Sorry I didn't update yesterday when I got back from Milwaukee....but did I tell you I HATE driving in Milwaukee. The start to the day wasn't too bad, but as the day progressed I just wished I was home. When we left at 11 I had thought I would have gotten there early to catch a bite to eat and possibly get in alittle early so I would be home for Ms Avrianna's 1st new season swim lesson. But no go! My 1 hour 15 minute drive ended up turning into 2 hours due to road construction in Fond du lac and taring in Milwaukee. I ran thru the hospital and made it there right at 1, whoo. The appt with Dr D'Adrea went well she was so happy that Danny is now on the Bi-pap all night every night and that the pt vest is working well for him. She is still concerned that is still is getting the pneumonia's but is alittle comforted that the recovery time is less (but none the less he is still getting them). With every pneumonia he gets more of a chance that he damages his lungs more and that the one (it only will take that one) that will take his life. So with that said and also the concern that Danny will "pause" with his breathing 1-2 times a day she brought in the tach nurse to sit down and talk with me, so I'm better educated with the whole thing. After see the trach and hearing the WHOLE process I'm still on the fence. I know, I know many of you would say what's wrong with you! I'm just not sure that these small episodes are warrant enough to change our life around. In some ways yes it will help Danny out but then in others ....constant suctioning, can't go in the water (he loves the water), his little voice will be gone. sigh, where it another foreign matter in his body that can lead to infection, and it's 2-3 weeks in the hospital for recovery. Even the doctor isn't totally satisfied that Danny is at the point in his life that he requires a trach....so I'm chalking it up to an educational thing and we'll see what this winter brings. Also Danny is having another sleep study done in the middle of October so we'll get the results from that and see where he sits with the trach. It's so hard to make this choice (and right now that what it is a choice) as there is soooooo much gray area. Dan and I have agreed that if that is what is needed we will go ahead with a trach but we've decided (as a long time ago I promised Danny I would never have a machine keep him alive) not to vent if that time ever came. He has had such a difficult life and to keep him here with me I don't think would be fair. If things were different and he could function like a normal child or if his cognition was there then this would be a different decision. But to continue his suffering I just couldn't do it (even though my heart would want him in my arms always!!!) Ok enough of that we are NO WHERE close to that so, that's enough! To continue on my day after the appt and meetings with the trach nurse I headed out the van, I LEFT MY LIGHTS ON!! So the battery was dead! ARGH, so I was feeling like a total putz and knowing it my own fault for leaving the lights on. I sat in the parking lot for 45 minutes before security came and gave me a jump. Then to deploy the lift, there must not have been enough juice in the battery as the lift was dead......GREAT! I had to figure out how to manually override the system to get my lil man in the van so I could GO HOME! The security man was so helpful, once he got there, and tried to help me out. While another 30 minutes later and we were in the van and I just wanted to cry. The drive out of Milwaukee was much better but due to the delay in leaving it put me in Fond du lac during rush hour in all that construction....so we sat there on the road watching TV as we were at a stand still for ever as I watch the gas gauge go into the red, oh no! I didn't run out of gas and got to an off ramp in the nick of time, took a deep breath and heading back home. We got a bite to eat with Dan and Avrianna before I came home (I wasn't cooking). Came home put my jammies on, grabbed a glass of wine and watched Grey's Anatomy. All my shows are coming back, Yay! Danny and I love to end the day rocking in the chair watching our shows at night, great unwind time! So my 4 hour, tops, trip back and forth to Milwaukee ended up being 8.5 hours, argh!!!!! Funny cute story though...on the way down I put on our van's TV headphones on lil man and put in Cars and he LOVED IT....he was talking and smiling the whole time. It was awesome to see him enjoying it.
Danny has been up since about 3:30 this morning due to the Bi-pap popping out and blowing in his eyes, argh. So I'm hoping he'll take a nap soon as Mr Dan (PT) will be here around 2 and he wants to take pictures of Danny in all of his equipment for the Danny info book the therapist made. Well it might be of a sleeping Danny if he doesn't take a nap, heehee! In about 2 hours I have Steve Lockhart, the gentleman that made Danny's big boy bed, coming over to go over some ideas he has for Danny's changing tables in the new house. I am so excited! The one in his bed room is going to be sooooo cool it going to look like....can't tell it's going to be a secret so you'll just have to come and check it out when it's done!
Another good note...Avrianna's swim lesson went awesome Dan said. Ms Stacy (the instructor) even said that she has 13 years old that don't swim as well as she does. She is wondering if we are interested in having her on a swim team. WAY TO GO AVRIANNA!
Have a great day and take care. I can only hope today is a better day for me :) I will try and update later!
Where Are You Christmas?
1 day ago