3.31.2011

The Miracles


I have been meaning write this for some time now. It is personal. And may disappear from my blog sometime in the future. But for now, I would like to share it.

. . . . .

In addition to the tremendous miracle of my diagnosis, there were many other miracles associated with my surgery. We know it was more than a coincidence that we were referred to a skilled surgeon, conveniently located right here in Ogden, who was competent to perform the operation. And we know it was more than a coincidence that he just happened to be trained by the leading MALS researcher/surgeon in the world.

. . . . .

At the beginning of my post about the surgery, I gave a brief description of the scheduling mishap. Saying we were frustrated when I was notified that my operation would be rescheduled for three weeks later would be an understatement. It wasn't just a matter of convenience, I was in bad shape. I was sick every night, and we were desperately counting down the days until surgery. Waiting three weeks just didn't seem possible; we went to sleep feeling helpless and dejected.

Steve left for work the next morning and told me that he prayed that if this was truly Heavenly Father's will, that a way would be made possible for me to have the surgery as originally scheduled. He told me I needed to pray for the same thing.

I was discouraged, disheartened, distressed.

Dr. Steppacher had already explained the situation (and apologized profusely). It was impossible for him to perform the surgery, as planned. And just because it wasn't going to be done when we wanted it to be done wouldn't mean it wasn't the Lord's will, would it? What good would it do to pray for something that wasn't possible?

But I knelt down and prayed. With my children. A humble prayer. A pleading prayer.

Not ten minutes later, Dr. Steppacher called to say that he was able to get me on the schedule for March 4. Just one day later than initially planned. I immediately called Steve, in tears. Thankful. And a little ashamed.

Prayer is real. Prayers are answered. Even when we lack faith.

. . . . .

My grandpa called me the night before my surgery saying that he had prayed that they would open me up and find a simpler solution. I said thank you. Of course it would be nice to find a simpler solution. But I the results from the angiogram had already confirmed that a bypass was necessary. We were just hoping the surgeons didn't find more damage than anticipated.

The morning of my surgery, I was given a priesthood blessing by Steve and his dad. Among other things, Steve prayed that the doctors would find a simple solution as they operated on me. Hearing it for the second time got my attention. Is it possible that the Lord will bless us with things that we have deemed to be impossible?

He did.

Instead of the bypass, Dr. Steppacher was able to use a patch to restore blood flow through the celiac artery. A solution that hadn't even been considered. A simpler (and far better) solution.

With God all things are possible.

. . . . .

My recovery, especially my recovery at home, has been slower and more difficult than I expected. On one particularly burdensome day, I was reading an inspirational book that talked about the Lord answering our prayers through other people. I knew that was possible. I've had my prayers answered through other people numerous times before. But how was that going to help me then? My kids were already being taken care of by a wonderful mother-in-law. Kind friends were scheduled to bring dinners. But still, that didn't seem to be what I needed. I was sitting in my chair, gazing out the window. Sick to my stomach, in pain, frustrated, and lonely.

And then the doorbell rang. Flowers. Beautiful roses. I wish I could find the note to record exactly what was written, but it said something about hoping that I could feel the love and concern from my family and friends. It was exactly what I needed at exactly the right moment.

Thank you, MaRea.

The Lord loves each of us. And He is aware of our needs. And He will answer our prayers.

. . . . .

And finally, I would like to share one other thing from my priesthood blessing. Steve blessed me that the angels of heaven would surround me in the operating room. As they wheeled me away from Steve towards the operating room, I was as nervous and apprehensive as I had ever been. But as soon as I entered the operating room, I felt it. I felt them. I really did.

. . . . .

Thank you all for your prayers. They have bolstered me up and brought me peace.

(And thank you, Jack, for fasting for me. Your eight-year-old faith inspires me.)

3.17.2011

The Hospital

After my experience in the ICU, everything else seems not-so-bad, although there were still some rough spots:

I was never comfortable, and there were cords everywhere. Lots of poking, prodding, thousands of beeps from all of the machines, hundreds of pain scale questions, and heparin shots twice a day. A CNA, nurse, doctor, or therapist was in my room to do something at least every forty-five minutes.

My foley catheter didn't work very well. (Steve might argue that it didn't really work at all.) It was continually obstructed by air-locks and required a nurse (or Steve) to sit there for a few minutes and manipulate the tube until the urine would drain. It was actually pretty ridiculous.

