Happy New Year 2008!

Good news for the new year! We are preparing to bring Kiera home to OUR HOUSE in a week, January 7th! What a concept! We are excited and nervous. I have been frantically cleaning and organizing. Home health care equipment should start arriving this Friday, and we have things to do every day to make this happen. She is already on her home ventilator and doing pretty well. She has a touch of an infection at present but will hopefully shake it off with some antibiotic nebulizers and still be able to come home as scheduled.

Be prepared, as we have been, that Kiera will probably get sick many times and be readmitted to the hospital frequently. But this is a first step. We hopefully will have 40 hours a week of nursing coverage, but most of the care will be done by me and Jer. Kiera will be very high maintenance for a while.

I will have to schedule visitors for Kiera very sparingly since it is still RSV season. We may have to become recluses until Easter which will be difficult for both Kiera and I since we are such social butterflies.

Thanks for your support this year. Cheers to a great 2008!

Love,
Therese

Merry Christmas 2007!

The Wright Children Last Year Christmas 2006
Kiera was approx 7 lbs, still intubated, and in NICU.
The Wright Children This Year Christmas 2007

Kiera is approx 20 lbs, trached, has overcome some life threatening days, been to Houston and back, and coming home soon 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

We took a wrong turn at Albuquerque!

Hi All! We're "home." Or at least back at Presbyterian, our home away from home. :) We got back yesterday morning. The flight left Houston at 7:30 am, and everything went relatively well. Kiera is on an LTV, home vent, and at the same settings she was on on the 840 vent in Houston with only a 2% Oxygen increase. Yeah! It was a busy day, and everything moved so quickly, I barely had time to pack and clean my room at Ronald McDonald House and get home, much less to update the blog. So....I apologize if I've been in town for a day, and you just found out now while reading this blog.

Everyone at Pres was so excited to see Kiera. Nurses who weren't even working stopped in to see her. She is so happy. She had been crying the last few days due to big molar teething, or something else bugging her. But she has been great since we got back. You can tell, she feels so at home and missed everybody. The PICU staff even prepared our old corner room for us! I hadn't realized till the ambulance was pulling up at Pres how stressful it had been to be in another state for 5 weeks. I was just taking each day at a time, and 5 weeks was over before I knew it. I hadn't been away from home for that long since I was an exchange student for 6 weeks in high school. I really love Albuquerque.

Now, I have about 4 days to Christmasify my house! Ack! I may settle for the lovely wreath on our door from Robin, the 32 in tree I got for Kiera's room. and our stockings I made at RMH. For those who know me, you know how HUGE a compromise this is. :) Well...maybe I can dig out my Nativity Scene and an Angel or 2.

Kiera might get to come home home as soon as the second week of January. We just need God to provide the right home health care nurse and no spells on the LTV for a few weeks to a month.


Love,
Therese

Happy Birthday Daddy!

Kiera has to wish her daddy a long distance birthday today. She wore her special party dress for the occasion. We miss him so much, but hope we will come home this Wednesday or Thursday. She has a bit of a stomach bug today and has been throwing up much of her food. Hopefully it will pass with some cuddling.

Love,

Therese and Kiera

Leaving Houston...Not Quite

God's Delay is not His Denial. Yes, we "SHOULD" be back at Pres by next week. We were supposed to go back today, but the "plan" changed. Kiera got a fever yesterday and her pic line got infected so she has started antibiotics. We were ready to go at 7:30 am and the trip got scrubbed. She's doing okay besides the bad blood work, but the crew didn't want to risk her getting sick in flight.Sooo... we are delayed till at least Tuesday next week. Jer and I were very dissappointed. He was so excited for "his girls" to be home.

It was a very rough day. It took us 9 sticks to get a working I.V. in her before removing the pic. Her veins have become extremely difficult to work with after 16 months of this. It was so hard to watch her cry and get stuck, and cry and get stuck, and cry and get stuck over and over. I started crying during the last one and could barely stand it any more. Unfortunately, she needs the antibiotics to fight the infection, but how do you tell her that. Hopefully, she will fight it over the weekend and be fit to fly next week sometime.

On a more fun note, I gave her a few licks of a cherry cane after her ordeal and she really enjoyed it. At occupational therapy time, she ate 15 cc's of vegetable chicken baby food stage 2 and LOVED IT. She is really doing well with the mechanics of it, although her tongue moves kind of like a giraffe when she eats. We rolled a bit on a mat on the floor, although the final push over her shoulder to her belly is still an obstacle.

Love, Tree

We'll be home for Christmas!

