Adjusting

We are getting back to a new normal and starting a routine around here. It hasn't been the easiest road we've been on, but we've also been on worse. Now that things have settled down, I can start to reflect on all the change and newness around here. I'm not going to lie the vent isn't an easy step to take, BUT it's also comforting to know that we have a way to make Danny more comfortable and hopefully less ill. We've needed to do some tweaking with the settings on the vent and Danny needed to change to a cuffed trache, but I think he's now in a good place (for the moment) with Puff. The alarms have lessened and his tolerance has improved. Lil Man's biggest hurdle is getting used to the new cuffed trache. It must "tickle" his trachea more as he is doing alot more coughing and the last trache change was not the best experience. I can only hope it gets easier on him as I hate to watch him struggle.

Here's Lil Man with all the tubing and baggage on. We had to "travel" with him....just into the hospital for a blood gas level one morning, but it was with all the "business' on. That was a hard to swallow trip.......everyone staring even more then ever. Wondering if people even saw Danny or just all the equipment he was hooked up to :(

Well I see him, all of him, those cheeks, his stunning blue eyes, that thick hair, and his AMAZING Sassy attitude ;0) ~ Boy do I LOVE this Lil Man!!

I'm going to have to put the wheelie bars back on with ALL this on there. He's getting alil heavy in the rear ~ LOL.

We've started to train a new nurse this week. I think she is going to be a good fit. She seems to be very educated, hands on, and caring. Time will tell if she's comfortable with my Sassy Lil Man :)

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 :)

End Tidal

END TIDAL............this has become a word that I don't think I'm going to like :(. All night long, last night, the RT's were chasing a good end tidal -which means CO2 levels. Last nite we had many peeps partying in Danny's room......unfortunately Danny wasn't awake till 1am joining us. Danny didn't fight "Puff" (my name his vent, lol), which I really had thought Thayer was going to be an issue. Oh no on the contrary Danny "rode" puff more comfortably, at times, the I would have liked. Puff is set to breathe for Danny 8 times per minute in addition to him being to breathe "over" Puff (breathe on his own), but Danny liked to let Puff do all the work some times. So finding a happy medium between them, TRICKY. This morning Dannys CO2 levels were on the high side....go figure as the RT's got sick of figuring out so they removed the sensor/monitor sometime through the nite. The blood gas that was done showed he still wasn't venting well. Once the day RT's came in and checked what settings he was on they figured out why his end tidal was off.....the settings were decreased instead increased during the nite which then was not giving Danny the full breath he needed, ugh. Seeing Danny didn't sleep the best he took a nap right away in the am so they were able to play with the settings (by someone who knew what the heck they were doing this time), and it looks as if we might have a better nite tonite then last. My big concern this morning in addition to his end tidal was the fact he was having mucus plug after mucus plug which continued throughout the day. I believe it is the humidity or lack there of but the Pulmnology Dr believes Puff is pulling the crap that has settled in his lungs out. Not sure on that theory as Danny does so much pulmonary toiletry - heeehee - twice a day that you'd think some of this would have been seen or at least heard before??
I found out a better time frame Danny was going to go into the OR today for ear tubes and of course it was during my appt to get my MS infusion in a different hospital, sigh. I have NEVER not been here for Danny during any procedure ... And I wasn't going to let that happen today (without trying). I called the other hospital to see of they had an opening and lucky me, they did. I ran right over as Danny was still napping and he had 2 nurses, our great RT, and my good friend looking after him. Wonderful!!! I was done and back before anything took place....well surgery related. I guess Danny really liked Puff's new settings, on his nap, and when he was taken off, when he awoke, breathing was a priority. The belief is because Danny has been breathing like this for so log his brain is used to it and when Puff was breathing "normally" with a "normal" end tidal it took his drive to breathe away......about 5 minutes later he kicked started and was breathing on his own. YIKES!! Needless to say the settings were changed again to maintain a Lil higher end tidal so he breathes on his own when he's not on Puff.
ENT was able to put Danny's right ear tube back in and readjust the left. Get this the O.R. Came up to Danny's room and did the procedure there. Only Danny....as I always say about him AND his father....that's right I'm Dan Osero! What a great crew they were, and they we so nice - loved them!! I wish I could post pics on here but on the CHOW wifi I'm restricted, but those of you that follow us on Facebook you can see pictures on there.
Here's to a better evening. Good nite n sweet dreams from Danny n I. Thanks for stopping by to check on us