just having a hard night breathing that night then she did sleep study night causing her night levels to be lower for the 24 hour tests. Our medical system likes to take small bits of information and generalize it to how something works 100% of the time, I know that can't constantly test but I also know that I have up and down days health wise, and I am positive she does too. Maybe some nights she does struggle and other nights she does better.
The doctor at the end of the conversation agreed to leave everything the way it is now. I'm grateful for that because I think oxygen use during the day is the best thing for Jilli right now. Trust me I am the one who has to deal with all of the pains of having a child on oxygen... I fight with med supply (they messed up again this week...) I have to juggle extra stuff when we go out and make sure we have enough oxygen with us... I'm the one trying to figure out how to make oxygen work at Disney, but I do it because I see how much it is helping Jillian so ALL of the pains with having a child on oxygen are worth it because it is helping her.
The doctor did also say at the end of the convo that kids with mito do tend to have a smaller reserve and that sometimes kids with mito tend to do well on oxygen because they use up their reserve so quickly when moving that they need some help. She asked if we are still going forward with genetic testing and I told her yes. Everything points more and more to mito, I am just hoping we get an accurate diagnosis soon. Obviously something is not right... I would just love an official name for it.
Right now Jilli is doing another neb. They are about 4hrs apart right now. She is almost like a clock, you can tell the closer she gets to 4 hours because the coughing increases the closer she gets to the 4 hour mark. I am just thankful that the nebs are helping and we have not had to give her any steroids in her tube this round of croup. I'm hopeful it will stay that way too!
So there is today. Bitter sweet would be the best way to describe it. Brent is out mowing the lawn now and then I think we are all going to spend some family time together and just chill...
ps- i don't think it has sunk in yet that I don't have to go to work on Monday... I think Monday morning i will have a very positive outlook on that :)
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