Day 243 ~ Holding Steady · Mar 11, 10:32 AM by Dale
Morning folks, just a short update. The gaggle has arrived at the hospital. Currently dad and Jessica are in with mom. She is apparently doing fine, held steady through the night. Dad called to check on her through the night and she was doing fine.
Shawn, Robin and little Ashley Dale arrived last night. Adam and Melissa are on the road today heading down today. We’re just in a waiting game though.
No news is good news it seems.
Day 242 ~ Taking a turn for the worse. · Mar 10, 11:22 AM by Dale
Dad initially wrote a short blurb here, it’s Patrick now and I’m going to try and clear it up and restate some stuff now that we have a more clear picture of what is going on.
Short version: Mom’s health has taken a turn for the worse. We’re in the ICU now waiting for news. The problem is with her respiratory system, rather than her bowels as it has been for the past few weeks.
Long version: Mom’s stomach has continued improving such that the ileus seems to be gone, however today she began having some severe respiratory issues. She’s had an oxygen tube supplying her nostrils but today that wasn’t enough and so they put her on an oxygen mask.
From what we can understand, she is very short in the protein in her blood and that is affecting how her blood can carry the oxygen. The proteins are lacking due to her inability to eat and such, had she been healthy her body would have taken care of it. So to overcome that they are trying to push more oxygen into her system.
The ultimate choice for forcing oxygen into her system is to intubate her, which is the last resort as the doctors have made it very clear that those who get intubated may not ever come off of it and become reliant on it for breathing. So mom and dad had to make a decision.
They decided that if it came to that, they would intubate. The doctor though came up with one last idea, a mask which creates a more complete seal over her mouth and forces air into and out of her lungs.
For the moment, this seems to be working. Which is good news. They moved her the ICU currently and there is a gaggle in the waiting room with us. Friends from church and several of my siblings are headed this way today or in the very near future. Mom’s mom arrived last night.
They’ve done a few tests trying to find out if the problem is fluid in the lungs, something which happens quite frequently for weak bed-ridden guests. And if so, it is treatable. Another concern is that a clot developed and that is a bit more problematic.
The situation is bad. The last report we were given was that she had stabilized but is on the cusp of needing to be intubated. We can only wait right now. Pray and wait.
Thank you all for your support and prayers, we need them now more than ever.
Day 240 – Good News, No Sign of GvHD - Halleluiah, Praise the Lord! · Mar 8, 07:24 PM by Dale
It’s Chris with some really good news! Dale’s biopsy came back today and the GvHD is under control and no longer present in her gut. There also was no sign of CMV! This is fabulous news as we were working on how to get her to Houston where they have lots of experience in dealing with GvHD. The folks here are real rookies in this area. Almost cost us a lot! I’ll give Dr. Sarriera credit; he said to me yesterday that if the biopsy came back positive for GvHD today, he would be saying that this was beyond his level of expertise and we would have to move Dale to Tampa’s Moffit CC. I said I prefer MDACC Houston where they really know what they are doing. To that end, I, Patrick, Connie and my friend Barbara Keller and others as well were exploring all the possible ways we could get her to Houston. The choices ranged from over $20,000 to free. It makes my head spin just to think of it.
Bottom line, the GvHD is under control and they can now work on starting her digestive system up again. She hasn’t eaten much for three weeks and the GvHD of the gut, (pardon me for over simplifying) is like a rash of the stomach and intestines. Naturally, the result is a fever, nausea and diarrhea. Another piece of good news is it seems her immune system is actually working pretty well. Her numbers are: White cell count – 3.9 (low normal is 4.1), Hemoglobin – 11.8 (low normal is 11.8!) and Platelets – 149 (low normal is 145!)
We aren’t out of the woods yet. Her intestinal track is sort of collapsed and causing some obstruction. Gas is moving but it needs to get active again. The Dr. feels it will, but is cautious as well. Once that happens, they will start her on clear liquids and see how she does. Then something with more consistency moving on to normal eating. Once the stomach and bowels are working properly, they will begin physical therapy. That part will probably be in a nursing home that is set up to handle physical therapy.
We can rejoice today on the beautiful healing power of the Lord, the Doctors and the Meds. Prayer works! Thanks to all of you for your wonderful prayers and support. Daughter number one, Jennifer and her four kids arrive tomorrow as well as grand mom.
Gonna be a fun, busy weekend. Sure am happy we have some good news to focus on!
We will keep you all up to date. Take care. Chris
Day 239 late Critical day tomorrow · Mar 7, 07:23 PM by Dale
Hello all, it’s Jessica this time. Patrick’s already done a good job of informing you all earlier today, but there have been a few developments and Dad asked me to write another post.
