Quick Update...

Quickie...Pretty good week for Kiera. We had a great visit last Saturday. The boys played in Kiera's room instead of going to the courtyard like usual, and Kiera was entranced watching them play with cars and a red race track. She is so inquisitive.

She has her 60 mm trach tube in. It's not perfect, but we're giving it time to evaluate its success. She has finished her course of antibiotics for serratia and seems much happier. She is still fragile and very touchy. She is also much better in the afternoon than the morning. (I wonder where she gets that from...hmmm) She is still on a ketamine (sedative) drip, and that may be helping her keep the spells under control. Slow but steady wins the race.

Love,
Therese

Kiera Boldly Goes Where No Baby Has Gone Before...(as far as we know)

Kiera seems to be having a better week. Although still on some IV sedatives, she is essentially awake and trying to regain her muscle control. She loves to pull her balloon down to her hands. She plays with her toys and smiles and laughs all the time. She thinks so many things are funny, particularly the phrase "junk in her trunk." (long story) She has the new 54mm trach tube in which is not quite right yet, and she will have a newer 60mm trach put in Thursday. This may or may not help...we'll see. Kiera is getting two IV antibiotics for her serratia and MRSA which seems to have made the difference with her this week. We have many good things to hold on to.

Kiera has definitely challenged the doctors to change the way they approach chronic patient care, and we have seen everyone bend over backward to try to help her. She now has a primary care intensivist to try to illiminate some of the inconsistencies in her care, and this model will be used with future chronic patients. Kiera is the first. We had a care conference today to assess where we are and where we are going. Kiera is a triple whammy: has terrible pulmonary hypertension (which is under control with her sildeniphyl and bosentin), terrible tracheal malacia (which has a 50% mortality rate by itself), and terrible chronic lung disease. Dr. Glasser says he's never seen all three in any of his patients. The overwhelming theme of the conference was the real possibility that there may be very little left we can do for Kiera and that she may be getting progressively worse rather than better.

She needs to grow new lung tissue, which will take a VERY LONG time. In the meantime, there is a question that MAYBE she has grown too big for the current lung tissue she has and that that may be why she seems progressively worse than she was back in June. Maybe her lung growth has not been proportionate to her body growth. We still have hope that her current course will buy her time for new lung tissue to grow. There was also mention of researching lung transplant options as a last resort.

Jerry and I were pretty thrown by the direction of the conference today. We were feeling pretty positive about how she was doing this week...before this meeting. We came up with a few more ideas during the conference, but not much. For now, we pray they are wrong about her getting worse, that the new trach may help her improve and provide a temporary solution for her tracheal malacia, that the antibiotics will control the infections without causing problems, and that we can grow her lungs so she can continue to be the bright spot in our day that she is. We hope she is happy and enjoys her life despite her struggles. We hope she is a model of success for all of her health care professionals and everyone else she has touched. She definitely inspires us every day.

Love,
Therese

Some pics of Kiera from before her latest sleeping spell. Just a bit to remember what she's like awake.

First two teeth.

Kiera loves balloons.

Getting better with baths.

Kiera moved herself sideways and is pleased.

I can hold my paci (with my giraffe's help)

I'm sitting up (sort of). I'm such a big girl.

I love my walker.

Sleeping it off...

Today was an eventful day for Kiera, but she is doing fine right now. She has been having trouble with her stomach prolapsing through her G-tube stoma. It has progressively gotten worse, and today the doctors decided it finally warranted doing something. Fun part is that the experts have never seen this before. Leave it to Kiera! She likes to make roads where there are none. They sedated and paralyzed Kiera and will leave her that way till Monday. The surgeon pushed the stomach tissue back in her tummy and adjusted the balloon to try to keep the g-tube close to her tummy. She will heal while she's sedated and paralyzed so she doesn't push it out again. We will have to see if that is enough to keep it in or if they will have to stitch it tighter. She may push it back out when she wakes up. We'll see. In the meantime, she sleeps.

It was a sad day in the PICU, however. Her fellow patient, who was born one week before her and had very similar problems to Kiera, passed away early this morning during a brady episode. He was a sweet baby. We are so sad for his family, and we are probably suffering some kind of survivor syndrome. It is impossible not to realize that it could have been Kiera. It could still BE Kiera. Things turn on a dime, and we have to enjoy every minute we have with Kiera so that if we come to the end, we have no regrets. Please pray for Kiera, that she starts improving and gets closer to coming home.

Love,
Therese

Had our meeting...

No earth shattering news that we didn't know already from Cincinnati. Kiera's having a rough day today. She is working hard to breath and had a fever of 104.4. We are ordering an even longer trach tube in an attempt to get Kiera's airway under control. We need to have her "less unstable" or more predictably unstable. She responds well to her current nebulizer treatments but starts to have problems about 2 hours after receiving them. They had been dropped back to every 4 hours, but are now being given every 3 hours again. We'll see if they decide to go to every 2 as I suggested.

For now...in case you mistakenly think you should ask...Kiera will be in the hospital for a LONG TIME. If this is not clear enough, envision the possibility of her 2nd birthday at Rachel's Courtyard. For sure, no one is coming home before she's at least on an LTV home vent. That's far off right now. Maybe she'll come home sooner, and we can be pleasantly surprised. We appreciate all the well wishes and inquiries as to her homecoming, but truly, please don't ask. I think I had a dream last night where I was still explaining to someone that, "No, she's not home yet." Believe me, when she's home, you'll know.

Thanks,
Therese

Update...no creative title

Kiera has been having up and down days lately. It's been rough. She has started a tributaline nebulizer instead of her albuturol (sp?), and it seems to be helping. She seems better today than she was this weekend (which was not good). She's smiling and playing. She likes to dance (or get wiggled and bounced all over by mommy and daddy while music is playing).

She tasted a grape popsicle today. It was so cute. She grabbed it with her hands and took no notice of the cold. Then she enjoyed licking her fingers. She didn't know what to think of the popsicle on her lips until mommy took a lick and showed her. Then Kiera opened her mouth wide and stuck her tongue out. She is so smart and observes everything.

We are waiting on Dr. Kanamori to report back from a conference this week at Cincinnati Children's Hospital with a bunch of ENT experts regarding Kiera's Tracheal Malacia (floppy airway), and bronchis suis. It's starting to feel (after 13 months) that she's never coming home. We have another care conference for her with all the doctors next Monday. Her G-J tube has prolapsed and looks nasty, but there isn't much we can do about it. It's the least of her problems anyway. Can you tell I'm drained?

Love,Therese

State Fair Time:Ride the Kiera Coaster!

Kiera did seemingly okay with the longer trach tube with periodic spells where the tube would become occluded by her tracheal malasia. Her spells increased, and we ended up bagging her to get her through one on Tuesday 9/11. So we decided to put her previous shorter trach back in, and she seemed to improve immediately. Now she has the shorter trach in and has periodic spells of increased work of breathing from the tracheal malasia; however, her trach does not become occluded. So far she gets through the spells in about 5 minutes with increased oxygen and no bagging. I am on tenderhooks waiting for the axe to fall and for her spells to get worse like they were before the longer trach fiasco. The Cincinnati conference regarding Kiera's airway should be happening tomorrow; although I don't know when we'll hear back.

We are definitely feeling stuck between a trach and a floppy airway.

When Kiera's well...she is a joy! She's all smiles and loves to play with her toys. She is working on 2 more teeth, having cut 6 already. She's working on sitting without support, but has a long way to go. She has lost some ground over the last few weeks with her developmental progress. I took her walker to the hospital with the wheels off, and she has a wonderful time in it.

Say your prayers. She needs them.

Love,
Therese