**I wrote this post last night but had trouble uploading it until now.**
I recognize my tone in these posts bounces all over the place, but that's the problem with this whole quasi-live blogging Jaisal's transplant, each day we experience an undesired range of emotions, each of which is undoubtedly magnified by our lack of sleep. (The doctors talk about a phenomenon known as ICU psychosis. It's nearly impossible to go more than two hours in the PICU without some medical professional stopping into your room. This frequent intervention causes sleep deprivation, day-night reversal, agitation, etc. I think we're all experiencing PICU psychosis to an extent.) My point being that it's not my fault that this blog reads as the ramblings of a crazy person. It's the PICU's fault. Yup, I am blaming a location.
Continuing the happy news trend for today, Jaisal slept last night. He continued to startle awake while sleeping, but he went back to sleep each time. This was the most he'd slept since December 11 (of course I celebrate this fact as Jaisal stares at me blogging on my phone - he's been awake since 3 pm today and I am hoping a fourth attempt at ignoring him will finally get him to go to bed).
Of course you saw that he smiled today. The smiles were followed by laughs brought on by his dad. The general merriment associated with his laughter would make you think that we'd won the lottery.
Jaisal also spent 6 hours without the mask and didn't seem to have too many problems. He still needs to use breathing support that is only available in the PICU to get through these 6 hours, but it's progress regarding his general state. We'll get a chest xray at 4 am today to look at his lungs and diaphragm, although physical exams don't indicate that we should expect to see that his diaphragm moved at all.
Jaisal's normal personality is starting to shine through again. He started reaching for toys, using his signs (mostly to ask for books and to do more of something, although he did clap for me after some singing - he already understands that flattery will get very him everywhere), and generally showing more awareness of people and things.
Best of all, Santa and Mrs. Claus came to visit. Jaisal's stranger anxiety has reached new levels, so we didn't expect him to be thrilled to see Santa and we were right. I wish I could upload the photo that Santa's helpers took, but right after the photo below Jaisal started freaking out. Imagine smiling adults and crying kid. It is classic.
Santa really knows Jaisal - he brought a fellow monkey for my monkey to play with and toys that make lots of noise and play music.
Who knows what tomorrow will bring, but if it's more of the same as today, we'll definitely be able to handle it. My idealism was only slightly merited. Today did bring more awesome Jaisal as we wanted, but there was very little sleep so our ability to handle it may be a bit overstated. Here's a pic of Jaisal sleeping last night for one of his infrequent 45 minute sleep binges.
I recognize my tone in these posts bounces all over the place, but that's the problem with this whole quasi-live blogging Jaisal's transplant, each day we experience an undesired range of emotions, each of which is undoubtedly magnified by our lack of sleep. (The doctors talk about a phenomenon known as ICU psychosis. It's nearly impossible to go more than two hours in the PICU without some medical professional stopping into your room. This frequent intervention causes sleep deprivation, day-night reversal, agitation, etc. I think we're all experiencing PICU psychosis to an extent.) My point being that it's not my fault that this blog reads as the ramblings of a crazy person. It's the PICU's fault. Yup, I am blaming a location.
Continuing the happy news trend for today, Jaisal slept last night. He continued to startle awake while sleeping, but he went back to sleep each time. This was the most he'd slept since December 11 (of course I celebrate this fact as Jaisal stares at me blogging on my phone - he's been awake since 3 pm today and I am hoping a fourth attempt at ignoring him will finally get him to go to bed).
Of course you saw that he smiled today. The smiles were followed by laughs brought on by his dad. The general merriment associated with his laughter would make you think that we'd won the lottery.
Jaisal also spent 6 hours without the mask and didn't seem to have too many problems. He still needs to use breathing support that is only available in the PICU to get through these 6 hours, but it's progress regarding his general state. We'll get a chest xray at 4 am today to look at his lungs and diaphragm, although physical exams don't indicate that we should expect to see that his diaphragm moved at all.
Jaisal's normal personality is starting to shine through again. He started reaching for toys, using his signs (mostly to ask for books and to do more of something, although he did clap for me after some singing - he already understands that flattery will get very him everywhere), and generally showing more awareness of people and things.
Best of all, Santa and Mrs. Claus came to visit. Jaisal's stranger anxiety has reached new levels, so we didn't expect him to be thrilled to see Santa and we were right. I wish I could upload the photo that Santa's helpers took, but right after the photo below Jaisal started freaking out. Imagine smiling adults and crying kid. It is classic.
Santa really knows Jaisal - he brought a fellow monkey for my monkey to play with and toys that make lots of noise and play music.
Who knows what tomorrow will bring, but if it's more of the same as today, we'll definitely be able to handle it. My idealism was only slightly merited. Today did bring more awesome Jaisal as we wanted, but there was very little sleep so our ability to handle it may be a bit overstated. Here's a pic of Jaisal sleeping last night for one of his infrequent 45 minute sleep binges.
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