Hey!!
 

Thanks Annie, Jujuan, Ally, Kate, everyone! Dad got discharged today!!!!

The turn of events happened quite quickly, somehow the Maxalon worked and dad's able to tolerate at least clear feeds now. But he has to be on morphine, maxalon infusion and lots of other meds the whole day. He vomitted again after returning home, guess its due to too much movement all at once. From discharge to home.. But I'm glad he's home.

The hospital recommended hospice home care, so the nurse will drop by at least once a week to check on things, replace his maxalon infusion bag, and prob just to ensure things are in check. Am grateful for this service and the fact that its provided free for us.

Annie: Thanks for all the advice. The palliative care doctors for my dad are really nice, and his own doc also gave us her own mobile to call at any time of the day. So far the meds are working, but still only clear feeds allowed for at least a mth. He also cant walk further than 20m due to his lung infection for at least a week.

Jujuan: Thanks for your analogy! I do believe in that as well, and yeah. Its quite a bit of struggle now with my health and everything, but thank God that constantly there's also blessings in my life, like getting to know this forum and all of u. =)

Ally: Yup. That neuro's sort of striked off my list. Lol. Don't intend to see him again, decided to go back to my original neuro and talk it out with him. If its really all in my mind, then i really dont understand how come it gets worse when I'm out enjoying myself. Lol.. My prayers sound similar to urs.. I just pray for strength and peace now.. For myself and my family. And also wisdom. And for them to know God, for He has been a great source of comfort to me, and I know how tough it must be for them to deal all these without knowing God. Everyone has their own struggles, and its not fair for me to say I have more on my plate than all of u. We're all good in some, and worse in some so I'd say thats why we're all here for one another! *hugs*

Kate and Simon: Thanks thanks thanks. I try and update cos I just dont want u all to worry about me. I wish u guys were all here and I could get big hugs from u all...

Last of all, yes, I really do think the prayers are working.. Lol...

:hug:

Oh Connie,

thats just wonderful news, I'm all teared up with happiness for you and your family!!!!

Sending you a hug, can you feel it.
How are you doing??
take care
Kate

Whoohoo Connie!!!:yahoo:

That is great news. Also, I want you to know that I admire you taking care of your dad....You are "honoring" your dad....and that is the first commandment with a promise....It speaks highly of your character and integrity.


God bless:hug:
JJ

Hey Connie,

That's wonderful news! You take good care of yourself and we'll keep the good thoughts & prayers coming.;)

Big Hugs,
Pat

Connie - what fantastic news!! Keep us posted as you can.
Sue

Hi Connie!
 

Back in hospital
 

Hi Everyone,

sorry havent been able to update or log in, dads back in hospital. =/ He was readmitted 3 days later after. He was discharged on Monday, but on Wednesday, he had vomitted four times through the day. We wanted to bring him back to hospital but he refused. It was very painful, seeing him in great pain, curling up, moving here and there, but we couldn't do anything. He only relented and allowed us to bring him back in on Thursday morning, as he vomitted even mouthfuls of drinks he took.

so have been literally spending 12 hours in hospital everyday by his side, as he wants people by his side now. Even if he didn't, I can't bear leaving his side as I really don't know whats up next.

am mentally and physically tired out, vented out my frustrations to a friend on Fri night, just couldn't stop crying. It hurts me to see dad in pain, and it hurts me to know that psychologically, he wants to end it all.

Its been a roller coaster, the doctor did an endoscopy on Friday morning, and managed to put in a food tube, this time leading directly to his small intestines, hoping that he can tolerate food this time round. We tried feeding him late afternoon the same day through the tube, and all was well except that dad kept complaining he's very full, even though we had only fed him 50ml of ensure. The nurses attributed it to the fact that its the first time he's having it through the tube so we didnt think too much of it.

The next day, on Sat, at 5pm just before we fed him, we tried aspiration. This time, we pulled out 450mls of black liquid, which shocked all of us. The doctor was called in, and the look on dad's face when he saw all that was pulled out broke my heart. There was blood in the liquid, which caused the black color, which also meant that its stale blood.

So feeding was stopped again, and we just kept drawing out liquids for the next few sessions (3hrs in between each).

Docs aren't sure what caused the internal bleeding, but since today, dad has resumed feeding, to try it out again. We're hoping that the bleeding was caused by the tube insertion and has cleared up. If this time round it doesnt work, it means dad will have to be put on drips and not have any food even through the tube.

