Home for Easter Evening

Our little princess... happy on Easter morning after a sponge bath as I propped her up in bed only to have her scoot down again! She tends to be depressed in the hospital (who can blame her?) and isn't interested in much at all. Thus, these smiles and her sporadic interactions with her docs and nurses during this stay were a welcome break from her preference of lying facing away from the nurses station and covering her left eye to shield the light and, it seems, the world in general.
Gracie with her IV Bunny generously given by Child Life at the hospital. They also brought Gracie a very cute Easter Basket... donated by a thoughtful individual at our local Nordstrom.

(Our hospital, Sutter Memorial, relies solely on unsolicited donations to provide gifts, toys, projects, etc. to the countless sick children they care for. Every child in the hospital received a very special Easter Basket... every child.)

Our two sweet bunnies.

(Yes... Preston had to endure the ears to continue years of tradition started by Sophie and Gracie! He doesn't look any worse for the wear, though, does he?!)

"Whatchya got in yours, Gracie?"

Not having read the directions to our new camera, it took several tries running back and forth to get this shot of the four of us with Nana and Papa! Some of them are so blurry because we were all laughing hysterically and trying to keep the bunny ears on the kids!

What a difference just a few hours can make... we much prefer this photo to the first two! After a long soak in the bathtub to wash off the hospital stay, Gracie was thrilled to be home... but her location change didn't stop her from scooting right down in the chair!

We weren't discharged until Sunday following less than adequate renal panel results on Saturday morning. She finally bounced back into normal ranges on Sunday, but then we were left with the debate of whether to actually go home. Her GI doc was trying to arrange for her colonoscopy on Monday (with a bronchoscopy to be done by an intensivist to rule out an internal granuloma at her trach site... suspected from the massive amount bleeding she experienced while inpatient) and it seemed rather cruel to send her home to come back the very next day for a new IV and certainly some psychological trauma due to the rapid return. When it was confirmed with her doc that it would most likely not occur Monday, we happily came home. Now we are looking at the possibility of Friday for the procedures. I will be calling frequently until this is set in stone... we still have no conclusive answers to all that ails her and this is not acceptable.

On another happy note, Mr. Preston took a little step between John and my mom. I actually got it on video... so once I figure out how to edit and post it... you can catch it here! :-)

***Updated 3/26/08*** Gracie is scheduled to have a Colonoscopy, Esophagoduodenoscopy (EGD) and Bronchoscopy on Friday, 3/28/08.

Gracie in the hospital

Well, I haven't done very well with this so far... with no updates since February... and now not-so-good news. Miss Gracie was admitted on Thursday morning due to her GI issues. She is doing well and should be able to go home Saturday and then will return for an outpatient colonoscopy (and who knows what else) next week.

I previously posted about our intent to start a blended diet... that never got off the ground. Unfortunately, since Gracie has such a difficult time tolerating her feeds, it was really impossible to make a safe attempt at it... too much risk with getting her off balance with minerals, etc. We did try to bolus her really small volumes (feed her a set volume by gravity over a short period of time - - this simulates a more "natural" feeding regimen as opposed to her continuous feeds) but this did not work well either.

She had a busy week - - starting with a wonderful visit with our friends Mike and Natalie and their three kids on Sunday, which she not only tolerated but had a great time. Then Tuesday she had a two-hour visit to the DHOH (Deaf and Hard of Hearing) preschool class... a HUGE success. But... at the same time as all this "wonderful" she began having a hard time tolerating feedings and grew more and more quiet as the week progressed. (Interestingly enough, she was OFF her feeds during those great parts of her day...)
By Wednesday afternoon, she was having such a hard time tolerating her feeds that we dropped her to straight Pedialyte and that still made her uncomfortable. Wednesday night she spiked a high fever and we knew that she was on the verge of dehydration... so we called her GI doc and she was admitted.

On Thursday evening she had an X-ray that showed a strange loop in her small bowel... this did not show on a film she had in the fall. So, instead of a colonoscopy on Friday as planned, her doc wanted to have an upper GI study w/ small bowel follow-through. (Barium gets injected into her G-tube and then a series of films (X-ray and ultrasound) are taken to watch the progress.) Unlike the Gastric Emptying Study, Gracie did not have to remain on the table the entire time... thank goodness! The entire process took nearly three hours today and she was an amazing little trooper. Lots of waiting - - back and forth from her KidKart to the table.

The study was not conclusive... there weren't any true blockages or thickening in the small bowel as feared from the oddities in the film from Thursday. The study did reveal a hiatal hernia, a possible polyp (which was not a surprise as she has presented with a couple of tiny polyps in the past) and some sort of small bowel follow-through defect - - this was determined when the barium simply stopped moving through the bowel over an hour into the study and the only thing that made it push through was when more barium was injected to push it along. This leaves me wondering if she is constantly having her feedings get "stuck" and thus, never feels good and is super sensitive to even the tiniest of volumes going into her tummy.

