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.

2/24 Last episode??

Well, Anya started into another vomiting episode this evening around 8:00pm.  Hopefully this will be the last one.  We're going into Thursday's surgery hoping correcting the hiatal hernia and redoing the nissen will put an end to these episodes, yet understanding that it may not be our solution.  The only good coming out of this episode is that it affirms our decision to go ahead with the surgery.  After last week we restarted her Zantac and Prevacid and kept her laying only on her left-side (good for reflux, bad for scoliosis).  Earlier today, after making it a full eight days without getting sick we thought (again) that maybe she'd be fine w/o the operation and foolishly started to have second thoughts.....  So this at least puts those thoughts to rest..   It's been about 3 1/2 hours since she started and Anya continues to get sick every 5-10 minutes.  It goes without saying but I do sure hope this is the last episode...  If it's not, it will be painful for all of us.

2/19 update

We took the bandages off Anya's thigh this evening and the incision is healing very nicely.  She tolerated the whole thing like an absolute champ.  She didn't show any signs of pain or discomfort.  I will say however the incision is much larger than I thought it would be. I was expecting  (because it's what what we were told) it to be about a half-inch. Instead it is closer to  2 inches.  Oh well, no one should be looking at my daughter's legs anyway (dad writing this).

Prior to meeting with the surgeon the decision to redo Anya's nissen felts a bit like the decision to sign the "Stimulus Package", we don't feel comfortable doing it, it may not help at all, it may actually hurt the situation but thing have gotten so bad that we have no real choice but to just do something.  However, after our meeting we both feel very comfortable that this is the right decision.  We reviewed her upper GI results and could clearly see that over 25% OF her stomach had migrated up above the diaphragm. It is a severe paraesophogeal hiatal hernia. It is difficult to say if this is the cause of the vomiting or rather the result of the vomiting. In either case it's not good and must be corrected.  Hiatal hernias are common following a nissen, especially one done at such an early age (5-days old).  Anya has had upper GI's in the past but we were always told everything was normal. Out of couriosity I reviewed her Upper GI report that she had done after the first month of this vomiting starting when she was 5 months old.  It reads:
"...Barium extends into the rap portion of the fundus which appears to extend above the diaphragmatic hiatus..."  Now I'm sure I've read through this report before because I've read over all her records time and time again looking for answers.  The difference this time is that I now better know my (her) anatomy, and know now that what that says is that she's had this Hiatal Herina for TWO years..  (I'm just going to bite my tongue here......)
 
Here's my theory...  I thing that along with her Paraesophogeal Herina she could also have a "Sliding hiatal hernia" which is just what it sounds like, a hernia that periodically slides up and down.  Perhaps the hernia noted in her earlier Upper GI was not large enough to be concerning because it may not have been done while she was vomiting or rather while it was at it's maximum herniation.  I have to review out journal but I don't think we had started journaling yet.Perhaps the stomach gets forced up through the diaphragm as she gains a little weight or start taking in the recommended calories, causing it to be cyclic.  As she stops eating and looses water and mass, the stomach drops back into place in the abdomen. Just a theory.  Anyway it needs to be fixed, and unlike the Stimulus package, I now think this  could actually be a viable solution!

So now what... Anya goes back in for surgery on Thursday, Feb 27 which fortunately gives me a good excuse to get out of my vasectomy (phew, that was close). Unfortunately because our surgeon is a dinosaur (his words, not mine) this surgery will not be done laproscopically like the first time.  The plus side is that this guy has a much lower failure rate (1%) versus the national average of 15% (failures are when the nissen comes undone and a hernia occurs like in Anya's case. With his technique he adds many more internal stitching for reinforcement.  Whatever works... We are very comfortable with this surgeon and needed to just bury of concerns of the huge 6" scar across her belly. I remember on her first surgery when I  was concerned with those little laproscopic scars. In hindsight, no big deal.  I'm sure it'll be the same for this one.  We are just so excited to have possibly found the answer to her vomiting so she can grow and have an opportunity to thrive.        She's so dang cute sitting here next to me. I'll try to get some new pictures out soon..

2/16 Sick again..

2/15 doing well

Anya is doing good today. We ended up taking her to the ER yesterday afternoon for rehydration. Although she had pretty much stopped vomiting late yesterday morning, we just felt that if she slipped back into the episode she would be so far behind with fluids that it could get dangerous. Especially since she just got done with her last episode on tuesday. Doing okay now. Not pefect, lots of hand biting.

