Thursday, October 31, 2013

1st Anniversary

After my last blog post (http://sweetshermanfaces.blogspot.com/) I felt like we’d cast off anchor and were free to sail on. I just couldn’t bring myself to write anything about our everyday lives because, frankly, it felt good just to live them! We had sailed through so many storms we felt a wave of relief after the initial, intense, post-transplant period of medical observation was over. Now, as we approach our first anniversary, I've once again become more reflective. So hopefully you will all enjoy a brief update about our last 8 months (since my last post).

Make-A-Wish sent us to Hawaii in April. We felt like it was the celebration after the past couple years of sorrow and struggle. After months of dreamy kidney health, it now feels like the trip was a lovely end to yet another chapter in our ongoing novel. A couple months ago, someone jokingly asked how they could get a free trip to Hawaii. I laughed and said all they had to do was have a dying child. I didn't think anything of it at the time. It was only later that, while outwardly I was smiling and joking, inside the exchange stung. Up until our trip to Hawaii, we didn't come face to face with the reality that Evelyn is always on borrowed time. Evelyn's official status of "end stage kidney failure" (which qualifies her as critically ill and therefore a candidate for a wish) felt remote and casual--something I could dismiss for the most part. After nine months of dreamy health, in July we hit a rough patch with a UTI that turned septic (E. coli went into her blood). She was admitted to the hospital for a week. Her nephrologist was quite concerned by how quickly the infection went into her blood so we did some tests (an ultrasound and VCUG for those medically interested) and found that her kidney reflux, which had caused much of the damage to her native kidneys, was now inflicting damage on the transplanted kidney. Needless to say, Keith and I both were quite shaken by this news. We asked ourselves (and the doctors) if this meant we were back to square one. I was ready to hit the panic button (Was dialysis right around the corner?). Our transplant team sent us back to urology for their assessment. They recommended a non-invasive temporary treatment called deflux (Essentially, they insert some filler into Evelyn’s ureter to stop the urine from going back into her kidneys). We chose to do this instead of the more risky but more successful open surgery of reattaching the transplanted kidney to her bladder. The surgery didn’t go as planned. In rare cases the deflux filler can block the flow of urine to the bladder and cause a back up into the kidney. Poor Evelyn is one rare girl. So we were back in for emergency surgery a couple nights later to remove the blockage and place a stint (a plastic piece between the kidney and bladder. She had one right after transplant, as well.) This means that we’ll be back in to remove the temporary stint on Halloween, her first anniversary.

Even though Evelyn will spend another Halloween in the hospital, she is doing wonderfully. We couldn’t be happier with this past year. She is lively, energetic, and sometimes mischievous. She's reached the 75% in height. Her g-tube is out and she meets her 1.5 liter of liquid per day goal all on her own 3 year old will. The past few months were a sober reminder that Evelyn is chronically ill. She (and her family) always live under a shadow of illness that never goes away. But just like when the clouds cover the sun on a summer day, then move on and the sun reappears with warmth and glory, so do our lives.



Sunday, February 10, 2013

Evelyn in her better life

The girls in their school uniforms.
If I take all the time I need to organize my thoughts the way I want them it might be a year before I post this so I'm sending it out much like our lives: a little disorderly.

Evelyn and Keith are both doing astoundingly well. Evelyn is delightfully silly, energetic, naughty, and normal. We are overwhelmed by how much her personality has blossomed. She used to be shy, unsure, sedentary. Now she is climbing on furniture, going on horse rides (at Lights of Christmas), attacking Ada Claire and being attacked. Our house is so noisy and we couldn't be happier. As far as medical details, her blood pressure is hovering between normal and a little too low (before dialysis 160/100, now 90/50). She's off of one of her blood pressure medications. We hope that her readings will continue to trend downward so we can eliminate the other blood pressure medication. Her creatnine (the level that measures the amount of toxins in our blood) has stayed at 0.4 since just after transplant (she was at 2.2 before dialysis). Do any of you remember when she was at 1 percentile in weight and height? She just reached 56% in height and 46% in weight this past week.

Keith was able to pick up the girls, groceries, and vacuum cleaner right around 2 1/2 months post-surgery. He's still not lifting ladders but we plan to keep that permanent, if possible. We had planned to transition him out of the field in the future. His donation just moved that future possibility into our present reality. He's managing our crew, pushing marketing, and making plans for future developments.

My biggest accomplishment? Cooking dinner every night. Helping Marilouise complete her reading and math book. Marilouise is the sweetest oldest sister. She's a big helper and always wants to do a project of some kind. Ada is wild and curious. She's loving pushing her sisters around.

