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zoohouse

Senior member
Joined
Jan 14, 2013
Messages
959
Reason
CALS
Diagnosis
07/2012
Country
CA
State
B.C.
City
Salmon Arm
So Tim had his pulmonary function test and was told he was functioning at 36%. I am so disappointed, and I can see the hurt in his eyes. We still haven't seen the Respiratory specialist, so I am hoping that he will have some good advice. I guess the DPS is out of the question, but will be looking into the Sip & Puff ventilator, as Tim has very strong muscles in his face. Yesterday when spitting his toothbrush water out, he nearly shoot the spit basin out of my hand. I am going to take that as something very positive.

One that note I will ask for prayers that we can find something to help him, and also to give me the strength to be the best support there for him. I left our home town Sunday night at 1:30am and drove the 7 hours to get him to Seattle in time for morning rounds. I was shaking I was so tired, and did stop once, have way along to take a nap. I was suppose to have a room at the Fisher house when I got here, but there wasn't one. I ended up staying in the room with Tim. They had brand new alternating air mattresses, but I must say that they were as hard as a rock, and I certainly didn't feel any alternating going on. I asked for a different mattress for Tim as he can't move in bed. I would like to know who is getting the kick backs for buying these beds, and would suggest that all the administrators sleep one night on their back on one, no turning allowed.

Well I shall get back to Tim, and see what else they have in store. He did get his teeth cleaned yesterday, and all looks very good. Also has gained 9 lbs. since July, so his diet is obviously working. His blood pressure is up, but I think that is because of him working so hard to breath.

Thanks all

Paulette
 
Oh Paulette

That is disappointing. Drive carefully on your way home - hope you can stay in Seattle an extra night so you can get some sleep.
 
I am so very sorry. What a blow to your hopes! Will pray that another door opens. Safe travels!
 
Oh dear, Paulette. You both must be so disappointed. Safe drive home. Yasmin.
 
They want to put a peg tube in while we are here, and we will be speaking with the respiratory specialist tomorrow. We will get a cough assist machine, and I will be asking about getting the trilogy sip & puff vent. So we won't be heading home for a few days. Going out with the recreational therapist tomorrow, and they will be adding the extra needed adaptations to his chair. Tim is amazing and is keeping such a good attitude. We played Bingo and won the final big pot of $10.oo, Whohoooo! Tim got a pulsating mattress today which is much better. The knee gatch on his bed didn't work, but I raised it up and found the loose wire. Well off to bed, another busy day tomorrow.

Thanks for the support.
Paulette
 
Oh Pauline, I can just imagine the disappointment, this disease never seems to take a day off!

Getting the peg done now makes sense, it's there and you go home with breathing and feeding aids in place.

I hope you sleep better to be ready for that long drive home again.
 
Oh Paulette,

I hope you get some good sleep before you have to make the long drive. I am praying for you and your husband.
 
So sorry to hear the news Paulette. I so wish I could do something to help all you CALS and PALS on here. But, please be assured that I pray for all of you. Kim
 
Sorry Tim and Paulette...I was really hoping he was going to get a DPS. What is the FVC cutoff for the DPS? But the good news is he will be going home with his Trilogy and peg and you won't have to worry about those things.
 
Sounds like you're keeping very busy, and moving in the right direction! Congrats on the Bingo jackpot!
 
So, Tim may get the peg tomorrow if there is a cancelation, otherwise we have to wait until next Wednesday. He is the perfect candidate for the sip & puff but we are told they may not get him one because we live in Canada. Because they think that we may not have expertise to handle one. I explained that we do have an RT in our hospital, but they will have to see if the VA will "trust" that he knows what he is doing. I am so frustrated, as we operate ventilators in our hospital, and Greg our RT is very qualified.
I am so frustrated as Tim did not get his shower today, and was only up in his chair with his socks on when I got there. It says that his shower days are Wednesday and Saturday evening, but they didn't do it then either. The first night that he was there they did not even come into the room, let alone turn him. When I spoke to the supervisor about it they said that they reported that they didn't go in because they knew I was exhausted from driving all night and then being up all day. So, his skin doesn't need pressure care because, I was tired?
Well I better not get started as I should be thankful for what we do get, I am just so exhausted. I feed him every meal, toilet him every time, and actually had to deal with his constipation, shower him myself, and settle him for the night. It would be so nice to see him up, and in his clothes when I get there in the morning. Well hopefully I will get some good sleep tonight. Thanks, again for all the support, and prayers.
Paulette
 
hospitals are awful! (sorry I know your are an RN...) the care required by a PALS is more than a hospital staff has time to do. when I took my husband to the hospital for severe constipation it was a caregiving nightmare similar to yours and I had to stay with him 24/7 and do everything. we both decided there and then that he would not be going back.
 
if you have to stay until Wed., could you check out of the hospital and just take a little vacation until then? a hotel would be nicer than the hospital if you have to do everything anyway! then you could site see a little too.
 
I hope things work out tomorrow. Got my fingers and toes crossed.
 
Well the good news is that Tim will be getting a Trilogy sip & puff vent. The VA normally rents them through a certain company who also does all the servicing and teaching, but they don't have a company in Canada. So the doctor said that they are going to purchase one for Tim, but we will be responsible for all the maintenance etc. That is fine with me, as I know that our RT can help me with that. Bad news is that it could take a month, but the team said that they were going to try and put pressure on the powers that be, as Tim's pulmonary function is declining rapidly. We found a mask that works better than the nasal pillows on his BiPap, and will be seeing the RT tomorrow about setting it to suit Tim better. I asked him to teach me how to access the controls so that I could manage it if needs be, but he refused. Said that he only a trained RT should manage it. I will have to talk with my local RT about that as well.

Tim had a traumatic night last night, as I didn't think to check his call bell to see if it worked, and of course I gave him some prune juice to help his bowels before he went to sleep. Well he woke up at 11:30 and had to urinate really bad, pushed the call bell and it didn't work. He pushed every button and managed to turn on all the lights, but no call bell. So he started calling for help, and according to him, he was able to yell really loud. He called for over 20 minutes, before a nurse was notified by another patient down the hall that someone was calling for help. This did nothing to help Tim's fear of me leaving him in the hands of other help.

We can't check out of the hospital and go to a hotel as Tim is a total lift, and weighs 220lbs. But we will go out on an all day pass, and sight see. There is another elderly couple here from Vancouver, so I think I will invite them along. So tonight I came back to the Fisher house for supper, and returned in time to see 2 nurses struggling horribly to get Tim in his sling, and into bed. I am afraid, I couldn't help standing back and watching, and finally I burst out in laughter. At one point they had hooked the sling on the side of his chair, and continued to try and lift him even though it was apparent that one side was not going to raise. I stopped them and unhooked the sling from the chair, and stepped back to let them finish. Well there he was hanging like Super man taking off for flight, with one leg bent up, and the other almost completely straight. I should have taken a picture. once they got him into bed, took off the sling and undressed him I took over. Tim and I giggled about that for some time. Got to laugh, or you will cry. I hope he has a better night, as his light is fixed, and he has a special quad bell that he can activate with his head. We shall see.

Paulette
 
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