T minus 7 days to launch (Maybe)

Nothing is totally set in stone yet. We thought we were going to transport to Houston today or tomorrow, but now it looks like it might not happen till next Monday. I've been busy trying to pack what I absolutely need for four months and get the house in order so Jerry will feel cared for while he is here by himself. This delay will at least give me a little more time to get things organized. It's hard to think of everything I could possibly need to get done between now and February, especially with Thanksgiving, Zane's baptism, Christmas, and Zane, Mitch, and Jer's birthdays all happening in the next two months. It's all a matter of figuring out which transport company the insurance providers and the doctors can agree upon. The insurance understandably wants the cheapest and the doctors want the best capable for a pediatric ICU patient. The twain do not necessarily meet.

In the meantime, Kiera has actually been doing pretty well. Her new thing is sticking her finger in her nose and the noses of others. She does not discriminate. She likes all noses. She is also kicking and playing with her legs a little more. She likes to laugh these giant belly laughs, often at things that really don't seem that funny. Her whole body moves when she laughs. I wish we could hear it.

Keep praying that Kiera stays well enough to transport long enough for everyone to come to a consensus. All the doctors and nurses have been so sweet and have been stopping in to visit Kiera before we leave, some on their days off. Everyone loves Kiera and has grown quite attached to her, so it will be hard for all of us for her to leave. The Presbyterian NICU and PICU have been outstanding in their care of her and us. I don't think we would have her here with us today if we hadn't been with this group of wonderful dedicated professionals who have gove above and beyond in her care. We are extremely grateful for her pulmonologist, Dr. Glasser, and his dedication to Kiera's care. Like me, he's hardly missed a day of seeing her in 15 months even coming in on weekends and checking in while out of town. We hope we will get to come back to visit with Kiera healthy and breathing easily with her new lungs.

Love,
Therese

Happy Halloween!

Kiera had many costumes today due to explosive diapers. :) We had a blast! She enjoyed a contest of "How many clowns can we get in this room?" and asked herself "Are these clowns really my parents?" Then we moved on to Minnie Mouse so she could be "Minnie Me." Mitch had the day off from school and went trick or treating through the hospital with the Child Life group. Giggles the clown painted his face like a ghoul and did such a great job. He had a lot of fun. It was quite a day, and it ended with the boys trick or treating in the neighborhood while I answered the door and handed out candy. The best part was an encouraging call I had from Kali's mother, another infant lung transplantee who is only 1 month older than Kiera. She had so many encouraging things to share, and it was wonderful to feel a connection with someone who REALLY KNOWS what we are going through. I can't wait till next year to see where we are then!

Love,

Therese

The Next Step...

Dr. Glasser is back from Houston, and it looks like we are moving ahead with plans to try to transfer Kiera to Texas Children's Hospital. He says he has great respect for the doctors and the program there and thinks it will be a good fit for her. The lung transplant committee is currently reviewing Kiera's file to see if she is a good candidate for a transplant. It's still possible that we could go there and have tests run ( a cardiac catheter, a ventilation profusion scan, and a high resolution CT or bronchoscopy -I can't remember) that we can't have done here, and maybe a second set of eyes with better "pictures" could figure out what exactly we are dealing with in Kiera's lungs and find a non-transplant solution. Her CT Thursday seemed to determine that her right lung is hypertrophied and that the middle lobe may, in fact, be squeezing her trachea from 2 different sides. This may mean that her right lung has some dead space that isn't working and may be the source of her problems. We don't know if this is correctable. It may be the impetus for transplanting her. If we end up with transplant as our only option, I will be in Houston with Kiera for a minimum of 3-4 months depending on when a donor is found. Jer will come back and forth.

In the meantime, her peep has been lowered to 5 from 8, and she seems to be doing well with it. Last night she was giving us these giant belly laughs just because I was smiling and tilting my head at her. It was hysterical! I hope you all get to see it some day.

Therese

Insert Heavy Sigh of Relief Here__________

Jer and I are trying not to get too excited; however, we are allowing ourselves a deep sigh of relief from the dread her Thursday spell brought. It seems that lowering Kiera's peep on Thursday bought us some time. Thank the Lord, Kiera has not had any further spells and has actually looked fantastic Friday and Saturday...better than she has in a long while, in fact. We played and laughed and slept. Her endurance seemed much improved. I refilled her Elmo balloon from Emma and Michael (her NICU friends), and she was pleased as punch. These pictures are from Friday. Wow! By the way, she's about 19lbs 14 oz now and in her 12 months clothes.

Therese

Pray, Pray, Pray Hard

I can't update every detail right now. I hope it is a bad dream and that we'll wake up. Yesterday was bad, bad, bad. Kiera had a bad spell. You really won't want to know how bad. She scared everybody. She had a CT scan yesterday evening, and we're waiting for results. Dr. Glasser has gone to Houston and will give Kiera's case history to the doctor there in charge of lung transplants. Her x-rays have been showing some changes in her trach and lungs, and hopefully the CT will show what's going on. They think maybe her trachea is "folding on itself." I have no idea what can be done. She is very unstable and critical right now.

A good thing is that she had a good day with mommy and daddy after her spell and after dropping her peep on her vent, and she had a good night while extended over her boppy pillow. We played peek-a-boo and read stories and sang. Daddy made her laugh so much with peek-a-boo. She is currently fascinated with kleenex and blowing it in the air. :) She is living every minute. What an amazing girl!

Therese

Kiera's awake...yeah!

Kiera's paralytic was lifted Sunday. She got to be awake for Grandpa Wright before he went home but missed seeing Uncle Chris. She was in her medical coma the whole time Uncle Chris was here.

She is recovering fairly well from her coma. Her vent rate is back down to 45 with 60% oxygen. Her tributaline drip was stopped yesterday and since then she has had 3 morphine nebulizers because of respiratory episodes. This morning and this afternoon she had spells of bradychardia and had to be bagged a bit. This afternoon I was with Kiera during her spell and she was difficult to bring back up(i.e. heartrate stayed in low 70's for a few minutes). I started singing our lullaby and arched her neck over my arm and she focused on me and started coming back up.

The rest of the day was great. She played and laughed. She does get tuckered out (kind of winded) after about 5 minutes of playing and has to lay back and rest but then gets right back to playtime. She loves watching her paper butterfly mobile from Aunt Jessica and Uncle Dathan while she's resting.

Therese

Bad Day Update

Not a good day. Kiera had a pretty bad episode today. Yesterday she was pretty good, and we read Little Mermaid and played with her balloon and mobile. Today she took a complete turn with her left lung pretty collapsed. The nurse bagged her(manually gave breaths off the ventilator) for approximately 3 hours which actually helped inflate her lung better. She was extremely acidotic with her CO2 count off the charts of what the can read, higher than it has EVER been. She is now paralyzed and sedated (yet again) in an induced coma. Her doctors spent the whole day with her, and her primary intensivist even came in on her day off. We left tonight to go to dinner around 7 ish, and she had stabilized a little but is being left on 100% oxygen and a ventilator rate of 70 overnight, at least. Then tomorrow they will try to wean her oxygen levels and see how her SAT's react.

To say that the day has been bad is an understatement. I think I had a nervous breakdown today, or as close to one as I can imagine. I spent most of the day crying. I don't know what is next for Kiera. We may be getting closer to having to make a lung transplant decision or maybe this was just a bad episode. As it is, she's not even well enough to transport if we had to go to Houston for a transplant. It's just not fair.

Love,
Therese