Bronch done, now waiting for Airway Appointment...

So, Kiera's bronchoscopy wasn't as nice as it could have been. Plus, Kiera, is pretty ticked off about the whole thing so trach changes have become a bit more adventurous. She has a granuloma in her airway above the trach that needs to be surgically removed before with can look at decanulation. It looks like the ENT doc may not be able to get her in till late August! I am pretty dissappointed since we only have a small window when they will decanulate. (No decanulations happen during RSV season). Then I had the pleasure of the med frag case manager telling me, "You need to get on this. This is very unusual for a child to have their trach this long. None of the kids I work with have had theirs this long." etc, etc, etc...I paraphrase. Like I haven't been trying to get this done since April!? Like I don't realize Kiera's course is extreme!? Like I need someone pressuring me to get mor things done!? ^%@(%^$ Thanks for the input. Of course, what does she know...5 - 9 years seems to be a norm for some of the people I have met with airway issues.

Anyway, we're in limbo for a little while. Kiera's EEG was abnormal while sleeping so they increased her seizure meds. Food is getting better, and a formula change to Compleat is a huge improvement in the diaper department. Gotta go for now. Just had to vent.

Finally!

Okay, I know I've been quiet in this forum, but life has pretty much been routine for a little while. We are still waiting with bated breath for respiratory counts in the PICU to decrease enough that we can get Kiera in for an elective bronchoscopy and start looking at procedures for possible decanulation. Things may step up in activity soon.

The BIG news is...Kiera signed potty and went #2 in the potty for the first time ever! (Yes, I realize she will be 5 in August). I don't know how consistent this will be, but it's certainly a first step.

No Vent since Monday 3/28 7AM!

So the countdown begins! Kiera is officially on her HME with between 1/2 liter and 1liter O2 24 hours a day! Her Ventilator has gone dormant! We are trying to schedule a bronchoscopy for her near the end of April to investigate our next step toward getting her trach tube out. Things just seem to be happening exponentially around here.

By the way, she is getting to be such a big girls. She is oh so BRAVELY attempting to eat some bites of "big girl" (baby) food.I may get adventurous and start grinding some things too. She can also put her HME back on by herself when it falls off. Sometimes she needs a little help, but when she can't do it, she holds it close to her trach tube until she can get help from an adult.

I guess that's all I really have for now. There will definitely be more to come!

Kiera can READ!

Yup...she's a genius. :) Kiera has been reading her sign language book to us for about the last month, and I was wondering if she recognized the words or just the pictures and illustrations of the signs. Soooo...with my 1st day off for spring break I wrote some of her words on a piece of paper and tested her. She was a bit distracted wanting to do other things, but she very clearly recognized and read (using sign language) 7 words: FRIEND, DIRTY, CLEAN, GRANDMA, BOOK, READ, and TRAIN. I am pretty sure she knows others, but I will have to test her later when she's in the mood to tolerate me. :) She also correctly identifies many letters of the alphabet and has been reading her I SPY alphabet book. I think her favorite letters are E and X. She can also spell GLUE and I think reads that word too. What a smarty pants! I'm so proud of her.

I have long loved this poem

A MONGOLOID CHILD HANDLING SHELLS ON THE BEACH*

Richard Snyder

She turns them over in her slow hands,
as did the sea sending them to her:
broken bits from the mazarine maze,
they are the calmest things on this sand.

The unbroken children splash and shout,
rough as surf, gay as their nesting towels.
But she plays soberly with the sea's small change
and hums back to it its slow vowels.

*When the poem was written, the designation
Down syndrome was not common terminology.

I first studied this poem in my 10th grade Honors English class over 20 years
ago. It made an impression even then, and I thought of it Sunday at my
nephew's birthday party. The cackling, healthy, developmentally on-track
children were all playing and running around. Kiera was quite self-entertained
exploring the house and the yard. She would occasionally take notice of the
other children, but generally kept to her own plan. As the children broke the
pinata and scurried for the candy and toys, Kiera was quite content handling
pebbles in the backyard landscaping. I had to smile to myself at the full circle
nature of my life. Who knew that the poem I learned in 10th grade would hold
such a personal application for me so far down the road? I am so glad that I
was paying attention.

Major Strides!