Mom was moved to intermediate intensive care this afternoon, which is between a normal hospital room and intensive care. She is in room number 319 in ORMC. We are hoping the care here will be superior to the care she’s received thus far.
When moving Mom today there was an accident that resulted in her PICC line being ripped out. It was a very unfortunate result of some careless techs. Luckily, Dad was there to make sure it was dealt with immediately (after first being told it would have to wait till tomorrow, he exploded. After the smoke cleared, they miraculously found a team to insert a new PICC line. This was the third time he had been told the PICC team had gone home and Mom had to wait. First Monday from Friday or Tuesday from Monday), and a new PICC line has been installed in her other arm, yet again. What a hassle these have been.
Also, Dad had a discussion with Dr. Serriera today. He has been in touch with Dr. Champlin in Houston. The bottom line is that they feel the GvHD may have progressed beyond Dr. Serriera’s expertise and depending on the biopsy results tomorrow, she may need to be moved to Houston. We all feel that she will receive the best care in Houston, despite the many complications and expenses moving her and caring for her there present.
As you might expect, Mom is absolutely exhausted from all of these goings-on, but she does seem to be doing well and just explained to Dad and me that the gorgeous poppy flowers Aunt Connie sent her grew in the Land of Oz. We laughed heartily at this and she indignantly remarked, “It’s true!”
Thank you all so much for your support and please keep it coming. Things are tough right now, but my Mom is so amazing, and her friends and family so loving that with the Lord’s help, nothing is unconquerable.
Day 239 ~ An ileus · Mar 7, 01:03 PM by Dale
Patrick here. I’m in the room with mom and dad (Chris) as well. The short and immediate is that mom seems to be doing marginally better today, but we have had some positive news so far, with hopefully more coming when dad meets with Dr. Sarriera later.
We just had a visit from Dr. Graham, who is the surgical consult for mom’s main doctor, Dr. Sarriera. He answered several questions for us, mainly concerning mom’s gut. She has an obstruction in her bowel or “ileus,” he explained that there are two versions “mechanical” and “paralytic.”
If it was a mechanical ileus then it would have to be solved by surgery, an option we all dearly want to avoid. If it was a paralytic ileus then it would have to be waited out. Dr. Graham says that today’s x-ray looks better than yesterdays and they were able to detect some air movement past where the blockage was, which makes them think it is the latter of the two options. Basically it means the bowel is simply not pushing and so the food stuff ends up not going anywhere.
They’re doing everything they need to and are currently being fairly positive. So now we’re in a bit of a waiting game. We have to wait for it to resolve itself right now. She is going to be moved to a new room tomorrow into “intermediate intensive-care.” We don’t know which room yet, but we just know it is going to happen.
Mom’s spirits seem to be up a bit today. She’s still foggy, but she made a joke earlier that was 100% Dale Jarrett. Unfortunately it escapes me, something about making a break for it.
In closing: Our situation is still not good, she is very sick, but today is good news so far.
Day 237 - Somewhat worse today · Mar 5, 06:13 PM by Dale
Hi Guys,
It’s Chris. Unfortunately things are worse today.
It’s complicated, and we will know more tomorrow. It seems the GvHD has lessoned but the possibility of CMV in the gut seems likely. They will take some tissue samples tomorrow to confirm, but the doc is starting the drugs for that now. CMV (Cytomegalovirus (CMV) Infection) is a serious virus and can have dire consequences. The steroids and anti-rejection meds compromise her system and her numbers are OK but not the best. This opens her up to infection. They start feeding her through an IV tube tonight and that presents problems as well. The IV food is a perfect breeding ground for various bugs but we have no choice at this point. She needs nutrition and she can’t keep anything down at this point. It’s a tough and very worrisome problem.
Bottom line, she needs your prayers more than ever. Hopefully we will have some more and better news tomorrow.
Thanks for all your love, support and prayers.
Chris
Day 235 ~ Hanging in on a Saturday · Mar 3, 10:58 AM by Dale
Hi Guys. It’s Chris.
Dale is slightly better today as they drained some gunk out of her stomach last night. They were preparing her for nutrition via the PICC line in her arm. However, the PICC line had a clot so they removed it and will put a new one in on Monday (not much happens on a weekend in a hospital. It’s best not to get too sick on the weekend.) In the meantime, she is sipping on juice and broth trying to get some calories into her system. She is working hard to keep her broth and jello down as she needs the calories. We are going to try to help her do some exercises each day. There are others she can do on her own.
