Wednesday, November 28, 2007

Merry Christmas 2007!

Wright Children Last Year Christmas 2006
Kiera was approx 7 lbs and still intubated in PICU.


Wright Children This Year Christmas 2007
Kiera is approx 20 lbs, trached, and close to going home on a ventilator.







See how far Kiera has come! Thank you to many dedicated health workers and family members, who especially worked hard even on holidays and weekends. Have a very Merry Christmas!

Love,
The Wright Family

A True Christmas Miracle

I am so glad that Jerry and I didn't let fear or nay-sayers keep us from coming to Houston to investigate the lung transplant option for Kiera. There are some who might have given up after transplant seemed the last option. We just took one step after the other to fight along side Kiera. Now it seems that getting out of our comfort zone so another group of eyes could start fresh with Kiera has resulted in finally facillitating a miracle for her!


Today, Kiera's ENT doctor said that the bronchoscopy of her trachea below her tube showed a "NORMAL" healthy trachea! I said, "NORMAL, normal?" and he repeated it for me. All the dilation and scarring of her trachea is gone after just two weeks with the Shiley trach tube. Her vent settings are great, rate of 26, pressure support 14, and O2 requirements 35%! She's eating well, and I looked at her belly this afternoon and it looked flat and normal instead of distended as it had been for quite some time. She's got abs of steel now and a belly button! She's 20lbs 7oz. She's even been antibiotic free since the 12th! Her doctors said they wouldn't have dreamed of telling me to hope for the kind of turn around Kiera has had. There was really no reason to think that the shorter Shiley trach would have been the answer for Kiera, but it seems to have done the trick.


They will be weaning one of her pulmonary hypertension meds, bosentin (the expensive one), and adjusting her feeds to 5 a day instead of the current 8. Her swallow study is scheduled for Friday. The most EXCITING part is that they think we will be able to transfer back to ABQ on December 18th!!!!!! Then we will work on being discharged from there. She'll still come home on a ventilator and need lots of care, especially with her trach till she weans from the vent. Then we will have to explore airway surgery for her before we remove the trach, although I understand that the surgery is not too complicated and is usually a one time thing.


Jer and I are still in awe. We don't even know how to take this information since it seems unbelievable!


What a Christmas Miracle!


Thank God!

Another Miracle: I got Kiera to wear a hat for about 20-30 minutes before she pulled it off! WOW!

Monday, November 19, 2007

More Baby Steps...

Kiera had a pretty big day today. She tried her first taste of baby food! A taste means she only had a total of maybe 2 teaspoons, but she did well with it and didn't seem to aspirate any. She had peaches and smelled like dried peaches the rest of the afternoon after getting it all over her hands and face. She finally got to use one of her plethora of bibs! Of course, it was an experience since she has gotten to the stage of wanting to feed herself and grab the spoon without ever having been at the stage where she lets someone else feed her first. Kiera will have a swallow study ordered soon as well. On the food front, she also had a whole day of G-tube bolis feeds, 100 cc's every 3 hours. In layman's terms: she got fed in her stomach instead of her small intestine in large doses every 3 hours instead of small doses continuously.

Kiera also "almost rolled" from her back to her belly. She definitely got as far as rolling from her back to her side, and what was significant was that she pulled her knees up to her belly to do that. She did this on a blanket on the floor while I played with her, and I think this was the first time she's done that movement with her legs.

Yesterday she was banging her stars from her stacker together to make noise. We read all her books this afternoon. She is absolutely fascinated with the hospital TV remote on a cord. The speakers for the TV are on the remote so she doesn't realize that she should look at the TV while videos are playing. Instead she looks at the remote and wants to play with it. The fun part will be when she finds the "call nurse" button. She's already been turning the TV on and off.

Kiera has a bronchoscopy scheduled tomorrow around 2ish to see how well her airway has healed since the trach tube change almost 2 weeks ago. We will know more about her status after the bronch. I've been trying to upload videos of her, but am having trouble here at the hospital. Maybe there's some kind of blocker on the server. The RMH internet is supposedly fixed, so I'll try there. I have a great one of her giggling with daddy.

By for now!
Love,
Therese

Happy Thanksgiving!








A little late on the post, but I wanted to do this with pictures. I hope you all had a very THANKS FILLED Thanksgiving. We are very thankful this year for such a great month with Kiera. She has been improving day by day, and Daddy and I had such fun with her these last few weeks and no scary spells. We are thankful that she is starting to be able to sit by herself. We are thankful that she found her feet and that she laughs hysterically every day at 5PM for no apparent reason. I am thankful that my husband was able to be here for 10 days with my brother's help. I am thankful for my family and friends and their encouraging phone calls while he is back home working. I am thankful for meals that have been prepared for me so I don't have to cook at the end of a long day at the hospital. I am thankful for the internet in helping me stay connected with everyone. I am thankful for the COUNTLESS medical professionals who have worked night and day to help Kiera heal and have a happy life and eventually come home. I am thankful for blood and organ donors and pharmaceutical companies and researchers and cab drivers and insurance companies and every person who has ever paid an insurance premium and not needed care so that our insurance would be able to cover Kiera's care.

