I know I haven't posted here in a while. Its been a...well, it seems like its been a couple of years of struggling to get a grip on things, getting a grip and then quickly losing that hold and having to struggle to get a grip all over again! So, sometimes I feel the desire to post something here, but I quickly lose out on the "current event" status of the post and then it feels silly to post it. Overall, since we left the hospital for Bean's pneumonia in November of last year, things have been up and down, but all around okay...and very, very busy.
When she got out of the hospital, Bean did fantastic. It was as if she was breathing through another person's nose and/or mouth! She didn't snore. She didn't gasp for air while sleeping. It was amazingly peaceful sleep. But, as time went by, she was back to her snoring self. Soon, it was as bad as before and she had a runny nose and started to cough. We had to cancel a sleep study because of the illness. She was diagnosed with Strep Throat, although she wasn't tested for it because it just seemed extraneous - the pediatrician put her on antibiotics. She was on those for 10 days, got better, then about four days later, she started to complain about her ear and she was back to a runny nose. So, we went in and she had an ear infection and some upper respiratory stuff going on. So, back on antibiotics we went (a different one this time). She was on that one for 10 days and seemed to be doing better again, although still a little stuffed up. We were off antibiotics for a few days, the stuffiness continued and a slight cough and then she woke up from a nap with goop in her eye. The next morning her eye was pretty much crusted shut. Back to the pediatrician we went. This time, she had one ear "full of puss" and signs of a possible sinus infection. The eye thing was probably from her ears and sinuses being so full they didn't have anywhere else to drain but out her eye. Ick...so, on to the third antibiotic. That was last week and things just didn't seem to be improving greatly over the weekend. She would feel good and then crash. She would cry at night (I assume from her ear) at random times, over and over. So, we went back to the pediatrician this week and found that she had infections in both ears - the right one looked like "it had not been treated at all". So, we changed back to the original antibiotic she was on for the ear infection and started her on allergy medicine to see if maybe this is all related to allergies. Sigh...
Tonight, we have our sleep study. Even though she isn't 100% healthy at this point, I don't want to put it off any longer and I feel like her sleeping/snoring/apnea stuff is pretty representative right now of what it has been other than that couple of weeks after she got out of the hospital in November. So, we'll be going to Mountain View tonight for that. Wish me luck!
The impetus for writing this update came in the form of a post about RxArt - a non-profit that "promotes healing through exposure to fine art" and has done some amazing projects at different hospitals around the nation. As someone who has and will continue to spend a lot of time in a hospital setting (even if just for visits), I so appreciate the art that is made available in these settings. Lucille Packard has some great pieces in their collection and I'm always excited to see anything new that comes along. Recently, they changed out the art in the pre-op waiting room and made it all sea creature paintings. This was an obvious boost to Bean's spirits when we went! Anyways - I encourage you to check out the link and explore all the different projects and if so inclined, donate some money to the cause! The picture at the beginning of this post is from their latest CT Scanner project at a Children's Hospital in Illinois. We have not been through a CT Scan experience, but I hear they can be pretty scary. So, these happy monkeys could really make a difference for some kid!
RxArt | Promotes healing through exposure to original fine art
I am hoping that I will be able to be more regular about updates on here...wish me luck at getting...and keeping a grip. For at least a little while! Hope everyone out there in the land of the internets is doing well!
This blog is named for my daughter's heart transplant. In July, 2009, "Bean" received a new heart. It is my hope that this blog may help others going through major changes or living with major challenges.
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Glad to see you posting again!! Glad Bean is doing better-ish!! Here's hoping the antibiotics and allergy meds do their job and Miss Bean is 100% soon!!
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