Social worker came and tried to talk to mum and dad about the idea of hospice care, and this time round, dad was amazingly quite open to it. We visited two of the hospices, and chose one for dad. However we do not plan on admitting him just yet, want him home after his discharge this time round, unless the food tube fails.

Most importantly, all I want for him now is for the pain to be lessened, for him to be saved, and to know that Jesus loves him.

thank you everyone for all your prayers, I'm sure they're working somehow. And thanks for all your support and concern, I'm still sane!! Lol. Just need to let it out somehow I guess. Am seeing my neuro tomorrow, he's gonna try some treatments on me, discussing with him tmr. He disagrees with what the other neuro said about it being psychological, so he's a godsend. I nearly had a fall just now again, while getting into the car. Legs just gave way. Luckily mum held on to me. Weird how they give way. Two nights ago, the tendon or nerve near the butt cramped while I was walking and it was so awkward. Lol. Limped to the pavement in the hospital carpark, sat down and tried to stretch it. Took quite a while.

Anyhow, I'm really sorry I cant catch up with all the news here, am soo tired. Lol. Hands cramping up, needa go sleep soon. *hugs everyone* miss all of ya. Thank u so much!!

Hi Connie,

thanks for the long post catching us up on your news!!!
Sorry to hear your Dad isn't well again, it must be so hard to see him going through this especially since you aren't travelling to well at the moment.
Hope your neuro visit goes well,
take care, am thinking of you
Kate

Connie -

Thanks for the update. From your post, it is obvious that you are getting exhausted. BE CAREFUL! No one needs you in the hospital!!!

I'm glad your Dad is more receptive to hospice care. They are very good at pain management and really helped my Mom a lot.

Thoughts and prayers are with you.

Sue

Hey Connie,

Thanks for letting us know how things are going with your dad! I hope that it was the tube that had caused the bleeding and that his feeding can be continued without any problems.

I'm glad that he is feeling better about getting paliative care...The less pain he is in, the better he will feel.

I'm sorry about your fall! I agree that it does sound like you are tired understandibly...Try to get as much rest as possible, even though it's hard with all of the things going on!

Take care:hug:

Hey Connie, Thanks for taking the time to let us know what's going on. Sorry to hear about your Dad, but glad he's open to getting hospice care. The less pain he's in the better. They are so good at their jobs. Maybe you could just take a day off, go home and get a full nights sleep. Eat a good breakfast in the morning and then go to see you Dad. He would want you to take good care of yourself. Keeping the prayers coming. Take care!;)

Big Hugs,
Pat

Connie, I am very sorry about your Dad. I'm glad you have found some comfort and I hope he does too. My Dad's been gone for 13 years now and I can hardly believe it. He went through some rough times like your Dad too. You'll both be in my thoughts.

Annie

Hey
 

Hi everyone, thanks Kate, Sue, Nicky, Pat, Annie and all others who have kept up with this thread. Thanks for listening to all this, thanks for being such a great source of comfort.

Dad's still in hospital at the moment, and we've been doing our best to b there from morn to night. I love to see the smile on his face when he sees us. I love to hear him asking for me. I love to see him holding my hand too. Took a pic of that. =) Shall post it up later...

Dads now soundly asleep beside me, we're getting him discharged on Monday, and the home care hospice nursse will drop by on tuesday, just to make sure things are alright. We're planning still to keep him at home, as long as we can. The palliative care doctor explained that its gonna b v tough, emotionally as we'll feel helpless and cant do anything except to watch him basically wither away.

But I know, that I'll find enough strength through Him to get through all these. I'll prob just need to vent a little every now and then, but I think we'll get through it alright. =)

Thanks for keeping the prayers coming!!

Hi Connie,

Glad to hear your Dad's smiling when he sees you all, and that he's going home.

Will be thinking of you all, and vent away as much as you like, I'm sure everyone will agree we are here to hear you,
take care
Kate

Connie,

Your Dad is so very blessed to have such a wonderful, caring, and loving family. Being with him is the most amazing gift you could give...and his smile tells you very much he appreciates it and loves you.

Thoughts and prayers will continue to be with you. But do vent - and vent often. This is an extremely stessful time - and you must release that stress to stay strong for your Dad.

We're here to listen.
Sue

Connie
 

Just to let you know I have been following your thread and that Im thinking of you and your family.

