Off to a great start

Every new day means more improvement for my dad. Although this video was taken just days ago, today I heard from my brother that he started practicing on stairs! Here's to 2009 and I hope the best for everyone. Hope 2009 will really bring back good health for my dad.

101th Day

After 100 nights at Santa Clara Valley Medical Center, my dad is finally discharged today from Rehab. Lots of progress has been made since I last posted, and we are now at Step #2. He's been recovering at a good rate, but of course he's in no condition to go back to where he was living. Today, my brother, sister and I moved him to a pretty nice Chinese assisted living center near the hospital where he will begin what I call in my head as Phase 2 rehab. He is now free to leave the premises to go back to Dr. Zhu and Moyee to begin their 3 hour/day "On My Feet" program. Hopefully the program will help him rid of the need of a wheel chair and regain his clarity in speech.

It's been such a long stay at the hospital, even though he's been making a good amount of progress lately, it's pretty exhausting to follow everything, especially my brother and I driving down to San Jose all the time. Not to mention the piles and piles of paperwork to be filled out and hours of phone calls that had to be made in order to square away bills, plan accommodations, deal with health coverage, disability etc etc. Nothing has been easy, so at the end of the day, I've been slow and less motivated to update the blog as often as I did.

It really does take 3 other adults to take care of 1 person, but even though my dad has been in the hospital for so long...remembering how he was when he couldn't even eat to now being able to eat whatever I bring, all our efforts are well worth it. There's still many giant steps to take, and there's still thinking about what will happen in two months, but for now, getting out of the hospital (jail) is pretty sweet.

I hope my dad will be sleeping well in his first night at his new "home."

Links

Bah. Catheters. Or at least that's my guess for these reoccuring fevers:
http://en.wikipedia.org/wiki/Bacteremia

G-Tube
http://www.oralcancerfoundation.org/dental/tube_feeding.htm

Repeat Pattern

It's been almost a week since my last update. Although part of last week my dad's mood was pretty bad, but after my multiple complaints, the docs finally d/c Klonopin and since Wednesday he was back to normal.

Therapy has gotten a bit more aggressive over the last week. Speech therapist 3 times a day to help him with meals. Physical therapy helping him stretch out his muscles and practice moving his legs. And occupational therapy happening during the week to help him dress and sometimes help him try to stand. All these sessions require a lot of his attention which he's having a bit of a problem with, but overall with the help of my brother he is mostly cooperating.

When I left him on Saturday, he was exhausted and pretty emotional, but that shows me that he is thinking and feeling and the exhaustion helped him get a good night's sleep. Not exactly sure what happened internally overnight, but yesterday his blood pressure started to climb up again. It went as high as 180/100. It went down after an extra does of meds and a large BM, but in the morning it went up a bit again.

This afternoon, same as what happened almost 1 month ago on 10/13, he started getting a fever. I just got off the phone with my brother and it went as high as 103.9 degrees about an hour ago. Although his BP is fine, he's extremely agitated and it was really difficult for the nurses to get a complete set of blood cultures from him. Right now he down at radiology to get yet another chest x-ray. I am counting the days since he officially started eating 3 meals a day on top of having the g-tube and it's about the same number of days since he started eating a month ago that he also had a fever attack.

Last time they weren't sure if it was a lung infection from silent aspirating or a UTI, but I have a feeling it is the former and it's due to eating. A complete drawback but let's hope that the past 3 weeks of recovery has strengthened his internal system so he can fight this one off naturally in a shorter amount of time. It is flue/cold season....... right.. as I am getting sick myself.

Although test results will have to wait until tomorrow, I hope my dad can at least get an uninterrupted night's sleep. Now that the temperature is back down to 99 after a ton of ice packs, hopefully it doesn't climb up again. Please help us think of good thoughts.

Lastly, thanks to Mabel Ko and Chen-pin Hu to your donation. Night.

Yes We Can

On and off, my dad has been mumbling Obama! Obama! and telling my brother and I that he wants to vote. He might be too agitated (still not sure if it's the Klonopin screwing things up) to fully absorb everything, but my dad and I watched the electoral votes pile up and Obama's uplifting speech at Grant Park.

Hopefully my dad can sleep soundly through the night knowing that change has arrived in America and if history like this can be made, he will believe that he can recover.

Starting anew

A lot of other problems have been found in the last couple of weeks, but there's really not much of a solution yet. Apparently my dad's platelets aren't working, his kidney was deteriorating earlier but it got better, then there's the hematoma that's there's not much to do about, then his blood sugar levels were high and he got some insulin injections.

Most of this stuff has been pushed aside. Even though the problems are there, there's no cure. So the focus is back onto rehab.

My dad went back to the 2nd Unit Rehab center on Wednesday evening. On Thursday, he had a gastrostomy and his PEG gtube is now in place. It kind of hurts him but it's overall less annoying than the tube through his nose and throat. He has great potential to swallow and eat again, but he was sleepy yesterday and wasn't alert enough to work with the speech therapist on eating lunch. So this weekend, in the eating department, no improvement.

Today his greatest improvement was that he was able to sit really straight on the wheelchair without having to lean on the backrest. Although his head is often down, he is able to control it a bit. The main problem is that he gets really sleepy......which made me suspicious.

Over the last few days, the doctor has prescribe some drugs that I find extremely questionable:

Baclofen: A muscle relaxer and antispastic due to extra spastic movements in his arms? Maybe it can be proven that he needs it, but from what I've read, it's not recommended for stroke patients. About 10-63% of patients experience transient drowsiness.

Klonopin: Is used to treat epileptic seizures and panic disorders. The attending doctor prescribe this due to my dad's apparent "change of mood." Apparently it effects a chemical change that causes imbalance and anxiety.

Seroquel: Looks to be an extremely dangerous med to treat bipolar disorder. Although this has been discontinued, my dad did have to take it once.

I don't want to offend the doctors but I really want to be explicit that they cannot prescribe any mind altering or psychiatric drugs for my dad. Most of the time, these drugs just cause him to be extremely drowsy. And sleeping during the day is the last thing that he needs. He now has a limited amount of time that he can stay in the hospital and we really need him to be rehab'd as much as possible. Also, seeing that my dad isn't capable of communicating his problems to the doctors due to some lack of alertness but mostly language problems, giving these meds to my dad might as well be drugging him unwillingly. There is no test that the doctors right now can give to my dad to prove that he has any sort of need to these drugs.

Sigh, I am just very frustrated about this part.

My dad tonight said that he's been feeling scared, I asked why and he didn't know why. I hope this isn't the meds talking.....

Overall it's been a bit easier communicating with him as he is speaking louder and slightly clearer. Of course when he is in his sleepy mode, all words become a mumble. I continue to let him know what kind of improvements he has made. I know he is capable of recovery, even if it's at the pace it is now, but I need to make sure that he believes it too.

You can do it daddy!

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