I read her the comments on the blog and depending on how she feels, her emails as well. If you want to email her, the address is: jarrett.dale@gmail.com.
Several of you would appreciate her address so you can send her a card. She would love that. Just to be sure she gets them, send them to our home at:
Dale Jarrett, 839 Rosemere Cir., Orlando, FL 32835.
Thanks for your thoughts and prayers.
Day 234 ~ Still rough · Mar 2, 01:47 PM by Dale
Patrick again. We really appreciate your all’s comments and emails. I’m going to drop another blog post today as I know people are again eager for updates with mom still in the hospital. Being enmeshed in this we sometimes forget others don’t know what’s going on and that information is sparse for others elsewhere in the world.
Mom is continuing to recover, though it’s quite slow progress. She’s got a busy room today with myself, dad and Connie all here at once. Mom is tiring, she’s dozing while we sit and talk in the room.
One important thing for those who follow in our path, is to remember that hospitals are lonely. Despite the constant flow of doctors, nurses, and various people – it can be quite lonely. We’re blessed with a situation where mom doesn’t go a day without at least one of us coming to spend time with her.
There is discussion about having her moved to a nursing home for maintenance care, but we’re uncomfortable with the idea. We’re not convinced she is ready for that move. We’ll see what comes of it though.
Just a short update today. Thank you all for your prayers and well wishes.
—Patrick
Day 231 - Still Recovering · Feb 27, 12:36 AM by Dale
Hello folks, Patrick here.
Lives are busy. Dad is busy. I’m busy. Jessica is busy. And mom is still recovering. But you all need an update. I promised mom I would write one and so here I am with some time, at 1:30am local time, when I need to be up and at one of dad’s customers in just seven hours.
This blog is about the journey we’re going through, it’s meant to teach others and let others know what to expect. This is a real story about a real family going through a real life changing event. This isn’t Grey’s Anatomy or House or ER. No one day slapstick solutions.
Your body spends your entire life growing and manufacturing cells, what mom has gone through reduced her body’s industrial system to rubble and started fresh. It’s a slow process inherently. I mean, she spent mumble years getting to where she was and now we’ve forced her body to start anew. Not an easy thing to ask of anyone.
On this path to recovery there are going to be hitches and bumps. We would like to, or even love to, believe that it’s going to be as smooth as can be – but that’s just naivety speaking.
They weaned mom rather quickly off meds other patients spend years on. One of her friends, Jay, has been on the meds for over five years. And they tried to wean her off in less than a year. I don’t fault them for it, she was showing steady improvement and it seemed justified.
They’ve restarted her on the various meds and they’re beginning to work. Her rash is lessening and we believe her gut is slowly healing. One very interesting development has been that on Saturday when they did her blood tests, her numbers were unusually high. So high that we didn’t believe it. We don’t believe it. Or at least I don’t. I don’t know the counts exactly but several of the numbers, white blood cells for example, were in the normal range or very close to it. I’m waiting to see what today’s blood test reveals, if perhaps it was a rare spike or if there are other factors at work.
I’m sorry posts are infrequent, but as I said – we’re all a bit busy right now. I try to see mom everyday, usually it ends up being six out of seven days a week. Even if I just swing by for a half hour, I love spending the time with her. I firmly believe that while I can’t heal her or do what her medicine is doing; I can give her support and support is a key element to her recovery.
It’s growing late and I’ve said everything I need to say except thank you. Thank you all for your continued love, support, prayers and well wishes. We’re pressing ever onward in this long journey.
—Patrick and family
Day 227 - Not feeling very good today. · Feb 23, 04:25 PM by Dale
Hi Guys,
It’s Chris. Sorry, Dale is not feeling well enough to post today.
They have confirmed that GvHD is present in the skin and upper and lower GI track and stomach as well. Seems MDACC in Orlando does not routinely look for GvHD since they are not a transplant center. We knew it had to be based on our Houston experience. Dale went in with the same symptoms at MDACC in Houston in September so we were fairly confident what was happening.
In any event, when the labs were questioned about their negative results, they went back and specifically looked for GvHD and found it in the skin, stomach and gut. Very frustrating as we knew and were wanting them to start the treatment for it. Instead, they needed a confirmation to start the steroids, anti-rejection meds and other meds as well.
Short version is they are now treating for GvHD but we are somewhat behind and it will take a week or so to get it under control.
Today Dale is sick at her stomach, weak, and has diarrhea pretty bad. This has been going on for some time. They are now aggressively treating the diarrhea as well as the other.
We would appreciate your prayers. Hope Dale feels better tomorrow so she can write an entry. Chris