I think, more than any other time in my life, I have become very aware of how much there is to thank God for. We had a wonderful Thanksgiving Dinner at Ronald McDonald House in Houston provided by some very generous volunteers and surrounded by so many people who truly understand the value of our children. The majority of guests at the house have children undergoing cancer treatments or babies in the NICU and PICU undergoing struggles to survive. In the past 15 1/2 months, I have truly come to appreciate the biggest lesson I remember from Catholic school, that to truly live as Jesus did, we must pick up our cross and carry it without complaint. We all have crosses to bear. Some of us may have already been introduced to that cross at a young age, and some may still be waiting to discover theirs. Some of us have our cross and haven't embraced it. Some of us might be blessed with a life with very little suffering, but maybe their cross is that of Simon whose job was to help Jesus carry his cross. I know this is all more Easter themed than Christmas, but I think to celebrate Jesus's coming, we need to remember that he came into this world with a cross to bear. We all need to identify our mission in this world and not just say we are thankful, but prove it.

Oh...and I'm also thankful for digital cameras and cell phones!
Love,
Therese

Pics from Houston


The medical transport plane that took us.


Kiera wants to bag herself. "I can do it!"



Kiera's got her toes.





Belated postings from Halloween

video

Sunday, November 18, 2007

Kiera is ALL OVER her crib...

Just a quickie. I'm in the waiting room because Kiera can only have two visitors at a time, and I am sharing her with daddy and her uncle Matt before Matt goes home. She is in her walker (sans wheels) right now and playing very aggressively with her star stacker. She is just all over the place wanting to get into things. She really prefers to be sitting up and has been pretty close to sitting up on her own in her crib, especially if she starts from a lounging position on her boppy pillow. She's been playing with her feet and starting the music on her elephant music box by pulling its tail. She likes to grab her ventilator tubing and the side of her crib. Someone colored a picture of a flower for her and taped it to her crib rails, and she plays with that. She has also discovered an appreciation for her TV that swings out on an arm by her bed. Unfortunately it doesn't have a dvd player attached so I will have to play her movies for her while I'm here with my player. We watched Monsters, Inc. last night. I forgot how much that movie makes me cry. It's sweet. Kiera's CT of her airway is rescheduled for Monday. Her vent rate is still 26 after a brief moment at 24(she didn't like it that much), and her pressure support is down to 16! She seems to have grown more hair, but it might just be BIG Texas hair from the humidity. :) The back is very curly here. She is so cute, and everyone loves her!

Happy Thanksgiving this week! I know we have much for which to be thankful. I'll work on uploading pictures or videos soon this week.

Love,
Therese

Saturday, November 17, 2007

Kiera's got a whole new trach tube!

Okay, sorry it has been a few days since update. I haven't been able to log on from my room like I could Tuesday. Jer and Matt got in Thursday night, and it has been so nice to have them here.
We went out for probably the best ever Indian food last night at the Bombay Brasserie in the university district to celebrate because Kiera is doing SOOO well.

You won't believe the changes for Kiera so far. Thursday she had a bronchoscopy around 6:00PM and the ENT doctor chose to put in a Shiley air cuffed trach tube, in a regular 41 mm length (I think). I feel bad because after getting the transport company to agree to replace her trach tubes, I guess she won't need those ones after all. The Shiley is made of a firmer plastic and had been discussed in ABQ but I thought it was not available in a pediatric size for Kiera. Anyway, she has been lots better since then. They had been weaning pretty agressively previously anyway so I'm not sure if the progress is from the different type of trach, the lower altitude, the weans on her meds, or that she was improving at home already and would have tolerated the weans there. Whatever the cause, today her ventilator rate is down to 26 from 46, her O2 is at 45%, her pressure support is down to 18 from 28, and her peaks are great! She is OFF her ketamine, and weaning on her methadone, valium, and prednisone. They may even start weaning one of her pulmonary hypertension drugs. FINALLY, they said today that they are considering moving her to the step down PCU unit from PICU on Monday!

Let's not count our chickens. We still know Kiera likes to mess with us. However, Dr. Mallory has said that currently he is putting lung transplant on the back burner. We will see where this course takes us. We still have a long road. During the bronchoscopy they found some subglottic stenosis in her airway above the trach tube, some scarring and narrowing around her vocal chords, probably from long term intubation. She will need her trach tube for 2-3 years until that can be repaired surgically. It will probably delay her talking, and I'm not sure how her voice will sound. In the meantime, I have some great material with me from my friend Kate in ABQ on baby sign language and will get more serious about implementing it with Kiera.

All the nurses and doctors here are very impressed with Kiera's social skills and interactive nature. They think she is doing remarkably for a baby who has spent her whole life in the hospital. She is having a ball. Yesterday she hung out with Daddy and I in her walker for a long time. Sometimes she just leaned back and watched us talk. Today she grabbed and looked at her foot! Here's a tip for the PT's and OT's reading....she has a hospital band or tag on her ankle that she got on admission and has been playing with it all week. I thought if anyone ever wanted their baby to find their feet, tying ribbons on ankles or ankle bracelets would do the trick. It has interested her more than any pair of booties ever has. She also grabbed my hand Thursday and pushed up to sitting with her other hand from her boppy. She has been wobbly sitting more lately too with her boppy's help.

