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
Wednesday, September 5, 2007
Monday, September 3, 2007
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 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
Thursday, August 30, 2007
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
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
Sunday, August 19, 2007
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
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
Monday, August 13, 2007
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
Saturday, August 11, 2007
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
Love,
Therese
Thursday, August 2, 2007
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
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
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