December 4, 2015
November 30 at 1:13pm ·
Melinda is feeling a little bit better today after they were able to extract 5 liters of fluid from her abdominal cavity yesterday. After testing, they've determined that the white, milky fluid they extracted is something called chyles, a manifestation of chylous ascites. Apparently, chylous ascites is fairly common among abdominal transplant patients. It involves trauma to the lymph nodes that, in turn, causes the lymph nodes to slowly secrete these chyles molecules. We're guessing that she has been secreting the chyles into her abdomen for a while now, contributing to her growing discomfort and nausea.
The suggested treatments include dietary modifications - instituting a low-fat diet with medium-chain triglyceride supplementation (don't worry I'm not sure what that means, either). If that doesn't solve the problem, they may try resting her bowel by putting her back on total parenteral nutrition (TPN) temporarily. If they do need to put her back on TPN, then it's a good thing she got the PICC line placed.
According to medscape.com, "Postsurgical chylous ascites usually resolves with supportive therapy" and "pediatric patients and adult patients with postsurgical and posttraumatic chylous ascites have a favorable prognosis."
October 29, 2015
I arrived at the hospital a little before midnight last night. Melinda is in pretty good spirits - especially since she is scheduled to be discharged today. We will get her moved into a local apartment since she still has to stay in Indianapolis for another 3 - 4 months.
She is getting around unassisted quite well. I haven't noticed any unsteadiness at all, though, to be fair, I've only seen short walks since my arrival.
She is still having difficulty with eating since she has high levels of nausea and acid reflux. We're enquiring about a modification to her medication to see if it will better prevent the reflux.
She is still getting most all of her nutrition from the enteral feeding - an Ensure-like formula delivered directly to her small intestines through her GJ tube. It's currently infusing at 60 ml/hour (up from 5 ml/hour right after the transplant surgery) but only during the night.
Thank you for your continuing concern, help, support, and prayers. We truly appreciate it.
October 26, 2015
A few good things to update. First of all, Melinda's fevers have been down the last few days. Secondly, the rash she had developed a few days ago has mostly now gone away. They took a biopsy of the rash a few days ago, but we have not yet heard what the tests revealed. They did increase her steroid doses, which may have caused the rash to dissipate.
Her appetite is still minimal due to consistent nausea. Also, she continues to have a hard time keeping down anything she consumes by mouth.
Her activity levels have been good. Today she walked unassisted from her room all the way down to the gift shop and back. No news on how much money she spent in the gift shop, so we can only assume too much.
They removed all the staples from her incision lines a couple days ago. There are three small spots where the skin hasn't fully closed up yet. In the short term, we'll have to pack those openings. We had to do something similar for Hannah about a year ago when she had trouble with an incision line that refused to heal.
Her pain, which has been a consistent struggle, seems to be getting more under control. She's been feeling better overall which has allowed her to better space out her pain medication. Because the pain medication can be detrimental to digestive motility, it's important for her to use as little pain medication as possible.
We're very excited and pleased with her progress so far. She has indicated that the doctors are targeting a discharge date toward the end of this week. After discharge from the hospital, they anticipate that she'll still need to stay in Indiana for another 3 - 4 months as they closely monitor her progress. She'll have multiple hospital visits per week so they can test her blood, continue to taper down her immunosuppressive anti-rejection medications, and adjust her oral and enteral nutrition needs.
October 19, 2015
Melinda has had an eventful few days. With her continuing fevers last week, the transplant team decided to remove her central line on Wednesday. They took her down to a procedure room and were about to sedate her when they realized they forgot to have her fast before the procedure. Since doctors frown on patients hurling while sedated, they postponed the procedure until the following day.
When they took her down (fassting) to the procedure room on Thursday, Melinda explained to them that she has had a lot of medical procedures over the years and has a high tolerance to the sedative they were using. They gave her as much of the sedative as they felt comfortable with, but she remained relatively alert, so they decided to postpone the procedure again so that they could completely sedate her in the operating room.
The next day, on Friday, they finally extracted her central line in the operating room.
