Old 09-10-2015, 04:36 AM #1 (permalink)
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Default Tim is sick

Monday evening Tim started complaining of abdominal pain. This would be the forth time with the same symptoms, and I had managed them myself the last 3 times. This time even after having 2 BM's he continued to have pain and nausea. I had aspirated everything out of his stomach via his feeding tube, and then gave him some liquid antacid as suggested by his doctor the week before. He started getting very pale and it was obvious after 2 hours that I had to take him to the hospital. Thankfully the ER doc was one that I had great respect for.
I only recognized 1 nurse in emergency out of 4 which really surprised me. I had worked there 25 years and had seen very little turn over, and I took my LOA just under 2 years ago.
An IV was put in and blood work taken with some difficulty as his veins were very flat. He wasn't sweating, but then he hasn't been able to sweat in over a year. No fever, BP good, and pulse oximeter 100% in spite of his cold and blue hands. The doctor did an ultrasound and found that his gallbladder was very full of sludge, and the wall had thickened, and some fluid had formed in the wall of the gallbladder. His White Blood count was very high, and his lactate indicated that he was starting to be septic. He was given Hydromorphone and something for the nausea, only then did he stopped moaning. On 2 separate occasions I was asked if he was able to talk or was mentally impaired. I chuckled slightly and said he was brilliant, but in just so much pain.
The doctor wanted to admit him for IV antibiotics, but I told him that I preferred to take him home and care for him there as I did not believe that they could manage his equipment, and he would most likely pick up something else while in the hospital. They were already holding several admissions in ER, and I would never be able to sleep there, and I wasn't about to leave him.
So we got into the hospital at 1am and left at 10am with IV bags, IV antibiotics, IV narcotics and anti nausea medication. I had not had more than 4 hours sleep in 48 hours so I was finding it almost impossible to think. Thankfully Tues. was the day that my nurse friends come in to do Tim's care for me, so they took over when we got home and I went to bed.
He is doing a little better today, but is still needing pain medication at times, as well as extra fluids. He is not liking his tube feeds, and is reluctant to drink much, so I went back to the hospital and picked up some IV fluid with some calories in it, and started giving him a couple of litres. His urine output is scary low and is as dark as tea, it was tested and is not showing any infection at all.
I texted his specialist who was on holidays and she texted me back some suggestions, but did not think surgery was a good idea in concurrence with the ER doc. So I guess it is a wait and see thing. He was actually running a temp tonight, but I think that was a good thing, exactly what the body should do.
When he gets over this infection, I am looking into some cleanses that might clear that sludge out. The ER doctor said that it is not unusual to see sludge develop in a person who has lost a lot of weight in a short period of time.

Good news, Tim just called to use the bottle, and he passed a large amount of normal coloured urine. I was so excited that after I showed him the colour I went to put the bottle down so that I could cover him up, missed the table and it fell splashing all over the floor, the blob of toilet paper was plastered on the wall. I didn't care and didn't even mind that in the semi darkness I stepped in some. He is actually looking a lot better and he doesn't have any pain. I think the antibiotics are finally kicking in, and he is even smiling again.
He was actually quite funny today, as he is a very cheap drunk. I gave him the lowest does of the Hydromorph and he started slurring and saying the silliest things. When I told him I actually had a really good sleep that night he said, "except when you were awake, HA HA HA!" I snorted my coffee because he was so pleased with what he thought was amazing humour. You had to laugh because he was so silly, and genuinely thought what he was saying was funny.
I pray that this is the turning point with this episode of gallbladder inflammation. Now I have to find a natural way to deal with this so that it doesn't keep happening.

Paulette
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Old 09-10-2015, 04:42 AM #2 (permalink)
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Default Re: Tim is sick

Wow Paulette I read every line of this post nearly holding my breath the whole way!

You and Tim are amazing and constant source of inspiration to me. If anyone can get this gallbladder cleared up it will be you. Sure you need the doctors and hospital to give you the equipment and meds you need, but for our PALS there is no place like home with a competent CALS.

Please keep us updated and send Tim a hug.
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Old 09-10-2015, 07:59 AM #3 (permalink)
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Default Re: Tim is sick

Paulette, talk about a great slant on life! Tim is so fortunate to have such a skilled CALS.

I am so glad that you took the bottle and paper incident well and that Tim is doing better. Wow.

