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Day 248 ~ She is at Rest · Fri Mar 16, 01:33 PM by Dale

Today is a very sad day. Patrick here, to deliver the saddest of news.

Mom’s oxygen numbers plummeted over night. Dad received a call at 3:30am saying that we were needed at the hospital. Her condition had finally worsened such that no machine could bring her oxygen levels up again. Around 11am we had the most difficult discussion of my life.

Going into this mom and dad had made the decision to fight to the end but no further. They would try everything they could to get mom better, but they would not prolong it unnecessarily. And before intubating mom, they had a long discussion going over it all again and making sure that they, the nurses, and the legal requirements were all on the same page and in order.

At 11am we all unanimously agreed that the time had come. At approximately 1:30pm we took mom off of life support and she left this world to enter the next.

There will be a memorial service for mom on Sunday, March 18th at 4pm. It will be at our church, Presbyterian Church of the Lakes. There will not be a viewing or a burial. It was her wishes to be cremated, but her body’s final resting place has not been decided yet. We know it’s short notice for the memorial service, but with the majority of the family all ready in Orlando, dad is trying to be considerate of them.

We know people who can’t be there may wish to send flowers or make donations. We decided to encourage the donation of flowers given that mom had to avoid them for the past eight months.

If you’d like to make a charitable donation, we recommend the MPD Foundation, which funds research into the family of diseases which mom had.

There will be future updates to the blog, we will discuss in more detail the last month and the time in the hospital. Dad wants to discuss what exactly happened, what errors were made and how they might be side-stepped by others who might follow a similar path.

Just recently I began counting hits to mom’s blog, she’s averaged over 400 hits a day in the days I’ve been tracking. And using that as a benchmark as to visits to her blog, she’s had over 100,000 visits to her blog in the time since it began.

Our entire family wishes to thank you all for your support, well wishes, financial aid, and love.


Day 247 Pt 3 ~ Doctor's Notes · Thu Mar 15, 02:17 PM by Dale

Dad and Shawn just spoke with the doctors, and these are just some of the notes from their meeting. Mom’s respiration has been up and down today, she was down to 50% oxygen but then we showed some decline and they ramped her back up to 100. They’ve since decreased her percentage down to 80.

They also have been waiting for her to have higher platelets before putting in a doppler tube. The tube will go into her intestines and feed her further nutrition as further supplement to her drip which goes into her veins. This is encouraging considering her previous bowel issues.

They also noted that where they had seen improvement in the chest x-ray from the day before to yesterday, there was no improvement from yesterday.


Day 247 Pt 2 ~ Albumin continues to Drop · Thu Mar 15, 12:11 PM by Dale

It still is the name of the game. We’ve unfortunately watched it decline from 2.2 two days ago, to 1.8 yesterday and it is 1.5 right now. Her respiration continues to do well, but we need this trend to reverse.


Dat 247 ~ Baby step in improvement · Thu Mar 15, 09:27 AM by Dale

If you think of the road to recovery as a 10 mile road off into the horizon then last night was a few baby steps in the right direction.

During the night dad called to check on her and the nurse informed us that her heart was beating irregularly. The nurses got it under control and it seems to be doing all right.

When we got here this morning we got word that her respirator’s level is down to 50, from 75 yesterday and 100 the night before. This is a good thing because it means the machine is force feeding her less and less pure oxygen, which means it appears her system is doing better on its own.

Dave, her nurse, said her goal was to get her down to 60 today, and so the fact that we’re already down to 50 is a small bit of encouragement.

Other than that, everything is pretty much the same, the albumin levels haven’t changed one way or the other. Which is still the keystone.

So we’re settled in for another day.


Day 246 pt 2 ~ Albumin · Wed Mar 14, 12:52 PM by Dale

Most of our group has left to rest in various homes but some of us have remained at the hospital. Adam and I just went in to see mom, even though she’s unconscious and heavily sedated we believe she can hear us and that it is important for us to go in there regularly.

Serendipitously, while we were there making small talk with mom, Dr. V came in. He’s sharp. And he looks like he belongs on ER with his short beard and pretty looks. But he is definitely on his game. Adam and I quizzed him about mom’s condition and he was honest with us.