Im so glad that it makes your dad smile when you go to see him.

I hope all goes well with his move back home and that you have good hospice nurses. The hospice nurses are great and are usually have much better knowledge and understanding due to their experience of dealing with patients like your dad.

Love to you and your family

Rach xx

Connie,
So sorry to hear about your dad, I have been out of touch for awhile. I am going through the same thing as you right now, my motor nerves are being damaged, with a second disease. My myasthenia screams on my emg & ncv, so they know I have both, just waiting for my new doctor to put things together.

Hey Connie,

I've not been feeling well and not posting much, but I want you to know I've been keeping you all in my thoughts & prayers. I hope your Dad does well at home. The love you all have for one another makes all the difference in the world. Take good care kiddo and vent all you want. We are always here for you.;)

Big Hugs,
Pat

Hi Everyone! Thanks for all the notes and messages.

I'm sorry to let everyone know that we had to send dad in 3 hours after he got home, by ambulance. His pulse rate suddenly shot up and he was shivering badly all over. He was already on oxygen, 3-4 but yet he felt extremHi Everyone! Thanks for all the notes and messages.

I'm sorry to let everyone know that we had to send dad in 3 hours after he got home, by ambulance. His pulse rate suddenly shot up and he was shivering badly all over. He was already on oxygen, 3-4 but yet he felt extremly breathless. He said he felt cold and his fingernails were turning blue. He was also extremely breathless though he was on oxygen. We thought it could be fever but his temperature was ok. I got so scared I called the ambulance only to be told it'll take 45 mins to reach my house. -.- Those 45 mins were the worst minutes ever.

Luckily dad did ok until the ambulance arrived, but when the paramedics took his pulse rate and oxygen level it was 141 and 89. His BP was extremely low, think is something like 60/90.

He was rushed to hospital, and when he reached hospital, his temperature suddenly shot up to 38.5 degrees (Norm's 37 degrees). After hours of wating at the ER, we were told he had a lung infection. So had to be warded again.

Dad was frustrated, and emotionally affected cos he didnt even get to spend one day at home and had to be readmitted. =/

So now its hospital day after day again. Do hope his infection clears, but doctor recommends hospice after this round. But we still hope to take him home...

Hi Connie
 

So sorry to hear that your dads attempt at going home was thwarted by the chest infection. I really hope that he catches a break soon.

I hope you are managing to get some rest in between visits.

Love to you and your family,

Rach

Hi Connie,

Sorry to hear your Dads return home was so short lived.

Thinking of you, you are all in my thoughts.
Sending you a big hug, and some strength!!!
Take care of yourself
Kate

Thanks!
 

Thanks Rach and KAte! Thanks for your prayers. Dad's still in hospital at the moment, and he's becoming more emotionally attached, and wants us here in the morning as early as possible. So everyday we basically spend more than 12 hrs in the hospital. Its ok, but sometimes its like fighting a war. Lol. Early today dad's tube got clogged somehow and wouldn't flush. We had to wait hours in anticipation while the nurses tried coke and water etc. Finally we won the battle and was able to let water pass through the tube. Phew. Else dad would have to go in for the procedure to reinsert the tube and I dare not imagine how he would have to go through the painful procedure again.

HEre are the pics I promised, of dad and me holding his hand.. =D

Connie,

Those are really beautiful pictures.

We never left my late husband's side either - for about year, literally, because it was touch and go for such a long time. You won't regret a moment that you spend with your dad - of course. I remember when Mark, my husband, went into hospice there were always at least three of us, often many more. They let us sleep on cots and reclining chairs. At one point I just crawled into the bed with him so we could hold each other and one of the nurses came and laid a quilt over us. That was one of the nicest things anyone has ever done for me. There were so many rooms of patients without any visitors at all, just people so sick, all by themselves. It made me think what a strange culture we had. So sad. I'm glad your father has you, I can tell by the picture how much you mean to him.

Ally

HI Connie,
I've been following your thread, though I haven't been able to post much. I can't think of anything to say except that you are in my thoughts soooo much. I love the picture of you holding your dad's hand. Those moments become more precious as time goes on. I was with my father when he passed and wouldn't trade that time for anything. To see the peace come over him gave me such absolute comfort.

You are a wonderful, wonderful young woman. Anyone would be proud and grateful to have you for a daughter, as I'm sure your father is.

