Strong Arm

Although my dad is still mostly bedridden, his steadily improving physical strength has been both a blessing and a slight cause of problem. He has been dependent on a feeding tube since his diet was down graded due to the whole fever/kidney deterioration problem 2 weeks ago. However, as you can imagine, having a tube up your nostrils and down your throat is a tremendous annoyance. Since my dad likes to move around a lot in bed, due to either being sometimes agitated from having an increase blood pressure, to constantly trying to move for his self-checking, it's been difficult for him to leave his tube alone.

He was doing pretty well over the weekend and through yesterday, but right before I got there his nostrils were itching a lot and he pulled it out again. That was probably the 9th time. Later in the evening, I watched the nurses stick another one in him, and then the routine chest x-ray afterwards. Sometimes I worry about all the excessive radiation, but since he hasn't done the video swallowing test yet, he really depends on that tube for nutrition and meds.

I had a long conversation with Dr. Mangiapia from Rehab on Monday. Even if he can upgrade his diet after the video swallow test, he might not be able to eat the optimal amount. The next step now is the PEG tube. A gastrostomy will be performed on my dad tomorrow so a tube can be placed directly through his stomach lining for feeding. Pretty scary just to think about it, but this is more or less common and when it's done it's less bothersome than a nose feeding tube. All I can hope is that the procedure goes well and he won't need to use that forever.

Tonight my dad got moved back to Rehab on the 2nd floor West Wing of the hospital. It's been really great to see a good amount of his friends from church to come visit him and cheer him on. I really didn't know who to contact initially but good thing I caught a voicemail before I disconnected my dad's phone. Any sort of encouragement is definitely needed, especially from his peers, so thank you!!

Even though sometimes my dad's arms are too busy, all that moving and being restless is making improvements for him. His left hand, which really hasn't been mobile much was actually able to squeeze my hand last night! I saw is fingers open and close to a fist at a pretty fast pace. Although not 100%, this is quite remarkable.

There are still many unexplained problems internally that the doctors are trying to figure out, but now that he's back at Rehab, I hope his body is able to tolerate the work out so he can be a little bit more mobile each day. 1st thing of course is hope that his blood pressure doesn't fluctuate too much, but hopefully other things internally can somehow improve on its own.

Thank you to this week's kind donors:

Matt Ehlen
Ada Lau
John Lin
Kenneth Ng
Jeannette Tsuei
Duncan Wong

唔好做老親

Despite the weeks that have gone by with my dad in bed like that, today came a pretty impressive milestone: he pee'd nearly 500cc (that's like 3/4 pint) in the hand held urinal on his own!!! This seems like a pretty small feat for the average person, but he hasn't done that in OVER A MONTH! It's worth celebrating.

It's been really difficult trying to decipher the few things that my dad actually says these days, but today it was a wee bit more verbal. It took awhile for me to figure out, but my dad said something funny to me today:

"Don't be a dumb ass and stay here all day, go home."

I ask him if he was going to be okay. He said yes. So I took his advice and left around dinner time.

On that note, I'm keeping this short. Good night.

Another Speed Bump

It's Friday and these days I am trying to take a small break at night and ask my brother to make the hospital visit during the day. I was able to leave work early today to get my teeth cleaned, so I had some free time to chill out in the afternoon. I probably should have done a bit more seeing that it was another 80+ degree day in SF, but nothing sounds better than napping right now.

We've been anticipating my dad's return to the Rehab Unit for a few days now, but as I've said before, if it's not this, it's that. He's still in TCU because the doctors want him to rest up for a few more days as he is not quite ready for Rehab, and well, now he has a bit of pneumonia.

No straight answer has been given to me or my brother about the condition of my dad's lungs. One day is that he has a fever because he might have aspirated, so he was given Vancomacin. Next day they look at the chest x-ray and there's no signs of infection. Another day his kidney is not working so well partly because meds like Vancomacin is harsh on it. Then another team of doctors say no real damage was found on the chest scans. And now he has pneumonia???

I am really anxious about getting that feeding tube removed. He's been on it for one week again exactly. First it was for a few days, hoping to schedule that video swallow test. Now it's been a week. For me, that's like the first order of business. Maybe it's because we are Chinese and everything is about eat eat eat. I guess there's nothing to do other than wait it out, again.

Even though the octreotide scan showed no signs of Pheochromocytoma, the doctors still hopes to do a gold standard test that would for sure prove the absence or presence of a Pheo. Apparently, the octreotide scan is only 80% accurate. However, this "gold standard test" is more complicated and requires my dad to be more alert to cooperate. Honestly, I am not sure when they intend to do this test, but he sure isn't gonna be fully alert or even have the good attitude to participate with knowing that he can't eat.

Sure, now he gets a double dose of Suplena each meal, that's 16oz of "complete" nutrition, but it's all liquid straight to the stomach.

