Hospital Day 14: a new year awaits!

So it's Bena reporting on / clarifying my earlier blog post: 

• The wednesday embolization procedure was fairly extensive, but did not need to explicitly include the renal artery (good).  It did involve embolizing numerous areas, deploying 16 (!) coils to stop the bleeding.  The perinephric (next to kidney) hematoma (blood clot) was as big as 10 x 9 x 14 cm (bad).  Regardless, it seems to have worked because the blood counts have been stable for the 2 days since then.

Today we are back on track for re-establishing some goals:

• continue / complete antibiotics for presumed (although never identified)(grrr) infections that led to the horrible pneumonia
• wean off oxygen requirements
• manage blood pressure and kidney disease with medicines, and convert these to pills instead of IV's
• get a more permanent catheter (aptly named PermaCath) when there is no/minimal risk of infection
• regain strength with physical therapy

onward ho Tai,
happy new year friends and family,
bena

Dec 30th...

ok so today was a very good day..

I came in around 0930 and Tai was going thru his regular day of dialysis ... his dialysis nurse was Melodie and she was very nice ... Tai seems to know the whole routine of it.. which is kinda funny .. one would think you would never want to know or experience it ever... well that took a lovely 3 hours.  I want to say they did 4 liters..

Dr. Barme (urologist) came in and said his blood counts is rising again.. so that means they plugged the kidneys and stopped the bleeding.. but if you haven't yet .. please think about donating blood.. it helps Tai or others in need.  Dr. Robinson (infectious disease) said his test came back negative... some disease they wanted to rule out but i have forgotten what it was.. and the last thing Dr. Barme said was that Tai gets to move upstairs since he is progressing well .. of course that made Tai all anxious to move and get out of the ICU...  that was the only thing on his mind actually.. and he didn't get moved until 1900 ... he is now in room 6W-031...  so yeah for that hope he stops having setbacks and progresses forward to some sort of recovery like Bena said.

Overall an uneventful day =)

signing off and resting: Tai Bui

his brother Tanh.. more to come soon ..

Hospital Day 12, Wednesday Dec 29: Back to the ICU

Apparently Tai failed to get the memo that I sent out requesting no further complications.  Tuesday night was a difficult night and this morning a repeat CT scan showed that the blood clot next to the kidney was larger in spite of the embolization on Monday. 

So he went back to interventional radiology and had more areas embolized.  He also had a new dialysis catheter placed.  I have yet to see the final report, but the nurse tells me that they had to embolize the renal artery (more on that tomorrow when I read the final report and talk to the urologist).

After the procedure, the doctors felt like he needed to be monitored a little more closely, so he went back to the ICU again (this time 1st floor south, bed 5).  They are also being fairly aggressive in trying everything to avoid further bleeding, including giving him meds and blood products (FFP, DDAVP, vitamin K, and more blood).

IT'S NOT TOO LATE TO DONATE BLOOD FOR HIM (SEE PRIOR BLOG POST)!

Tai is now back on his pain meds (dilaudid and ativan) so he was pretty groggy tonight. 

Here's for hoping for no new surprises - I've never been an adrenaline junkie anyway and would LOVE some boredom right about now ....

be well Tai,
bena

Update from Monday December 27: buy a lottery ticket

So just because I believe in science doesn't mean I don't believe in luck .... Dr. Dang the nephrologist says that Tai should buy a lottery ticket and I'd agree ... it was unlucky that there was bleeding from the kidney.  The good news is that he went for the embolization yesterday and the doctors found 4 (!) areas bleeding and blocked (placed coils) in each one.  Now we're waiting to make sure it holds steady and doesn't bleed again.

Now that this is hopefully stabilized, we can get back to where we were on Christmas day, which is:

• graduating to dialysis every other day, instead of each day
• having a port in the chest placed (permacath) for dialysis so that the leg (femoral) catheter can be removed (maybe surgery on wednesday if things going well?)

The pneumonia seems to be progressing but very slowly and a lung specialist (pulmonologist) may be brought in to consult to see if there are any further interventions that might help expedite the recovery.