She has developed a rash on her skin in the last few days. The rash could be a symptom of the body rejecting the organs, so they took a biopsy of the skin and are running tests on the sample. If it is rejection, there are treatments they can give her, but it's important to catch it early.
While still on an unrestricted diet, Melinda is still not really able to eat what she wants. She's usually pretty nauseated such that she doesn't want to eat. The few attempts she's made at eating have resulted in vomiting.
She has made solid progress with her mobility. She is able to get in and out of bed unassisted. She is able to walk into the bathroom, so she no longer has to use a bed pan or bedside comode. The physical therapist is working with her to build endurance and improve her balance.
If she continues to recover well, the current projections are that she will be in the hospital for about another two weeks. After discharge from the hospital, they are telling Melinda to expect to stay in Indianapolis for another 3-4 months while they monitor her progress.
Melinda is very much looking forward to a visit from Bishop Buttars on Monday. He had a couple days off from piloting and decided to spend those days flying to Indianapolis, visiting Melinda, and delivering a few items to her from home.
October 13, 2015
Melinda received her multi-visceral transplant (stomach, liver, pancreas, small and large intestines) at IU Health University Hospital in Indianapolis on September 24. The surgery took about 10 hours, and the doctors said it went very well. It was more complicated than most multi-visceral transplants, in large part because of a large, calcified clot that had been blocking her vena cava quite some time. In addition to the organs, they had to use the vena cava from the organ donor to reconstruct her own vena cava.
The surgeons said that the organs were in pristine condition, and that they fit into her abdominal cavity very well. They went back in to the operating room the next day primarily to verify that the vena cava still looked good. She passed that test, and they sewed up her abdominal musculature and stapled shut her skin. The primary incision line extends down the middle of her body from her sternum to her pelvis. The secondary incision line runs from about the middle of the primary incision extending across the right side of her torso.
The first night after the closing procedure it was very difficult for her to talk because she had an NG tube down her nose and because of having been intubated for the surgeries. She attempted to communicate using one-word sentences, hand gestures, and writing with a clipboard and dry-erase marker (pens and pencils were too thin for her to grasp.
That night, she wanted to give me a hug, so she put her arms around me as I kissed her forehead. She whispered, "I'm not dead." I looked down at her face, she managed a smile and said, again with a whisper, "Happy."
The next day, the physical therapist came to inflict some pain. Her goal was for Melinda to get out of bed, sit in the recliner next to the bed for an hour or so, then get back into bed. After standing up but before plopping down on the recliner, Melinda said that she wanted to walk more. She walked all the way out of the room and did a loop back to the recliner. Her reason for pushing herself - "I want to go home."
Melinda has shed plenty of tubes and connections since the surgery. She had an NG tube that goes into the nose and down the throat to the stomach to both drain her stomach and to deliver oral medications. She had a central line that went into through her neck into her jugular vein for high-volume intravenous infusions. She had an arterial line in each arm for precise and instant blood pressure measurements. She had a peripheral IV in her arm for delivering various medications. She had a series of leads (gel-like stickers) stuck all over her torso for measuring her heart activity. She had a JP drain inserted into her abdominal cavity for draining excess air and fluid. She was intubated for the surgeries and then had a nasal canela to deliver oxygen after the surgeries. She also had a catheter to drain her bladder.
At this point, she has progressed beyond needing everything in the preceding paragraph. She still has a few attachments, though. She still has her double lumen central line for intravenous medications. She also still has a GJ tube, which is actually two tubes in one. It is inserted through her skin and through the stomach wall. One of the tubes ends in the stomach (G tube) while the other continues down the gastrointestinal tract, past the duodenum and into the jejunum (J tube), the second segment of the small intestines. The G tube, like the NG tube, is being used for decompression. The J tube is being used for feeding. They are infusing an Ensure-like substance directly into her small intestines which is functioning as her primary nutrition. For pretty much the first time since she was three years old, she is not requiring intravenous nutrition.