With all this, it's going to be another weekend in TCU. Dr. Pence, one of the Rehab docs had mentioned to my brother that now that he's back up here, we need to give them a more definitive discharge plan. Suppose my dad needs 24 hour care and my brother gets a job, my brother won't be able to provide for him. Apparently, caretakers are about 6,000/month and Medi-Cal pays for maybe $5/hr for caretakers. Basically, if we don't come up with a workable discharge plan, Rehab unit will not readmit him on the basis that even if he is on the road to recovery, he will not leave to a place where it will help him continually improve. Because of this, my brother will go back to the doctor to make it known that he will be the primary caregiver. This is of course not an easy task for anyone, but at this point, it's all needed.

This weekend, probably no physical therapy, no food, still at TCU -- I guess the only thing to do is for me to diligently coach my dad on speaking so at least doesn't lose that completely. It's been really difficult to get a complete grasp of his condition as he is not too communicative, but hopefully that can be slowly reverted.

We'd like to thank everyone for their continued thoughts and support, especially these new donors:

The Florendo Family
Eduard Hueber
Justin Ong

If it's not this, it's that.

I figure it's about time to update this blog.

The past week has been pretty intense, and it all started with that fever I mentioned in the last post. Since my update last Wednesday, the following has happened -- in kind of chronological order:

• My dad has gotten so sick that he's too tired to swallow food or meds
• Kidney functions were deteriorating, mostly from blood pressure meds
• UTI was still going on
• He had a few bloody noses and was vomiting 3 times
• Due to sickness, he was just too tired to do much rehab.
• Because they eliminated Lysinopril, the HBP medicine that is a bit harsh on the kidneys, his blood pressure went escalating but still fluctuating
• The high BP has caused my dad to be super agitated
• At that point since my dad's BP can only be controlled by IV meds such has Hydralazine, which is more of a pain to acquire in the Rehab unit, he went back to TCU
• Before going back to TCU the Rehab doctor suggested that he had symptoms of Pheochromocytoma, a benign tumor perhaps in the adrenal glands that over excretes hormones like adrenaline that causes irregular and high BP
• Meanwhile...white blood cell counts were going up.. bad.
• While he was too tired to eat, rehab doctor suggested to put the feeding tub back in his nose--SIGH
• After my dad was back at TCU, he was injected an apparently small amount of nuclear medicine to his blood stream. This medicine would cling onto the Pheo if any and an ostreotide scan would be performed to see if the nuclear med attaches to anything that would prove a Pheochromocytoma
• Hoping that the Pheo is the cause for everything (since it's reverseable) I agreed to the doctor giving my dad Adavan so he's sedated during the o. scan so he can be still resulting in better imaging.
• The octreotide scan show no signs of Pheo. Bah. And now they found a hematoma in his psoas, a muscle between the hip and his kidney, at the same time his red blood cells count was going down. Normally for him it's about ~30 which is borderline anemic, but it went down to 23.

My dad has been not too alert and overly sleepy the last few days, due to being sick and later due to the sedative. Fortunately, tonight he was awake and alert. I was able to understand him for the most part and his answers to my questions made sense. Since he was up all day, he did get tired early and fell asleep around 8.

I was pretty much on-call to do a blood transfusion with him because of his red blood cell count, but his last blood test showed that blood levels were going back up, so no need for now.

He will get another abdomen CT scan tomorrow to make sure that the hematoma isn't growing. If it hasn't grown, back to Rehab!

As for the acupuncture treatments, I am thankful that so far we have raised about $1000, which covers 3+ acupuncture sessions. Up to date, my dad has gotten 11. However, the treatments are on hold as the Rehab unit needs to work on guidelines for outside doctors to do treatments in the Rehab Center. It's pretty much just bureaucratic crap. It will probably take long but for now Dr. Zhu, Moyee and I will just have to wait for approval......

Overall, I don't know if the past week is good or bad -- but kidneys have reverted, urine is clear and at least today is ok.

P.S. Thank you Erin for your latest donation!! Anything certainly helps.

A Few Steps Back

My dad is still in the rehab unit, but the last couple of days he has taken a few steps back.

On Monday, after a full day of speech, occupational and physical therapy, I went for my usual visit after work and my dad has already eaten dinner and was back in bed tired. He didn't respond much so my immediate worry was that they started some sort of new medication that was making him drowsy.

After the nurses convinced me that he's just tired from the day, I backed down and just sat at bedside waiting for Moyee to come for the usual acu treatment. It was getting late, so I went to call Moyee to see if she can come back tomorrow instead, since my dad was sound asleep. When I came back to the room there she was, so the usual treatment began.

