Sunday, May 31, 2009

A Lovely Boring Day

Apart from mom's stomach PEG tube springing a major leak early this morning, today was blessedly uneventful. Mom is looking better, less tired, although she hasn't been sleeping at night nor in the daytime. Maybe she had more than enough sleep in the ICU!

She's having some problem digesting her feed. Tomorrow the Dr will give some probiotics - maybe the cause is as simple as the antibiotics having wiped out all the bacteria in her stomach and intestines. I really hope so. Otherwise this may be a serious problem. She hasn't had much nourishment since she was admitted a week ago.

Her lungs are still improving. She's hardly wheezing now. This is such a miracle! They've reduced her medicine - Combivent and Mucosolvan for the lungs. She's still on antibiotics though.

As she was more alert today, we had a movie marathon : mom and I watched three (three!) Arnold Schwarzeneggar movies in a row! That's one too many... phew!

Hope she manages to get some good sleep tonight.

Saturday, May 30, 2009


Mom had a nice restful day today. The whole afternoon was boring, which is a good thing!

She still needs to have phlegm suctioned out of her lungs, and she's on antibiotics, antifungal, vitamin boosters, thyroid tablets, and lots more. She is still weak but thank god she has no new fractures, no pain anywhere.

She's talking less, and mumbling - very hard to understand her. But she hears us and is very responsive.

She spent the whole afternoon wide awake, watching TV! Then fell sound asleep at dinnertime when the family came to visit. Well, she needs the rest.

Hopefully, tomorrow will be a blessedly boring day too :)

Friday, May 29, 2009

Still more good news :)

Mom is completely off the ventilator and breathing on her own today.

She is off sedative so she is awake. She's trying to talk to us but her voice is weak and hoarse (Darth Vader sounds like an angel compared to her right now).

This is a blessed recovery. She is a miracle! Her doctors are all jubilant!

However, she is very weak, and the doctors are very concerned about her picking up more infection.

She will be transferred to the ward later this evening. She be placed in 'isolation' room where all visitors MUST sterilise their hands and wear a mask.

Visitors are actually not encouraged right now. Please give her some time to regain her strength and alertness. She is so disoriented, she could not even remember my name! She must be wondering who is this strange person squeezing my hand and kissing me?! Hahaha :)

If you'd like to visit and comfort us, you are most welcome to come over to our home. Just call first to make sure that we are around. Or we can meet you in Starbucks at Pantai :)

Thursday, May 28, 2009

More good news

The lung specialist Dr Ravi ordered a CT Scan today to get a clearer picture of the condition of her lungs.

Surprise, surprise! They are not as bad as expected!

There is pneumonia, but not so much. There is infection from the aspirated vomit, but also not too bad. There wasn't much 'damage' fom the stomach acid either. In fact, the more serious issue is mom's Multiple Myeloma, not the present lung infection.

Dr Ravi also said that the machine readings show that mom's lungs are flexible and functioning well, not stiff or scarred. He's quite confident that she can survive without the ventilator. She does need an additional antibiotic though : Moxiflax... something. This is in addition to the Meronem.

Then I braced myself and asked him the big scary question : will she survive this crisis? His diplomatic answer is "Well, anyone who requires a ventilator is considered critically ill. But she can come off it tomorrow, and then you'll still have to fight the myeloma. I think her lung infection is not the most serious thing."


Oh what a huge relief. I know the multiple myeloma is serious, but we have the miracle drug Lenalidomide. Apart from the shingles, mom seems to be tolerating it well. Hopefully, once she recovers from the lung infection and is stable, we can re-start the Lenalidomide. I must get Dr. Rajbans to speak to Dr. Puru tomorrrow and plan this out.

But first, please pray that mom can cope well without the ventilator. They will remove it tomorrow morning. If she has difficulty, then they will immediately put it back on.

This is better than what we dared to hope for. Mom is a miracle. Thank you, God!
Thank you to all who have been sending prayers and love. It really makes a difference.

Wednesday, May 27, 2009

Some Good News

There are signs of improvement, thank God.

Let me explain ; when we made the decision to put mom on ventilator, the risk is that her own muscles will be inactive, and in time, they will weaken and she may never be able to breathe on her own again, never be free from sedation, never be conscious again. We took the risk because she was in a state of extreme crisis.

So she was sedated and the ventilator tube was inserted into her lungs. She was under two types of sedative : Dormicum, which puts her to sleep, and another one that is a muscle relaxant which causes her to be temporarily paralysed.