Lastly, the blood pressure and heart issues are undergoing medication adjustments with the goal of graduating to oral medications instead of IV meds.

good luck with the lotto,
fingers crossed for no bleeding,

bena

Sunday Dec 26, Hospital Day 9 continued

ok it's Bena again with a oh-so-boring medical update.   

First - while I was hoping this would not happen, we need to deal with a hematoma (bleeding) around the kidney that occurred as a consequence of the renal biopsy that was necessary to establish Tai's diagnosis.  Tai needed to be moved to a more monitored (telemetry) floor (6 West bed 30) and must remain on strict bed rest to avoid a lot of movement.  He was transfused 2 more units of blood so if you were thinking of donating blood for him - it's not too late!  We are hoping that his blood loss will stabilize.  If it doesn't, options might include a small procedure to block the bleeding areas (embolization with interventional radiology).

Kidneys took a little step backwards with a creatinine of 6.8 but this is not surprising and regardless, he continues to receive dialysis.

Heart improving - not normal yet, and they are adjusting his heart meds to manage the blood pressure and optimize the strength of the heart.  (ejection fraction 40-45%)

Pneumonia slowly improving.  One of the 4 antibiotics will end tomorrow, and the game plan is to end each of the other 3 antibiotics after completing 7-10 days (depending on each drug).  The chest x-ray still looks pretty serious, but clinically he is improving.  And as a side note, the radiology findings typically lag behind the clinical improvement anyway.

ok, that's all i've got for now,
i'll update again after tomorrow's urology evaluation,
bena

Day 9 Sunday

I am typing this message on behalf of Tai as he narrates from his hospital bed doped up on pain Meds.

First question he asked "so who will take over thieu nhi?" (the youth group Tai recently got voted in as being in charge of) My (Cathy, the former leader) answer, "you......when you get better.  And you will get better."

"Thanks all for all your prayers. I'm tired now so I'm going to keep it short." - TAI BUI

Tai is in a regular hospital room now off the ventilator and breathing on his own. He is in pain from his kidney biopsy but the nurses have him on pain meds and he's enjoying the ride. Tai has been eating regular food.....he states the food at the hospital has been good. For dinner he had chicken and carrots. He placed his order for tomorrows breakfast: rice krispies and fruit cup with apple juice.
Tai is in good spirits and is joking around with all those that are visiting him at this moment. Perhaps he's on his meds now but overall I think he's doing well.

His plans for new years is go get out of the hospital.

Cathy Signing off for tai Bui!

Hospital day 7 off the vent and awake!

Well friday was a good day because Tai got off the ventilator in the afternoon! The pneumonia is still severe but there is good progress!

And - I was so happy to see when I walked in that he was sitting up and wearing his glasses again for the first time in a LONG week.

He will have a hoarse voice for a while but pretty soon my job here will be done because Tai will be able to update this log himself.

Merry Christmas,

Bena

Hospital Day 6

To those of you still reading on day 6, I sure hope that Tai gets better soon, because I've already got writer's block.

He is more responsive today and can move his extremities.  He is opening his eyes more and more but is still spending most of his time resting and recovering.

So the big news of the day is that the doctors have diagnosed the kidney disease as IgA nephropathy.  Unfortunately this is most likely chronic and permanent.  This is a well studied disease and at least having an official diagnosis helps us map out a plan for how to manage his disease in the coming days, weeks, months, and years.  Until he is off the ventilator he will receive hemodialysis each day.  After he can breathe on his own then they will reduce it to every other day.

Tai's breathing status is somewhat improved with him successfully tolerating a lowered ventilator setting (CPAP) for a few hours.  He'll try it again tomorrow and hopefully for another few hours.

As for Tai's heart, an ultrasound (echocardiogram) was done again today but I don't have the results yet.  As I mentioned yesterday we anticipate an improvement in the results.  He seems to be responding well to the blood pressure medications and when I visited him tonight his blood pressure looked great at 110/70.

 To end, I'm glad to report no complications.
More updates tomorrow. Rest well.
Bena














 

Between Day 5 and Day 6

Thank you to everyone that attended the prayer night.  As Bena stated; it was touching to see so many people come out to support Tai and his family in their time of need.  The kids in Tai's youth group lit candles and walked up as Brandon Dang sang "There Is None Like You" by Lenny LeBlanc.  The candles were arranged to spell out T-A-I.  I am sure Tai appreciates the support that he received today.

