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

Mello yellow

The ladies

Tessa in SF

Kidneys? We don't need no stinkin' kidneys?

Well...actually we do but still, does this look like somebody who would succumb to such a problem. After most of the day at the hospital, Tessa checked out OK and they let her go home this afternoon. No more overnights in the hospital thank you! Anyhow, there's still some fluid in her left lung but much less than before and steady dialysis treatments along with new and improved fluid regulation should keep that problem at bay hopefully. She was quite a trooper apparently. She refused the stroller and insisted on walking the whole way from the hospital to the car. I know it doesn't sound like alot but she wouldn't have done that last week. Every day she grows a little stronger (and more stubborn) :)

Day 65: The saga continues

Sorry for the inactivity on the blog but we've all been really busy helping Tessa heal and get back to her old self. I know that some people have been wondering what's been going on the last few weeks and to be honest, there weren't any real notable events to write about...just steady improvement in terms of Tessa's physical, mental and verbal status...until the last few days. We thought we were on pretty solid footing there for awhile but we've run into another ongoing issue unfortunately.

Tessa has been very happy at home...getting back into a routine...dialysis thrice a week and the therapy has been going really well. She's been much more vocal and her vocabulary seems to have grown tremendously now incorporating words like "dialysis", "hospital", "medicine", "BP" (blood pressure), etc...The last few months she has spent so much more time in the company of adults than in the company of other kids her age that's she's absorbed words that other kids wouldn't or shouldn't need to know. She has also matured so much throughout this whole experience. The amount of patience she has with taking her meds and going to dialysis at the crack of dawn every other day is astounding. We're constantly amazed by her resilience. She has been more energetic...especially after dialysis when her toxicity levels are lower and she's silly and cute like a 2 1/2 year old girl should.

Unfortunately her kidneys are still not doing a great job of flushing out fluids or filtering toxins and last week, there was so much excess fluid in her system that it started to affect her lungs. Even with regulated fluid intake we're having trouble keeping her dry enough. Last night we had to make a trip to the ER because her breathing was uncomfortably rapid. She did calm down eventually and her breathing slowed enough for us to go home and wait until this morning's dialysis treatment when they took more fluid off. However, the docs are still concerned and want to monitor her more closely. As a result, she's going to be re-admitted back into the hospital tomorrow to get dialysed again (back-to-back days) and hang out for awhile so that they can keep a closer eye on her.

Obviously we're all a bit discouraged about this latest hiccup as we seemed to be getting back into a groove and the last thing we wanted to do was put Tessa back into the hospital environment which already had a pretty traumatic effect on her. But I'm confident that with another dialysis treatment and getting back on the diuretic, we'll figure out how to maintain a healthy fluid balance.

The one biggest positive out of this latest chapter is that the last couple X-rays have shown that the air pocket in Tessa's lung that developed back in the ICU is no longer showing up so we're relieved about that.

I'll do another update tomorrow after we have a better sense for where things are and I'll make an effort to put up some recent pictures of Tessa.

Again, sorry for the gap in updates and thank you all so much for the ongoing support. It's great to know that so many people are thinking about Tessa and praying for her to get better. We truly appreciate it!

Day 45

Those of you who are still actually checking this blog will be happy to know that Tessa is making great strides in her improvement.

She's pretty much walking all by herself.

She's starting to talk much more and her sense of humor has come back strong.

She still has the feeding tube which we're trying to find ways to get around in terms of alternate ways of getting her the required nutrients and medications. If we're successful with some of our methods, we can pull out that tube, leaving only one last tube...her catheter for dialysis.

Tessa's kidneys still have not regained alot of function. She is urinating and although her kidneys are successfully transferring liquids to her bladder, they aren't yet doing the best job of filtering out all the toxins or waste products in her system. As a result, Tessa will continue doing dialysis three times a week until either her kidneys regain a more normal/sustainable level of function or until she is required to have a transplant. Obviously we're hoping we can do everything to avoid the latter but it's almost entirely up to her kidneys. We've been regulating her diet pretty closely so that she' eating kidney friendly food but it's been tricky trying to keep her potassium and phosphorus levels low so as to avoid high blood pressure.

In any case, she's regaining energy and quickly getting back to her old self which is so great for all of us to see. It's been like a re-birth in many ways or like condensing 1 year of development into a week and half. Who knows what she'll be saying or doing in another week.

Day 38

Tessa is back gnome!...I mean home!

Day 35

Wow. It's been several days since the last post. It almost feels strange to be doing this still but I wanted to say that Tessa is doing great and making big strides every day...literally. With a little help she's able to take steps and can support of all her own weight while standing. I had her doing squats earlier this evening to get her little chicken legs bulked up to what they used to be a month ago...oh...I almost forgot to mention...she's been peeing. It's just been small amounts a few times so far but it looks like those kidneys have finally come around. 

All in all, Tessa is rapidly getting back to her normal self. I say "rapidly" because in relative terms we've seen a dramatic shift in her improvement just in the last several days. In reality, she still has a ways to go before she's back to normal mentally, physically and verbally but for now all we need to see is progress. Hard to believe this all started 35 days ago...feels like a year to Katie and I. 

Day 31

Sorry for the gap in postings but hopefully you've inferred that her continuing improvement warrants fewer updates. There really haven't been any (negatively) game-changing developments...just the little ups and downs that we've become accustomed to.