Kiera is doing great! Her vent is at a rate of 26 and holding, pressure support of 14, and O2 of 30%. We haven't tried to ween the rate and pressure support lower, as per my request and the agreement of the pulmonary team, because they tried 24 twice, and I felt she didn't like it. I figured we may have to go up on O2 once back in ABQ and didn't want them to go too crazy and then have to backtrack in ABQ. There's always time for weaning there after we're on the LTV. They are shooting for sending us back to Pres next Thursday the 13th! Mom and Dad cancelled their return flights and are just going to drive the car back for us. Kiera got a G-tube button (actually a Mic-Key to be technical) today and had a swallow study which went well with no aspiration. Now she can have therapeutic tastes of puree baby foods stage 2 and nectars. Tastes are really only about 10cc's or 2 teaspoons, but it's still fun to get her bibs dirty. She did not care for the her first taste of carrots, but fruits seem acceptable to her highness.

See y'all soon,
Therese

Quick Update...

Of course, Murphy's Law prevails, and right after I tell how fantastic Kiera is, she has a bump in the road. However, today she is back to her bubbly self. Thursday, her vent was being tempermental and the heat sensor wasn't working properly which lead to over heating the circuits and creating an unusually large amount of water condensation in the tubing. It followed that the water in the lines went down her trach tube into her airway and caused a little ruckus. Anyway, all is well now, but I think Friday and Saturday were recovery days for Kiera (AND MOM). I refrained from taking out a few staff members, and all is right with the world now. Merry Christmas! (my friend, Bern, knows what I mean) Where is a good pair of ruby slippers when you need them?

Swallow study on Friday didn't get completely done. Kiera was a little hestitant to let strangers put fluids in her mouth...I wonder why? I'll have to see if they will reschedule and let me administer the fluids. She did okay with purees though. There are "rumors" of changing her GJ to a G tube button tomorrow; however, this is all from weekend residents, physician's assistants, etc, so I'll wait till tomorrow to see what really happens.

Tree

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!

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

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

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

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

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

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

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

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

Okay, do over...

I'll be quick today. I'm tired.

We're trying the longer trach again. The doctors decided that the problem before was that the trach became misplaced. We don't know how, but it has been put back in and positioned correctly. Hopefully, it was a fluke and won't happen again.

The docs lifted her paralytic today. She gets very agitated as she regains her muscle control, and I calmed her down and rocked her to sleep tonight. So far, so good. I can't say what this means or how long till...whatever.

Today she's doing a little better. Now, we wait. Tomorrow is another day.

Love,
Therese

Kiera's Laborious Labor Day Weekend

Kiera had another low day, but it's hopefully looking up for tomorrow. She had a longer trach put in during a bronchoscopy Friday afternoon in order to bypass her bronchus suis. She was doing pretty well, although we didn't see many immediate positive effects like we'd hoped. Then early Sunday morning (4am ish) she had a major set back in which she was "un-baggable" and hard to ventilate. She had to be paralyzed and sedated (yet again). Once the muscle relaxants took effect she was able to be ventilated, and they brought her O2 Sats and heart rate back up to acceptable levels. Then today, while still under heavy sedation, Kiera had another bronchoscopy, and it was determined that she would be better off going back to the previous shorter trach tube. After they changed the tube, her PEAK pressures in her lungs came back down to a better level in the 20's and 30's rather than the too high levels of 50's and 60's they had reached.

Kiera is currently still paralyzed and sedated. Maybe tomorrow the doctors will lift the sedatives and see how she does. Jer and I have spent the weekend pretty numb and scared. Kiera was pretty unstable yesterday after having been completely charming and playful on Saturday, but it appears it may have been entirely attributed to the longer trach tube. On a bizarre plus side, it DOES seem that 2 days of the longer trach DID reduce the size and irritation of her bronchus suis. It just doesn't seem to have solved anything. So.... we're back to trying to ween and wait.

Love,
Therese

Kiera's got a new room, a new trach, and another tooth...

Kiera has had an up and down week this week. She spent Sun, Mon, and Tues pretty sick and has been better Wed and Thurs. She is scheduled to have her longer trach put in during a brochoscopy tomorrow(Friday) in her room. It will bypass her false airway and hopefully better direct her ventilation and treatments to her lungs. We hope it will make a difference for her. Then this weekend the pulmonologist will try her on the home vent again. We also had her moved to the big corner room with the windows today. (Opportunity Knocked) Now she can see outside, and it's much brighter. I hope she likes it.

Her fourth tooth is in, the bottom left incisor. She has two more ready to come in, the upper left canine and the lower right incisor. Then it seems she might have a teething break for a little while.

