Chloe stands!
posted on 03/23/2008
Chloe is standing and using her ablegaitor, finally! We love to see her making progress every day and hope to write soon about more!
Comments (1)Yea
posted on 09/04/2007
Today, Chloe jumped in her jumper! I actually got it on film for proof! She is a jumping maniac! She probably did it for about 10 mn or so for what, you ask? Why did she jump? She wanted the video camera and stood up for it. I offered the camera as a bargaining tool and then, she wanted her turn: jumping and saying, "me, now, me now... "
Funny girl! What a girl wants!
Comments (2)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)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)