They have been gradually reducing the dose, and today, mom is no longer on the muscle relaxant. This means that she is breathing on her own together with the ventilator. That's the first good news :)

Second good news : her heart is stable now, even after all that she has been through! She was on two 'heart tonics' as her blood pressure was sky high and pulse was racing. Both heart tonics have been reduced to a minimal amount and she is still doing well. They will stop that tomorrow. Wow, what a strong heart she has!

Now that her heart is doing fine and blood pressure is back to normal, they plan to remove the ventilator completely tomorrow and see if she can breathe on her own. If she can, they will stop the sedative and allow her to wake up. Once she is free from the ventilator, we can plan to move her into the ward and fight her infection from there. That's the 3rd good news :)

This is wonderful progress. God is really taking good care of her, and her incredible fighting spirit is just amazing!

However, she is not out of danger yet. Her lungs are still badly affected. Today's x-ray showed that the lower part of both lungs are damaged and infection has developed. This is still at a critical stage. The doctors are worried. If it was normal pneumonia, they know what the germ is and how to fight it. But this is from the vomit, so it could be anything.

The next step is to do a lung scope. While the ventilator is still on, they can easily put a scope into her lungs and collect a sample of the gunk in there and see what germs are breeding. Then only they can prescribe the right medicine to whack those fellas and clear mom's lungs.

Now that she's on light sedation, she can move a bit. When we were there at lunchtime, as usual, I would check everything and try to adjust her position, exercise her hands and feet. She usually groans and glares at me. Yesterday, she was completely out, so no response at all. Today, as I moved her, she fidgetted on her own!

She half raised her hand. She turned her head away. Yay, it feels so good to see some "sign of life"!!!

Hahaha, this is layman talk. The doctors would say that the machines are showing her signs of life. And she's not in a coma, she's just unconscious from sedation. But still... there's nothing like seeing her move that raised our spirits. We miss her voice, even her groaning. So it's such a joy to see even some small movement.

Please continue your prayers, and let's help her through this.

If you'd like to visit, you are most welcome to. However, they are very strict. Visiting hours are 12 - 2pm, and 6 - 8 pm. Only 2 visitors are allowed in to see her at one time, so please don't stay too long.

Every visitor, even healthy ones, will naturally bring in some germs, so please take care to sterilise your hands before you go in. Mom is very delicate and her immunity is low.

The ICU is on first floor, Pantai Hospital.

Tuesday, May 26, 2009

Stable for now

Mom is on life support so she is stable.

She is kept sedated so that the ventilator can force air into her lungs. If she is conscious, she will fight this.

Throughout the day, her vital signs have been stable so the dr has been gradually reducing the sedation, the blood pressure med, and the amount of oxygen being pumped into her lungs. And mom is still stable. So far, so good.

The real danger now is her lungs. The vomit will cause serious infection. The gastric juice may cause damage. We will only know how bad it is when they take x-ray tomorrow morning. If it is too bad, she will not be able to breathe on her own. This means she will need the ventilator, and therefore cannot come off the sedation. We may never see her conscious again.

Hopefully, her lungs are not too badly affected and she will be able to breathe with the aid of normal oxygen mask. That would be the miracle to pray for.

Another problem is her stomach :( she is less able to digest and absorb her feed. That's why she vomitted last night. This could be due to her overall progressing weakness and plain old age.

The anaesthesist looking mom is a very senior, very highly skilled doctor: Datuk Dr Damodaran. He took care of her for all the surgeries so he is well aware of what mom can tolerate, and how delicate she is. He will reduce the sedation very, very gradually so that mom can adjust with minimal shock. He said to take it one day at a time.

So far, let's focus on what is positive : mom is stable, her vital signs are good, and she has incredible fighting spirit.

If you'd like to visit, you are most welcome to. However, they are very strict. Visiting hours are 12 - 2pm, and 6 - 8 pm. Only 2 visitors are allowed in to see her at one time, so please don't stay too long.

Remember, Mom is sedated - it looks like she is unconscious. She can hear you, but she will not 'wake up' and talk to you. However, I am sure she will know you are there, so just come and be with her for a while.

The ICU is on the first floor. Mom is in room 103.

Please keep praying fo her. She needs all the help she can get right now. Pray for her lungs to recover. Pray for God' grace and mercy. Thank you.

Please pray for mom

Mom was doing better on Sunday, until about 7pm when she developed slight fever. It came down with Panadol.

The whole day on Monday, she was doing much better. Wide awake and watching TV. Well rested. No fever, just blood pressure is a bit high : 184 / 80.

In the evening, the blood pressure was stil high and we started to be concerned. We checked with her Dr (Dr Rajbans at Pantai) who said to just moniter her first. If her blood pressure is over 200, then only bring her in. Still no fever, still alert and responsive.

