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.

Day 20

Not sure how this happened so quickly but this guy (pictured above) has been showing up at Tessa's room at various times today hinting that he might give her the boot.

Tessa is doing so well without the ventilator and the ICU is so full right now that they may move her out to "The Floor" (The Ward)...floor sounds better but not by much. Bedspaces are so hard to come by that they're moving out the less critical patients to make space for new blood (bad pun not intended).

Apparently Tessa is #2 on the list and will be kicked out either today or tomorrow at the latest. Katie and I are almost shocked at the news. We had mentally geared ourselves up for at least another week or two in the ICU but yet again, Tessa had other plans.

She's still very dazed and confused and going through some minor narcotics withdrawal so as you can imagine, she's not super stoked on life right now...but incredibly stoic. She's coughing alot which is good for helping get all the fluid out of her chest but other than that she seems relatively comfortable and is breathing with only a little extra exertion.

I can't imagine what it must feel like for her and how scared she must be but apart from the occasional silent tear drop, she is the true picture of unwavering calm and endurance.

She has been one of the best patients (all the nurses say)...doesn't complain and always cooperates...well almost always...she is Tessa after all and has her mind made up about everything. Some things you just can't convince her to do.

By the way, last night while Hillary Redlin was visiting, Tessa tasted her first food in three weeks...a cherry popsicle.

Day 19

Need I say more?

Well maybe...but for now we'll just leave it at that.

Day 18

Sorry for not updating yesterday although it turned out to be a relatively uneventful day which is good. She went the entire day with no dialysis, no dopamine (blood pressure medicine) and no significant issues or hiccups.

Today was a little more action packed or so I've been told by Katie who is at the hospital right now.

Her chest tube was removed...yeeeehaaaw...Tessa minus 1 more tube.

Her catheter for dialysis was successfully installed...right on!

And best of all, the doctor told KT that if today's dialysis goes as planned, tomorrow may be her first day sans ventilator tube....whaaaat?

It'll only be for an hour or so at first to see how she does and then put her back on the ventillator. Then friday they'll extend the time she's off it for a bit more and so on and so on...

If all that goes well, there's a good chance we'll hear the little princess speak for the first time in almost three weeks.

I don't care what words first come out of her mouth. I just want to hear her ROOOOAAAAAARRR!

If only they could put hot chocolate down my feeding tube!

Day 16

No she's not getting ready for a spring skiing trip. And no she's not auditioning for a part in the new "Conan the Barbarian" movie . These are boots she wears on and off all day and night to prevent "foot drop". It's a condition that can be brought on by a prolonged stay in the plush, overly mechanized reclining beds of the ICU. Basically if the feet are allowed to relax and "drop" forward, the muscles can get used to that new positioning and it can take more physical therapy to overcome it once the patient is up on his/her feet...and yes, I'm going to insist that Tessa gets to keep this pair...she'll be the only kid on our block with a set of these puppies and considering her already over-developed shoe fetish, don't be surprised if you see her sporting these at Muir beach on a hot summer day.

Overall, Tessa is better and better each day. Her lungs continue to clear up...absorbing more and more oxygen with every breath. 

The secondary infection is still lingering a bit however once again, it looks like Tessa has managed to turn a pesky challenge into a great opportunity. Due to the fact that the bacteria was likely hiding up in one of her many lines, the doctors finally decided to simply take those lines out....duh! The downside to that was that if she had any blood pressure issues or other emergencies, it would be more difficult to get her medicine. The upside is that she has fewer tubes going into her that can re-infect her and if she handles things without any BP medicine (which she has since they pulled out the lines 7 hours ago) then they may not need to put at least one of those lines back in. They will have to put the catheter in her groin back in for dialysis but by tomorrow morning if all goes well, we could be looking at one less foreign object stuck in her that could be vulnerable to yet more infections. I know it seems like a small step but every time they remove a line or a machine or hanging bag of some liquid or a sedative or a blood pressure drip or a breathing machine or mysterious beeping monitor or even an extra pillow that she no longer needs...it's progress. 

Tonight my sister made the rather obvious observation (which I was oblivious to) that the lights in Tessa's room have been toned waaaay down and the nurses are keeping our door shut more often. I guess I'm too focused on her getting better to notice my environment much anymore but it can only be a good thing when you don't see doctors and nurses constantly milling about a brightly lit room with doors open and all sensors on high-alert. 

No doubt we still have a long road ahead but at least Tessa has the right footwear for the journey. 

PS. Thanks for the visit sis! And thanks to Alicia and Adam London for a great dinner! 

