Abby came home early!

I have no idea how she did it team, but Kelly managed to convince the doc to let Abby come home....even though she was only at 35 cc's an hour. Remember, the goal was 50 cc's an hour! Even the nurse came in and said, "I have NO idea how you just pulled that off!" I love it. Leave it up to Kelly to get something like that done. Apparently Kelly listed all the reasons why they should go home, and she also listed why they should stay. But after each reason she brought up for staying, she quickly gave an answer as to how she would handle that at home. Hilarious. My wifeee, the Pediatric Doctor Negotiator.

Anywho, I'm beat so I'll keep this one short. Abby was at 35 cc's when we left today. She ate a good amount by mouth this afternoon and we put her to bed at 30 cc's. We figured, why push it? Good thing too, because even at 30 cc's she woke up and was very uncomfortable so we vented her (opened up her G Tube so any excess air would come out of her tummy and ease that bloated feeling). Even though we're home, we're still a bit nervous over here. The next couple of months will really be interesting. If all goes well, we will be able to start giving her a "normal" amount of formula. I just can't imagine setting Abby's G Tube pump to a "normal" rate each night. In fact, I have no idea how much volume would be considered normal because I've never had to deal with that. But it's possible and I'm very much looking forward to that and of course to watching our little Abbers get chunky.

Good night friends.

Pops

Slow and Steady

So what do you get when you take a little girl who hasn't had a thing to eat or drink for 5 days and then give her an entire sugar filled juice box? You get a party girl! That's right, Abby kept mommy up until 5AM this morning! She may have dozed off for an hour between 11PM and 5AM but that's it. Kelly was nice enough to let me sleep and toughed it out with Abby alone. And since we have a roommate there at CHOC, Kelly didn't want to just let Abby cry it out, so she entertained Abby the entire night.

As far as Abby goes and her progress, she seems to be moving forward slow and steady. We kept her on 10 cc's of formula today and then bumped her to 15 cc's. We are going to increase her feeding by 5 cc's every 6 hours until we get to 50. She also took a little bit of yogurt today and couple sips of a milk shake too. Basically, we're looking to go home no earlier than Saturday.

Abby's spirits are better however she is still very needy. It's extremely difficult to keep her entertained ALL DAY in that little crib / bed thing she is in. Abby is not one to just sit around. Her feeding therapist Karin stopped in today and she and Kelly took Abby on a walk around the 5th floor. This was a nice break for Abby, but it's a difficult thing to do since Karin and Kelly had to walk Abby with an IV pole and tubes all over the place.

Say some prayers for momma as well as Abby. I love my girls so much and they both continue to amaze me. This hospital stay is dragging on and it's time to get the family back home. Kelly's stamina for this stuff is off the charts. Eddie and I miss our girls very much tonight and are looking forward to seeing them tomorrow.

Man I hope Abby does okay with those feeding increases tonight!

Here is a shot of Abby right after she woke up. Love the hair. The net on her left hand is to protect the IV. The tube attached to skinny cup thing in front of her is actually her G Tube and that cup is what we were using to catch any fluid that was coming out of her stomach a couple of days ago.

Here's momma and Abby on the Super comfy fold out bed that we get to sleep on.

Abby is not one for snuggling too much, unless she is really tired or sick. In this picture, she's both.

Momma tried to go to sleep but since Abby wasn't tired she would poke momma's nose, or her eyes or her cheek. Needless to say, momma isn't sleeping much these days.

Here are a couple as Abby started to feel better. She loves to put my hat on like this and see the world through mesh.

I have no idea what she's grabbing for here. Probably my camera...no dice sister.

This is the face she makes when I say, "Abby, show me your teeth!" Again...love the hair.

Hi Everyone,


So...as I thought, Abby reminded us that she was on her own schedule. Yesterday, we started her giving her 10 cc's of pedialyte through her G Tube for 2 hours and then we bumped her up to 20 cc's. It was at 20 cc's that she started gagging, refluxing and feeling nauseated. Eventually we stopped feeding her all together. It was very discouraging, but we held out for what today would bring.