2/13 Sick again

Anya is sick again. Started at 8 this a.m.  This is so hard now knowing (or at least we think we know) what might be the root cause (the Hiatal Heria) of her vomiting and net being able to do anything about it.  This morning we were able to bump-up her appointment to meet with the surgeon to Tuesday (feb 17th) to discuss our options.  It is still not soon enough in our eyes...

2/10 Home and sleeping

Anya is sleeping very soundly right now and has not vomited since she went to bed about two hours ago.  We were able to confirm the suspicions of a Hiatal Hernia via an Upper GI this afternoon.  This is sort of good news to us in the fact that we FINALLY found SOMETHING.  Tomorrow we will be contacting the surgeon and her two different GI docs for there opinions on how to handle this.  As we understand it, in order to repair the hernia we will need to re-do the nissen.  The issue we face is that if her vomiting is not caused by this hernia but rather caused by a neuroligical misfunction and her episodes continue after the surgery, each time she wretches as her body tries to vomit could potentially be very painful for her.  THere are a few other risks but I am actually too tire to think or write anymore tonight...             Bottomline, Anya is home and sleeping and it was overall a successful surgery.  Goodnight.

2/10 Good shape for the shape she's in...

Anya is still doing okay this morning although she's still puking.  It's safe to say she's 'recovered' from surgery but now we're just dealing with her typical issues.  Katie and I stayed in the hospital with her last night while Nana and Papa G stayed home with the 3 boys.  I don't know that we will ever have both Katie and I stay here at the same time again. Anya didn't sleep much last night and, as the little plaque in her bedroom reads, "When the princess aint happy, aint no one happy".  Between the beeping monitors, Anya's puking and 'crying' (she doesn't actually cry but I don't know how else to describe her noises, wimpering perhaps) and Katie and I attempting to sleep on the little pull-out couch, and the nurses coming in every couple hours to check vitals, it made for a rough night.  Anya did great sleeping the last two times she was here but you just never know what your going to get with this crazy kid...  The funny thing is even the anesthesiologist (who was a very impressive doc, by the way) had a hard time getting her to sleep. She said she couldn't believe the dosage it took to finally knock her out.  I told you she was a fighter.

 

Regarding the surgery, the endoscopy did discover that her nissen my have herniated (a portion of the stomach may have slipped up between the esophagus and the diagram that separates the upper chest cavity from the thoracic cavity).  This is supposedly more common when kids get their nissen at such a young age (5 days old in Anya case) because the surgery creates a weak point at that junction.  In talking with the surgeon here about it, he said he would never give a nissen to a kid less than a year because of this and the fact that all babies reflux and most will just grow out of it... We keep hearing this story time and time again that a nissen at day-5 is just crazy.   So now we need to do an Upper GI to confirm the hernia.  If she does have a hernia it could explain some of her vomiting and definitely discomfort but not necessarily it's cyclic nature.  We would then need to have the nissen redone.

 

As far as the muscle and skin biopsies go, we don't expect to get results for about 2 months... 

update

Anya is settled in now in her room at the hospital. Surgery went very well. We couldn't be happier with the whole surgical team. She seemed in a bit of pain for about a half an hour afterward but then in our walk from recovery to admittion she was very happy and gave a big happy smile. Unfortunately she slipped back in to her vomiting episode again and is actively puking and lethargic again. It was nice to she happy, conscious Anya for the brief moment to know she's okay. So now we just wait and watch over her. Thanks for your thoughts and prayers.

All done!

Surgery's all done. She did great and is doing fine. We will be spending the night just to be safe.

2/9 at pre-op

Unfortunately anya slipped into an episode around 5;30 this am. We are in preop right now waiting to see if they still want to go ahead with the surgery while she is vomiting.. Probably so but we'll see...

A little prayer- Anya

Hello All,

Just wanted to let you all know that Anya will be having a muscle and skin biopsy, and endoscopy on Monday Feb. 9 at 9:50. I am asking that you say a prayer for Anya. Pray that she handles anesthesia well, that the biopsy tells us important information and that Anya has a quick and painless recovery. We appreciate all the prayers and thoughts and know that it helps. You have all been so supportive on this journey that Anya has taken us on. We will update post-op.

Thank You
Katie and Pete

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Another sick day

Anya started puking Sunday night. She is just coming out of her cycle now, kinda a long cycle but we were able to stay out of the E.R. which is always good during the winter months. Next Monday she has her biopsy so we are hoping her cycle doesn't start until the biopsy is completed.

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Anya went snowshoing..

 
 

Anya is wearing snowpants.