Monday, February 28, 2011

Not too much to update

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.


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!

If you are interested...

I found this on the Mayo Clinic's website fairly closely describing what CeCe had's not too overly graphic either...

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!

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 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!

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 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 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.

Thursday, February 24, 2011


They are going to take CeCe back off her feeds at 5:00am with the hopes of extabating her around 7:30 or 8:00 (hospital time). I am going to have a conversation with her respitory therapist tonight and get his thoughts about letting her stay intabated through the weekend to give her body more of a chance to heal on her own first...again in an attempt to avoid the trach. But, they do have her on the ENT's surgery schedule for 4:00pm tomorrow just in case.

Morning update...a "yea"!

The rounds docs came by and decided they want to leave her intabated another day to be sure the swelling has gone done and give her the best chance of avoiding the trach. YEA!

So, they are going to keep her mildly sedated with a different drug that will make it easier for her to "come around" when they are ready to go tomorrow.

Neuro came by after reviewing her CT scan from this morning said "the scan looks just how whe would want it to look. No swelling, bleeding and ventricles are small." DOUBLE YEA!

She looks a little puffy, but opens her eyes now and then if there's a loud noise or the nurses are messing with her. She seems to be taken it all in stride and tolerating this life interuption.


CeCe had a good night. They have adjusted her feeding tube in anticipation of her being able to "eat" again today. But, they want to wait until after her 8:00am(ish) CT scan ( at the incision site) to be sure she's ready.

Today is a BIG day for her again. They have decided to extabate her (remove her vent and allow her to breathe on her own) but we have already been warned by multiple docs and nureses that this is a tough process to watch and kids respond in different timeframes. They are first going to scope her again to check the amount of swelling etc in her airway to be sure they can re-intabate her if necessary. Then, they will slowly bring her out of sedation until she is fully awake and is ready to try breathing on her own. This is the scary part...she's going to be waking up with tubing going every which way and this will make her anxious and stressed and probably try to pull things out. If she does alright, they will pull the tube and...viola...she is ready to go. If not, they will have to re-intabate and then consult with the ENT about the tracheostomy.

Three things we need prayers for today...easy extabation-no trach, no infection, no leakage at incision site....let's call it out, people!

Wednesday, February 23, 2011

CeCe is out of surgery!!!!!

She came out of surgery right on time and the doctor said she did great. They did have to give her some blood since her hemoglobin was a bit low. The anesthesiologist said this often happens and is no reason for concern. He also said..."She was my daughter when she was in there, but now I'll turn her back over to you." How awesome is that.

The neuro said they had to shave part of her skull and the back arch of C1-C5 and a tiny bit of C6. That was more then I expected, but he seems very hopeful that this will "fix" her issues. He DID NOT have to go into her dura either! A HUGE deal in that he didn't have to open the covering around the brain nor harvest a patch (or use a synthetic one) which is very positive.

We haven't gotten to see her yet but expect to go in within a few minutes. Please continue to pray that she does not develop any infection or have an leakage at the incision site and that this did actually fix the vocal cords and stridor.

Tuesday, February 22, 2011

Out of MRI

CeCe is doing fine...the MRI and xray took over 2.5 hours...and they were delayed in starting. She is on a vent which is breathing for her at the moment, but is sedated, of course, and resting. They have also restrianed her arms so she can't accidentally pull her tubes out.

We have emailed the MRI results to her Philly neuro for one last look but we are not sure he'll be able to get the look he needs or that he'll have a chance to view it before her surgery tomorrow. Either way though, enough people have convinced us that she needs this surgery and we are ready for it (as much as we can be).

***Sidenote***-One of her alarms just went off and when I asked what that meant, they said she was coughing...we couldn't hear a thing...weird. She also opened her eyes for a momment before they gave her more meds and it was so nice to see her baby blues.

Anyway...the nurses and doctors remember us from last time which is sort of comforting and all have asked how she is doing...

I'll post more tomorrow when I can.

Thursday, February 17, 2011

Procedures scheduled...

CeCe's MRI will be on Tuesday at 4:30pm and the decompression surgery will be Wednesday at 7:45am. They have decided not do the trach unless necessary and hopefully this is something we can avoid altogether. We are of course anxious for these procedures and praying that CeCe responds very quickly witht he stridor going away and her vocal cords regaining tone and movement.

I'll update all I can from the hospital.

Wednesday, February 16, 2011

More tough days to come.

Our neuro report/appt. yesterday did not go that well. He thinks CeCe's only option at this point is the decompression surgery. He will also be consulting today with her ENT to discuss her need for a trach.

He went ahead and added her to his schedule next week for an in-hospital MRI on Monday and the decompression surgery on Wednesday. Brian and I are weighing everything he has said and just got off the phone with our neuro in Philly and he agrees with everything our neuro is telling us. He also said that they only see this in about 10% of SB patients.

The neuro also said that he can't guarantee that this will make any difference with CeCe's fact, we may not know for months what the results are of the surgery as it can take that long for her body to respond. If the surgery doesn't help her chiari, she will most likely end up with a trach and a feeding tube and we wait to see if just time and growth will help her then.

Not sure what else to add at this point, we will post an update as soon as we have more information.

Friday, February 11, 2011

Back from Neuro and ENT

So...nothing too new here. ENT is still thinking she will need a trach. Her vocal cords are not moving well and he is VERY concerned that her airway will be compromised if she gets any kind of cold or worse, RSV. While this is a relatively simple operation, but the care at home is HUGE. She has to stay in the hospital for 5-7 days, mostly to teach us how to care for her. We will also have an in-home nurse that will come by to check on her throughout the coming weeks. Becasue this is such a real possibility, Brian will not be returning to work for at least 14 more weeks.