Thankfully, Abby had a better day today. The docs decided to start feeding 10 cc's of formula per hour through her G Tube. As I mentioned above, yesterday we started out with pedialyte but this time they went with the formula which has more nutrients and calories, so that's good. But it's still on 10 cc's an hour. That's nothing. Just to give you an idea of how little that is, 30 cc's equals 1 ounce. You know those super small juice boxes? Not the regular size ones, the really really small ones? Well, those are 125 cc's. That means that it would take Abby 12 and a half hours to finish that tiny juice box at the rate shes going. But! She also drank an ENTIRE juice box today! In fact, after that juice box, we opened another one an hour or so later and she drank half of that one. It was awesome. She has NEVER done that before.

As I type this she is asleep and hooked up to her pump. We're still only at 10 cc's of formula, but that's alright. Last night she wasn't on a pump at all, so this is an improvement. Tomorrow we hope we can increase her pump volume to 20 cc's an hour (and maybe more?). Remember, we need to be at 50 cc's before we can come home.

We love you guys. Let's pray for 50 cc's!!!

Having a Good Morning

Alright Abby Addicts,

Things are definitely looking better. Last night, some friends of mine from church came over to say a prayer and give Abby a blessing. It was a fantastic blessing and it certainly worked. Abby slept through the night with the exception of a 3 AM gagging and retching episode. That lasted about an hour and then she fell asleep until around 7AM or so.
Right now she is not on any Morphine or Toradol AND she's napping! However, we have a lot to tackle in the next week. To go home, Abby needs to tolerate 50 cc's of formula an hour, and this is the plan to get her there:
Right now she is getting 10 cc's of pedialyte an hour through her G Tube. If she does well with that, we'll bump her up to 20 cc's of pedialyte for the following 2 hours. Assuming that's no problem, we will then give her 20 cc's of the Pepatmen Junior Formula. It's what we've been giving her at home and this ain't no "over the counter" kind of stuff people. It's the Mercedes Benz of formulas. By that I mean that it's hard to make and is especially for kiddos that have very sensitive stomachs and have bad reflux issues like Abby.
Anyway, as long as she does okay on the Peptamen for 24 hours, we'll slowly increase her dose from there. And by slowly, we're talking like 10 to 20 cc's a day. Not per hour...per day, which means we'll be at Camp CHOC til Friday or Saturday. And this is if everything goes as planned.

Thank you all for checking in. I know that all of the prayers and incredible support from you guys have been working. Abby has always taken her sweet time to get better, and yet, the difference between today and yesterday is unbelievable. I got crazy love over here for all the Abby Fans out there. If there was ever a story to testify to the power of faith and prayer, it's hers.She's is our little Miracle!

Speaking of miracles, for those of you that don't take the 55 South too much between Mcfadden and MacArthur, there's a billboard where CHOC has an add that reads, "Chances are, there's CHOC miracle in the car next to you." I love that sign. As I drove by it the other day, and tears welled up as I thought about Abby and the road she's been on(Okay fine. They didn't well up. They poured). I get this way everytime I reflect on those days, weeks, and months and especially when I think about the support we and Abby have had. I have absolutely no idea how we could be going through this journey without you guys.
And so continue the prayer requests. Pray that Abby's little tummy accepts the fluids today and especially the formula. Abby has never been a fan of following the rules, but let's hope this time she does.

-Abby's Daddy

hello all....it's momma this time (daddy is pooped),

Well today was a really rough day. Abby has continued to throw up her saliva and has started to retch and gag a lot more. (retching is like dry heaving) Today she was only throwing up every hour or so which is an improvement from yesterday. She is still in a lot of pain, which is SO HARD to see. (She's still on morhpine along with another painkiller and anti inflammatory that they have added called Toradol.) That's our baby and we are completely helpless. It's awful.

She is just absolutely exhausted since she hasn't gotten more than an hour and a half stint of sleep at one time since she had surgery Friday morning. Nor has she had anything to eat or drink. We did not start fluids today like we had hoped. The docs said that as long as she continues to vomit, they can not start any fluids. And if we don't get some food in her soon, they will have to do another surgery to put in a central line. Kind of like an IV, but for intravenous feeding. We hope and pray it doesn't come to that.

We are also concerned about all of the retching and gagging. If that continues it could tear and rip apart all of the stitches from the surgery, making all of this for nothing. Then another surgery would have to be done and the percentage of a successful second surgery is much less and continues to get less and less with each revision.