Day 15

Sorry for the skipped day yesterday. Only things to report from yesterday was they switched to the temporary dialysis (hemodialysis) from the continuous round-the-clock dialysis. Yet another step in the right direction. 

Today was more of the same although no dialysis at all today...so all the pent up fluid in her system is making her a bit puffy.

Lungs are better. Blood pressure is better and she's no longer on any BP medicine. Her color has returned to normal and she looks great.

She's been waking up and trying to pull her tubes out so we had to restrain her hands which actually had the effect of calming her down and she slept most of the day without an addition of sedatives.

The secondary infection is still an issue but it seems like they're getting closer to a solution.

The plan is to do another dialysis session tomorrow...see how she handles it and continue on with the same treatments.

More tomorrow...

 

Missing the old (unhospitalized) Tessa

Day 13

Sorry for the late posting today. Just got a break in the action to report.

Tessa is increasingly more awake and active. All of her vitals are pretty good for the most part. Lungs are improving although there is some concern about a part of one of her lungs that was affected in the catastrophe earlier in the week. I won't go into the details because it's too early to tell what it means right now but the good thing is that her decreasing dependence on the ventillator should only help heal her lungs. One problem is that she's coughing up alot of gunk, which is a good thing because it's natural for the body to expel all that fluid that has accumulated however the coughing also agitates and inflames the lung tissue so it's a double-edged sword.

She's also very fidgety and shifty. Part of it is just waking up and being annoyed by all the hardware attached to her. It's also a result of all the narcotics she's had pumped into her the last two weeks. It's similar behavior to what a heroin junkie goes through during withdrawal. In addition, since she's been off the dialysis maching going on 20 hours now, a certain chemical that the kidneys normally filter and expel is building up in her system. That particular chemical is also a skin agitant. It's really tough to see her so uncomfortable and apart from giving her Benadryl and scratching her belly, there's not a whole lot we can do ease her discomfort.

Kidneys are the same. Still no wee-wee.

Secondary infection is still being sorted out. I think they've almost gotten to the bottom of the mystery so hopefully her fever and associated blood pressure issues will be resolved soon.

She had a great night last night and relative to past days is having a good day but there are still so many ups and downs that we're contending with. It's a two steps forward, one step back mode that we're in and Katie and I are having a tougher time trying to keep our patience with all this. We just want her to come home.

PS. Thanks Andi Hatch for those scrumptious noodles last night and for visiting Tess!

Day 12

She's getting better...and feistier!

She's waking up more and more...and scratching some mysterious itch on her belly...and I guarantee that if she didn't have a breathing tube down her throat, she'd be screaming her head off. That sounds bad but it's a really great sign that mentally she's returning to normal...not that it's normal for Tessa to be screaming her head off...let's just say she's decisive and isn't afraid to let you know how she feels.

She reacts to voices, will follow you with her eyes and responds to certain commands...all really good indications that she's neurologically healthy.

Yesterday's night nurse said she had a great night...no major setbacks apart from battling the ongoing secondary infection which they're honing in on.

Lungs are looking and working better and the rest of her system is following. One of the fellows on the renal team said that when a child gets as sick as Tessa, everything gets bad systemically but conversely, when things turn around for the better, everything seems to return to normal...gradually. We're still in for some tough times ahead no doubt but it's so encouraging to know that all those hormones and enzymes and red blood cells etc, (all the things behind the scenes) are returning to normalcy.

A HUGE thank you to everybody for continuing to send good thoughts and prayers Tessa's way. It's amazing to Katie and I just how many good people we know and are surrounded by and how many good people those people know. Prayers are coming from all over the country and as far away as Finland, France, Spain and Canada....

We truly feel lucky. Thank you!

A way to help Tessa and others

Alot of people have been asking about ways they can help Tessa and it occurred to Katie this morning that one very tangible way to help her (and others) is to donate blood.

I know, I know...you've heard about blood shortages before and the need for donations and that certainly applies here however due to Tessa's condition, she can only accept blood from the blood bank that is less than 5 days old. I still don't understand the full reason for that but we do know that it's one of the reasons why it's been taking so long to get Tessa a transfusion in between the time the blood is ordered from the blood bank and ultimately delivered to her room. Tessa has been going at the rate of 1 transfusion every day or every other day. Hopefully that will taper off really soon but in the meantime, every little bit helps.

