Monday, July 13, 2009

Night Owl

Danny really enjoyed having his sister visit him....just like at home! Both together chilln out watchn TV. Boy I wish we were at home~ The 3 hour visit just wasn't enough Avrianna time, but after almost 3 weeks of not seeing her it wonderful to have her around. How sweet ~ AWE
Danny's talking to his sister.....MISSED YOU AVRIANNA but what are you doing in my bed?!
Our front door for the last few weeks!
Danny is still having some issues....this weekend he's pretty much been UP around the clock. He goes to bed around 9:30 but on Friday night up around 1am for the rest of the day, Saturday night up around 2:30 then manage to nap after having sedation for 4hours, and last night up at 12:30 for the rest of today. This is all getting very old, I'm getting very cranky, and tired. It's not just the not sleeping part....when he's awake it's like I have my old Danny back ~ Very stiff, spastic, tremors, plus touch and sound will set him off too, it's exhausting to just watch him do this for most of the day. Today I had my fill of everything and didn't help the nurse on this morning cranked me right up. She wins the floors gold star for "The Most Laziest", just my luck. No worries we'll no longer have to deal with that again, LOL. Dr. John (Palliative Care Dr) got ontop of some of the pressing issues that Danny has been enduring all weekend and talked with the specialists that would be involved. We increased Danny's baclofen pump plus found a Dr here at CHOW that will manage Danny's pump on a regular basis, YAY! The Urologist, Dr. D, visited Danny and we've agreed that Danny will have surgery on Wednesday to get the 10mm (1cm) stone out of his left kidney plus take a look at what going on with the "pocket" in his right kidney. That's just one more thing we can mark off the pain factor list once it's taken care. I was able to find out that the right hip (the one that was just repaired) is sublexed alil, but the doctor feels it's not anything that would warrant his pain/spastic activity lately. I'm VERY disappointed that he his hip is already having issues and it's only been 6months, ugh. We did start his feeds up again and start his meds back to oral instead of IV, which is going soso. Tomorrow is the BIG day....Danny is having his first trache change by Dr Beste (ENT), then it's up to me to start to learn how to replace the trache myself. I'm running on fumes right now....Danny is sleeping so I am going to crash and catch some zzzzzz's too.
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1 comment:

Anonymous said...

Awe two gorgeous little kids :)
I know it's so draining being inpatient. Your stress level must be through the roof.
At least there's a plan, and I sooooo hope things begin improving to the point you can manage at home and have your family together again.
You're doing a great job ... hang in there!