Oscar, the really-nice-but-probably-thought-I-didn't-like-him physical therapist, always came to try and get me up for a walk at the wrong time. I just wanted to sleep. All I wanted to do was sleep.

Before I could get my NG tube out, they sent me downstairs to a lab for some testing. I remember asking Steve if he thought I was safe. (I'm quite sure I wasn't.) I did not feel well and waited in my wheelchair for almost an hour. He finally told the technicians (performing a test in the adjacent room) that I needed to lay down, so they helped me up on the table. The x-ray table they used moved strangely similarly to a tilt table test. (Not a good idea.) I was completely terrified that I was going to pass out, but thankfully, didn't.

As wonderful as it was to have out, the process of getting the NG tube out wasn't very fun. I desperately hope I never need one again for the rest of my life. Steve captured it on camera so I can always remember it.


My epidural went out again, but was quickly fixed after a small readjustment.

There was a day that we tried to get up for a walk four times in a row, and each time had to turn around and go back to bed because I just couldn't do it.

And there were times that, for the life of me, I could not stay awake. A one-sentence text message took five minutes to write because I would fall asleep so many times.

And then there were the dreams. They were horrible. Not scary/gruesome bad. More like super stressful bad. I kept thinking I HAD to do these obscure things that felt like they were of life-and-death importance, but were obviously meaningless and always ended up being impossible. Especially in my condition. . . which I clearly recalled in my dream. I finally figured out that the dreams were coming from the television shows that Steve was watching as I was drifting off to sleep. He kindly turned the television off so I could sleep in peace.

My digestive system wasn't working too well (still isn't, actually) so I got to deal with all of the fun that comes with that.

I spent one night walking up and down the halls with a big, distended belly and a backache so bad that, even with all of that pain medication, I couldn't sleep. It felt like being pregnant all over again.

My pancreatic enzyme levels were off for a couple of days and I had to take some medicine that just about made me throw up.

Sometimes just listening to nurses or doctors or respiratory therapists just about made me throw up.

There were a few bright spots:

My favorite sister came and visited me and brought loads of treats (for Steve), waterless shampoo, and beautiful flowers from my cousin, Julie.

My parents came for a visit and brought books, snacks, and a bag full of quarters, as requested by Steve.

My favorite uncle (and aunt) came and brought a very thoughtful present.

Rachel sent great pictures and messages via text message.

The day I could walk without the walker was pretty cool.

And the part where my husband barely ever left my side and was pretty much incredible.

But the best part was leaving.

Just like that. . . out came the epidural. Out came the foley catheter. Out came the IV. After seven days in the hospital, I was ready to go home. Well, mostly ready. (I might not have been completely honest about a few of the questions they asked me before discharging me.) We drove home, very thankful that we were not trying to fly home from the Mayo Clinic.

3.15.2011

The ICU


I woke up alone in the ICU.

Before this operation, the two things that made me anxious were #1 getting the epidural and #2 what it would feel like when I woke up. When I came to, I was relieved that I had no memory of the epidural and that my pain wasn't so bad. I just wanted some ice for my throat.

Nope. No ice. No sip of water. Nothing. (For twenty-four hours.) That was rough.

Steve was allowed back into my room after tests were completed and nurses had changed shifts. (Mandatory departure from the ICU for two-and-a-half hours, twice a day.) He stayed with me for a few hours and then drove home to Ogden to sleep for the night. (Visitors are not allowed to sleep in the ICU.)

Steve came back on Saturday morning, and everything went well until that evening. I told my nurse that my stomach was really hurting and asked if it was from the ice that I was finally able to eat. . . very slowly. But the NG tube that went from my nose, down my throat, to my stomach was removing all of the bile and other liquids, so that wasn't the problem. She told me it was just gas from the operation. By shift change time, I was in a lot of pain and told my new nurse I didn't think the epidural was working.

I was texting Steve, asking him to please, please come back to my room, as he was trying to convince the nurses in the front to let him in. By the time I was crying in pain, my nurse went to go get Steve. I've had a lot of abdominal pain in my life, and this was the worst. I could feel everything from the incision and I had horrible stabbing pains in my stomach area.

