This week has been a roller coaster of a week for us....Monday started off with a big fatty plug and an emergency trach changed needed. Followed by Monday evening with our Monday/Tuesday nurse pulling herself from the case, another one bites the dust. Tuesday, I stayed home to play nurse. The morning started off great, as you can see from the photo below.
About 20 minutes after I took this picture, things went south. Ian oxygen levels dropped to about 78, an extra treatment was needed which helped to loosen up the secretions which were hanging out....some extra cough assist needed and suctioning and about 2 hours later, he said he was feeling better. During this extra treatments, we were talking and he said that it was hard to breath and wanted to know why this was happening. I looked him in the eyes and told him that he had some extra secretions in there we were going to get out and we would get through this episode. As for why this was happening, that is always the hard question to answer...and one I don't remember how I replied to. I do know that whatever the answer I gave him, helped to calm him down and that is the most important thing. The rest of Tuesday was good, Brian came home early from work because of the episode and we got to spend a little bit of time just the 3 of us before Becca came home from school. By 8pm, I was beat. Tuesday, Wednesday and Thursday, have been painful days for Ian. We have been able to mange them with a few extra doses of his pain medicine and a few extra naps. Hoping tomorrow is a quiet, pain free day. As well as the nursing agency finding us a nurse for Monday and Tuesday, otherwise, Brian and I will be splitting the week.
Becca has had a good week, counting down the days until Spring Break, which starts at the end of school today. She will be spending the week home, working on her Bat Mitzvah, much to her dismay. As I have told her, it is all part of the program and everyone planning for their mitzvah must go through. She has been busy with girl scouts working on her silver award with her troop. They are planning on doing something to raise awareness of disabilities. She also has been busy working with her STEM group, making race cars out of edible materials. It has been fun to watch them build the cars, race them and collect data, along with the laughing that comes along with it. All the laughter, sometimes, makes me dream about the what if's. I am just grateful for her friends that keep the laughter coming.
As for Brian and I, we are doing well. We are deep into the planning of the kids B'Nai Mitzvah which will be here before we know it. Brian has been busy with taxes, well on and off, and had a little bit of time to get out of the house. I have been busy taking care of things while he has been doing the taxes and look forward to getting out of the house in the next few weeks with some friends. We have had a little bit of time for each other, usually, late at night after the kids are in bed and the nurse has arrived...but that is just how it goes in our home. We spent the few minutes right before we fall asleep with each other.
Treasure yesterday, Dream of tomorrow, Live for today!