Lately she continues to battle against nausea, pain, headaches, and general discomfort. She also continues to show great progress, gradually increasing both her activity and mobility. She will likely remain in the hospital for at least another couple weeks. After she is discharged, she'll still need to stay in Indianapolis with a full-time caregiver for an indefinite period of time while the transplant team continues to monitor her progress.
We continue to pray for her ongoing positive trajectory so that she can return home to us after a months-long absence.
September 25, 2015
On 9-24-15 Mindy spent the entire day in surgery having her new organs transplanted.
We express deep gratitude for the miracle of a more years with Mindy and we pray the donor family, who ever they may be, may be comforted in this beautiful gift they have given.
September 25, 2015
"Sending many prayers to you, your doctors and your family as today you get your miracle Miss Mindy... You've been through so many medical trials in your life... It's your time... You've got this!!! Xoxo
Many hugs and blessing to the donors family... May they be comforted by this beautiful gift that they give to you...
August 27, 2015
Melinda received a call last week for potential new organs. She accepted, and they instructed her to get to the hospital as soon as possible. She and her Aunt Becky had previously arranged for an Air Care plane to transport her and Aunt Becky from nearby Bowling Green to Indianapolis. She was then taken by ambulance from the airport to the hospital, arriving around midnight. At the hospital, they began the procedures for preparing her for surgery - drawing blood for laboratory work, performing an EKG and other tests, etc.
After 8 or 9 hours of waiting, the hospital staff let them know that the transplant team might not be able to inspect the donor organs until late that night. About 12 hours later, they got word that the donor pancreas was not in good enough shape for a transplant.
In spite of being back to waiting, there are a few positive outcomes of this episode. First, Melinda got to see first-hand what the process looks like, so she will be better prepared when the real call comes. Second, it was reassuring to see in action that the transplant team has a strict screening process - they aren't going to accept just any old organs for her. Third, though the pancreas was not good enough, the donor's liver and intestine might have answered the prayers of two other patients awaiting transplant.
Melinda continues to be hopeful. Thank you all for your prayers and support.
August 27, 2015
One of the requirements of being listed for transplant with the Indiana University Health system is for Melinda to live within a four hour drive of the University Hospital in Indianapolis. As such, she moved in with her Aunt Becky in Kentucky a little over a month ago. To stay in touch with her husband and three young children, they call often and use video calls through Skype.
May 12, 2015
I am so grateful for the tender mercies of God. We have had one miracle after another. Last winter my husband and I were traveling back and forth to Seattle and and I was evaluated by doctors starting up a new transplant program at the University of Washington. Over multiple trips more and more obstacles arouse and I learned I needed not just a liver and small and large intestine, but also a stomach, pancreas and needed to have my spleen removed. I had many unanswered questions, because although the director of the new transplant program and head surgeon Dr. Gorge Reyes had done liver and intestine transplants on children in Seattle and on adults back in Pittsburgh, but his "team" in Seattle had never done one. I would be one of the first Adult transplant patient. people on Seattle's transplant waiting list had been waiting over 2 and a half years. weak each visit we had more and more I'm in for question and I think into feel more and more terrified to go through a transplant at Seattle. I am sure Dr. Reyes could sense my uneasiness and he advised us to get second opinions, especially now that more organs are needed and the surgery is getting more complex.
Here is where one miracle after another started...My husband is a BYU alumni and faithful follower of Cougar Sports Fan page.
Roy mentioned his wife needed a transplant a guardian angel in Wyoming contacted Roy and told him, that he was brother in laws with a Dr Richard Mangus who is the director of multi vicseral (MVTs) transplants, and this guardian angel would have his brother in law call us. Dr Mangus called that day and spoke to my husband for 2 Hrs. Answering questions and even had transplanted multiple patients that suffered from my extremely rare medical condition. Dr Mangus then got things started so that I could be evaluated at the University of Indianapolis.
One month later we were.in Indianapolis being evaluated. What a miracle.it took months for me to even get an appt in front of Seattle's transplant doctors.