Peace to you, Connie.

Hey Connie,

Sorry to hear your Dad's not doing well. It sounds like he is in good hands. I hope you are taking good care of yourself.;)

Big Hugs,
Pat

Connie,

I'm glad that you are spending this time with your dad, and I love the adorable teddy bear in his first picture. The picture of the two of you holding hands really touched my heart- it's a beautiful picture.

You have a wonderful heart, Connie. I was reading the thread about the man in BC who you were trying to help get the correct diagnosis. You are a real asset to everyone you come in contact with, and your dad, no doubt, is blessed to have you as a daughter!:hug:

You guys are in my prayers.

Dad's passing on
 

Thanks Everyone, for all your support and prayers for my family this past month..

I'm sorry to update that my dad passed away on 10th November at 7.55am. I'm glad to say though, that he passed on peacefully and with us by his side.

Its been such a busy week, with his funeral and everything else that has happened. Looking back, I'm really thankful that I had spent time with him at the hospital these past 1-2mths.

Really thank everyone for their love during this period of time.. You're all angels. =)

Ally: Yup.. He really meant a lot to me, I guess we meant a lot to him too. He made it so short for us that i think part of me still cant believe he's gone. I'll never regret a moment spent with him, but greedy me just wished I had more.. I can't imagine what people are thinking when they do not visit..

Ras: Thanks so much for your kind words.. I wished we had more pictures of him, but I'm thankful I got to be by his side towards the last 1-2 months of his life. I know that he's now looking down at us from heaven up there. Miss him soo much too..

Pat: Thanks dearie, for ur msg. He was in very good hands, and what his team of doctors and nurses did touched us tremendously.. I'm thankful for them..

Nicky: Lol.. Thats mine. I insisted he had something to hug at night. =) Thank you for your kind words.. I am thankful I got to take that picture. Its something to rem for a lifetime.

Hi Connie
 

I am so sorry to learn that your dad has passed away.

Just to let you know that I am thinking of you.

Love
Rach x

((((Connie)))))
So sorry to hear about your Dad, but I'm glad you were all able to be with him at the end.

How are you doing at the moment????
Iam thinking of you and all your family.
Take care of yourself,
Kate

Connie,

I am so sorry you lost your Dad. It must be such a comfort to you to know you were with him and he was not alone. Please take care of yourself.

Big Hugs,
Pat

Connie,

I am sorry to hear about your Dad's passing - but grateful that you and your family were able to spend so much time together filled with love for each other over these last few months.

Now, it is time for you to shift your focus to yourself to make sure you get through these next stressful weeks.

Take special care of yourself, Connie.
Sue

Connie,

So sorry you lost your dad. You and your family are in my thoughts.

:hug:
Ally

Connie, I'm so sorry your Dad passed away. I didn't realize it until someone else told me. I hope you and your family can take comfort in how full of love every day was with your Dad. I know how hard the loss of a Dad is; 13 years later and I still have difficult days. Know I'm thinking of you.

:hug:
Annie

Thanks
 

Thanks Rach, Kate, Pat, Sue, Ally and Annie.

Finally all the wake stuffs have been settled. I'm taking comfort too that I was able to spend his last moments with him. Though it all happened so quickly that I really wish there was more time. Thats the greedy side of me. =) I'm glad mum's doing okay too. I guess all of us take comfort in knowing that he's in a better place now, and does not need to suffer anymore. Best of all, he can eat whatever he wants to now. I do hope there are buffets up in heaven. Lol...

As for me, its been a pretty rough week. Right after the wake ended on Friday, I started feeling sick. Experienced extremely giddy spells, and was feeling nauseous, and started vomitting on Saturday night. Could see my dinner in the vomit. Lol... Finally went to see a doc on monday and got some meds. So literally slept the whole week away, am feeling much better now. I now realize that when i over exhaust myself, my limbs start trembling, its like they have no more strength and can only tremble once I try to lift them. Looks real ugly when they do so. =/ On the other hand, my GP gave me a very good suggestion, which was for my neuro to write my condition down on a piece of paper so that I could bring it to my GP or docs I see when I have other symptoms like the giddiness. Shall ask my neuro to do so when I see him this week or next.

Meanwhile, thanks for everyone's concern and prayers. :grouphug: am so sorry I havent been checkin in a lot, the meds make me too drowsy I literally wake up to eat then sleep again.