January 2012
47 posts
Day 143 - We Are Intubating Ayelet
Should be happening between 9:30AM and 11AM.
We’ll sedate her completely, put her on a vent to do alot of the breathing for her, and then if the air alone doesnt help - they will do a broncostomy which we are hoping will suction out the secretion plugs we think are blocking her lung.
We’ll know shortly if that is the cause of her breathing issues or not. Prayers!
PS. Hindy jumped on...
Day 143 - Awaiting Decision on Whether to Intubate
Ayelet’s Xray from this evening came back 1 lung looking clear and perfect, and 1 lung completely greyed out, closed. Meaning one of her lungs is pretty much failing – so the question is why:
Reason #1: Snot plug - she has built up a plug of secretions that are blocking her sick lung from getting anything in or out. The fix would be simple, sorta: do a bronchostomy (a suction tube down her...
Day 142 - Ground Control to Ayelet's Lungs
Ayelet’s breathing was just status quo yesterday morning, so we decided to move her to a more comprehensive ‘air mask’ - which is the same type of air-flow, just a scarier looking contraption that covers her face and makes certain she gets the support she needs. Deep Space Ayelet, see below. Too funny to see her little face in a big mask- cant make this up.It did help and her...
Day 140 - ICU Light
While most of the docs agreed this wasnt all that necessary, as a precaution since her heart rate was continuously up all day, they thought it might be good to try to put her back on the highflow nasal canula, to giver her just a tiny bit of support breathing, to see if it would, in turn, slow her speeding high heart rate.
Which it did.
As soon as we got her on it and back in the ICU room, her...
Day 139 - I Had a Dream, She's Out of the ICU
Good news: They moved us this morning back to the Bone Marrow Transplant floor from the ICU as Ayelet’s breathing/sleeping was decent all night long. Her liver numbers dropped also which is great news as we hope to see her tummy starts shrinking. Right now her tummy is really extended, like Seth post shabbos chulent.
The only thing concerning (well not the only thing), she still has a...
Day 138 - Some Menucha (rest)
Ayelet had a great friday night sleep in the Cincinnati Children’s Hospital ICU. If that’s possible.
Her first night of good sleep in a while.
They gave her an odd med to get her sleeping at night: and over-the-counter sleep/jetlag medicine that seemed to work really well last night and she basically slept through the night, while Bubbie Arna and Hindy chowed down to a hearty dish...
Day 137 - Liver on the mend
Because Hindy has been up for the past few nights, with Ayelet having trouble sleeping, with her enlarged liver, her breathing, and her new found love of travel shampoos etc, not to mention working all day saving the jewish communal world (hindy…and probably ayelet as well), Hindy tried a ‘sleep room’ in the ICU, an actual room right outside the ICU for parents w/ a bed to get...
Day 135 - Gforce
Ayelet loves our arms and even more our armpits to use as pillows. She loves snuggling up into them, its like her only safe space in this world. Bubbie Arna knows this, and Ayelet slept pretty well with her, with some grunting on and off here and there, but was most happy when Bubbie would climb into bed with her and put her arm under her head. Heaven.
All went relatively well, Bubbie survived,...
Day 131 - They Call Her Mellow Yellow
Ayelet had another 104 degree fever last night, so there is definitely something going on inside our little ball of fun - infection? bacterial vs viral? unclear, but we are hoping to find the culprit soon. Cultures pending. Cooling blanket is in effect.
It also seems that the antibiotic we gave Ayelet over the weekend, Bactrim, to fight the initial fever seems to be stressing her (wait for...
Day 130 - The Long Weekenders
With Hindy in NYC - Seth arrived on Thursday night and Isaac Friday morning, and the soda machines outside the BMT (not the yeshiva) ward transformed into a remote work center. Many Diet Mount Dews via soda machine w/ credit card were swiped.
Ayelet spent most the day sorta awake, sorta coughing phlem (snow-ball sized snot). After spiking a now common fever Thursday night and a 4am xray, her...
Day 127 - More and More Awake - Yikes!
Back on the BMT floor - new bunch of BMT kids/parents/nurses. It’s like Season 2 of BMT. Ayelet’s got a new room…and hopefully a new start.
But Ayelet has always been a bit of a diva. She will tell us, in her own way of communicating, when to get up, when to put away toys, when she wants her blanky etc. It’s usually her way or the highway.
The thing is, she doesn’t...
Day 126 - Book of Moron
With pride and joy, Ayelet was finally paraded out of the Intensive Care Unit, and back to the Bone Marrow Transplant ward. A real step forward. Back to the task at hand and away from the scare of a real respitory failure - hopefully for good.
When they did get her back they tried removing the catheter that was helping making it easier for Ayelet to pee - but unfortunately by end of day she...
Day 125 - Straws Are Back
Since Ayelet is still on some of her heavy sedation meds (with us weaning a little each day) she is sleepy most of the day, but seems to gain some energy upon seeing her 2nd love: wrapped straws. (stickers #1)
She peeled/unwrapped 3 straws today. Progress.
Margaret hung out with her most of the day as Seth packed up to go back to NYC (commuting during the week) for work.
We also hit the Kenwood...
