Our house is about 75% unpacked and organized at this point (most of the remainder of the stuff is in our bedroom). If it wasn’t for my in-laws, we would probably be at 20% unpacked! We had a nurse on Saturday for 8 hours, but we haven’t had a nurse since then so either Daddy or I were on Hannah duty, which makes unpacking and organizing very slow.
We really like our Saturday nurse, which is usually our Monday nurse, but Saturday she definitely was not on her A-game with Hannah. Constantly texting, watching Law and Order and other not-for-children shows on the television when she should have Hannah type shows on (we let them watch what they want when Hannah is sleeping), keeping Hannah on her iPad videos for much of the day, etc. She even fell asleep on the couch holding Hannah while Hannah napped — all of this in front of my in-laws and us! I know I need to confront her on this, especially if she is to become a 4-day week nurse for us but I was just so not in the mood to do it that day.
I got a call from the ER that Hannah was in last week. Apparently her trach cultures grew out Staphylococcus aureas AND Haemophilus influenzae this time. A few weeks ago, it was just the staph aureas. I guess it would be safe to say the last dose of Cipro didn’t knock it out of her and then she got the virus on top of it. Needless to say, she has spent a lot of time just cuddling and sleeping. Her demeanor is better than it was last week, so that is a good sign.
It also seems to be a good sign that her O2 saturations overnight are somewhat better. We are no longer seeing anything in the upper 80s anymore, but more in the low to mid 90s while she is sleeping. Her respirations also seem to be more regular however she does still have spells of what is either sleep apnea or something else. They only last a few seconds, but it is still something I need to let her pulmologist know on Wednesday when we see him.
The hardest part of the weekend (besides Daddy and I also getting sick with the flu, did I mention that part?) is having to get rid of a ton of Hannah’s toys. Daddy and I decided that it would be smart to get rid of the toys that Hannah no longer plays with, which turns out to be at least 2/3rds of her toys. Honestly, most of the ones I kept she can’t play with either, but I wasn’t ready to let them go just yet. I’m just hoping that we can get her to play with them again.
My heart is with you. These days must be difficult and you are such an inspiration to keeping on unimaginable heartache.
God’s blessings to each of you.
I have only met you a few times, I am a teacher with CCSD, but you are awesome parents and I will keep you and your family in my thoughts and prayers. Please do not worry about contacting us until all is well. The nurse did not realize how sick Hannah had gotten or that I had called you as well. Sorry
Teri Engel
Hugs and prayers, Carrie. I wish that the nurse quality (or lack thereof) was something that you didn’t have to deal with right now.