Well, while the giving financially isn't necessary anymore, the prayers are still needed. I just received the following email from her family, along with permission to reprint it on my Blog:
Second Verse, Same as the First...
We're having a serious deja vous experience around here. Once again, we will soon be boarding a plane to New York for a surgery for Jacqui, her second. Well, second of this type. I was counting them up the other day and this will actually make a grand total of 23 times under anesthesia for various surgeries and procedures. No wonder we can't seem to shake off that shell-shocked look! The good news is that this
time, it is courtesy of one of her surgeon's private grants. For those of you
who are scratching your heads thinking we were finished, uh… so did we.
Allow us to explain...
Last year, as you know, there were some complications with Jacqui's surgery. We knew there likely would be, so it really didn't catch us by surprise. Jacqui's Lymphatic Malformation (LM) was even more extensive than originally thought and it made for some serious challenges for her surgeon. We are asked a lot, “Didn't you go to New York so nothing would go wrong?” The answer surprises some - "Well, no, not really." The primary reason we went to New York was that we knew there was a very high probability, almost an inevitability, that something would go wrong. When it and if things did go wrong, we wanted her to be in the most experienced hands possible so that the problems would be addressed quickly, appropriately and with experience and skill. And, that is exactly what happened. Looking back on the entire experience of everything that happened makes us incredibly grateful that her surgeon did have such extensive experience. The rare occasions where we ponder what might have happened had she been in different hands results in a sensation not unlike staring over the edge of a 1,000 foot cliff after a nasty tumble in its general
direction. About all that goes through your head while your heart pounds at 100
miles per hour is "Whew!!" Then we thank God for all of you and your prayers!
Jacqui's surgery last year went very well over all. Her LM was successfully removed and we have had no incidence of recurrence, which is very good. Chances are very small now that it will re-generate. Her breathing is worlds better! We really have to listen to hear her now when she is sleeping and she no longer needs a heart-rate monitor for apnea. Her cyclic vomiting syndrome and migraine symptoms appear to have stabilized and she hasn't had an episode since January. She has been regaining nerve function in the right side of her face and is right on track with anticipated recovery rates. Every month we see new improvements. She has had a very, very good year!
Now, about last year's surgery complications. The surgery was a long one - just over 8 hours. The surgeon told us that it was one of the most difficult surgeries that he had done and estimated that the mass they removed was about 2 pounds. It was so large that it had pressed all the structures in her neck far left of center - muscles,
blood vessels, everything. That made it impossible to guess where everything was
ultimately going to end up after things had a chance to settle down for a few
months after the surgery. Because of this, they had to leave more skin than they
had originally planned on to give things room to return to as close to normal as
possible positions in her neck. This resulted in a baggy section of skin under
her jaw-line and meant that a follow-up procedure would be necessary to do
cosmetic touch-up work. So, just out of the gate we were already looking at a
second surgery. Also, all of the fat tissue in her neck had been pushed up into
her cheek or over under her chin by the LM with very little fat tissue in her
neck or jaw line. This too would need additional surgery at a later time to
position it correctly.
Then there were breathing complications. She had to have a temporary trach put in which, incidentally, didn't slow her down at all. In fact, she decided she was done with having a trach several months early at about 3 am on Christmas Eve morning of last year. She pulled it out herself. She did such a very fine job of it that we were not able to put it back in place. So, after being scared out of our wits followed by a 3 am ambulance ride which Jacqui referred to as “allotta fun“, we had the unique joy of spending Christmas Eve day in the hospital. We waited while it was debated whether or not Jacqui needed to have her trach put back in place surgically. After several hours of her bouncing-off-the-wall antics, the hospital staff finally conceded that she
didn’t appear to be in any eminent danger of respiratory distress. I think they
all sighed in relief when the lobby doors closed behind us. Ken later asked
Jacqui why she pulled her trach out. Her reply? “I had things to do.“ What a
During our stay in New York, Jacqui had another complication. Her drain, a device that was temporarily placed to route fluid away from her incision line, lost suction and she had to go back to surgery to have it repaired. The suture line became stressed from the extra procedures and some stitches prematurely broke loose requiring another surgery to put them back in place. All of this unfortunately made it impossible for the incision to heal in the nice thin line that it would have had it been able to have been left undisturbed.