We praise God for the incredible recovery. We've had one ER visit for a fever and one clinic visit for a fever (both turned out to be the common cold). No other signs of infection or rejection. We are profoundly grateful for God's grace and mercy and His healing of our troopers. And a bonus. Momma is still sane!

So why has it taken so long to post an update (my mother and mother-in-law have both been advocating for all of you for over a month)? A couple reasons.

Humble pie
As I walk the hallways of Children's, stand in line at the pharmacy, park alongside other parents, I realize many of these people I casually pass by are overcoming tremendous burdens in order to function normally. I drove out of Children's with Evelyn 10 days after she had a kidney transplant and realized no one knows the struggles we have come through or will go through. They were just walking or driving by, maybe consumed with grief over a new diagnosis; maybe elated with hope of a new cure. When people stare at me obsessively hand sanitizing myself and my children I know they have no idea why.  They probably think I'm a germ-aphobe. I find myself less quick to judge while driving, shopping, observing. It makes me wonder what awful or wonderful things are going on in their days. Less judging, more wondering makes me less talkative.

Avoidance
It's hard to believe how sick Evelyn was and how difficult our lives had been over the past couple years. I think that is probably part of why I didn't want to write. I wanted to forget about the tidal wave of difficulties (Evelyn's diagnosis, hospital stays, treatments and medications, Keith's eye, car accident, my miscarriage, Shingles, Ada's pre-term delivery and tongue-tiedness, Marilouise's sleep apnea and tonsillectomy--just to name a few). I found that as we moved away from a period of time that seemed to crush us and almost obliterate us I felt less able to cope with small things. People would tell me they admired our family for our strength and ability to remain faithful to God through all our troubles. I didn't want to be stronger, extraordinary, or more faithful. I wanted my life to be neat. orderly, predictable, and always within my own ability to manage (rather than having to depend on God, as we do and don't always acknowledge). Our lives have been the antithesis of this.

Realization
I used to want to be a superhero. No capes or spandex (yikes!). Just impressive feats of valor. Over the past couple years, I grieved the loss of a normal life. I wanted normal kids, normal struggles, normal milestones so we could be normally happy. I was reminded of a folktale about three trees that live at the top of a mountain. Each one has dreams--one to be a chest to contain great treasure, another to be a mighty ship to carry kings, and another to remain on the mountaintop so people would look at the tree and think of God. The first two rejoice when they are cut down but are soon disappointed at being fashioned into ordinary things--a feeding trough and a lake-fishing boat. The last one felt the loss of a dream from the first swing of the ax to her ultimate resting as a pile of beams. However, in the end the feeding trough became Jesus' manger; the fishing boat the one carrying Jesus when he calms the storm; the last tree became the cross. None of those trees saw the fulfillment of their dreams until after many years of ordinary living. And then they were still ordinary. What changed them? The understanding that their hopes and joy were more fully realized then they ever planned for themselves. Now, I'm convinced that Keith and I and our three babes will also see that this was not the alternative to a good life but rather the best way to a better one.

Sunday, December 2, 2012

We miss you! Please join us at Football for Life


If you count up the months of hospital stays, dialysis, transplant, and now recovery it's been a long time since we've seen many of you! The Children's Organ Transplant Association for Evelyn team is throwing a Football for Life fundraiser and Keith and I will be there. It will be great food, a great event for families, and a great opportunity to catch up. Check out the Evite and come if you can!
If the Evite doesn't work the details are below:

Please join us for the Seahawks vs. Buffalo Bills game, food and drinks at the Edge Grill (former Fox Sports Grill) where we will be enjoying food, drinks, and Football for Life!

This will be a great event as we take over the Edge Grill to watch Sunday football and work toward our goal of raising $25,000 for Children's Organ Transplant Association in honor of Evelyn Sherman (http://cotaforevelyns.com/).

Come hear an update on how the Sherman family is doing, enjoy football and friends, and know that your donation will be "passing it forward" as you help meet some present and future transplant-related expenses.  COTA does not charge a fee or keep a percentage so all funds raised will help score a "touchdown" in honor of Evelyn.

The details:
1. Food and some drink tickets for everyone who comes are being generously donated.  That means that every dollar you would normally spend on food and drink can go straight to COTA in honor of Evelyn!
2. Kids are welcome - we'll have a kids section with cards and coloring pages that we will send to Evelyn.
3. Seahawks game starts at 1:05 p.m., but we'll be there at noon with food and drinks to watch the end of the morning games.  So come ready to cheer on your team and Evelyn's ongoing recovery from her life-saving transplant!

