Friday, February 17, 2006

We're home

Surgery went wonderfully and Callum was a little star. Staying in the hospital over night was a pain in the bum - checking vitals every 4 hours, alarms bleeping, babies crying, etc. but the nurses were wonderful so it wasn't too bad. I'm so glad we took the portable DVD player with us, Callum woke me up at 5:30am with a big grin on his face and asking for Shrek!

Getting medicine into him has been a nightmare, he's supposed to be taking an antibiotic (Amoxicillin) twice a day, Tylenol with codeine every 4 to 6 hours and ear drops twice a day. Callum detests Tylenol and we managed to get two doses into him at the hospital, we I say we got 2 doses, what I really mean is that I got 1 1/2 doses spat out all over me and Callum got maybe 1/2 a dose into him. We gave up when we got home and have been giving him Tylenol suppositories instead which seem to be working. The Tylenol episodes left Callum refusing any meds by mouth so the antibiotics were also getting spat out everywhere. I called the doctor to ask about other options and she said not to worry - it's only precautionary and it isn't worth the big fight, wheeww. Ear drops are also a bit of a battle but at least that's quick and he can't spit them out ;-)

Callum is doing great, eating and drinking lots and generally in a good mood. He gets a bit cranky when his pain meds wear off but apart from that he's a happy little boy. He sleeps so quietly now, we have to keep checking on him because we can't hear his snoring and heavy breathing over the monitor. His voice also seems to have gotten higher, not sure if that's just because of things still being swollen from the surgery or if it's a permanent change. he sounds so cute and sweet though.

They repeated his CBC during surgery and his ANC is still low but everything else looks fine. His pediatrician has referred us to a hematologist to see if we can get an explanation as to what's going on. I looked up the doctor on the internet and he's chief of the pediatric hematology and oncology department, I hate that oncology word. Ever since we get his lab results backs I've had this little horrid voice running through the back of my mind whispering Leukemia, Leukemia, Leukemia and I want it to stop! 1 in 150 kids with Down syndrome get leukemia and it's my absolute worst nightmare. We've already had one scare with Callum when he was a few months old and he developed petechiae all over his body and had a high fever (both signs of the "L" word), I was absolutley petrified and thinking that Callum had leukemia was a million times worse than being told that he had Down syndrome. Callum continues to get petechiae whenever he gets a virus so we've stopped worrying about it and just put it down as something his body does when he's fighting off a bug. Now before people start worrying a low ANC is not a symptom of leukemia (as far as I can tell) but anything to do with blood counts being off sends me into worry mode.

I'll end with a cute Callum moment. For the longest time Callum thought kisses were the same as blowing raspberries, he's now giving proper kisses (except to his brother who always gets a special raspberry kiss before bed) and when he came home from the hospital he walked up to Jarvis, who was fast asleep on his cat tower, and gave him the gentlest of kisses right in the middle of his forehead, he's glad to be home.


Kim Ayres said...

Getting home from the hospital is a wonderful thing. There's always the feeling that the worst must be passed. And even if it's sometimes an illusion, it's a comforting one.

Phew, I'm exhausted reading your long posts. Get back to writing little and often. It's easier to cope with :)

Naomi said...

Thanks Kim :)

I get the hint ;-) there's so much stuff going on right now that once I get started it doesn't seem to stop!

Tara Marie said...

I'm so glad Callum is doing well and I hope that your life settles a bit after all the appointments are over....I hate that feeling when there are just too many outside things tugging at you.

Emma Sage sends big hugs and kisses to her buddy Callum.

Peace and love, Tara Marie & Emma Sage

Lori said...

Naomi, we just went through a month-long deal w. a hematologist because Evan's red cell count was way high & his white cell count was low. Turns out 2 things were going on: 1)people w. Down's have larger than normal red cells, which can reduce the white cell count, & 2)we found out he is hypothyroid, which also affects his CBC count. It was a nerve-wracking experience though!

My recommendation is that you make sure the hematologist has worked w. people who have Down's before so that they are familiar w. the physiological differences our kids have. It really does make a difference. We will be praying for you guys!

Naomi said...

TM - Thanks for stopping by. I think after March things should settle back down and hopefully I'll have time to start taking some photos again and will visit flickr more often.

Lori - Thank you, Thank you! It's great to hear that it may just be a DS thing. I'm so glad that everything is Ok with Evan. Callum's thyroid is fine (just got it checked a couple of weeks ago) and I'll be sure to ask the doctor lots of questions. His appointment is next Friday (the 24th) so at least we only have a short wait.

RNP said...

Naomi: Glad to hear more specifics about the immune system issues, and Mr. Callum. Thank goodness you brought the portable dvd along, Shrek is great!

Sorry to hear your concerns about the "L" word. I hope that you get some reassuring news to make this worry go away-really soon.

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