Every complication was addressed with incredible skill and efficiency. The compassion displayed by the entire surgical team was overwhelming. We really couldn't picture the surgeon's level of concern being any greater for his own child. After all the complications had been addressed and we were getting ready to go, the surgeon did something extraordinary. He told us that whatever needed to be done to get Jacqui to his initial intended goal for her, he was committed to seeing through to the end - at his expense. He told us he wanted to bring us back to New York in a year and fine-tune the unexpected cosmetic issues that had surfaced for her. All on his tab. We were overwhelmed. We told him that we hadn't come to New York for an iron-clad guarantee that nothing would go wrong, but rather because he was the best qualified individual to see to her needs if something did go wrong. He gave us a tired smile. His response although nearly unheard of in medical circles was a commonplace one for him, "Whatever it takes. Whatever it takes to get her to where she needs to be - I am committed to getting her there." We thought that as her parents, we were the only people alive possessing that level of commitment to her medical care. How wonderful and unexpected to find that same deep-seated commitment in our child's surgeon!
A brief side note: We have been fortunate to find not just one, but two excellent surgeons. Some of you may remember that we had been told Jacqui would need to have a couple of surgeries to strengthen her trachea. Thanks to her wonderful new ENT in Seattle, those procedures are on hold indefinitely. While assessing the state of her trachea in January, he noticed a tissue flap that was falling over her vocal cords whenever she took a breath. He removed it in a simple lasering procedure, suspecting that it might be heavily contributing to her breathing complications. He was right and her breathing has improved so dramatically that the other corrective surgeries have been put on hold and it appears they may not be necessary at all. He is a very detail oriented person and we are so grateful that he notices what he calls
“little things”. His attention to such “little things” has had a huge and positive impact on Jacqui’s health.
We are hopeful that this November’s surgery in New York will be her last surgery for a very long time. Her surgeon plans for this procedure include the following: Achieving as much symmetry in her face and neck as possible, removing the excess skin left behind in the first surgery, repositioning any necessary adipose tissue, and repairing her LM removal scar and her trach scars. He also plans to assess the percent of nerve function that has returned to the right side of her face compared to her left by measuring electrical potentials of the nerves and comparing them to the left side. This will give us a better idea of how well her nerve function is recovering. This surgery is expected to be about a 5 hour surgery in contrast to the surgery last year which was estimated at about 10 hours.
We plan to leave here on Saturday night, November 11th, see her surgeon on Monday November 13th in clinic, see an assortment of other specialists involved in her surgery on the 14th and 15th, have surgery on the 16th, suture removal on the 22nd, fly into Portland late on the 23rd (Thanksgiving Day), and return home Friday morning the 24th. Then the plan is to sleep like zombies until one of the kiddos insists on waking us up (thanks to Jacqui's baby brother, that interval may be painfully brief).
So, here we are one year later. Very soon, we will be boarding another plane to New York because of the care and commitment of a very special surgeon, because of steadfast friends a loving family, and because of the extraordinary kindness of a community. Our airfare, apartment rental and Jacqui's medical expenses all paid before they even accrue. If ever you find yourself doubting God's faithfulness or the significance of prayer, call. We'll talk.
Deepest gratitude for each of you,
Ken and Michelle Propst (and Jacqui and Kyle too!)
P.S. The photo is from Jacqui’s 4-year pictures. We purchased the negatives and rights to copy and transmit the photos from her photo session.
So again, thanks for all the support, dear readers, and please keep up the prayers.
And yes, I've already let the Probsts know that if Jacqui likes younger men, The Lad is available.