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
Tuesday, October 30, 2007
Sunday, October 28, 2007
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
Therese
Friday, October 26, 2007
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
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
Wednesday, October 24, 2007
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
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
Thursday, October 18, 2007
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
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
Wednesday, October 17, 2007
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
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
Tuesday, October 9, 2007
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
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
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