Then at about 10.30pm, her temperature went up a bit. By 11pm, it went up bit more and we gave Panadol, and decided to take her to hospital, just to be safe. Called ambulance.

About fifteen minutes later, she vomitted. Then she seemed to have difficulty breathing. The ambulance arrived and we bundled her off to Pantai.

At the A&E, the dr said her condition is critical. We were surprised. Apparently, when she vomitted, she aspirated and the vomit went into her lungs. This is cos she cannot control her throat muscles - this is why we put in the stomach tube in the first place. She cannot swallow. It goes into her lungs. The stomach tube bypasses that.

Now all the vomit and gastric juice has filled her lungs! The doctors took x-ray and saw that it was quite bad. Meanwhile, Mom is struggling for breath, and getting more and more tired. They gave antibiotics, nebuliser, steroids to minimise the acidic effect, and tried to suction out the vomit. Mom still struggling.

The best option is to put her on ventilator, and sedate her. This is the only way she can breathe. Problem is, she may lose the ability to breathe on her own. But we can worry about that later. One step at a time: The immediate thing is to ease her breathing before she goes into cardiac arrest.

Poor mom. We were sent home at about 2am. All in shock cos everything happened so fast.

Now we are praying that there will be no news from Pantai until morning. No news is good news.

Well, although her condition is critical, mom has a way of surprising us. You never know with that lady. her determination is in a league of its own. By now, she should be sedated and resting, fighting the infection and hopefully the healing has begun.

This part of her journey is now between her and God. We can only pray. May angels be with her, bringing her comfort and peace. May God be gentle with her, and may Mom's own will be done.

Bless you, Mom. May great, great Blessings be upon you.

Saturday, May 23, 2009

Not quite settled in yet

Mom came home yesterday, tired out from the journey and being carried upstairs. But she was unable to rest properly. Either she's too tired, or constipated or just disorientated.

She doesn't realise that she is home as she's not in her own bedroom. We've set up the room next to it for her. She needs Bena there at night, Dad won't know what to do if anything happens.

She's alert, asking all kinds of questions - that's a good sign. But she keeps on groaning. She dozes off for only 5 - 10 minutes, then her eyes open and she starts groaning again.

She says no pain. Temperature, blood pressure is ok. Hopefully, she'll settle down.

Thanks Uncle Raymond for your warm welcome! Daryl is here for the weekend, visiting two aunties at one go. Aunty Sweet is recovering from an unknown virus.

Friday, May 22, 2009

Yay-Yay, Mom comes home today!

Mom is doing well, so she will be dischaged today at about lunch time.

We are so excited! Her room at home has been cleaned and Dettol-ed a dozen times already :)

Although she's not always lucid and coherent, there are spells where she is suddenly clear. These are the amazing moments we cherish. The night before last, at abt 3am, she suddenly called out "Bena, I can't sleep." Sometimes, she will ask "what time is it?" She once asked Wati "What time are you coming tomorrow?" Once in a while, when we ask her how she is, she'll reply "alright la" but most of the time, she doesn't reply.

There are also a lot of times where we cannot understand what she says. So if you come to visit, please expect that she may not respond to you. She gives me a sour look most times, but then she'll hold my hand tightly and I know she's still glad I'm there.

Ok, got to rush off now. We are compiling a long list of questions to ask the dr - trying to anticipate all the various types of emergencies that may happen, and what we should do!

Please call first if you'd like to visit mom at home. I think she should be settled in and rested enough to receive visitors from Saturday evening onwards. Our home tel is 7956 6526.

Wednesday, May 20, 2009

Mom is in top form!

Oh, she's in excellent condition now. She's alert and speaks a fair bit, asking the nurse for the time, telling the physio to stop (in English as well as Malay!). Although sometimes, she slurs and doesn't speak clearly, and sometimes, her mind wanders so she doesn't appear to make sense - but at least she's talking and curious. Oh, it's such a joy to be with her like this :)

Her shingles is drying up very well. Still got UTI and high blood sugar. But much less pain - I think the miracle drug is working its miracle.

Hopefully, tomorrow's blood test will clear her and she can come home on Friday.

Monday, May 18, 2009

Mom's getting better :)

She slept well last night and looks much more refreshed today. Dr. Rajban says her haemoglobin is a bit low (9.2) so he'll gve a blood transfusion tonight. Her albumin level is also low, and this causes swelling and water retention.

She managed to speak up and tell the physio to stop exercising today. And she raised her right hand to shake her Dr's hand. Didn't speak to the rest of us, but she knows what's going on.