The name of the game right now is “Albumin”—It’s the key to the puzzle right now. They are giving her protein in the liquid form of albumin which is almost pure protein and it hasn’t taken yet. But for her to make a recovery she has to begin taking protein. There is simply no other answer right now.

They’ll be putting the “swan” catheter in within the hour, which will monitor her blood pressure and blood oxidation levels among other things. He noted that once that is in, if her oxidation level is low, they’ll be giving her blood. And blood has protein in it as well.

Personally, I’m hoping that they do give her blood because they’ve been giving her albumin for three days now and it hasn’t taken yet – it seems logical to me that they need to begin trying to give her protein in other forms in the hopes that something “clicks.”

For those of you wishing to pray, pray that her body takes the protein and begins absorbing it. That’s the first step for her on the road to recovery.

The situation is still dire, I don’t wish to soften this, but people do recover and that is what we have to remember right now.


Day 246 ~ Third space · Wed Mar 14, 09:17 AM by Dale

Patrick here. We’re back in the hospital today and it’s a rough morning. Mom is hanging in there but her looks are startling.

They’ve got so many IVs pumping various meds and fluids into her body, she’s very puffy and bloated. It’s call “third space” because her body is receiving all these fluids but there isn’t anywhere else for them to go except out into her body. Her stomach and intestines are the first two places I assume, but I don’t know.

She looked this way last night and we hoped it would get better overnight but she is the same if not slightly more so.

I just spoke with the nurse, Jennifer, and I asked her how mom was doing. She told me that they turned down the pressure on the oxygen machine, so her respiratory system seems to be doing slightly better. They’re probably going to put in another catheter to measure pressure on her heart.

They’re not sure why, but she is not expelling as much fluid as she should be. The kidneys seem to be functioning all right so they don’t know the culprit yet.

Also, they took a chest X-ray and noted that it looked slightly better. So, that’s some good news.

Love to you all, we’ll keep you updated as we go today.


Day 245 pt 2 ~ Successful Procedure · Tue Mar 13, 03:04 PM by Dale

Hey guys, we’ve been all waiting in the ICU waiting room eager for any news. They performed the procedure to insert additional catheters for feeding, medicine and monitoring and it was a long procedure (at least for us waiting here.)

We were all getting antsy when the doctors appeared with news. I won’t lie, every time the doctor arrives and wants to talk to all of us at once, my heart leaps into my throat fearing the worst. Thank God that it was good news this time as they told us that the procedure had gone well and they tubes were in.

They got the lung drain in and immediately began removing “stuff” from the lung.

I think we’re all beginning to feel the exhaustion. It’s startlingly tiring to sit and wait. We all have our distractions, ranging from laptops to a darling baby Ashlee. (You have to look at the linked photo.)

So, it’s good news, but no one is relaxing as we’re still walking a razor’s edge.


Day 245 ~ Doing poorly · Tue Mar 13, 08:50 AM by Dale

Sorry for the lack of updates yesterday, it got pushed from our mind. Yesterday was a rough day. They’ve discovered that she has pneumonia and the fluid in her lungs returned. They intubated her when we left yesterday.

Dad called to check on her around 6am this morning and her heart rate was increasing and a few other things were happening.

As of now they are giving her broad-spectrum antibiotics to fight the pneumonia, they are also worried about a fungal infection. She’s on a normal intubation and they’re doing everything they can.


Day 244 ~ Still in ICU · Mon Mar 12, 09:34 AM by Dale

It’s 11:30 and most of us have gathered at the hospital. Dr. Yi wants to meet with us today, we’re expecting them to tell us that they need to intubate her. Expect updates as soon as I get the info.


Day 243 pt 2 ~ Small small improvement · Sun Mar 11, 10:02 PM by Dale

We left the hospital around 10pm, mom is still holding steady. I hesitate to write “she’s doing okay” because in the grand scheme of things she’s still in a dangerous place.

She has had a day of small steps of improvement. They removed the fluid from her left lung and her breathing improved, she still uses the mask but the force behind it has lessened.

Adam and Melissa arrived tonight, Julie and family will arrive tomorrow during the day.

We’re resting and will reconvene at the hospital tomorrow morning at 10am.