(Please scroll down to see information regarding blood donation for Tai)

After the prayer session I stopped by the hospital to post up the hearts with all the kind well wishes in Tai's hospital room.  I was very happy to see Tai eyes open slightly for the first time in the 4 days that I have visited.  I told him about the prayer session that was held....about all the people that showed up to wish him well. 

Tai was in and out but able to open his eyes (slightly) upon command.  His mom stated that he squeezed his dads hand today......he is steadily becoming more responsive especially after he was weaned off the sedatives.  He isnt able to communicate since he is still being assisted by the ventilator.  I just held his hand and told him to take it easy and rest; to take one small step at a time.  As I talked to Tai he flared his nostrils a few times; I guess that was his way of responding  :)

His nurses and staff have been very kind and seem to take good care of him.  They asked me to remind visitors to use the phone in the hall way to call before they come in.  They also added that they would like to keep the visitors at 2 to 3 at a time.  Having too many people in the room at a time tends to over stimulate Tai which causes his blood pressure to go up. 

Please continue to send positive energy and prayers to Tai. 

Still fighting on.

Cathy for Tai Bui.

Hospital Day 5 recap

Good evening - I'll try to update Tai's progress for today.

Tai was weaned off all 3 sedatives today.  Because he has been so sick, these will take a while to gradually wear off.  He did open his eyes periodically today.  The doctors anticipate that he will be more responsive as the days go on.  If not, he may have a CT of his head tomorrow.  He already had one on Saturday which looked normal.  Don't worry - he is still getting pain medicine as needed.

He was started on 2 heart medicines (captopril and labetalol) to help his heart.  He will likely have a repeat echocardiogram this week to check on his heart status.

His lungs are stable.  There are some improvements in the ventilator settings.  He remains on 4 antibiotics.  This is probably his biggest challenge for the next few days.  He had a CT of his chest today but I don't have results yet.

His kidneys are somewhat improved to a creatinine of 4.1.  He received dialysis again today.  I'll elaborate on his renal biopsy results when they are finalized.

Overall I'm pleased to see him more responsive (opening his eyes, moving his arms) and he seems to be tolerating his dialysis well given the circumstances. 

More updates tomorrow,
Rest well Tai and breathe strong,

Bena

Prayer Meeting Wednesday Dec 22 / Info regarding blood donation

On behalf of Tai and his family - sincere thanks to all of you who are thinking of him and praying for him.

Thank you to all of you who came to Tai's prayer meeting at St. Nicholas.
It was touching to see so many people being supportive of Tai and our family.  We are lucky to be a part of such a great and loving community.  We are glad that you are a part of our lives.

For those of you interested in directed blood donation for Tai, here is some information:

Tai has A + blood.

To date he has needed 4 units of blood.  It is unclear if he will need more in the days ahead.

• Please contact the Hoag Hospital Blood Bank at 949 764 5621 and indicate that you are interested in making a "directed donation" to Tai Bui who is in CCU-bed 15.  
• Appointments are required and they are scheduled M-F between 8 and 3:45.
• After verifying that you meet the requirements for a safe blood donation (including age >17, weight > 110 lbs, have valid photo ID) and meet medical restrictions (such as no recent tattoos or piercings, no hepatitis, no HIV, etc.), the collection process takes approx 45 minutes.  There are also travel restrictions which vary depend on where you traveled to and when . The blood bank can answer more specific questions.
• The screening / processing times takes approximately 2 days.  
• If Tai does not need the blood then your precious donation would go towards other needy patients.

 

Day 4 evening post

Okay, I feel weird writing in the third person, so I'm writing as myself, Bena. (sorry not to maintain the trend of prior posts).

Overall assessment: 

First - I'm grateful that there are no complications to date.  The types of interventions that Tai is having are high risk and I hope that this positive trend continues.  Complications would include bleeding, blood clot, allergies, etc - and (knock on wood) there are none to report thus far.

In general, things are stable or improving slightly.  I'll elaborate below:

There is still no unifying diagnosis to explain the pneumonia, kidney failure, heart failure, and anemia.  We hope to know more when the renal biopsy result comes back tomorrow.  There is the possibility of autoimmune disease, but some bloodwork checking for that has been normal.  (Which is good, but frustrating because we don't have a diagnosis).