We upped Kiera's anti-seizure meds, so seizure activity seems stable. Kiera is feeling great and getting into everything. She is down to 1 to 1.5 liters of Oxygen during the day. She is signing a ton and trying to communicate. She seems hungry for knowledge. She requests that her diaper be changed, attempts teeth brushing a little, washes her hands, and actually tried eating about a dozen pea-sized bites of yogurt tonight. She is still VERY orally defensive, but I think she is very hungry. She probably needs her formula volume increased a little, but I am trying to take advantage of her clear desire for food and see if we have a window of opportunity here. She is learning all of the topics on her sign language videos and enjoys sitting on the potty (unfortunately AFTER the diaper is dirty for now). I think she is understanding our use of reason with her when it comes to these scary developmental steps. She is also playing better with other children. She is still very self entertained but occasionally allows other children into her world. Today we went to her cousins' birthday party. They had a HUGE jumper rented which Kiera went in for the first time. Another little girl said "hello" to her and Kiera said "hi." It comes out as an airy whisper when she says it, but it was clear to me. Things seem to be progressing exponentially. We are pretty excited to see what lies around the bend.

"Starting" to freak out a little...

Okay...I probably shouldn't blog this, but I can't get on facebook at work, and I need to have an on-line freak-out to get all my thoughts on "paper."

As I mentioned before, Kiera has had a two very long (30 minute) seizures that were clearly seizures, even to my "untrained" eye. She's been on anti-seizure meds since Decemeber, we've done the initial EEG, CAT scan, MRI, etc, and we are "patiently" waiting for a neurology seizure study that I think is scheduled for June. I was fine with waiting... until yesterday ...when I started to wonder about some of Kiera's other unusual activity and whether she has had other seizure activity that has been going unrealized.

Scenario: Last night she woke up from a nap. She had been sleeping on her arms in kind of a traditional napping pose. She was cranky at waking up. When I picked her up, her arms remained in the pose, folded hand over hand and elbow to the ear. She went back to "sleeping" and lying against my chest in this pose. When I would try to extricate her she was kind of like a magnet, wanting to lie against my chest and arms continuously in this position. She seemed aware at all times, but would cry if we tried to move her arms. She seemed cold and was shivering, although it's been cold in our house, and her eyes were very dilated, but it is also kind of dimly lit in the living room. There was some slight lip smcking, but not a lot, that I attributed to being thirsty or waking up. When I handed her off to daddy, the normal thing for her to do would have been to change sides for her arms, but although she was laying against him on her left side, her arms remained in the pose on her right side. Finally, I sat her up and was able to slowly massage her arm down or get it "unstuck." After this weird event, she fell back asleep and slept ALL night, having already been sleeping since before 6PM.

Now I am freaking out! Going back in my memory, I remember these frozen pose situations after naps at least 3 or 4 times. I started researching seizures on-line and found Tonic Seizures that seem to describe some of what was happening. Another person's description mentions her son raising his arms over his head and grimacing. ACK! Now I am going through all the times she raised her arms over her head upset about unison sound that would make her cry like she was in pain and re-evaluating the whole thing. What if the sound was triggering a seizure which would make her arms stiffen like that, and the crying was BECAUSE of the arm stiffening (not the sound sensitivity that we had assumed) and wanting to bring her arms down but not being able to? How many times has she done this raised arm thing? Oh...50... 100? I haven't counted. What if her developmental delays are being enhanced by seizure activity? What do we do now?

Big sigh. I have a call into the neurologist and am waiting to hear back from her so we can discuss this. Maybe they can move up her appointment. This is so weird. 4 1/2 years of medical drama, and NOW I'm freaking out. Does anyone out there in blogosphere have seizure experience that they might offer?

Kiera is so sick right now...

Keep Kiera in your prayers so we can stay out of the hospital. Both she and I have been unable to permanently shake this nasty respiratory stuff that we caught on Christmas Day. I realize I haven't posted much, but life has been pretty non-stop miserable. I finally feel better today than I have in over a month (even with the chronic coughing and nose blowing), so I hope there is light at the end of the tunnel for her. She started running fevers and vomiting Friday after we thought we were finally getting over the last cold. It seems like she's getting tag teamed by different viruses. I've got her on round the clock fever meds and had to bump her nebs back to every 3 hours in hopes of clearing her out so we don't have to admit her and risk her catching something else in the hospital.

Our extreme weather yesterday probably didn't help. It reminds me of that big storm back in 2007 the day of Kiera's tracheostomy surgery. I think there is 2 feet of snow in my back yard. Too bad Kiera isn't well enough to enjoy it. It will be nice one day when she is well enough to do something simple like sledding down our driveway. Here's to hoping for that day to come soon. In the meantime, I've got a sick kid to hold. Gotta go.