Meanwhile I noticed my dad started getting warm. Since Moyee felt his head and didn't think so I didn't think too much of it until later. 30 mins later, I got the nurse to get his temperature, and he had a fever of 103. The nurses proceeded with ice packs and tylenol. The worst part is that the crazy hiccups came back at 8:45pm and did not go away until 11pm when I left. The last time these long term hiccups were around.... that's when well, ehhh I'd rather not say.

A handful of tests were immediately ordered. Blood and urine sample. The chest xray was ordered but it wasn't administered until the next morning. The doctor's initial reaction was that he was aspirating (since he was also drooling a lot) so they hooked him up to Vancomycin, the anti-biotic for lung infection and another broad spectrum gram negative anti-biotic for 10 days.

The next morning, his fever was still up and down. His blood pressure actually wasn't affected. Despite the drooling, he was still able to take meds and eat by mouth. I spoke with Dr. Pence and the diagnosis was that my dad got another UTI as the chest xray didn't show anything abnormal. At that point his temp was slightly down to 101.3. And they would allow my dad to just control his temp on his own over the next few days. He was awake, he sat up a bit to eat.

In the afternoon, I got kind of a mean phone call from Dr. Englander informing me that my dad is to not have anymore acupuncture treatments and that the acu practitioners were not adhering to hospital guidelines. He was quickly to blame the acupuncture treatment as the cause of infection/fever even though I was just told my dad got a UTI. I thought the whole guidelines thing was crap because the hospital has never informed Dr. Zhu what was required other than clearance from the Medicine Department. Turns out Dr. Zhu and staff had to submit a treatment plan. Ugh. Dr. Englander was naming things off like Dr. Zhu left needles in places where he shouldn't have. And I would ask him for specifics and he would be kind of dodgy about it. I hate when people can't be specific with you because it's like they are afraid I am going to sue the hospital. Gah.

I told Dr. Englander that I understand the treatments needs to be stopped because of his fever, but I asked him when this issue can be revisited because I want my dad to continue with the treatments as it is helpful to him. He basically said nothing and repeated that my dad is to have no more acupuncture by any practitioner right now. Later I looked him up and apparently he's the director of rehab. The hospital really needs to step up on its communication regarding this whole thing. Prior to this incident, the medical team at TCNU or any hospital unit had no discussion or interest really in the progress of his acupuncture treatments, so how could me or Dr. Zhu or Moyee have any idea of what is required? I have break this ban.

This morning I called -- now his fever is down, BP is stable, hiccups are still kinda going. But now he's back on NPO (Nothing By Mouth) SIGH.

My brother is supposed to be down at the hospital today during the day, hopefully he can breath some reassurance into my dad....

One Month

It's been one whole month since my dad was admitted to Valley Med and he is now officially in the Rehab unit. Since he just got in on Thursday night, which is towards the weekend, he hasn't started on his intense rehab yet. Tomorrow will be the first big day, I think -- not sure how serious the hospital is about Columbus Day.

My dad has been well into his pureed diet in the last few days. Since the hospital staff is really baby steps about the food stuff... I'd like to try to have him eat a tiny bit of soft chewing-needed foods, like maybe a banana.

His improvements have been pretty subtle, which isn't bad at all. He's been sitting up about 2-3 times a day, mostly for meals. Total of maybe about 3-4 hours each day, which is a big jump from just the lowly 45 mins he was allowed to just 1-week ago. He seems even more alert.

Normally 2 nurses are required to help transfer him from wheelchair to bed, but today the HSA Bridget was able to transfer my dad herself. Turns out my dad is now able to stand up slightly to accommodate his body weight. Although his left arm still often reverts back to a bent 30 degree position, his elbow is much less tight since the hourly implementation of the arm splint. He's able to slowly pull and push my hand. His left hand though still hasn't shown much improvement, can't really move his fingers much other than revert to a fist.

The doctors now have redivided his Metoprolo intake into 3 times a day instead of 2 because the frequency helps maintain his blood pressure better. Before the morning dosage would always expire at about 6-8pm and his BP would climb back up to the 180s. Now for the most part, his BP is in the 130s-150s. This still sounds high for the average person, but it's actually a significant improvement for my dad.

Hopefully this week's rehab will bring much more improvements and hopefully the higher dosage (0.8) of Flomax will kick in so he can pee on his own soon....

And now, I'd like to thank these new awesome donors:

Marilyn Chan
Marvin Lau
Stephan Chang
Sylvia Lee

Thanks yalls, and good night!

Food!

After a few days of me sneaking in yogurt and getting yelled at by the doctor, my dad has finally proven to the doctors that he can swallow. Well it also helped that he pulled out his feeding tube over night for the 5th time. They were almost going to put the tube back again, but instead my dad tried a 3rd swallow eval and passed.

He's currently on a dysphagic diet and can only eat pureed foods, which is better than Ensure from a tube! He had lunch and last night he also tried some mac n' cheese and mashed potatoes. I think he was being a bit hasty and ate a little too fast, so he was coughing a bit later. Overall it's still good.

