3/30 Great day!!

Anya finally had a good day! No retching at all, yea!... We need this.

Here is Anya listening to Nana G on the phone...

Hmmmm

Sorry we haven't updated lately, we just haven't been sure what to write! This last week hasn't been the best for Anya but we can't pinpoint what is going on, shocker. She is puking up a lot of mucus and retching a lot, more so than the last couple of weeks. We had to change her formula last week due to some problems with "dumping" (food traveling to fast through the intestines) that was leaving her feeling hyperglycemic. So the puking of mucus could be from a change in formula, her Nissan, or a cold (which causes more post nasal drip). So now we are playing around with different formulas and feed rates hoping to fix the problem. She gets very wiped out when she starts puking mucus, if she didn't have the Nissan she would def. be in a episode vomiting food. We have a GI appointment on Tuesday to discuss what we can do to help her.

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3/18 Lounging w/ Mommy

I'm doing really well everyone...

Good morning

3/5 2 steps forward, 1 step back...

Don't get me wrong. We'll never give up on this little punkin. We knew going into the surgery that this may not be our answer. We tried not to get our hopes up, but it happened anyway. Just like it always does. Just like it probably always will when we come across another possible resolution. Today was just huge disappointment. We were already begining to dream of what we'll do with those 'extra days' we'll now have each week that we used to spend sitting at her side. Thinking how we can't wait to start gaining muscle mass and begin some aggressive physical therapy.

She is still sleeping/lethargic now and seems to have stopped vomiting and retching. The retching finally stopped around 6 but by that point she was bringing up trace amounts of blood. Not enough to be threatening but enough to know she is putting substantial strain on her new nissen wrap. This was our concern here, is that if she continued to vomit follow the nissen re-do, that she will just tear through this one as well and it will be back to square one. For now the nissen is doing it's job; when she is vomiting, she is only bringing up mucous and saliva from her esophagus. Her stomach content has all stayed down. Although we'll continue the need to manually empty her stomach content and stop feeding her at the on set of an episode (to reduce upward pressure on the nissen), at least she is not bringing up damaging stomach acid through her esophagus. I also feel more comfortable now doing a slow drip feed sooner since it doesn't seem to be coming up and contributing to the retching. If that's the case (time will tell), she'll be able to continue caloric intake and the potential to gain some weight.

Well SH##!!!!!

There goes all our hope. No more than 20 minutes after that last posting, Anya started another episode.  Exactly what we were afraid of................        
We are out of options.

3/5 Doing GREAT!!!!

Hi All.  I just wanted to let everyone know that Anya is doing AWESOME!!  She has been very very happy, smiling all the time.  She doesn't seem to be showing any signs of pain from the surgery and the incision is healing nicely.  Although we are still very cautious with her, she's been able to spend some time in her stander and enjoys it as much as ever; no discomfort.  She is tolerating her full feeds effortlessly and has not had any retching since that first night. 

We often get asked if this means she'll be able to eat by mouth now, but unfortunately it's not that simple.  Her dysphagia (inability or difficulty coordinating a swallow reflex) is more likely a neurological dysfunction and not totally a structural or physiological issue.  Although at least now she has a fighting chance... Prior to repairing the hernia there was probably too much discomfort or blockage of the esophagus to swallow, even if she knew how to.  Time will tell.  Our goal is for her be eating cake at her 4th birthday party.

Discharged!! Yea!

3/3 Hoping to go home today...

3/2 One step closer..

 

Anya is now taking bolus feeds and she just put her epidural catheter taken out. I'm thinking it if somebody pulled a 9-inch long tube out of my spine, I wouldn't be smiling. Anya sometime has a sick sense of humor.. She was smiling and giving herself her "Happy Hugs" the whole time, even while they pulled the tape off. Hey, whatever makes her happy.

3/2 Upper GI looked great!!!

3/1 Another good day

Hi All.  Anya had a great day today.  She had her IV's removed last night and started on formula this afternoon.  She'[s just taking a slow drip-feed, increasing by 10cc/hr every 4hours.  More to write but Anya's getting tired, time to get her to bed... 

