Connie, praying for you and your family. You are an amazing woman and the strength is there especially when you need it most. Thinking of you often. Take care ~ Melanie

Heyyyy!
 

Hi Kate, Erin, Pat, Sue, Melanie and Everyone!!!

Thanks so much for all the love and encouragement and prayers. The prayers worked! At least they seem to be working now... Lol...

Just came back from the hospital, stayed the whole day there as dad's conditon was a little unstable. So kept watch by his bedside.

Things went like a rollercoster since Wednesday. Met my dad's doctors and surgeon, both of which said that despite the teleconference they had on tues evening with other doctors, none could tell what the blockage was. So they had they to rescan him on thurs morning, with some special scans.

They did so, and on Friday, we were told they still couldn't see anything! Lol. It was part of my prayers answered. So the surgery was not critical anymore, and they tried letting him take in liquid foods through the food pipe that was inserted earlier. (funny how u can draw out and put in through the same tube =X) They did bout 5 feeds that day on friday, and we thought all went well as dad still did not vomit.

However, on Sat morning when we called him, he said he vomitted at 11pm after we left. -.- So he was told to be NBM Nil By Mouth again (but actually is nil by tube too). Went to see him on Sat morning (at bout 10+ am) and and around 1pm, he puked again. This time round, the liquids had a foul smelling smell, and was black -.-. We thought it was the herbs he took 2 weeks ago, as it was black, but was later told its blood. So apparently, his intestines arent working well, theres an infection and is bleeding, which should be the reason why everythings accumulating in the stomach. The doc admitted that there may still be a slim chance that all the scans missed the blockage (u know machines always have this 0.01 chance at least of missing someting), but for now it should be that his intestines or guts are not moving to digest the food. =/

So I got the doctor to put him on suction again (to suck out everything in his tummy as vomitting aggravates the holes in his oesophaegus and also his condition), and they sucked out approx 200ml of black gooey liquid. Theres more though, and suction is gonna be ongoing.

Initially we thought he could be discharged on Sun or Mon, but now it seems until they solve the mystery of undigested food, hes going to be in hospital for weeks. Doc did mention that if nothing works, they're gonna to have to operate and see what exactly is happenin in there. I really hope that doesnt happen though.

My emg on the other hand, turned out pretty controversial. Lots of polyfasics, lots of giant motor units, and some other terms which I forgot. The new neuro said it shdnt be ALS or MND, but the other neuro insisted its MND, PLS at least. The former said I need to learn to relax my muscles, which probably caused my hyperreflexes and also my giant motor units and spasticity. I then asked how do I relax muscles? He said.. ooh. Relax ur mind. I simply ignored him. I didn't know that one can change emg results by being erm.. not relaxed? So I left it up to them to fight it out and let me know. I simply cant be bothered at this point. All I know is that theres something seriously wrong. Locally, one orthopaedic consultant, one neurosurgeon/neurologist has confirmed that its MND, but one neurologists says its not MND, just stiff muscles caused by my MIND. Overseas, I have two neurologists confirming that its MND. Sigh. Why do they study the same thing neurology, but come up with different diagnosis!!!! It confuses the patient. Anyway I cant be bothered, so shall stick to my orginial neuro and listen to what he says after he finishes arguing with the new neuro. Lol...

I'm glad I got the strength to pull through, thanks to your prayers and God. I got thru without losing my sanity. Lol. Had few headaches this week, cramps, aches, but other than that, I'm happy to announce, I am still SANE!!!

Dad's doctor requested to see the whole family at 830am on Monday morning, I don't know what kind of news she's gonna break to us now. -.o all these doctors requesting to meet us makes me feel uneasy...

I miss all of u. Sorry I cant keep up with the posts. Spending ev day in hospital nowwww. :hug: But mail me individually if u have something u want me to seee ok!!!! :grouphug:

Hi Connie
 

So sorry that your dad is having to go through all of this. Im sending positive thoughts your way.

What a nightmare for you with the diagnosis! Doesn't fill you with confidence does it. Im so sorry that you have this to battle on top of everything else.

Relax your muscles! Best advice Ive heard yet! How long was he at medical school to come out with that little gem! I a firm believer in only telling the patient what you know, not what you think you know or just making something up because you dont know what to say.

Hang on in there Connie Im rooting for you!

Lots of love and Hugs
Rach

Hey Connie,

I'm so sorry you are going through all this. I hope your Dad's doing better today and the news is good on Monday. I will keep you all in my thoughts & prayers. Just keep hanging in there kiddo...Oh yeah, and 'relax'!;)

Big Hugs,
Pat

Hi Connie!
 

Hi Connie,:hug:

Still thinking of you your Dad and the rest of your family and all you are going through at the moment. I hope you get some answers on Monday.

Ah dear Doctors can be frustrating can't they. When I first approached my gp regarding my muscle pain, he put it down to lack of excercise!!! I just nodded feebly and thought well if thats what you want to think, then go for it, I know its not. They don't seem to remember that we know our bodies soooo much better than they do.
I hope your neuro sorts it all out for you.
take care, thinking of you
Kate:hug:

Hey Rach, Erin, Pat and Kate, thanks so much for keeping up with all the news. Just got back from the docs appointment, and yeah, not exactly good news again. My dad's doctor has gotten my dad a palliative care team and met them today for the first time. Just googled and found out that palliative care's brought in for people with "life limiting illnesses".

Docs not very optimistic about Dad's condition. The update was that his gut is the culprit of it all, its not moving. Its very slow, causing all the build-up in the stomach. Sort of to say, its paralyzed. Now they're gonna do a endoscopy to see if there really isn't any blockage, and to insert the food tube directly into the intestines instead of leaving it at the stomach/gut area. So hopefully after this, Dad can feed through the tube. And hopefully, a miracle will occur and his stomach muscles start moving again. Then they can remove the tube and let him feed normally. If after weeks to 2mths, his stomach muscles still do not move, then we shall have a peg put in directly to his intestines.

However, all these are in the optimistic way I guess. As he has had an episode of intestinal bleeding before, docs have warned that if bleeding occurs again, it could be unstoppable and we could lose him immediately. Its hard to say, he can have a few days to weeks, to months. It all depends on his progression over the next few days, how much he weakens by day. I guess one can never prepare enough when losing a loved one, and I don't know what I'll do when that time comes.

Thanks for all the prayers, thanks for listening everyone, to my rants. It helps a lot.. Gotta run to hospital now. Miss u guys. Thank you all u sweeties! :grouphug:

Hi Connie
 

I admire your strength and determinantion. I dont know If I would be as remotely brave as you faced with the situation you are having to deal with.

Words seem so useless to express the sincerity of the sentence "Im thinking of you and your dad and the rest of your family". I wish I could just see you and put my arms around you.

You look after yourself.
Love
Rach:hug:

Connie- -

You are NOT ranting!! Dealing with the issues that you are dealing with are the most difficult things a daughter will EVER do for a parent. (I know, I've been there.)

And yet, somehow we find a way to keep it together while we are in the midst of the crisis. I would like to express a concern for YOU, though. While going through this with your Dad, you are mustering ALL the energy you have. Your determination and adrenaline will get you through this - however long it is and whatever the outcome may be.

But, be very careful of your own health. Caregivers / providers are always at great risk when the crisis is over....and you, dear Connie, are too precious to have a health crisis of your very own!!

Thoughts and prayers will be with you and your family,
Sue

Connie
 

Hey Sweetie,

I'm so sorry the news is not good. I've been through this as well. Please take good care of yourself. You need to remember to eat and rest. We all love and miss you. I am keeping you all in my thoughts & prayers.;)

Big Hugs,
Pat