The epidural was checked and deemed just fine. The doctor on call was called in. There was talk of internal bleeding from the operation. A CT scan was ordered. There was screaming and crying. More screaming and crying as four people lifted me from my bed and transferred me to the table for the CT scan. I wanted to die. Really, as horrible as that makes me sound, I did.

Results were quickly read and everything from the surgery looked good. They switched the medicine in my epidural and hooked me up to a different source of medication, in attempt to drug me up enough to sleep for the night. The new pain medication used a button that needed to be pushed every ten minutes to release more medicine. My good husband stayed awake until 3:00 am, pushing the button for me, so I could sleep for a few hours. Then I stayed mostly awake, pushing the button, while Steve slept in his car. Sunday morning, the anesthesiologist came in and inserted a new epidural. The pain was finally under control.

If only they had listened to me earlier.

But I survived the ICU.

The Surgery

It was scheduled for Thursday, March 3.

On Tuesday, March 1, I got a call from the surgeon saying there was a very unfortunate scheduling mistake and the surgery had been canceled. We would need to reschedule for a few weeks later. I told him that wasn't going to work out very well. The kids were packed. Steve's schedule at work was rearranged. Assignments to help with the kids were given. My blood was tested and I was tagged for a transfusion. I was ready.

On Wednesday, March 2, Dr. Steppacher called back saying he got me in for surgery on Friday, March 4 at Intermountain Medical Center in Salt Lake. He called me back later to say he switched it back to McKay-Dee Hospital.

On Thursday, March 3, I got a call to pre-register me for the surgery at Intermountain Medical Center. And then another one from McKay-Dee Hospital. Calls were made to both surgeons to verify location of surgery. That afternoon, I got a call from Intermountain Medical Center to give me my surgery time. And then that evening, I got a call from McKay-Dee Hospital telling me what time to come in for surgery. Surgeons were again called to verify location of surgery.

We took the kids to grandma's house, completed our to-do lists, and went to sleep, fairly confident that surgery would take place at Intermountain Medical Center in the morning.

On Friday, March 4, we checked in at the hospital and I changed into my gown, bidding farewell to all forms of privacy, comfort, and modesty. Nurse #1 failed (miserably) at her attempt to put in my iv. Nurse #2 came in to insert my PICC line. First attempt was unsuccessful because I passed out. I woke up to six nurses crammed into my room, all trying to take a peek at the action. Nurse #3 was brought in to put in the iv; second attempt with the PICC line went much better.


Dr. Steppacher came in to talk to us for the last time and signed my abdomen. (Is that funny to anyone else? It was my first time being signed for an operation.) An hour or so later, I was wheeled away. The anesthesiologist asked me if I was nervous. Yes. I was. I was near-tears nervous. Steve said goodbye, and then I was off to the operating room. Thankfully, that's when I went to sleep. (Before the epidural.)

Surgery went well. I think I can say it went perfectly. Instead of a Dacron bypass, Dr. Steppacher was able to use a bovine patch, which is expected to last longer. (Hopefully, until I die. I can't imagine going into this surgery knowing exactly what I was going to have to go through in recovery.)

Dr. Steppacher was really pleased with the surgery and said if there was anyone who could be given the sometimes-controversial diagnosis of MALS, it was me. And he really enjoyed operating on someone with healthy arteries and tissues, for a change. His only disappointment was that he didn't have his fancy-schmancy camera during the procedure. (His camera was stolen and the replacement arrived a few days after the operation.) I'm sure the images would have been fascinating. And disgusting.

That might have worked out for me.

The Incision


It's a little graphic, but everyone keeps asking to see it, so there it is.

3.02.2011

Midway Ice Castles






After two previous attempts, (derailed by sick kids and snowy weather) we finally went to the Midway Ice Castles for Craft Day. It is pretty amazing. We had the place mostly to ourselves, except for two brides getting their pictures taken. You have to stay right with your kids, especially little boys, like Adam, who wanted to break all of the icicles.

Lucy was posing for a picture when a big icicle fell down and hit her in the head and on her shoulder. (Of course that would happen to Lucy.) She cried for a bit, and has a bruise on her shoulder, but she can add it to her collection of obscure accidents/injuries. (Remember when she fell in Jenny Lake?)

We arrived in Midway around 5:00 pm, walked through the ice castles during the daylight, went and ate dinner, and then walked through again to see them with the lights on. Fun little outing. (My last, for a while. . . )