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Old 09-10-2015, 09:05 AM #4 (permalink)
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Default Re: Tim is sick

Paulette, you are really amazing and such inspiration. I am glad you are both ok.
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Old 09-10-2015, 10:25 AM #5 (permalink)
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where would we be without a sense of humor! !
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Old 09-10-2015, 11:29 AM #6 (permalink)
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Default Re: Tim is sick

Paulette, what a story! So glad things are looking up ( or down if you keep spilling things!)
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Old 09-10-2015, 01:14 PM #7 (permalink)
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Default Re: Tim is sick

Paulette you are amazing! Tim is so lucky to have you. I wish I was a real nurse like you--sure would make things easier

Maybe you could just keep him on the pain mess for comic relief!
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Old 09-10-2015, 02:30 PM #8 (permalink)
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Default Re: Tim is sick

Paulette,
You are such an inspiration to all of us here! You are an amazing caregiver and Tim is so lucky to have you!

Hugs to you both,
~Kaye
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Old 09-10-2015, 07:41 PM #9 (permalink)
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Default Re: Tim is sick

Paulette,

Glad things are looking up again. I am elated for the opportunity to learn from you. I especially appreciated your outlook about not staying at the hospital and heading back home enabled with the appropriate supplies. My best to both of you...

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Old 09-10-2015, 07:47 PM #10 (permalink)
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Default Re: Tim is sick

Tim is pretty sleepy today and requested his bipap on so that he can sleep while in his chair. He hates being in bed, and is pointed to see out to the tree with the bird feeders. We have a large female Pileated woodpecker that comes a couple of times a day to feed on the suet block. He loves to watch her, and the male that comes by as well. We also had 2 chickadees and 2 nuthatches fighting over it the other day. Tim is the amazing one, as he never gets grouchy and is always so thankful for any help he receives.
My son and wife just called and said that they are coming the 300 miles and will be hear tonight. I told them I thought that he was getting better but they wanted to see Tim. It is wonderful that they love him so much even though he has only been in their life for 5 years. We feel very blessed. I have all the equipment I need here at home and anything I don't have the hospital will supply. Several of my nurse friends have already come to give me a break.
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Old 09-10-2015, 08:24 PM #11 (permalink)
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Prayers for continued recovery for Tim and a restful night for both of you
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Old 09-10-2015, 09:49 PM #12 (permalink)
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Default Re: Tim is sick

Likewise, Paulette, all best wishes to Tim from me & Sean--make sure you get more sleep!

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Old 09-11-2015, 05:14 AM #13 (permalink)
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Default Re: Tim is sick

My son and DIL got here and are always so helpful. Tim only has one more dose of each of his antibiotics due in the morning and I will take out his IV. He is still not quite where I would like him as he is still getting bouts of fever. I am giving him tube feeds now and he is mostly tolerating them, although it isn't as much as he was getting before. His hands and feet are more puffy than usual, so I am playing a balancing game with his IV fluids, and urine out put. He seems to be alternating one small void that is as dark as tea and one that is a larger amount and straw coloured. Both of his knees where quite hot to touch, but he denies that they are painful, and his left hand and arm looks sun burned, and hot but it is not the one with the IV in it. I am hoping that this is resolved in the morning if not I will have to take him back to the hospital. He just isn't reacting the way that most do and I am sure it has to do with his ALS.
Tonight as I was doing his night care I noticed fasciculations on one side of his face. I am trying not to read too much into it, but for him that usually means that that is the next muscle to go. I hate it, because we have both decided that once he can no longer make a seal on his mouth piece that we would let the disease take its course, and he would not be getting a trache. This is getting way to real for me, as it is easy to think that we would just keep on going for years with him using the sip & puff. Reality BiTES!
Well I am off to bed and hopefully will fall asleep quickly. Thank you all friends.
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Old 09-11-2015, 07:30 AM #14 (permalink)
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Default Re: Tim is sick

Oh Paulette, I just want to give you a big hug!
Thank you for seeing Tim through this horrible gallbladder stuff.
I had problems my whole pregnancy with our eldest and had my GB out when she was 6 weeks old.
Pain from GB problems is so bad, after dealing with it through pregnancy (I battled as much as I could without meds) I felt giving birth was simple as, so simple I actually fell asleep on the Labour table!
Poor Tim, I so feel for him. Very very glad it has settled.
Paulette I think the words 'trying to not read too much into it' are synonymous with this terrible thing we all live with. It's just not right, one thing immediately after another.
As you deal with watching the fasciculations, please know our loving God is holding you in His hands.
God bless you, lovely lady, Janelle xx
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Old 09-11-2015, 04:35 PM #15 (permalink)
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Default Re: Tim is sick

How has today been? I'm so hoping you didn't have to land back in the hospital but I'm so glad your son and DIL are there to help out.

Many thoughts of you both as I send you some strength and love
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