Please RSVP to Hope baldwin.hope@gmail.com or Karissa karissalynnetaylor@gmail.com so we know how much food to order, and please forward this to anyone who might be interested in coming, even if they don't know the Shermans.

Hope to see you all there!

Sunday, November 25, 2012

What's for breakfast? Because it's going to be a great day!


Morning meds, blood pressure and temperature monitoring
What's for breakfast? Eggo waffles, hand sanitizer, medicine, and sweet family time. Since we are homebound we have fallen into habits, both bad and good. Keith walks three or four times per day and usually takes Marilouise with him. The doctor told him exercise was the key to a quick recovery.We're still spinning plates so Eggo waffles seem to be the easiest and most popular choice in our house lately (no judging).
Anyway, we are doing remarkably well. Keith and I are both tired but we are amazed at how smooth this portion of our journey has been. We credit God's grace, prayers of our family and friends (and strangers, for that matter), and all the support people continue to show us. Evelyn is bouncing around playing with her sisters. Her meds still have unpleasant side affects but they are fairly minor and we are working on solutions. Keith is doing well unless he tries to pick up one of our children. It is a constant temptation to be the helpful husband and father he always has been when he should be taking it easy. We have one more week of 3x a week labs (Sunday, Wednesday, and Friday) and 2x a week clinic (Monday and Friday). The week after we have labs 2x per week and only one clinic appointment! And we haven't had signs of an infection or rejection! Her blood pressure was 166/110 when we started dialysis. Her blood pressure is now regularly 95/58. It is incredible! Daddy's creatinine is .9 and Evelyn's is .4! She isn't eating and drinking significantly more yet but we see small signs of gradual improvement. We used to have to coax and cajole her to drink more fluid (she has a daily goal of 2.5 liters). Yesterday, she drank an entire milk box and a juice box on her own! She's often saying, "No more tubies!" by which she means no IVs or HD catheters or Foleys. We have stopped giving her growth hormone shots for a year (we'll reevaluate her growth but may not have to restart). Her scar is long (10-12 inches) but thin. She won't be able to hide it from her husband but the only thing holding her back from a bikini is her parents. Long and the short? Keep praying but give thanks. He has been faithful and we are already seeing signs of a new normal. Love to all.
Birthday and homecoming celebration

Dr Dick and the thriving patient.



Sisterly love over a puzzle

Saturday, November 10, 2012

Home at last

I'm so thankful for Rebecca, Tarah, Annette, and all of our other friends and family who have kept everyone informed during our surprisingly smooth transplant week. The doctors are delighted by her recovery and how well Keith's kidney is functioning. They took one of her kidneys out and said it was terribly scarred from her kidney reflux. So thank you daddy for a fresh start!!! Keith gets really tired but feels better every day.
We are so relieved to be home today and can't wait for Marilouise and Ada to join us tomorrow. We are tremendously grateful that Keith's kidney seems so happy in its new home and that Evelyn is getting closer every day to her old self. Evelyn just asked to take a nap, which she did not take once in the hospital. She knows it's her birthday today and has asked for a banana cake and balloons when her sisters arrive tomorrow.
Love to all of you!
Julianne

P.S. - my young, especially at heart, father was in a serious bicycle accident two days before transplant. Broken nose, broken teeth, broken heart at missing Ev's big day. Nevertheless, he came to visit Evelyn almost a week after his accident and she was thrilled. Thanks for all of you who heard and prayed for Grandpa Kvernmo's recovery!

Saying goodbye to our lovely dialysis nurses.

Last meal before transplant

New pajamas from Grandma Sherman.

My brave, sweet man.


My brave, sweet baby.

Ev asked to sit up the morning after surgery and didn't want to lay down for 24 hours.

Finally fell asleep when I held her.

Sip of apple juice and 5 ice chips!!!


Coloring is hard when you've got 5 IVs, BP cuff, monitors, and a catheter. But she did it!

No showers? How about a shampoo cap? What they won't think of next.

"Grandpa, what happen to your face?"

Fun with Coban (purpose adhesive bandages were everywhere)


Waiting for Daddy and to leave ICU (she sat there for 4 hours!!!)

Kidney and owners reunited at last!

Semi-clean and totally cute in her new room and clothes.

Puzzle time!

Chill time.



Auntie Jennifer reading before procedure to remove HD catheter.

Amy, from Children's Child Life brought Ev a birthday present!

Well prepared for HD catheter removal. Lip gloss? Check. Purple purse? Check. Rubber chicken? Check.

On a roll in our red wagon. Exiting swiftly.


"Read to me, Daddy!" Home at last.