So... the plan is now to have a colonoscopy and to take a look at the hernia next week. (Because unfortunately, the anesthesiologist on call this weekend doesn't do "elective" procedures on the weekend... DON'T get me started on how I feel about that... so instead of getting it done while she's already got an IV in and is here... we will take her home and bring her back for yet another poke... I hate that.)

Clearly, the hernia won't cause the diarrhea... but it would definitely contribute to feeding discomfort. The diarrhea will be addressed by sending a sample to the state lab for a very thorough work-up as the state lab can run tests for all the strange bugs, whereas the hospital lab only runs the "standard" tests - - all of which have previously been negative.

I will update when there is news. Please cross your fingers that we can get to the bottom of this for her... it's been such a battle for well over a year, and because it makes her feel so awful, it truly has become dehabilitating... and now she has lost a total of five pounds from her highest weight.

On a happier note... Gracie has handled this stay exceptionally well. Many smiles... some attempts at signing - - even with only one working hand due to the IV... a much better tolerated stay than any in the past. We are very proud of her:)
Also, coming to the hospital is always like a reunion of sorts. Since we haven't been in (other than out-patient procedures) since December 2006, it was great fun to catch-up with our hospital family. Many got to see/meet Preston for the first time - - as I brought him in for a bit today to see where we are - - and especially to see Gracie. I stayed home with him last night while John stayed with Gracie. This morning, Preston was very quiet - - which is unusual - - and seemed to be looking for his Daddy and his sister. Too sweet.

The mystery that is Gracie's Hearing

Gracie's hearing continues to perplex us all.

Many of you have emailed me about her hearing after seeing her with an aid on again... so here is the scoop in a (believe it or not!) abbreviated version. (I started this post a couple of weeks ago... now that I have time sitting here at Gracie's hospital bedside, I have a little time to catch-up.)

She has been seen by four different audiological groups... all have been left stumped by her presentation. As an infant and toddler, her ABRs (Auditory Brainstem Response test) showed a severe to profound loss. Behaviorally (tests in the booth and her social/behavioral responses at home) showed a moderate to severe loss.

When she had her PE tubes in her ears, she had a constant drainage problem - - and because she is so open on the left side, we would even see the color of things she tasted come out her ear. She constantly was on eardrops for the drainage/infection issue and over time we started noticing a decrease in her hearing behavior. Then she got pretty sick with her GI issues and heart problems in summer of '06 and by spring of '07, it seemed she wasn't hearing anything at all. And she wouldn't even consider putting on her bone conduction aid.

In September, we took her to the California Ear Institue to try and get to the bottom of her hearing situation. They have a great CT machine that you can sit in the seat and in about 90 seconds it gets the shots they need. Unfortunately, it was too scary for Gracie and she wasn't still enough. After explaining her history and what we've been observing, the audiologists decided not to put her in the booth and it was recommended we have a new ABR, OAE, ASSR and CT done - - all under sedation. So that's what we did - - and at the end of it all, the audiologists came out and told us that there was absolutely no brain response at all... TOTAL DEAFNESS... given her recent hearing behavior, we weren't floored by these results, but were a little surprised that there wasn't at least some brain response. They also told us to give up on the hearing aids because clearly, there was no point. Gracie had a CT to determine the presence of the auditory nerves and the cochlea. Unfortunately, since she is "structurally complicated" and her nerves are very small, the CT was inconclusive and an MRI was recommended. Well... Gracie has a pacemaker and thus, cannot have an MRI. So, our only option in regard to giving a cochlear implant a try was to have the surgery and they would find out in the OR whether or not the nerves were present/viable. We assume they are present since we had previously witnessed hearing behaviors, but felt that at this point, we weren't entirely comfortable taking the surgical route with no guarantees of success and if she really did have some hearing potential, that could be destroyed with the operation. Plus, our guts were telling us that all that fluid was causing an additional conductive problem... that the loss might not be complete or permanent. The team at CEI noted the fluid in their reports, but insisted that the fluid wouldn't have resulted in a complete lack of brain response. (I should note that Gracie is neurologically complex and her brain structure is not normal... we reiterated this to them and wondered if it's possible that this fact would affect the results... but they were confident in the results.)

In November, we requested the ENT take out her left tube (the right had come out on its own in the spring). He did... and patched the eardrum. At the same time, thanks to the persistence and help of Gracie's DHOH (Deaf & Hard of Hearing) teacher, the district approved an evaluation with an educational audiologist. She came in December for a few visits... right around the same time that we were certain that Gracie was turning to some of Preston's shrieking (after having thought it for a while, now we really felt certain). Katie, the audiologist, brought a nifty machine (the name of which slips my mind) that has a piece that looks a little like a giant stethoscope head at one end and has a microphone attached to the other end of the box. The "stethoscope" piece was placed on different areas of Gracie's head and body and then various sounds were made - - voices, banging of a drum, etc. The "stethoscope" piece provides vibro-tactile stimulation in response to the sound. Gracie loved it... so we started trials with her bone-conduction aid again and had positive responses/behaviors from her.
Once we made what seemed to be real progress, the aid broke and we were without it for over two weeks. So... now we have essentially started over with her auditory training.

We are still in limbo on this issue... so complex is our girl!