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Chloe Tanna Joyce
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chloe is going home
posted on 07/28/2007
Yesterday they took chloe off her nasal cannula and she's stayed between 95-100% all through the night! More leg movement, good pain control, good sounding lungs means we are being discharged tomorrow morning! We are all so ready!
She has some morphine withdrawal (sweaty, periodic grouchiness, high heart rate adn resp rate) but we can use Ativan (similar, less potent narcotic) to wean her more easily at home.
Going home on Tylenol with Codeine and a nice straight back...
She keeps telling everyone: "my bumps all gone... my tape and gauze is off... I'm much better... I'm eating, I'm ready to go home." Some pauses in between those phrases but those are her words exactly.
She can lay down and sit up with supports at home while she recovers and does more PT. Her muscles are a little weak but she'll be back to sitting up on her own in a couple of weeks and then to crawling practice as she has a lot more tone in her legs even today.
We're so excited. We're taking the 6 hr drive home a little slower: more like 10 hrs but we'll be happy to get there Thank you all, so much! The prayers worked; we anticipate the day when we can see our little, straighter and 2 inch taller peanut, crawling, again... and maybe walking, too! :)
Comments (2)
a good weekend
posted on 07/23/2007
What a spectacular weekend! I really can't stop smiling this morning.
Chloe lost one yucky thing after another since Friday: BIPAP was kicked out of her room on Saturday morning and then the cough assist left on Sunday. Today, she doesn't need as much suction. She still has some lung collapse (the little alveoli are not as filled with air as they should) but we are working on it.
This weekend also brought encouragement from a neurologic standpoint. she started pulling her legs back in response to sensation and this morning, she straighted out her legs in response to her being stood (while I supported her) on the bed! Lots more good news to follow, I am sure! You all must be working overtime praying but it sure is helping!
Today, she is having a princess party. The nurses brought princess stickers, princess movies, and a crown. Chloe is loving every second and asked to be called Cinderella. I've been smiling all weekend, I am sure!
Comments (4)
07/20/2007
It certainly is a roller coaster. Things went really well a while after extubation and she settled out... then we had 2 really good days. Chloe was up in her stroller coloring and we thought we were on our way home... Tuesday and Wednesday 3:00 am, she started to desat (her o2 dropped very low and her heart rate and respiration went very high) she was struggling and a chest xray showed one lung collapse on Tuesday early am. Her C02 levels in her blood were also high. We did some therapies and things seemed to get better throughout the day on Tuesday. 3:00 am, Wednesday, the same thing only both lungs showed collapse. Chloe was nearly reintubated and put back on her ventilator. However, the PICU staff started rounds of really rigorous chest pt, nebulizers, suction, and this cough making machine called the coughinator, and with each xray her lungs were getting better. She was also put on CPAP and BIPAP (a machine like a ventilator but doesn't go down her windpipe; it pushes forces of air in her lungs and then also makes her exhale deeper) since Tuesday and that seems to really be helping. Yesterday, my parents came for a visit and she really lightened up and started to play. Chloe loves the princess fishing pole my dad found for her. She played with it again in the evening. So, Thursday night and this morning: things have been great (knock on wood). She was laughing out loud last night playing with her fishing pole and baby doll (giving it medicine and such). She also winced in response to pinches on her feet and legs... AWESOME sign! She feels pain and touch!!!! So, so happy! Anyway, rollercoaster ride for sure and we are told to expect more undulations: good days followed by not so good. They expect she'll be moved to the floor some time mid next week. So, that's also good news. For now, we are relieved that she is breathing, laughing a bit, and her pain is controlled and thrilled that she can feel her legs and her brain and spinal cord are communicating! Keep up the prayers: they are definitely working!