2/28 Happy girl

Anya's doing great today. We're getting smiles!!! She is finally starting to take pedialyte (very slowly).

2/27 Slept well considering...

Anya drifted in and out of sleep through the night which to me is impressive that she can sleep at all with all the "stuff" hanging off her.  Overall she's doing wonderfully.  Her O2 saturation have maintained mid to upper 90's throughout the night (it helps everyone sleep without alarms going off every time it dips below 88%). She's been on room-air (doesn't require supplemental oxygen) since right after surgery.  Not that we expected her to need air, we are just thankful and I'm always so proud of what a good "breather" she is.  It's cute, in times past, when her O2 levels are lower you can just talk to her encouragingly and quickly watch the levels increase.

Right now she appears to be sleeping soundly (O2 pinned at 100%, yea!) and she hasn't had any retching in several hours.  She's doing great.

2/26 All done and doing fine...

Anya surgery went as well as we could hope for.  She is all settled in to her new room where we will be for the next 5-7 days while she begins to heal.  The whole surgical team was awesome again.  They re-did her Nissen Fondoplication and repaired her hiatus which was badly torn by the Paraesophogeal Hernia.  Her vagus nerves did not appear to be damaged so they opted not to do the pyloriplasty which is good in our minds to keep as much of her anatomy just as Ma Nature intended.  She drifting in and out of sleep now with 2 IV's, a cathiter, an epidural (for pain management), and then the usual for monitoring vitals.   We won't start her feeds for a day or two to let her stomach heal for a bit.  Unfortunately she has been retching a bit and requiring suction but it seems to be only saliva and/or perhaps post nasal drip. So technically not vomiting, Yea!  All-in-all, it was a good day.  Thank you everyone for your prayers and well wishes.

Did great!

Surgeon just came out. Everything went well. Waiting to wake up.... Haven't seen her yet.

2hours...and counting..

We just got an update that everything is going as planned.     It was an emotional drive in this morning.  Seeing those big baby-blues in my rear view mirror made it literally painful to aim the car toward the hospital.  It was an awkward internal battle where instincts were tell me turn the car around and drive the other way.  It was not a "gut feeling" that something was going to go wrong. It was an instinctual feeling that you must protect your child from danger.  From being cut in to.  From rolling the dice and gambling on statistics.   As much as I know she needs this, and I know she will be fine and strong and brave and that this is the best thing for her,  there is still that risk involved. And I do not like gambling those blue eyes.    For as long as possible I had (dad writing) put off the imagery of Anya on the OR table; as it was just too much.  I have no problem with the "gore" of it all, but when it is my cute, adorable, Innocent, loving, happy, little princess, that's a totally different story...  It didn't really hit me until I was simply trying to pick out her cloths this morning... when you think about what to wear, what's going on today.. what does she need to be prepared for...  For Anya on any other day the decision is based on whether or not she is looking sick, if she has PT that day, if we are going anywhere, if it's cold out.  This morning's decision inadvertently brought on all those other IF's or rather the "What if's".  So I took my little 30 second breakdown, shook it off and grabbed something comfortable for her to wear.  I stopped thinking about it (pretty much) and decided to lay back and trust God on this one.

2/26 just went in...

2/25 Night before surgery

Anya's surgery is scheduled from  9:10 through 12:10 tomorrow morning. We'll need to be there by 7:30 to prep and meet w/ the surgeon and anesthesiologist.  Anya finally stopped vomiting around 2 this morning and was able to hold down fluids through most of the day with a couple hours of relapse this afternoon but finally bouncing back out of it and taking in food.   Nana and Papa G. got here around 8:00 this evening to take care of the boys while were at the hospital.  They had Anya cracking up before she went to bed.  She sure loves her tickles and kisses.

So she is sleeping now and is only allowed to eat until 3:00am so she has an empty stomach for surgery.  I'm sure she'll be as strong as she always is but I still hate having her go through this.  Breaks my heart (but fixes her belly, hopefully).  Asking for a few extra prayers on this one... Thank you all!!!       We'll update post-op.