The One Year Mark.

We made it to One year!

Obviously we haven't posted anything recently but this is such a major milestone for Tessa and our family that we had to share it.

366 days ago Tessa was still dependent on dialysis to get through her days. Here we are a year later and she's a different person. She's full of energy and eager to play just like any other healthy 4-year old. She used to go to the dialysis unit three days a week. She now goes to school 3 days a week. She's doing ballet and swimming and learning to ride a bike. A year ago, she didn't have the energy to do any of those things. We are constantly amazed at her transformation so far and every day we give thanks that she's healthy. Now we're the ones sapped of energy just trying to keep up with her but we wouldn't have it any other way.

We wish you all health and happiness these holidays and many thanks for all the support from friends and family over the last couple years.

The Ulvestads

She's got jokes

"Why did the bee go to the doctor?...Because he had hives."

Tessa told me that joke over the phone the other night. We were both cracking up. It's really the first joke she has told in her life and although I'm not entirely sure that she understands it nor do I know where she learned it, the fact that a 3 year old in her situation is able to tell a joke is remarkable. We think one of the doctors or nurses may have told it to her when we were out of the room and she remembered it. I'm less amazed at her ability to remember since we're pretty sure she has a photographic memory. I was more impressed with the fact that she's developing her own sense of humor in the midst of everything she's going through.

My pops and I are off to the hospital to visit with Tessa and give Katie another much deserved break. Tessa is doing better by the hour. Walking more, talking more, laughing more, eating and drinking more with fewer stomach problems. She's hasn't vomited for almost 48 hours. Getting closer and closer to coming home! That could be as early as next week. It's looking more and more like we won't be having a hospital Christmas after all...

more to come...

PS. apologies for the somewhat random picture but it got your attention didn't it?

Starving artist

Tessa's new kidney continues to progress in the right direction as well as her vital signs so those are the important things and we are thrilled about that. So far, no signs of any rejection or severe damage to the kidney caused by surgery...priority numero uno and dos!

Less important but still a bit concerning is that she's having a difficult time keeping food down. Of course major surgery involving general anesthesia will cause nausea for several days after surgery but here we are a week later and we can't get Tessa to eat much because every time she does, she throws up...so nutrition is becoming an issue. Some of the causes include the fact that there is an ever expanding list of medications that she's on, fluid levels that are all out of whack, high blood pressure, and an oversized kidney that is bullying her stomach and other organs. All, some, one or maybe none of those factors is causing her to vomit every few hours. The doctors still can't figure it out. Frankly their methods for problem solving this appear to be mediocre at best...but I'll go into that issue another time.

In the meantime, we are initiating our own highly sophisticated, super top secret, patent pending system for deducing the cause of the nausea through a radically advanced data analysis matrix with built in logic. We call it P.O.E.: "process of elimination". Surely you've never heard of it. I don't think UCSF is on to it yet but they could be any day, hence the patent-pending part.

Anyhow, we'll get to the bottom of it before Tessa wastes away.

To pass the time and take her mind off the nausea, Tessa is methodically depleting the playroom of all of it's art supplies. They are officially out of Elmer's glue, dot pens, animal puffy stickers and watercolors (see pic attached). It's pretty amazing how focused she gets when in the middle of an art project. My mom, dad, Tessa and I spent over an hour creating things and there were about 5 sentences spoken the entire time...one of them was "I have to spit up" after which she proceeded to vomit, scream, calm down, clean up, and then quietly went back to her watercolors. Unbelievable! True dedication to her craft.

I'll leave things at that for now. More to come tomorrow.

Blog to blog

I also wanted to point you all to our blog/site for Tessa at COTA, the Children's Organ Transplant Association. COTA is supporting us in our fundraising efforts. Thanks in advance for visiting/reading/giving/praying, etc...

http://cotafortessau.com/

Walking tall

Hello friends! As most of you know already, Tessa and I completed a successful organ exchange last Friday. Tessa is recovering beautifully and is already up and walking, in addition to eating her first banana in 9 months and peeing more than 10 cc's at a time. She has been incredibly stoic and brave during the last several days and is improving by the hour. We feel so lucky that we have gotten this far and the future is finally looking a bit brighter for the Ulvestad family.

For those of you who weren't aware, I certainly don't blame you. As we became accustomed to our new lives with dialysis and all the rest, we got out of the habit of updating this blog. Things became normal again...at least in relative terms and we simply tried to go on about our lives the way that everybody else does who isn't going through something life-changing or traumatic. We've also been living in a surreal, sleep-deprived state for so long that our capacity for living has been stripped down to the bare essentials. We had spent the last few months undergoing thorough cross-matching and health testing to determine our compatibility and the green light went on just a couple weeks ago. It has been a blur since then. But now things are coming back into focus for us (somewhat) and we hope to keep everybody informed on a more regular basis.

I won't go deeply into the medical details right now other than to say that the doctors are still tinkering alot with balancing out all the meds, blood pressure issues, eating difficulties, etc...however the docs and the research we've done say that it's par for the course to have alot of ups-and-downs within the first 6 months and that we should get used to a bumpy ride.

Well the ride started out with a free fall. After the operation, the kidney took many hours before it began making urine. Typically, the transplanted kidney is already doing that even before it's hooked up to the recipient's ureter...so needless to say, the first six hours or so were super-stressful for our family as we waited for pee. My blood pressure has never been so high and I'm pretty sure that was do more to Tessa situation than my own surgery. Fortunately, the kidney kicked in around 6 or 7pm or so the night of the operation (surgery started around 8am that morning)...give or take a couple hours (that part is still a blur for me). Biggest relief of my life. Blood pressure dropped 20-30 points right then and there.

So he we are 5 days later and all the numbers are trending in the right direction. Tessa is walking, talking, laughing (which hurts), obsessed with administering pretend Tylenol by IV to her hospital doll, and well on her way to becoming either a very good doctor or nurse in her future...or an artist :)

Thanks to all for the love and support! I would call out names of people to thank but that would take another hour of typing.

More updates to come as the ride continues.

PS. The giraffe in the picture was a gift to Tessa from my co-workers who remembered that they are her favorite. She can't wait to get home and see it in person.

sweetness

Trip to OC in uncle Bob's plane