And on top of all of that, her IV went bad already, so tonight they had to take it out and place a whole new one. Never fun.

I wish that I had better news to report. We are praying hard that tomorrow shows more promise. Our Abbygirl has gone through SOOOO much already. We are ready for her to catch that break that she is SOOO due for.

Thanks for all of the love, support and prayers. You have no idea what it means to us. It is what helps us be able to endure it all. We love you

Some progress but still have a long way....

Good Morning Abby Fans,

After my post yesterday, things didn't seem to get much better. It was obvious that Abby's saliva wasn't getting into her stomach because of the inflamation from the surgery, because she was still throwing it all up every 30 minutes. And with the throw up came the use of her stomach muscles which caused A LOT of pain and so came the cry's for help. Man was that rough. Abby has a pretty high tolerance for pain, and doesn't cry very often when she falls or anything. So when those big brown eyes stare into you with that look of sincere pain and distress and the tears falling down, you know that our Abstar is in some serious pain. Thankfully, the morphine gave her some relief and allowed her to sleep a bit. We could get her to sleep about 45 minutes to an hour before the saliva would build up and she would have to throw it up again.

Abby still has her G Tube in and that is actually helping the situation. A lot of pain is associated with bloating and air getting trapped in the stomach during the recovery of a fundo surgery, and since Abby has her G Tube, we can literally open up her tummy and let the air out. In fact, right now the G Tube is constantly open and attached to a little clear cup. This allows us to see if any of that saliva is actually getting down to her tummy. Unfortunately, that cup was dry all day. No saliva was passing through....until around 5PM or so. And then some more came, and then some more! Woohoo! The inflamation was going down. Abby's path from her throat to her tummy was opening up. Nice! Can we go home now? Um....lemme think about that one for a sec....NO. Seriously, did you really think an Abby story would be that easy? Of course there's more to come. Before we go home, we need Abby to start taking fluids by mouth first and then be able to tolerate food a day or two after that. Hopefully we'll start the fluids today. We also need to make sure she's not in too much pain. And most importantly, we need to make sure Abby's pain is under control. Lately she has been dry heaving which is even MORE painful than before. The docs told us to plan on being her around 4 to 5 days. The 5 day mark is Tuesday. I don't remember the last time Abby has gone home within the time frame that the docs say during the pre-op consultation. If she does that...it will be a first.

Say a prayer that Abby will be able to take some fluids by mouth today.

Have a great Sunday everyone.

Abby is still not doing well....

It's 6:30 right now on Saturday Morning. Kelly and I have had a rough night. Abby has continued to throw up her saliva. She's done it well over 20 times. She hates to do it too and tries so hard not to, but eventually it all builds up in her little mouth and she's forced to spit it out. It's not really even a spit, but at this point, her mouth is so full that she just opens it, gags and it just pours out. Spitting it out would actually be an option I suppose, but don't forget that Abby doesn't know how to spit because she hasn't learned how to fully use the muscles in her mouth. So when all of this saliva accumulates, she has no idea how to handle it, other than to gag and retch.

What gives? We got this fundo so that nothing would come back up, but now our problem is that nothing is getting into her stomach at all. Huh? Of course we asked our nurse this question who in turn paged the on call doc. We were told that the passage way from her esophagus to her stomach may very well be blocked right now because of the swelling from the surgery. Well isn't that just swell. So I'm thinking, when we got the whole "what to expect in recovery" low down from the docs, this would have been a good tip to let us in on....don't ya think? I mean....throw us a stinkin' bone here. That was a good answer actually and much better than what was running through our heads. Since nobody threw us the forementioned bone, Kelly and I were sitting here thinking the worst....which was that the stitches from the fundo surgery were torn or something.

(For the record, my sarcasm is to be taken lightly. We have nothing but love and respect for the docs and nurses and the care we've gotten here)

Anyway, the swelling should go down after a day or two. In the meantime, she is getting Morphine every three hours to help her rest, but she is still very very uncomfortable and in pain.

So keep the prayers going friends. We're praying for the swelling to go down and a quick recovery. We hate, absolutely hate seeing her in pain and we just want her back home as soon as possible.

-Abby's Management

As of 5:30PM on Friday....