We are working on getting him moved to the Rehab center in the coming days. But still need to work on pending Medi-Cal app and have a discharge plan.

On a separate note, we'd like to thank the following new donors:

Rendi Ho
Beatrix Nam
Maya Scott

Thank you guys!!!

A Thank You

We would like to thank for the following wonderful folks who have made a donation since the start of the blog. Your contribution is truly appreciated.

Claudia Bitar
Mark Camara
Anna Garin
Arnold Gatilao
Bill Gong
Barry Hamaguchi
Eric Hsu
Rita Law
Megan Luke
Grace Malvar
Stephanie Watanabe

My dad was able to be comfortably seated in a wheelchair for a few hours this weekend, which is an immense improvement. I think this week he will try work with the physical therapist on standing. Still needs lots of work on his left arm and speaking/eating but everything is improving slowly but surely.

Thank you all again!!

23rd Day

I haven't been updating for the past few nights because has been falling asleep a little later at night now, and by the time I either drive back up to SF or San Mateo, I am dead tired. Too hard to think about looking at a computer screen!

Anyway.

My brother is back from Macau for the time being and we've been sneakin' some peach yogurt for my dad to try swallowing even though he's still on the feeding tube. He actually does great with it and he likes eating it. Funny thing is that, when I left my brother feeding my dad so I can use the bathroom real quick, I came back and apparently a nurse saw and she narked to the doctor. The doctor then yelled at my brother. =P Hey man, I told the doctor not to give my dad any drugs that causes him to be drowsy and they did last week anyway.

We've been told on the hospital end many times that he has not passed the swallow eval and my dad will continue to need the feeding tube even though he's pulled it out 4 times already. He's currently being given Ensure (basically a liquid meal) and Metoprolo (regular blood pressure med) through the tube. So it's essential to keep the tube. But on the other hand, Dr. Zhu and Moyee said that he needs to start practicing swallowing with something. And honestly, why not? How are you going to learn how to swallow again if you don't have anything to swallow with? Yogurt seemed to be perfect. I have tried cutting grapes in really really tiny slices for him to try. Even after 2 pieces he knew he couldn't do it. But with yogurt, he had no problems.

My dad had quite a pieceful night of sleep last night which is great. I've been training him to think about relaxing his arms, because it's all tensed up because he thinks his right hand is uncontrollably moving and his left arm is not moving at all. He does a lot better with a bit of convincing. Yesterday he worked with the PT and was in a wheel chair again, which is good. But I am slightly frustrated that no nurse has been able to update me on a list of exercises that he's done thus far. Acupuncture will now be every other day.

There's still lots to work on on his left side. Left peripheral vision especially. A lot of words and phrases needs to be reminded of. Even colors. But all is possible!

Anyway -- time for another drive down to the Hospital.

20th Night

With the days passing by so quickly, it's hard to believe that my dad has been in the hospital for almost 3 weeks. Although I don't have much to report tonight, the news today continues to be good overall.

Despite slight set back today in the physical therapy dept...my dad's overall strength has increased. The PTs weren't able to work with him today because his blood pressure has gotten really high overnight. My dad has been getting an IV injection of Hydralazine as needed when his blood pressure is dangerously high. He has been prescribed a daily dosage of another anti-hypertensive medication, but a dose of that led to his blood pressure to drop way too low, so the doctors have refrained from any regular blood pressure meds until today. Now he's taking Metoprolo twice a day. This med seems to be working for now, hopefully it will help stabilize his BP in the long run and not cause it to swing too low.

My dad has been obsessed with watching TV for the past few days. Which is ok, at least he practices using his eyes. Overall today he seems even more awake, but when he's awake he can be a little uncooperative. Speech hasn't improved much but other areas have shown much improvement. Today I handed him the TV remote and he was able to channel surf quickly like anybody. He's able to control more of his neck to support his head and was able to hold the phone when my aunt called. When I was trying to exercise his left arm to prevent it from tightening much more, I can ask him to relax and he generally has control of his arm so when I move it, it's much looser. He can extend and pull back his left leg pretty effortlessly -- well for his condition anyway.

Dr. Zhu and Moyee came by as usual. Tonight was my dad's 6th acupuncture treatment, which mean the fees are racking up. =( But it's working, so I can't have them stop coming.... More work was done on the left leg this time. There were 10 needles in the scalp, one on the chin, some one left arm, left leg and right leg. Since my dad is kind of unwilling to speak and has trouble moving his tongue, Dr. Zhu did a few pokes on my dad's tongue again. This is pretty hard to watch but it does make him talk!

My worry tonight is his oxygen intake. It is only in the low 90s right now and it drops to the 80s sometimes when he's holding his breath trying to swallow. When I left, it looks like he will get a decent night's sleep. Hopefully tomorrow he will still be on the up-track.