If you happen to have O positive blood type and are willing to part ways with several million of your closest red blood cell friends, please go to the UCSF blood bank which is across the street from the Children's Hospital. Here's a map: http://maps.google.com/maps?hl=en&client=firefox-a&ie=UTF-8&q=UCSF+Children%27s+hospital&near=San+Francisco,+CA&fb=1&split=1&gl=us&ei=YA7dSbKWLpDoMMat1dQN&cid=11185673583927457723&li=lmd&z=14&t=m

And if you're not O positive, you can still be a huge help to others and even to kids like Tessa.

And if you're really squeamish about blood like me and faint almost every time you give blood...then please be careful. I'm gonna donate as often as I can so I may see you there. I'll be the one wearing a bike helmet passed out on ground with smelling salts jammed up my nose.

Day 11

Tessa is having a really good today.

She had a stable night last night and appears to like being on the conventional ventilator. Throughout the night she was opening her eyes and actually using her hands to try to remove the tape around her mouth. Of course the nurses can't be having any of that so they gave her something to relax a bit. But those are great signs of her mental alertness and how strong she is despite all that she's been through so far.

When Katie and I saw her this morning she opened her eyes in response to our voices. So great to see her beautiful eyes wide open! Her secondary infection seems to be under control judging from her vital signs and even her X-ray showed significant improvement in terms of the clarity of her lungs. No real change on the kidney front.

All-in-all, the doctors and nurses are pleased with her status today. It feels like she's finally turned that corner for real.

Right now she's listening to some of her favorite tunes.

Day 10

We had a real close shave early this morning—way too close for comfort. She is now stable as far as her cardio-pulmonary system goes however Katie just informed me that they've detected a secondary infection in her blood. Not uncommon in these kinds of cases.

This is such a roller coaster ride and one I would never wish on anybody.

Day 9

Tessa is still in the Pediatric Intensive Care Unit (PICU) at UCSF Children's Hospital where she'll most likely be for an extended visit. It's still unclear how long though.

Last night was a bumpy night.

All-in-all she's improving although gradually but improving nonetheless.

We've put up all kinds of get well soon cards and drawings all over her room as well as pictures of Tessa so that the nurses and doctors see how much love and support she's got. A big thanks to Samantha and Thomas Sternfels and all of their schoolmates for the outpouring of cards. My favorite is the one that says: "I hope you be helltee. I hope eveebutey bee helltee." That cracked me up. Who knows if it affects how the hospital staff does their job on Tessa but it certainly seems to humanize the situation and they all comment on how cute she is and how funny some of the cards are.

Dats enuff for tooday.

me and my future boyfriend Tristan

future doctor?

Day 8

Thanks everybody for tuning in and for all the comments and support so far...I know Tessa is smiling on the inside knowing so many good people are sending her positive thoughts.

As of this morning she's continued to be pretty stable. Most of her vitals are in the safe range and have been holding there for going on 70 hours now. Of course there's always the occasional spike in sugar levels (not surprising considering Tessa's sweet tooth) or the drops in blood pressure but usually those issues are balanced out. We're discovering how finicky the human body can be when it's really sick and it becomes a constant balancing act keeping things regular. 

We have not seen the latest X-ray which will hopefully show that her lungs have continued to clear up. She's still on continuous dialysis which is going well and she's still on the oscillator breathing device which the doctors may ween her off of either today or tomorrow which would be yet another step in the right direction.

All in all she's hanging tough today but please keep sending that positive juju...it's working!

much love,

KT and Erik

Day 3 or 4

Day 7

As most of you know, Tessa is going through a pretty serious set of health issues right now. We decided to start a blog to give periodic updates on her status so that family and friends can check in at any time and see how Tessa is doing.

As of today, Tessa is the most stable she has been in a week. It's the first 24 hour period that we haven't seen deterioration. The pneumonia has socked in both lungs however X-rays indicate that the amount of infection and fluid in the lungs has not gotten worse in the last 24 hours. It hasn't gotten visually better either however her vital signs indicate that she's able to absorb increasingly more oxygen and dispel increasingly more carbon dioxide. Yesterday about this time she was switched from a conventional ventilator to an oscillator which is an alternate method of artificially breathing for her that involves expanding the lungs and vibrating or oscillating them at a prescribed frequency. It worked like a charm and almost instantly her vital signs improved.

We have a thousand times more hope today than even yesterday morning. As one of the nurses told us yesterday, every little victory is HUGE and stringing a few of these small wins together is a really good sign that she may be turning the corner.

This is potentially going to be a long, drawn out experience for our little Tessa and our family...a marathon, not a sprint (yet another cliche the doctors like to use)...and we're so appreciative of the love and support everybody has shown so far.

PS. I promise that future posts will be much more brief than this first one