By the Grace of God we were blessed with generous hearts helping us cover the last minute airfare and lodging costs of $1500. (and. that was with discounted hotel rates that we were given due to an arrangement made between the hospital and hotel for their transplant patients. We had blessings come thru to help cover costs of expensive medical bills. I was worked up and told I have a common blood type and for the type of organ donation I need, that I should go home, get a dental check up, some immunizations and get my household in order and return to Indianapolis ASAP. My best chances for getting an organ donor is now.
I was asked in the Drs.office if I had friends or family nearby....meaning within a four hrs drive to the hospital. I said No, the closest relative is in N.Y. or Kentucky.
The Dr asked "Where in Kentucky?" I had no idea we Google mapped it and found it was 4hrs and 38 minutes away. Dr. Mangus said she lived close enough. ....call your aunt. We spoke with my Aunt and everything worked out. God literally dropped housing in my lap at the exact moment I needed it.
I do NOT have housing after my surgery because I will have to live within 1hours driving time because after my month in the hospital I will need to live close by for a few months to go to multiple outpatient spots appointments each week and live nearby in case any urgent issues arise. I Do NOT know how we will afford paying for our mortgage in Idaho and renting an apartment in the city (a one bedroom apartment rents for $2000 in the city) and we will be paying for groceries, utility bills, etc. to run two households, BUT the Lord will provide, even at the very minute my needs arise. I know this is where I am supposed to be. I feel calm we have researched this hospitals success rates, survival rates, and I do not have unanswered questions. I was walked thru literally step by step of pre-transplant and post transplant needs. What will happen at time of surgery and inpatient care, what to expected...ideal case scenarios to worse case scenarios. What the team expects of me, what I expect of them. I feel confident in the skills of thIs transplant team. I was very impressed with the medical facility. This is the biggest test of my faith I have ever faced. I will miss my husband and children so much. But that will push me on when I have hard days the thought of returning home to my wonderful family....will make me work harder, to recover quickly.
My new mantra is from one very wise cousin.....If the Lord brings you"To" it, The Lord will bring you "THRU" it !!
"MINDY TO INDY"
April 23, 2015
Melinda's friend, Jessica, made this video showing Melinda with her family:
youtu.be
December 31, 2014
Well after my last CT scan the director of the U of W transplant team reviewed my scans and chatted with Roy and I for over an hour stating I needed to a " Multi visceral " transplant. Pretty much what that means is I now need a small and large intestine, liver, stomach, pancreas, and my spleen is in enlarged so they will remove mine...and probably not put a new spleen in....I guess you can live with out a spleen. I told the surgeon, great news....we are "anti-spleen" sort of people. One organ down, five to go!!!
We have been advised by physicians to stay on track with the U of W, but also to check into going to Indianapolis because the transplant program at that hospital does the majority of multi-visceral transplants in the nation. I know " God is running the show" even though at times I get a bit impatient. Roy had a miracle experience he was posting away on "his favorite BYU sports fan board, and someone saw that Roy had mentioned my need for transplant, this guy contacts Roy and told Roy that his brother -in-law is the Director of Surgery at a hospital in Indiana that does Multi-visceral transplants, and he would call his relative and have that Dr. Call Roy.....okay, it took several months for us to get in front of the director of liver / intestinal transplant at Seattle, so I was surprised when this surgeon called and spoke with Roy for over an hour answered questions, etc. that same day!
We learned a lot of good info and are working on getting out there...somehow for a consultation. I guess it is true God moves in mysterious ways..... Go BYU Cougars!! Who new having a husband who is a BYU sports fanatic would be such a benefit!!!
December 19, 2014
Roy and I just returned from Seattle we visited all the best "tourist" hot spots in Seattle...the space needle, Drs. Offices, and the ER at Univ. Of Washington hospital ! I have been blessed with the best travel buddy, my husband never complains that when we go on trips, he frequently gets to tour hospitals. I can't imagine anyone else by my side thru all these adventures in life! Love ya - more Roy!!!
December 18, 2014
Dec. 17 - Mindy just got back from a long weekend of "pre-testing" in Seattle, a required part of transplant preparation.