Kidney function is still very abnormal but improving to a creatinine of 4.3.  He has received dialysis each day since Saturday and will continue today and tomorrow, at a minimum.  He remains quite swollen and they are trying to take fluid off with the dialysis but his blood pressure doesn't tolerate this well.  Kidney ultrasound was "normal" - i.e. no structural defects.  The right kidney is the side that was biopsied, in case you wanted to know.

Plasmapheresis has been discontinued for now, since the autoimmune blood tests are normal.  In other words, the docs don't think this will be helpful anymore.

The lungs are doing marginally better, with the doctors dialing down the oxygen a little bit.  He does well for a few hours, but then seems to get tired, so they had to dial it back up again when I was there tonight.  They are trying to wean down the sedatives so that he can try to breathe better on his own - but he gets agitated and starts fighting against the ventilator.  So let's all hope that he can try to "wake up" in a smooth way, and resist the natural temptation to fight the ventilator. 

He is on 4 strong antibiotics.  This is to cover the possibility of infection as well as to help with his SEVERE pneumonia.  On his chest x-ray only the top corners (apices) actually had air in them.  However, they have not yet found what organisms - whether bacterial, viral, fungal, or unknown - is causing the infection.  This is very frustrating because we can't take off the unnecessary meds, or customize medicines without knowing what we're fighting.  So in the meantime, he's stuck on all 4 meds for the foreseeable future (at least 7 days, we think).

Heart function is essentially the same - with decent maintenance of his blood pressure without meds.  The initial ultrasound of the heart (echocardiogram) revealed a major weakness in the pumping ability - and this is unchanged for now.

Okay, that's it for today.
Thanks friends and family for reading,
Rest well Tai and I'll see you tomorrow,

Bena

Day 4 continue.

Dr. Dang came in to visit me just before lunchtime...so here are some of the results that Bena (my sister-in-law) had made for my doctors to fill out.

Creatinine level is 4.3
WBC is 16.9
Hb is 8.5

update on: 
     blood cultures is Negative
     respiratory cultures is negative
     acid fast bacilli for TB is negative (so isolation is cleared)

Renal bx hopefully Wednesday

plans for today...
   dialysis
   wean Propofol today and tomorrow.
   wean off the ventilator soon..

more info to follow as soon as Bena gets here after work =)

Day 4...quick update.

Good morning everyone...

Jamie, my nurse, said that they are going to start weaning me off my sedation medication...she also said my chest x-ray is looking better...  my heart rate is 79 and blood pressure is 127/88.  they just came in and took my temperature and it is 97.6 degrees. soon my other specialist will come in soon to update me of my other issues.  lets see what else my day brings.  will update more later..

Day 3

Hello Everyone...

This is my hospital visit blog.  I will try and keep you all updated on my status with the help of my brother and friend......cause you all may know I am currently in a very deep state of sleep.  The doctors had to put me in an induced coma to keep me comfortable.

Well today is Day 3 at Hoag Newport Beach and I can hear the pouring rain outside..... my Creatinine level is 5.5 and I am currently having dialysis as I write this.  I'm still on a ventilator to assist me with my breathing... The nurse was kind enough to brush my teeth for me.  My heart rate is down.. currently at 85 and blood pressure is 111/75.

They have ruled out the possibility TB; so my visitors do not have to wear a painters mask =) Went downstairs today to have a Biopsy on my kidneys and results will come out tomorrow.

Thank you for all your time, prayers and thoughts in my time of need.  Also just wanted to tell everyone that I'm not allowed to receive any flowers, gifts or etc. 

We will get an address soon for those who want to send me a card.  As a reminder; for those wishing to visit me.  Visiting hours are anytime except between 7 & 8 AM and PM.  There is a phone located on the right hand wall before the double doors. 

Please be courteous to my nursing staff and call them before entering.  Please also do not bombard them with calls to check up on my status.....check back here for updates.

PS I hear there is a prayer night at my church on Wednesday December 22nd at St Nicholas Church at 730pm in the large hall.  

Still fighting on......Tai Bui.