Tuesday, July 27, 2010
Hi everyone, we're home safe and sound and trying to rest up... thanks for all of the kind thoughts and words and prayers! J.J. is rock n rollin, but Billy and I are exhausted! Unfortunately one of his supplements is minty and not too good tasting, hopefully he won't get tired of taking that twice a day! It's a little depressing being reminded that J.J. can be a pretty sick kid, it had started feeling like we were in the clear for a while there. Now to clean my room. It was a little embarrassing having 4 paramedics in there! haha. Thanks again for all of your support. love Krista
at 8:44 PM
They checked J.J.'s calcium levels at 7 am today and they're happy with them so we get to come home today! We'll have some follow-up appointments with some specialists but we don't need to be observed at the hospital anymore. We'll have some prescription supplements that we'll need to give J.J. regularly and we'll have to come in regularly to have his blood checked.
We have had such awesome care at the hospital and everyone has been so great, from the paramedics to the nurses in the ward. We must be getting older because every time we come to the hospital, the nurses and doctors seem to be getting younger and younger! ha!
We are so tired and I have been more fatigued than a usual hospital visit. The first day I was super mom and yesterday I totally crashed. Maybe because the first morning was so stressful. I'm finding it really draining at the hospital, there's a lot of waiting around and waiting really wears me down. Also, it doesn't take long for all of the difficult things/frustrations about the hospital to flood in even though we appreciate so many things about BCCH. It's been hard to have the family split up, and hard to leave J.J. and Billy there at night (only one parent can stay), so it will be really nice to all be together and relax soon.
Thanks for following along with us. We love you all!
at 8:34 AM
Monday, July 26, 2010
so things are pretty mellow around here without much going on. J.J. gets his meds 8am and 8pm and his levels are within normal range now so we're just waiting for the doctors to be ok with us going home. I wish we could all be together the whole time and not have to go home at night but Jackie didn't feel up to even coming to the hospital today so I could just come in for a while. No new or major developments... just waiting.
at 5:25 PM
Sounds like the night went ok, they were able to get the blood from J.J. with finger pokes. He doesn't love that but his vein must be getting sore because they could only use his right arm for blood tests since the IV was in the left arm.
They have succeeded in getting J.J.'s calcium levels up to 1 but now they have decided to keep him another night to make sure that he can maintain that level with the oral supplements. The calcium infusions that they've been giving him through IV act really quickly but also leave the system quickly. He started the oral supplements last night at 8 and it takes 24-48 hrs for them to kick in.
at 9:35 AM
Jackie didn't feel too good this morning and was trying to throw up on an empty stomach... I don't know if he picked up something at the hospital or from J.J. (he was sick yesterday morning, but I thought it had more to do with electrolyte balance or his body being taxed). Jackie might have already had something or maybe he's just super tired, he had a few really late nights lately. Anyways, I'll see how he's doing in a while before going into the hospital.
at 9:19 AM
Sunday, July 25, 2010
Well J.J. made it through 1 IV start and 3 blood tests. He took all of his new supplements/meds (3 tablets and one liquid) like a champ... with the help of a few treats. I totally don't mind at a time like this but his diet today has mostly comprised of a popscicle, canned peaches, ice cream, 2 giant cookies, 2 jellos, and... cereal! And there has been a definite cartoon marathon.
His first calcium bloodwork was .87 and now it is .91, gradually creeping up. Over 1 would be the lower end of acceptable I believe. They are giving him more IV calcium tonight and the plan is to poke him for bloodwork at midnight, 4 am and 8 am. Poor guy, hope he can get a little sleep. As many of you know, Billy can sleep through just about anything so I'm really hoping it will work out for Billy to wake up and help J.J. through the bloodwork.... I'm really hoping they'll wake J.J. up first and explain what's going on, not just let him wake up to getting poked.
I really doubt they'll let us leave the hospital before J.J.'s calcium is back up to one.
One plus is that tomorrow the Blizzardmobile will be at the hospital giving patients + families free mini blizzards, 12-12:30, one day only! How's that for timing! Good night!
at 9:51 PM
so J.J. had a seizure this morning at around 10:30 am. It lasted a couple of minutes and it was pretty intense, including blue lips and gasping for air :(. Pretty scary for a few minutes there. The ambulance came and got me and the boys (Billy was on the sunshine coast for disaster daze) and J.J. has perked up a lot since then and actually other than pokes and iv's is pretty much having the time of his life. We've been watching cartoons, colouring, eating chocolate cookies the size of his head....
Anyways, his Calcium and Magnesium are really low so they are keeping us in overnight to get that back in order. At this point they are assuming that's what caused the seizure. We have to start up the regular Ca and Mg supplements, probably for good... which means lots of frozen blueberries and yogurt, J.J.'s favourite way to take meds. Good thing it's blueberry season! Gonna need to do a major stock up in the freezer!!!
Billy will sleep over with J.J. tonight and I'll stay at home with Jackie tonight.
at 6:03 PM