Your prayers are working! Keep it up!

Love,
Therese

Wednesday, November 14, 2007

SNAFU

Well, I was wrong about the transport going as well as I thought. The transport team lost Kiera's bag of CUSTOM trach tubes and supplies! I am trying to not lose my lid. So....I thought I'd vent on her blog before I "discuss" this with them tomorrow. The worst part about it is that I personally had her stuff in my bag, and they made me give it to them before we left ABQ. Had they left it with me, we wouldn't be up trach creek without a obturator right now. ?!$%&!!!

Therese

Tuesday, November 13, 2007

A Change of Scenery

What a busy week so far! Kiera and I flew via very small medical jet to Houston to Texas Children's Hospital. The transport team was great and Kiera did very well. She slept for most of it, but woke up in the middle of the flight, looked for and found me, and gave me a big smile. We played a little bit. Then she got agitated probably from her malacia obstructing her trach a bit, and the team sedated her and kept her pretty sedated for the rest of the trip. It was funny to see their reactions after she "shook off" (as my dad would say) dose after dose of fentanyl and versed and had her propofol doses only last about 10 minutes. Kiera said, "Are you kidding? I eat that stuff for breakfast."

I have checked into my room at the Ronald McDonald House and can receive mail for Kiera Wright (even my mail should be addressed to her) at 1907 Holcombe Blvd., Houston, TX, 77030. Of course, you can reach me on my cell, but I won't be able to answer when I am in the PICU. I have gotten to know a few parents through Ronald McDonald House which is helpful for support and feeling not so alone. It's such a great and needed charity. So much is provided for me that really helps. I never knew what a big difference they make in people's lives.

It's a tough transition getting used to all the new people, but everyone is very nice. It's such a BIG hospital, and since it's a teaching hospital there are tons of doctors. I think there may have been at least 7 or 8 involved in her rounds this morning alone, plus 2 or 3 others who stopped in later. It makes me miss Pres a little. It was much more intimate. Of course, it may just take some getting used to. It is good to have some many people working to find a solution for Kiera. There are 31 beds in PICU organized in pods. Kiera's room is small, maybe a third the size that she had in her corner "princess suite" at Pres. She won't have room for her amazing wardrobe and toy collection, so I will need to rotate her stuff as it gets dirty or "tiresome to her." :) I'm glad I brought the essential toys I did. She likes the consistency. I also bought her an awesome lady bug balloon today. She loves it and was laughing at it right away when she woke up and saw it. She has adjusted remarkably well to the new environment and faces. It's been a lot for her. Plus, the doctors have been weaning her vent settings and drugs pretty aggressively and running lots of diagnostics, and it seems tiring to her.

I'm probably having a harder time with the change than she is. I should have bumped her O2 today while she was having a little trouble and normally would have at home (Pres) but somehow didn't react the same with new people and new orientations for the equipment. One time yesterday it would have been appropriate to bag her, and I would have at home but didn't know how the nurses might react to that. I feel a little out of place, but I'm getting more comfortable. I missed meeting the PT and OT people today. I had come back to the house for a nap, and Kiera was sleeping so they didn't mess with her. I hope they are as good with her as they were at Pres.

Side note on being out of place: I was so excited that the coffee shop here has Kolaches from Shipley Donuts since our ABQ one closed. I was choosing mine and saw one with something green in it and asked if it was green chile without thinking twice. I got a weird look and a huh? It was jalapeno. When they did them in ABQ they used to use green chile.

Okidoki, I think that's all for now. I should go to sleep so I'm ready for tomorrow. I am at the hospital a lot more so I can meet everyone, ask and answer questions, and keep Kiera comfortable, micro-manage her care, etc. I have pictures from the plane on my archaic 35 mm film camera so you'll have to wait till I finish the roll. However, Jer got some of the plane that I will try to upload Friday. Thank you for the prayers and well wishes and all the calls, especially the call from Terri at Pres yesterday to see that we made it okay and the call from Dr. Crow that I missed today. Kiera and I miss everybody.

Love,
Therese

Wednesday, November 7, 2007

We go to Houston Monday!

It looks like we have approval from the insurance for the evaluation in Houston and the TCH team will be transporting Kiera. Kiera and I should be leaving Monday. Jer will follow behind with Matt and my car. Kiera is doing so well right now, although she is still on antibiotics. We didn't want to change anything before moving her. She's been grabbing her feet a little and sitting more stable. I have a cold, but am getting better. Everything seems to be coming together. We are excited by our conference call with the team in Houston. It will be nice to have another set of eyes and opinions and some in depth studies of Kiera's trachea and lungs. Hopefully we will find some good answers for her.

Love,
Therese

Tuesday, November 6, 2007

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

Thursday, November 1, 2007

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