One significant piece of news is that the little monkey is actually trying to climb out of bed by herself. It's great that she's getting more physically aggressive but it means that she requires constant vigilance. She still isn't allowed to walk due to the potential for clotting in her leg catheter. That catheter will be relocated to her shoulder or neck sometime tomorrow and after that, she can begin more intensive physical therapy.

In the meantime we're continuing speech therapy and upper body physical therapy to get things moving along.

This morning, Katie and I talked about trying to get Tessa to come home as soon as she recovers from the catheter relocation. That could be as early as this weekend. Of course we'd continue to do out-patient physical and speech therapy as well as dialysis treatments but we think Tessa will be a lot happier at home, in a comfortable, familiar environment with a lot more space.

We'll try to keep her from jumping off the bed tonight and see how things go tomorrow.

Day 29

Much better post this time than the last. Tessa is seeing much better now. She's tracking movement and can see at a detailed level as well as depth. What a relief. Of course it fluctuates from day to day, hour to hour so we're always cautious about getting too excited. Still no pee. But she can see.

Day 27

Lots of tears today. 

This one ranked pretty high up on Katie's emotion scale. 

It's as if the immediate reality of the situation is hitting Tessa — and watching her trying to process it is almost unbearable. I don't want to go into all the sad details. She's just battling through it.

There aren't really any new developments from a medical standpoint that are worth mentioning tonight. 

I guess the extreme optimist would say that Tessa's show of emotion today is clear evidence that's she's getting more with it...after all it's a natural reaction that you would expect and even hope to happen for any 2 year-old that's going through something like this. I might even be more worried if I never saw her shed a tear at all. So from that standpoint, the show of emotion is reassuring...but it's just hard to witness as a parent.

Day 26 (part 2)

Me: "What does a goat do?"

Tessa: "Ehhh, Ehhh" (bad goat phonetics on my part not Tessa's)

Me: "What does a frog do?"

Tessa: "Ribbit, ribbit"

Me: "What does a lion do?"

Tessa: "Roooooaaaaarrr"

Me: "What does a doggie do?"

Tessa: "Woof woof"

Me: "What does a snake do?"

Tessa: "Sssssssssssssss"

etc... etc...

Those are all animal sounds that Tessa learned many months ago....and she remembered them! The above wasn't a conversation from 4 months ago. It was an actual conversation from 4 hours ago. I was stunned. The difference between her word usage this morning and this evening was massive.

It was so encouraging to see her laugh and smile as we cycled through some of the same old silly jokes and routines that we've had. It's all coming back and fast.

Vision wise we'll still need to wait and see although the first exam by the opthamologist this afternoon revealed that there is nothing wrong with the eye itself. The optical nerves on both eyes are fine and there was no evidence of damage to either eye. Most likely there is a neurological reason for what's going on but there is still a great chance that whatever vision issues she has now could be reversed.

The physical therapist won't begin any real walking therapy until her catheter is either out or moved from her leg to her shoulder or neck but he was confident that once she begins therapy, it should only take a week or two before she is comfortable back on her feet.

The vision thing really had Katie and I concerned today but we have to keep reminding ourselves not hypothesize about what may or may not happen tomorrow or next week or next year and just stay positive about all the great improvements that are taking place now. We get so engrossed with Tessa's development that it's hard not become almost greedy...wanting more improvement more quickly with more certainty. Obviously that isn't realistic and I keep conjuring up images from that crazy night 2 weeks ago when it seemed to me like we were going to lose her. Got to keep things in perspective...

Right now, my perspective is of Tessa sleeping deeply in her hospital bed and that's satisfying enough right now.

Day 26

Yesterday Tessa sang her first song in over three weeks. It was the first couple of lines to "Happy Birthday". Today she graduated to almost the entire "Twinkle-twinkle little star" song. It's great progress along the memory and speech fronts! She is getting more coordinated manually and can respond to commands. For instance she can put her finger on her nose when prompted. She has been calling out people's names and the list of names is growing and growing. She's breathing terrifically, handling the dialysis quite well and even getting some good sleep at night and the occasional daytime nap.

The latest concern is that her vision seems impaired. To what degree we still don't know. She is not making much eye contact and apparently when playing with toys that one of the physical therapists brought in, she responded to the descriptions of the various squares and triangles and circles with: "I want to see it." That broke Katie's heart.

It's very odd though because 4 or 5 days ago she was pointing out the small illustration of the train in the book "Owl Moon"...one of Tessa's favorite books. It seems that whatever vision she had then does not exist to that degree now. The neurologists and therapists can't really explain it and even think that while and MRI might be able to show an area of damage or compromise in the brain, it probably would not help them understand what's going in terms of Tessa's vision problems.

Still, we do know that HUS can affect blood vessels in the brain and that in the overwhelming majority of those HUS cases, the damages are short term and eventually clear up. If in fact HUS is affecting a part of the brain that is associated with sight, then maybe that will reverse itself once the HUS clears up. We hope that's the case and that when the HUS symptoms/effects completely subside, so will some of these mental and vision issues...but nobody knows if or when.

Altogether, it's a mixture of uplifting progress on several fronts but tempered by some real concerns about long-term or permanent damage that the doctors are voicing.

We just have to wait and see and hope Tessa does as well.