Friday, October 26, 2012

Top Ten Anti-crazy list

How are we surviving the 5 days until Ev and Keith undergo major surgery?
"I'm excited transplant is soon, Momma."

10) Pull frozen meals out of the freezer or thank friends when they bring the warm kind. Hot dogs also a winner.
9) Blog feelings; don't vomit them onto strangers to explain spontaneous tears.
8) Avoid public places. No illnesses allowed. Don't apologize for total germ phobia. Even if it looks like crazy, it isn't. I think.
7) Don't clean the house. Gratefully accept generous family members gifting housecleaning for a couple months.
6) Walk to the grocery store and let kids walk at their own pace. Twice as long, twice as peaceful.
5) Ask for an in-home hair stylist referral. Thank friend who brings stylist to home (first trim I've had in 9 months).
4) Listen to a 5 year old's silly stories. Be sure to catch the cute smile of satisfaction at the end.
3) Sing "Where is Thumpkin?" with one's 2 year old in the hospital cafeteria because she wants to. Loudly if necessary. Even "tall man", just don't look at who's looking.
2) Plan a date night for Sunday afternoon/evening. Select the best babysitter (I have her number if you need it) and the best date in the world (he's my hero).
1) Don't finish lists.

Just plain crazy

Happy crazy



Administrator of beauty

Chief Silly Officer

Always playing it cool

The best man I know.

Thursday, October 18, 2012

Enjoying the eye of the storm



Anticipation
Yesterday marked two weeks until Ev's first transplant. The anticipation is very similar to expecting a baby. Knowing the big event brings lots of changes, wanting to have everything set because the next 6 months will be difficult. In the meantime, our lives have been surprisingly peaceful. Thanks to all the wonderful people who have brought us meals and watched our non-dialyzing children, our lives are predictably chaotic. I didn't think these words would ever come from me but I'm really thankful for dialysis. I've learned a lot about dialysis, its blessings and curses, these past few weeks. The biggest thing I've learned is that I'm thankful for the pause it provides us before transplant.

Did you know?
1) Dialysis began in the 1940s.
2) The first adult outpatient treatment center started here in Seattle 50 years ago (Thank you, Northwest Kidney Centers).
3) The word comes from Greek dialusis,"διάλυσις", meaning dissolution, dia, meaning through, and lysis, meaning loosening or splitting
4) The three kinds of dialysis are hemodialysis, peritoneal, and hemofiltration.
5) Dr. Willem Kolff, a Dutch physician, constructed the first working dialyzer in 1943 during the Nazi occupation of the Netherlands. The first-ever patient successfully treated with dialysis was in 1945, a 67-year-old comatose woman regained consciousness following 11 hours of hemodialysis with the dialyzer, and lived for another seven years before dying of an unrelated condition.
New hardware
Keith & Evelyn arrived for dialysis last Wednesday at 8:00am. Unfortunately, her hemodialysis catheter was stuck so they had to replace it. They fit her in the schedule at 5:30pm, afterwards heading to dialysis. In those 9 hours of missing dialysis and her medicines (she had to fast before surgery) her blood pressure was back up to 166/100 (that's scary for a 2 year old who's ideal would be 95/58). I realized dialysis has literally given Evelyn life until we could get scheduled for transplant.

Unexpected Preschool
Keith takes Evelyn to dialysis Monday and Friday. I take her Wednesday and Saturday. Besides getting to spend a lot of one-on-one time with her, we have had the opportunity to do preschool (ABCs, numbers, cutting, tracing, gluing). Evelyn has to sit in her chair for more than 4 hours. A lot of the children watch movies and play video games. I'm not sure if it is because we don't have a TV but Evelyn's media limit (before she falls apart and gets really cranky) is about 30-45 minutes. That leaves us with a lot of time to fill in with other activities. Thankfully, we get to play with play dough. We do Legos. We read books. While it's not always fun (dialysis sometimes makes her "cramp" or throw up or cry because she feels lightheaded and miserable) overall she's made the best of it.

The eye of the storm
On the days when Keith takes Evelyn to dialysis I stay home with the other cuties. Our house was hit by a minor bug this week so we stayed home from our school co-op this Monday. Marilouise, the social butterfly, was so disappointed to miss her friends and her class's "back-in-time travel". However, I painted her nails after math and reading and thawed out a frozen treat from our friend, Kirsten (sweet potato casserole). We sat and read a book together on the couch during Ada's nap. This isn't what I expected with dialysis. And it is thanks to all of the people in our lives who are loving us in practical ways and lifting us in prayer. I don't think I want to build a summer home here but our lives are actually quite lovely.


Nail therapy
Saturday after a special service at church