She has been rolling a bit more, finally, and trying to sit up by pulling herself up with her tummy muscles. It looks kind of like tummy crunches. She likes sitting, but so far has had to be placed in a sitting position and propped or supported a little. She is becoming more independent about doing what "she wants" when she wants. She is also growing a few tufts of longer blonde hair (mostly in back).

Love,
Therese

Two more teeth...

Kiera has two more teeth, on top, as of the 15th. Her two bottom incisors are threatening but taking their own sweet time. Kiera has come to appreciate Orajel. She opens wide for it.

Most of this week has not been incredibly news worthy. Kiera had a bronchoscopy with the ENT surgeon and they have ordered a longer trach for her. They have made CD's of all her bronchosopy tapes (I think she's had 4) and are mailing them to Cincinnati (sp? haven't had my coffee) Children's Hospital which is a center of excellence for airway issues. Dr. Kanamori (the ENT surgeon) will be attending a conference there Sept. 14th and will be getting their input regarding surgical options for Kiera. In the meantime we will try to bypass her bronchus suis with the longer trach and see how that helps. She is also scheduled for a more in depth brochoscopy under anesthesia in the O.R. this coming Friday afternoon, although they hope to bump it to Wednesday morning.

So, we've had some progress. We tried to put her back on the home vent last Monday, but she didn't tolerate it and was taken off after 15 minutes. We'll try again later. I would guess it might be after we get the longer trach. In case you're wondering, Kiera's homecoming is currently "on hold." Let's shoot for October.

Love,
Therese

Kiera's Birthday

Kiera couldn't choose between her morning dress and party dress. I think she's beautiful in both...don't you? What a pretty little one year old.

Love, Therese

A Tooth for your Birthday, Kiera!

Well, tomorrow Kiera will be one year old! Today was day 365 of hospitalization and probably around my 356th visit! She cut her first tooth on Thursday and is doing relatively well with a few bumps in the road here and there. We hope she will be well and happy tomorrow for her Big Party. She is not the average one year old in many ways, but she has certainly overcome a lot in her short life and is above average in our estimation. We are hoping for a bronchoscopy next week and measuring for a longer trach tube, and maybe that will set us on the track home.

Love,
Therese

Wakey, Wakey...

Here we go again. Kiera's day Monday was pretty scary for us and for the doctors, and we should just leave it at that. She has started the upward journey again. The doctors woke Kiera yesterday from her paralytics and have started weaning her sedatives. Her serratia infection seems to be calming down on her antibiotics.

Her pulmonologist has a theory regarding Kiera's false airway, previously referred to as a "pocket," which is technically called a bronchus suis. It is a very rare congenital problem of her airway that often goes undetected and doesn't cause problems. However, in her case, he thinks it may be harbouring her chiracia bacteria and contributing to her recurring infections. Also, it may be a cause for her ventilation issues by detouring her treatments and requiring more pressure to ventilate her. She will be undergoing another bronchoscopy to inspect the bronchus on Friday and measure for a custom trach tube that would bypass the bronchus suis and de facto quarantine anything hanging out in there. The drawback to such a move is that we will have to go to the hospital once a week for her trach change under a bronchoscope rather than being able to change it ourselves at home. The bright side is that this may temporarily solve her breathing challenges and help us get her home. Surgery to close it is not feasible for her at this time, but may be required in the future.

As is her norm (when awake), she's all smiles this week and happy to play and dance.

Love,
Tree

Sleeping Beauty Reprise

Hey, all. We woke to yet another dreaded phone call from the PICU this morning. Kiera was having increased work of breathing last night which had progressed since Friday, incidentally a day after ending her antibiotics for chiracia. She was doing so poorly that the intensivist had to re-sedate her and paralyze her like she had been last week. I feel bad for Jer since Sunday is his day off from work to hold her, and he had been looking forward to dancing with her today. Anyway, cultures have been run; however, they suspect it is her lung infection out of control, and they started two broad spectrum antibiotics and her steroids again. She has the worst secretions from her lungs that I have seen so far, very thick, and is having a hard time keeping her O2 SAT's up to acceptable levels without frequent suctioning. They have also increased the frequency of her nebulizer treatments.

Sorry about all the technical details. These are the kinds of things I talk about every day, but probably seem a bit overwhelming to observers. It helps me to know what's being done on days like this when things seem helpless. One good thing at the moment is that this time the docs left her full feeds running to see how she handles it under sedation instead of putting her on IV fluids so that they can keep giving her nutrition. Hopefully she won't lose wieght like she did last week while paralyzed.Keep on praying!

Love,
Tree

Anyone like roller coasters?

