CT Scan came back and her ventricles look good...they can also see that her cerebellum has the room it needs....good stuff there. BUT, they can't explain why she is vomiting so much so they are checking for a gastric blockage, urinary tract infection, and just a plain ole virus. Neuro said she is ready to move out and about from her crib for feeds to get her neck moving again. Still waiting on uro to report back from bladder and renal scan also.
She's having a rough day today. She's not eating and cries when she tries to poop and nothing comes out. They've got her back on IV pain relievers since she couldn't keep the oral ones down and she hasn't slept but 30 minutes since 4am...not a pretty picture.
Still waiting for her smile to return.
Monday, February 28, 2011
Overnight
Although CeCe's numbers stayed good, she started vomiting everything she ate including her meds from about 8:00 on. They had to put the IV back in her about 3am so she wouldn't dehydrate. Neuro has since asked for yet another CT to check the shunt and they will be taking her down at about 5:30am so they can get the pictures for the rounds docs.
Sunday, February 27, 2011
Quiet Sunday...literally.
All of CeCe's docs converged at onCe around noon today. They are still watching her very closely to be sure her heartrate and bp stay where they want them...and she hasn't really dipped all day. She will not moved her neck at all and cries when you have to pick her up and move her the slightest bit, but they assure us that's the best thing for her right now. Neuro thinks she's on a great path and she just needs some time for her body to equalize.
We were also able to have her urologist come by to check her out since we keep having to cancel her office appointments because we have ended up in the hospital. He is going to go ahead and run her bladder ultrasound tomorrow that she needs updated to be sure nothing has changed there. Please pray for this for her.
She still has the slightest bit of stridor but we can already tell it's better than it was just yesterday and she's eating full feeds without coughing or sputtering...GOOD STUFF!
**Side Note** There was a group of student nurses here today and they all wanted to see and listen to CeCe...most of them had never heard stridor and hadn't seen an SB kid. They all peered in at here and whipped out their stethoscopes. She's such a rock star!
We were also able to have her urologist come by to check her out since we keep having to cancel her office appointments because we have ended up in the hospital. He is going to go ahead and run her bladder ultrasound tomorrow that she needs updated to be sure nothing has changed there. Please pray for this for her.
She still has the slightest bit of stridor but we can already tell it's better than it was just yesterday and she's eating full feeds without coughing or sputtering...GOOD STUFF!
**Side Note** There was a group of student nurses here today and they all wanted to see and listen to CeCe...most of them had never heard stridor and hadn't seen an SB kid. They all peered in at here and whipped out their stethoscopes. She's such a rock star!
If you are interested...
I found this on the Mayo Clinic's website fairly closely describing what CeCe had done....it's not too overly graphic either...
http://www.mayoclinic.org/chiari-malformation/treatment.html.
She's is doing "ok" right now...the docs haven't come through yet this morning...but you could tell she was really in pain last evening/night and the docs hadn't written for any pain meds. The nurse had to call and call to get them to call back so they could even give her Tylenol. She woke up about 3am and they were able to dose her agian. Her heartrate is still of concern and has set off the alarms several times during the night as it dipped below the monitors limits, but she brings herself back up (i.e. no outsude assistance) but even then she stays on the low side for what they like to see. She also doesn't want to move her head and neck at all from side to side...crucial to help her heal properly...can you blame her?
Neuro is going to be consulted again today to get their opinion this morning. I'll post agin after rounds/neuro consult.
http://www.mayoclinic.org/chiari-malformation/treatment.html.
She's is doing "ok" right now...the docs haven't come through yet this morning...but you could tell she was really in pain last evening/night and the docs hadn't written for any pain meds. The nurse had to call and call to get them to call back so they could even give her Tylenol. She woke up about 3am and they were able to dose her agian. Her heartrate is still of concern and has set off the alarms several times during the night as it dipped below the monitors limits, but she brings herself back up (i.e. no outsude assistance) but even then she stays on the low side for what they like to see. She also doesn't want to move her head and neck at all from side to side...crucial to help her heal properly...can you blame her?
Neuro is going to be consulted again today to get their opinion this morning. I'll post agin after rounds/neuro consult.
Saturday, February 26, 2011
Movin' on Up!
CeCe was moved up to the "Progressive" floor! She does have a little stridor, but NOTHING like it was...the nurse said it just sounds to her like a child who had just had an intabation tube removed. Her heart rate and blood pressure are still a bit out of whack, but they are watching her very closely.
