Sleep Study

We were able to bust out of CHOW Saturday morning around 10:15. So it's been a bit chaotic around here, so sorry for not updating.Friday was a very low key day as we sat around and waited for the sleep lab to call Danny down to start his study. We went down around 8pm and he got prep'd for the study. I'm not sure about you but there is no way I would be able to sleep with all this jazz on me. Danny slept right through all the commotion. And commotion there was....seeing we were not on the floor for the study his nurse had to come down with his feed, meds, and she wanted to flush n cap off the Med port. Meds were given, feeds were started and the Port was .................PLUGGED! UGH!! I guess when the IV fluids were stopped in the am it was never flushed with heparin. So his nurse had to go back up stairs to figure out what was going to be done. The CVL team stated the port NEEDED to be functioning even if we weren't using it because they needed to find out if the clog was in the line or the port. Luckily the TPA worked in the line OR he was going to get reaccessed. If that didn't work....they said they would have had to put in a whole new med port. OMG that would have been awful. THANKFULLY it all worked out. By the time we were done farting around with him in the room the study really should have gotten some go results from about 10:30 till 2am, as this is when he decided he needed to get up. GO FIGURE! They poked his finger for a blood gas at 5:30am and back upstairs we went to wait till rounds and the ok to leave. We were on the road around 10:15am and in the door around noon. Ahhhhhh! We were both exhausted but I still had alot to do. Unpacking, waiting for the DME to get here with supplies, and everything else...heehee. Of course the supplies that my DME supplier wasn't compatible with everything SO.............we have done some tweaking. The first nite wasn't the easiest as vent alarms were going off through the nite. Puff and I have a love hate relationship....it's making it really easy to love to hate it. But by Sunday nite it wasn't too bad. See you can teach an old dog new tricks :)
This afternoon a certain Lil Man scared the H%!! out of me, Gail, and Dr Kasper. I guess the new BP med had finally hit his system and ..............NOT SO GOOD! He was very pale, wouldn't arouse, low BP, and heart rate was 26!! HOLY $H!T!! NOT COOL!! I called Dr K up and we agreed to hold the med for right now and keep a close eye out on Danny. I think we all had to change our shorts after that lil stunt!! 5 hours later Danny is up in his chair awake and smiling ~ ROTTEN I tell ya, just plain out SASSY. I swear he just shaved a few years off my lifespan today. Thankfully he seems to be doing well right now. BUT man, just reminds me how fast things can go down hill.

I am still awaiting to hear how the study went and if there needs to be any changes. My gut says we will need to change his trache to a cuffed one as there is a HUGE leak out of his nose, mouth and under his trache. The study will tell!
Thanks again for checking in on us :)

Glue and more Glue

Well we made it to Milwaukee for Danny's sleep study on time......but then sat and waited for an hour before someone came into the room to start hooking Danny up. We actually hit no traffic on the way there, now that is something to write about, Yay! Danny and I sat and cuddled in the bed watching Aladdin while we waited. I was starting to put my guard on when there as they didn't seem to have their stuff together ie: running around, no one came into the room for over an hour to even acknowledge, then the orders were wrong in their system for his settings, and the glue squirted all over the pillow right next to his face (this is like super glue). But they redeemed their selves by not putting on alot of tape on him as the last time not only did he get 2 Huge pressure soars on his face from the mask but he had an allergic reaction to all the tape they have to put on his face, ugh. But not this time, Yay! Well after he was all set up he actually fell asleep sooner then normal so the testing could begin. I sat in the dark, with the hall light illuminating just enough light for me to address the Christmas card envelopes (yeap there is that OCD kicking in, heehee)so there's another project off my to due list. Yeah!! I slept like crap on those chairs, but didn't go in thinking I was going to get a good nights sleep, but at least lil man did. There were two other children that were being tested last night too, but they were not as cooperative as my angel. They were up Very Very Very early (like 1 am and didn't fall back asleep, so they left around 2-3 as they were making alot of noise.) But lil man didn't hear it so he slept through it all, Yay! They woke us up at 5:30 and by 6 we were on the road. Boy I can't believe the traffic at that hour of the morning in Milwaukee, good thing we don't drive that every day, YUCK! I should get the results in about a week. He seemed to do ok, but I don't see or hear any of the monitors so really won't know till I talk with the doctor. The tech did mention he "paused" just a few times, but recovered quickly so maybe he is starting to have central apnea, we'll see what the doc has to say. We got home and I had to wash his hair three times and there is STILL glue in there, ugh. It should be all out by tomorrow. No red marks or pressure soars either so I'm one happy momma!
Physical therapy was already at the house at 10 this morning and we are waiting for OT around 2. So in the mean time I am making all the dips and some of the meals ahead of time for our trip up North. I'm hoping the weather corporates with us.
Oh yeah the wheelchair. ...... it's here but not all the right pieces came in so Danny still can't use it yet. I had this misconception that a wheelchair is a wheelchair, until the new one came in my door. It was like seeing his first one all over again and all those emotions. This one is so much bigger and we needed to get alot of special pieces for Danny as he is becoming more complicated, sigh! So it's been another adjustment on my part, but I'll get over it as long as he is comfortable and I can get him around comfortably. I will post pictures when it is all set up and right for him.
Please take a few and stop by Angel Lilie's site.....today would have been her 2nd birthday! What an awesome family! Happy Birthday Lilie!!!!

Sleep Study

Tomorrow Danny has a sleep study done down in Milwaukee. We need to be there at 6:30pm, then they hook him up to wires and monitors, put his bipap on, lights off and no noise after 8pm. I get to sleep on a chair that converts into the most comfy bed, NOT! But I won't be sleeping on it long as they wake Danny up between 4:30-5am, poke his finger, rip off all the tape that they put on him, take off the wires in his hair and then send us off on our way which will be about 5:30-6, YIKES! So needless to say the closest Golden Arches we see we will be stopping at for lots and lots of coffee. To come home and try and strip the glue out of his hair, YUCK! I can only hope this study shows ALOT better results now that he is using the Bipap then before. Cross your fingers!!! LOL So tomorrow Danny has PT at Theda in the morning, I have a meeting at 1pm, take Avrianna to Pioneers once her schooling gets done, and then off to Milwaukee (1.5 hours away). To come home on Thursday for a long soak in the tub to try and get the glue out of Danny's hair, PT here at the house at 10am, OT at the house at 2:15 and then Avrianna to swim after schooling. Friday I will be making all the food in the morning that I need to prepare for our weekend away up North. Then this weekend I'm going to sit and relax....I hope, LOL.
Avrianna had a great time spending time over night at her Nanny's. She can't wait till she can go again.