Well, we're up in the recovery room here at CHOC and Abby is in a lot of pain and she is very nauseous. She is always nauseated from the anaesthesia after her surgeries and usually collects a lot of saliva and phlem in her tummy and then throws it up. Since she got this fundo, we were thinking she wouldn't throw up anymore, but Abby has already thrown up a mouthful of phlem and saliva 8 times. We're told that this is normal, even though the fundo is supposed to keep things down, but it is still a worry. Our concern is all the stories we've heard about kiddos retching so much that they tear the stitches inside that are keeping the Fundo together. I don't think this is going to happen, but what do I know about Fundo's? And since I'm not Mr. Fundo Expert, everything is going to worry us. She is on a lot of Morphine right now which is keeping her pretty much zonked out, and she's also getting some Zofran too for her nausea.

This recovery is going to be No Bueno.

The surgery went well!

Woohoo!

The docs didn't have to move Abby's G Tube! The Fundo is now in place and as I type this we're waiting for the nurse to come get us so we can see Abby. We should only be in the hospital about 5 days or so...as opposed to being here for 2 weeks!
We did learn that Abby did have a Hiatal Hernia....whatever that is. To quote her surgeon, "it was a big mess in there, but I cleaned it all up." There was a lot of scare tissue and adhesions that he took care of. For the record, I have no clue what I just said. I'm just repeating what the surgeon said. Who cares though. The good news is that Abby is still batting a thousand and continues to be our little Rockstar.

With all that said though, let's keep the prayers going during her recovery. A fundo is no joke and it takes a while to recover. How long Abby is here depends on how well she handles food in her tummy.

Ooohhhh! The nurse is here!

More later

Well, today is the day everyone.

You know, Abby has been doing great with her communication lately. She now says "yeah" and she can tell what kitty says, a cow says and some others. She also knows to point to her boo boo's and if something is hurting her. And ever since she has learned this, we find her constantly pointing to her throat. The reflux she goes through every day as a result of not having that sphyncter must be annoying and painful. In the picture below, Abby was in her high chair pointing to her throat to tell me it was hurting....

I've been very much "on the fence" about this surgery as far as if she really needs it, but watching her grab at her neck a lot and point to it as much as she does has sealed the deal. Now we just need to pray that the docs won't need to move her G Tube today while performing the fundo surgery. As I have mentioned, if that happens, our hospital recovery time (and the discomfort and pain for Abby) will pretty much double.

Other than this crazy surgery today, Abby has been doing absolutely fantastic. That actually makes it harder to bring her in today. It's one thing if she's already sick and feeling crummy but to bring her in when she's happy and cute is rough. She has no idea that she's about to go through a very difficult surgery today and it breaks my heart. But this is Abby we're talking about here, and I know she can deal.

Check out these fun of Eddie below....That little guy is  getting into EVERYTHING THESE DAYS!

I love you all and keep Abby in those prayers today.

An Abby Fan Needs Abby Power!

Hi All,

One of Abby's BIGGEST fans, Carmen, has ran into a bit of trouble and needs your prayers. At only 34 years old our sweet Carmecita found out she had a rare blood disease, Takausu, which, among other things constricts the arteries to the heart. So...Carmen needed a double bypass heart surgery. Unfortunately, after the surgery, Carmen had a stroke and is now in the ICU at Kaiser. Her husband Albert (Bert) and Carmen's family are all hanging in there, but I thought it would be cool for some fellow Abby Fans to log onto Carmen's blog to leave some kind words for her and for Bert. Bert is holding on to these comments with both hands, just like we did during those first days, weeks and months with the Abbers. It was always cool to see comments from people we didn't know as well so even if you don't know Carmen, post away. I know Bert will love it.

www.carmenpluma.blogspot.com


PS - The surgery for Abby is still on for this Friday and I'll keep you all posted on that. Pray like mad that all the docs have to do is the Fundo and that they don't have to mess with her G Tube.

I love you guys.

Abby's Fundo surgery is back on

Hey gang,

I just wanted to let you all know that Abby's Fundo surgery has been re scheduled for, Friday, the 19th of this month.

I have some great pics of Abby trying on mommy's hat while she was in the hospital which I will post later today or tomorrow.

Take care,

Ryan