The medical transport plane that took us.
Kiera wants to bag herself. "I can do it!"
Kiera's got her toes.
Monday, November 19, 2007
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
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
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
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
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
Love,
Therese
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