Okay, I haven't updated lately. I wanted to wait till the roller coaster ride tamed down a bit before I worried anyone needlessly. Kiera remained sedated for a week. We successfully woke her from her paralytic and sedatives on Thursday 7/19 after having tried Sunday and Monday to no avail. We had a scare on Tuesday the 17th thinking we may need a risky surgery out of state that turned out to be a false alarm. Soooo... we are back to the diagnosis from my last entry that Kiera is very sick and will sometimes have bad days.

We held a care conference for her on Thursday. She has started getting antibiotics for a chiracia(sp?) infection in her lungs, a short term steroid treatment, and Raglan for suspected reflux that might be causing her to aspirate and cause her spells. So far she is recovering well. She is still weak from the week of paralytics and has lost weight and coordination. She is smiling though and hasn't had any spells. Kiera likes to dance with me while I sing to her. We danced today to "Under the Sea" from Little Mermaid and probably jiggled Kiera more than one should jiggle a sick baby. :) She had a ball! (with no projectile vomiting)

So arises the big question: when is Kiera coming home?

Her homecoming is on HOLD. We know she will be celebrating her first birthday on Sunday August 12th in the hospital. We are glad to be able to celebrate her birthday at all, and will have just as good a time in the hospital as we would at home. We will try to keep her party "small" for family, a few friends, and, of course, the NICU and PICU staff. If you would like to join us, call me, and I will give you the details. I am unsure of the time at the moment. It will probably be in the afternoon, say 3 or 4PM ish. There will be plenty of cupcakes ! (and mylar balloons...Kiera loves them!) If Kiera is on the home vent that day, we may be able to take her and the party out to Rachel's courtyard. We'll have to play it by ear, as we do every day.

She will come home when she's ready, and she will probably go back. Such is life.

Love,
Therese

Good Days, Bad Days Reprise

Today we had a tough reminder that Kiera is still a very sick little girl. She had been having increased spells of bradychardia and desaturation this last week, and it all culminated in a pretty severe day today. She had to be put back on the hospital vent and heavily sedated for the next few days on fentanyl, ativan, and a paralytic. Needless to say, her field trip home was postponed. We do not yet know what this says for our hopeful discharge date of Aug. 7, and the doctors really have no explanation for these spells. Basically, she is CHRONICALLY SICK which means that while she has good days and may seem very well for a while, we need to remember that her good days are as common as her bad days. Sometimes she gets very sick, for no other reason than that she has very bad lungs. The only thing that will cure this is TIME and GROWTH. TIME means YEARS, not weeks or months. We're trying to stay positive and hopeful that she will still be home soon. She turned 11 months old yesterday.

Field Trip Friday...to our house!

Here's something new: Kiera, along with her nurse and respiratory tech, will be going on a field trip to our house this Friday! It's really a dry run under supervision so we can see what taking her to the doctor appointments will entail. We have to pack her up in the car with all her accoutrements (vent, feeding pump, O2 tanks, emergency meds, bag, probably an extra trach and trach care supplies, etc...oh yeah, and the baby) and then drive to our house and back. We may or may not get to take her IN the house depending on the attitude of her RT and how well she is doing through the whole ordeal. They're mostly just teasing us. Of course, we know something they don't know: Our house is at an elevated position and can be easily defended from SWAT teams and the like should we decide to take her inside and lock the doors. :) I have the boiling tar waiting.

Kiera is also improving her developmental skills this week. She has been touching her calves...maybe a precursor to discovering her feet. She is sitting better in her Bumbo chair. Dr. Crow started feeding her just 2 hours of her continuous feeds through her G-tube (stomach) instead of her J-tube (small intestine). So far no problems.

She has had a few challenges this week including an infected Central Line in her leg which had to be taken out Saturday, 6 attempts of sticking before getting a good vein for a peripheral IV for her antibiotics, and her regular episodes of bradychardia while pooping or passing gas. These episodes are manageable when caught early if I bump her oxygen intake. Otherwise she sometimes gets bagged to help her regain control. She generally does this at least twice a day.

Let's see how the next few days go.

Love,
Therese

All Smiles!

Kiera has gotten over her pneumonia and stomach flu and is on the LTV (home vent) yet again. She is doing great so far! She's been on it since Friday! We took her outside again today and took her to visit the fish tank. Plus, she just loves laughing with us and playing peek-a-boo! Check out the video we took of her laughing with the link at the top right. We can't wait till we can HEAR her after her trach is out in a few years. We had hoped that this would be the month she would come home, but it looks like we will have to settle for August 7th, just in time to celebrate her first birthday at home. We're getting close!