Then we went on to neuro where they adjusted her shunt again to try and maximize the draingage. She's now a 1.0! We will go back on Tuesday afternoon and she will get to meet with her neurosurgeon (he's been out of town during all of this) and get his thoughts and advice. We think he is going to say she needs the decompression surgery and if he does, we are going to get a second opinion either at Duke or back in Philly.

This has been a crazy week for little Miss, and we pray next week is better. Till then...let the shunt do it's shunting!

Thursday, February 10, 2011

Super quick update...

We have an ENT follow-up tomorrow at 9:30am where we will discuss the trach and a neuro appt on Tuesday at 3:45pm where we will discuss the MRI and the decompression surgery.

Please pray for our family.

SB News

Spina bifida has been in the news a lot today. The MOMS study released a an article in "The New England Journal of Medicine" that concludes that fetal surgery is better for a fetus with spina bifida. We knew this was just around the corner as we heard about it the week after Christmas. Here are some of the stories if you want to check them out.

This has really thrown me today...probably partly because we just came out of the hospital. Since CeCe was in the post-natal group, all the wonderful things they are talking about don't apply to her. Which brings me to today. I have spoken with her neurosurgeon in Philly and he believes that her stridor IS related to her Chiari and that she will need the decompression surgery. She needs an MRI to really know what's going on. Of course, I've already called her neuro here and am waiting for them to call me back. The MRI will give them a much better picture of what's going on....I wished I had called Philly sooner as he believes the larnygo malacia was related too and maybe we could have spared her that surgery.

Brian and I are moving through as best we can and we will be considering what we need to do as a fmaily as we go forward.

Wednesday, February 9, 2011

"The Beast"

When I was a kid we used to go to an amusement park called Kings Island. It had one of the old-fashioned, Coney Island style, wooden roller coasters that was once touted as the biggest, fastest, blah blah blah coasters in the mid-west...or something like that. It was called "The Beast". I was afraid of that thing for 2 summers before I got on it. It jerked you around for 2 and a half minutes before depositing you back at the start, breathless, with your hair standing on end....that's how we felt yesterday.


Once you rode felt more prepared going on it the next time. You knew where the dips and turns were and the spots where your stomach dropped. That's how we feel today.

I've decided SB is just like The Beast. But for now,WE ARE HEADED HOME!

This morning they were going to move CeCe out of the ICU and up to a regular floor...but after neuro poked around, she aced her swallow test, and ENT put in their two cents...we got the okie dokie to head home. CeCe still has quite a stridor (in fact the folks from Respiratory Therapy keep looking in the room as they pass) her airway is open and her O2 is 100%. All the scary scenarios are still very real possibilities, but not today.

Thank you all for your prayers...once again, we owe you one.

Tuesday, February 8, 2011

Not too much to report

CeCe is doing ok...the stridor is still the same. She will have a barium swallow in the morning sometime. Basically they will feed her while watching to see if she swallows correctly and making sure she doesn't aspirate into her lungs.

The ENT and neuro docs will check on her in the AM and decide what to do from there. That's about it.

Admited to Pediatric ICU

CeCe had her surgery today for her laryngo malacia and it went well. The surgeon came out and said it went very well. He had me a little upset right beforehand saying that he was concerned that it would be related to her Chiari and Spina Bifida when he had told us two weeks ago that it was in no way related. Geez.

She was in recovery and the stridor seemed to be gone...then she woke up. The stridor is still there in full force indictating that something else is also going on. The ENT came back by and said the sound was consistent with a problem with her vocal cords. He scoped her again (with us in the room, ugh) and said that he could see her left vocal cord move but her right one has paresis (sp?) Everything goes sort of fuzzy from here...

What this means is:
a. she made need a trach tube
b. she may need decompression surgery for her brain to have more room.
c. her shunt may need to be adjusted b/c the fluid in her brain is pushing on her vocal cord never and causing the "weakness" (or paresis).

Neuro has been consulted and they came and adjusted her shunt again. Their hope is that if they relieve the pressure, the stridor and paresis will be fixed....THIS IS WHAT WE SO WANT IT TO BE. The alternatives and decisions we face otherwise, are too much for me to comprehend right now.

Please keep CeCe is your thoughts and prayers.

Monday, February 7, 2011

Surgery tomorrow

I hate that she is having to go through this, but she sounds so awful...I'm glad she'll be fixed up tomorrow. She's scheduled first since she is the youngest be praying/thinking about here at 7:00am! I will update the blog as soon as I can.

Sidenote: Remember we don't get phone calls, emails or texts at the hospital until we can go outside and find a signal.

Wednesday, February 2, 2011

Here we go again...

I just got off the phone with CeCe's ENT and they want to move her surgery up a week to Tuesday, February 8th. She just isn't getting any better. So she is going to have a super epiglottis plasty (sp?)to loosen the area around her larynx to help her Stridor. She sounds just terrible right now and they said she'll be better that night but may have some swelling that will bring the noisy-ness back on days 3-4 post surgery. We won't know until she is in recovery if she will have to stay the night.

I'm sad for her...poor thing has been through so much already, but if she needs, she needs it. They at least were able to get her in the first morning surgery spot at 7:30am (arrrival at 5:30am) she doesn't have to go thru all the NPO nonsense again like last time.

Please pray for our sweet girl...she's a tough one!