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.

Day 24

Well Tessa got expelled from the ICU for the second time (in this case expulsion is a good thing).

Lungs are continuing to improve and although Tessa is still obviously traumatized by everything and going through significant withdrawal, she seems to be showing some small signs of improvement both in terms of physical coordination and mental acuity. Her fine motor skills manifest themselves in an almost ceaseless rubbing together of her index finger and thumb. Sometimes she tugs at her earlobe or does the occasional "thumbs-up". Katie said that this morning before I got to the hospital, Tessa grabbed her sippy cup in both hands and brought it to her mouth for a drink...it seems like a little thing but that is HUGE progress over where she was even yesterday. She still makes very little eye contact but there are moments when her gaze seems to fixate on mine or Katie's for 10 or 15 seconds...again, 10 or 15 seconds longer than yesterday.

These are very slow-developing improvements but it's starting to feel like that delirious fog is beginning to lift, gradually revealing the old Tessa that we know is still in there.

The last couple of days has given me so much appreciation for the complexity and resilience of the human mind. I've personally never had any experience with neurological issues (at least nobody tells me) nor have I ever studied much about brain. But it's such a powerful organ and one that we take for granted. You break an arm and you put a cast on it. You slice your foot and you stitch it up. You damage the brain and the problem is so nebulous and medically misunderstood that the solution is seemingly unimaginable. So far most all the work that has been done on Tessa has been fairly mechanical...inject oxygen into the system, drain the lungs of fluid, kick-start the kidneys, etc...but when it comes to the brain, there's nothing mechanical about it. There's no magic machine to fix it or revolutionary drug to reverse whatever damage has been done.

Still, we have hope and we have plenty of time...and we have one wickedly smart little girl that has more determination than I could ever have in a thousand years.

As for that whole ICU production, let's hope today's take was the last.

Day 23

Sorry for the recent gap in postings but the last 72 hours have been pretty difficult for Tessa and for us as well.

After moving Tessa out of the ICU on Friday, things seemed to be going okay in terms of respiratory functions and continued improvement with blood chemistry/metabolism etc,. We were so happy to be out of the ICU environment which is so chaotic and intense and no doubt pretty traumatic for Tessa. Unfortunately, Tessa wasn't sharing our happiness about the new digs. She started acting even more detached and delirious and by Saturday morning the "neuro" team recommended that she be moved back into the ICU after undergoing some tests. None of the tests really showed anything conclusive which is good since it helped to rule out any major trauma like strokes, seizures, blood clots, irregular brain activity, etc,...but still nobody seems to have any concrete explanation for Tessa's mental status.

Katie and I think that the combination of narcotics withdrawal and subsequent methodone treatments, the generally traumatic experience of waking up in the ICU with many different people poking her with needles and subjecting her to seemingly tortuous tests, and the ongoing HUS condition which can affect blood vessels in any part of the body including the brain, may have put Tessa in a state of shock that will take some time to come out of. She does have some emotional and physical responses that seem very normal to Katie and I so we're really hopeful that she'll come through and eventually be the same little Tessa that she was before this ordeal began. In the meantime, we'll just be happy to have the Tessa that is.

The somewhat good news is that Tessa will likely be moving out of the ICU and back onto the floor today. UCSF has all these little red wagons like the one pictured above that parents can put their kids in to cruise around the joint before they're able to walk. If all goes well today, Tessa will be out of bed and in a wagon, getting to know the 6th floor a bit better.