Comments (1)
07/18/2007
Yesterday was a great day! Chloe sat up a lot and even did a bit of coloring and then, with a deep, rhaspy, post-extubation voice, said, "More Wonder Pets Please, Mommy." What a sweetie. So, she was busy and we enjoyed yesterday a lot! Today: Chloe is still doing well... much quieter today than yesterday. Because she is uncomfortable she isn't taking the kind of breaths she needs to so her lungs are not taking in enough air making them look a little cloudy but not pneumonia so she has a little mask on that pushes air in gently to make her take deeper breaths. So, today she is resting a lot because of that and she was so busy the last couple of days... they said all is still normal and relative to her surgery adn she is doing great. She's getting higher calories by her pic line adn maybe starting some food tomorrow by gtube. She's still getting good pain control but that labored breathing is not fun, Great tooshie and urine output, those are good neurological signs adn she kicked and shook her head no when she was getting a catheter so that's a very good sign, too. baby steps and they said to expect good days and then days that she's not feeling as good; it's all part of the healing process.
Comments (2)
07/17/2007
Chloe is a different little girl today... yesterday, they extubated her (took out the breathing tube). She was very scared and so were her parents. She had a pretty tough time breathing and needed some fast acting intervention from the PICU staff but she recovered well afterwards and was alert and comfortable about 2 hours later. She has some wheezing that's pretty standard for the surgery she had and ventilation... she's workin on that, too. Yesterday, I got to hold her for a while in the chair and today she got to sit in her stroller for a bit. even picked up a marker to color and tried putting a sticker in her album. She's pretty heavily medicated right now so isn't too focused but awake a lot. She's handling pain well, too. The biggest news: she pooped this morning (on her own) and is peeing without a catheter: both signs of good neuro status. She's also much more responsive to tickles on her feet (docs say this might only be reflexive) but is also been known to move her toes by request twice.. not a reflex! Doctors are saying there is still a "significant" chance that Chloe will get back everything she's lost. We're expecting nothing less from our little miracle who continues to defy medical expectations. Thank you all for your prayers and words of support. Each day keeps getting better because of them.
Comments (0)
Today
posted on 07/14/2007
They are thinking of taking Chloe off the ventilator today. she's very stable and trying to pull the tube out on her own... fighter she is! she's pretty pittiful looking (just like her newborn NICU pictures when she was on ventilator). She loves getting "lipstick" on; her lips get dry so she gets some Carmex lip conditioner. Makes her nod her head and the little sweetie, smacks her lips afterward just like when we do lipstick at home. No leg movement today. Docs think she's in spinal shock as the cord messages stopped before they even decompressed her spinal cord. It was very fragile and on the verge of losing function on it's own. We really acted just in time. Docs also say there is a "significant" chance she'll regain movement and for family and friends to use their connections upstairs to pray for assistance with this. Thank you to all those praying... we know they are helping.
Comments (1)
Surgery
posted on 07/13/2007
Surgeons finished yesterday evening at around 8:00 (about 11 hours). We were updated every hour and a half: she was very strong throught the whole surgery and tolerated everything very well. We apparently were misled into thinking Chloe was doing excpetional with her neuro monitoring... however, as soon as they got to the decompression part of the surgery (to take the bone away from the spinal cord) they lost neuro monitor signals from her; her spinal cord in the spot of the defect was 1/5 the normal size and before they could begin manipulating it, they lost the neurological signals. She didn't respond at all with her legs. The good news is that they think this is spinal shock and that her cord, if we didn't do anything, was so fragile that it was on the verge of being damaged. So, we acted just in time; if we waited she would have had to have emergency surgery with little or no chance of regaining function.
Her xrays are so astounding! She's straight, her lungs almost instantly took up the room they needed, she has an expected fever they are treating and is ventilated (maybe 3-4 days, tops) as she had to get 2 units of blood. Above all else, Chloe needed this surgery to be healthy. Her lungs already seem stronger.
The miraculous news is this: last evening, about 10:30, Chloe moved her big toes. The first movements were reflexes to stimulus and then she wriggled them in response to my asking her. Very good sign.
Dr. Emans says she has a significant chance of returning function... just have to keep hoping and praying. We are optimistic and glad yesterday has turned into today.
thank you all... keep praying!
Comments (2)
06/26/2007
Today we are making arrangements for our Boston trip. Chloe says, "Dr. Emans is going to fix my back... little owie, bandaids,... big presents for me!" Mimi and Papa brought over a new slide for Chloe! She's been sliding her day away!
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