She is moving her head and neck some, but you can tell she's sore...she did cry (for the first time since Tuesday) this afternoon. But, she is smiling more and so happy to be held.
I got to go home for a few hours and be with Caroline....who now has a wicked cough and will be heading to the doc as soon as possible...great.
There's talk about us going home on Monday! That's all for now!
She is moving her head and neck some, but you can tell she's sore...she did cry (for the first time since Tuesday) this afternoon. But, she is smiling more and so happy to be held.
I got to go home for a few hours and be with Caroline....who now has a wicked cough and will be heading to the doc as soon as possible...great.
There's talk about us going home on Monday! That's all for now!
Morning rounds..a good night!
They were able to remove CeCe's NG feeding tube last night and reduce the oxygen she was needing to the lowest setting....then when we came in this morning, they docs decided to take her off all her meds, cannula, and even removed the port in her foot that they keep as a "just in case" measure should she need IV drugs and such. A good thing too because her little foot had swelled up over night where the port was and her right foot was a deep purple because the O2 wasn't circulating properly. Once they removed it....it turned right back to pink.
She ate a full breakfast and went right back to sleep. The Intensivist doc said he thinks she is ready to move out of the ICU onto another floor, but wants the blessing of neuro and ENT before doing so...who knows when they'll be by?!?
Let's keep this train rolling!
She ate a full breakfast and went right back to sleep. The Intensivist doc said he thinks she is ready to move out of the ICU onto another floor, but wants the blessing of neuro and ENT before doing so...who knows when they'll be by?!?
Let's keep this train rolling!
Friday, February 25, 2011
Deep breath
The docs turned off all of CeCe's meds today about 5:00am with the thought that she would be ready to extabate about 7:30am...but, CeCe had other ideas. They expected her to wake up fairly quickly on her own and that wasn't happening. In addition, her heart rate was dropping into the low 60's and her blood pressure was WAY up....like 155/95.
The docs weren't liking what they saw and described it as a triad...bp + heart rate + respiration=proper shunt function....and the respiration part was missing since she was on a vent. So the neuro adjusted her shunt again and they sent her for a CT scan to check the setting. This is on THE OTHER SIDE OF THE UNIVERSE from her room in the PICU. So they rolled hear down there and while she was in the room her heart rate drop quickly to 50 and the monitors started screaming and beeping. Brian and I could her them from outside the door shouting at one another, but we couldn't understand what they were saying. They came out and said we needed to get her straight up to her room and we rushed back. Her numbers were a bit all over the place on the trip back and it got pretty scary....All the docs came in the room and started watching her and slowly but surely her numbers began to even out.
They decided at that point to go ahead and extabate. They had all the "just in case" meds at the ready and re-warned us about what we were about to see. CeCe was a champ! She was fully awake, with the tube and she just started sucking on it like a binky...then they slid the tube out and she just sort of looked at them....no crying, just staring at them.
So, she is resting now with intervals of alertness and we are just watching her like a hawk. So far, no stridor, no chest retractions....all good. Hopefully her ENT will come by later today and assess from his point of view...I think she looks good....squishy, pink and sweet.
The docs weren't liking what they saw and described it as a triad...bp + heart rate + respiration=proper shunt function....and the respiration part was missing since she was on a vent. So the neuro adjusted her shunt again and they sent her for a CT scan to check the setting. This is on THE OTHER SIDE OF THE UNIVERSE from her room in the PICU. So they rolled hear down there and while she was in the room her heart rate drop quickly to 50 and the monitors started screaming and beeping. Brian and I could her them from outside the door shouting at one another, but we couldn't understand what they were saying. They came out and said we needed to get her straight up to her room and we rushed back. Her numbers were a bit all over the place on the trip back and it got pretty scary....All the docs came in the room and started watching her and slowly but surely her numbers began to even out.
They decided at that point to go ahead and extabate. They had all the "just in case" meds at the ready and re-warned us about what we were about to see. CeCe was a champ! She was fully awake, with the tube and she just started sucking on it like a binky...then they slid the tube out and she just sort of looked at them....no crying, just staring at them.
So, she is resting now with intervals of alertness and we are just watching her like a hawk. So far, no stridor, no chest retractions....all good. Hopefully her ENT will come by later today and assess from his point of view...I think she looks good....squishy, pink and sweet.
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