Then on Thursday, when she finishes her one month's supply of the miacle new drug Lenalidomide, he will do another blood test. If all is well, she can come home on Friday!

She was admitted on 15th April. Today is 18th May. It's about time she came home :)

Sonny has been entertaining us with his records! We started to keep our own daily records as the nurses' are not always accurate. We write down what time mom gets her feed, medicine, everything. But when Sonny is the one looking after mom, he writes comments like :
2.45 Exercise time. Went jogging.
Another time, it was "Did gymnastics"
Last Saturday, he wrote "Forgot to bring swimsuit so no swimming lesson for mom."

Sunday, May 17, 2009

Mom gets second dose of IVIG

She's supposed to get this once a month to boost her immunity but because she has constant infection and fever, Dr Puru said to give this every three weeks. Mom got it last night, and this morning at abt 6am, her fever shot up to 39 degrees!!!

It has come down now, thank God. Her temperature is back to normal and she's sleeping a lot. She's been sleeping a lot more than usual this week. Maybe she's jsut getting weaker, maybe she's getting her much needed rest.

Her shingles are improving too. I think we can plan for her to come home soon. She's been in for over a month this time.

Wednesday, May 13, 2009

Infections getting better

Mom's kidneys are back to normal. She still has UTI and fever, but not as bad as before.
Her blood counts are ok.

So after brief consultation, her drs are going to increase the dosage of the Lenalidomide to daily, instead of alternate days.

The shingles will have to run its course, and the patch on her back will take time to heal as she is lying down the whole time. Thank God she's not in too much pain :)

Monday, May 11, 2009

More alert now

In spite of all the complications and side effects, mom is actually more alert these days. She's talking more although her words are often unclear. At least her voice is loud and strong.

Here's a list what she's having :
Urinary tract infection
Skin - dermatitis
High blood sugar (she's on insulin)
Constipation / diarrhoea

She's on so many kinds of antibiotic, anti-viral, anti-fungal that I can't even remember them all. The good news is that her kidneys are improving, she has no new fractures, and when we ask, she says no pain.

Dr. Puru has reduced the dose of the miracle drug Lenalidomide to 5mg every alternate day. Hopefully this speeds up mom's ability to recover from all the side effects. Then we'll up it back to 5mg per day. Dr. Puru is also suggesting that momgets the IVIG (intravenous immunoglobulin) once in 3 weeks instead of monthly.

Well, just treasure every moment with mom and try to ease her pain and discomfort day by day.

Saturday, May 9, 2009

Mom has shingles

Mom has developed shingles :(
Our Dr didn't diagnose this until yesterday when we asked for skin specialist to come! He thought it was bed sores. Sigh...

Dr Puru says this is a sign that the Lenalidomide is too much, and she wants to reduce the dosage until mom recovers from shingles. Mom's blood sugar is still high so she still needs to have insulin.

On a happier note, mom's kidneys are improving and she is more alert and speaking more.

Tuesday, May 5, 2009

Suspected infection

The new drug is bringing down her platelet count and causing some skin itchiness, dry eyes, constipation.
But more serious, is a suspected UTI. There is something that is affecting her kidney function. Her urea level has been going up although she is passing urine. The dr has sent urine for test and we should know the results tomorrow.

Hope and pray she won't need dialysis. That makes her tired and weak, and she's already not in top form right now.

Monday, May 4, 2009

Slight side effects?

Mom didn't sleep on Saturday night and she was tired the whole of Sunday. No fever, and she says she's not in pain. But she is constantly groaning - she usually does this when she is weak and not in control of her throat muscles.

So maybe this is an effect of the Lenalidomide? Tiredness is one of the most common side effects. I hope she slept well last night and is better today.

Saturday, May 2, 2009

Improving every day

Mom has been coping well with the new chemo drug for the past few days: only some mild side effects - constipation, rash and high blood sugar level.

Today's blood test shows that her kidney function has gone down slightly. So they've changed her diet to a low protein, high fibre liquid. Hopefully, this will restore her kidney function.

I has a shock this afternoon. The nurse who was helping me to change mom's diaper was sniffling. At first I thought it was just irritation. Then I asked her outright if she was having a cold, and she said yes. She wasn't wearing a mask! I told her to please put on a mask or better still, take mc and go home.

Half hour later, another nurse came in to take mom's blood sugar level. This one was coughing! When I asked her to put on a mask, she said she'll get a healthy nurse to attend to mom. What about the other patients??!!!

Nurses shouldn't be working when they are not well. It's so ironic - there posters in the lifts encouraging the use of masks to prevent spreading infection and their own nurses are abiding by it.