Sunday, August 31, 2008

Abby is home!

Happy Labor Day everyone. I am extremely happy to say that we are FINALLY home with Abby. We got home Sunday afternoon to make our stay a total of 5 days! It was a good thing we were there on Sunday though because we got to speak with a neurologist that that we heard was great. Nobody can pronounce his last name, so everyone just calls him Dr. E. We had a lot of questions for Dr. E about Abby, especially regarding her seizure medication. Did we absolutely have to keep her on the anti seizure medication she had been getting during the past few days? Our goal was to keep Abby off any medication if possible. I don't think I've spoken too much about medication and Abby, but given her history with her brain bleeds, her shunt, her feeding tube and all of that, it's INCREDIBLE that she is not on any medication thus far. Kelly and I know in our hearts that her little fighting spirit is the driving force behind this, which is why we were reluctant to just put her on this anti seizure medication full time. The stuff was making her dizzy, and sleepy and just not herself. There is no question that it would be difficult for her fighting spirit to shine through and do what it needs to do if she were to continue this medication.

So what's the big deal you ask? Why not just take her off the seizure meds and go home? After all, it is just the first seizure, right? Unfortunately it ain't that easy friends. It's like this: Abby had a seizure at the same time she spiked a huge fever. We found out that the fever came from a Urinary Tract Infection (UTI). Fevers can cause seizures, but because of Abby's neurological history, she is prone to having seizures so the docs were not ready to say that the seizure only happened because of the fever and call it a day. Okay, fine. I'm on board with that, but why now? She's 2 years and 4 months old. Why didn't she have a seizure before? Apparently, kiddos with neuro issues like Abby can start having seizures at any time. Some will go seizure free for years and then start having them for any number of reasons. Whatever triggers the seizures is different for each kiddo. It's very likely that Abbys fever did trigger the seizure, but there's no guarantee that something else won't trigger another seizure in the future. This is why one neurologist (we saw two) said it would be a good idea to put Abby on the meds now. But Kelly and I were adamant about giving Abby every opportunity to be medication free. Look, we're not ignorant to the fact that she is prone to seizures and that she may in fact need meds down the road. But we would be kicking ourselves if we didn't at least give Abby a chance.

Thankfully, Dr. E agreed with us! He sat with us for an entire hour, answered all of our questions and was on board to let us take her off the meds. Woohoo! No meds for Abby! The only catch was that he did want to send us home with emergency anti seizure medication that is a suppository. He made it very clear that as parents, we must have good nerves, keep our cool and be able to give this medication to Abby while she is seizing. Well, this just happens to be Kelly's specialty so we're good there.

Oh, by the way...we got the results back from the EEG and were told that there was some abnormal activity but it wasn't seizure activity. Huh? Abnormal activity but it wasn't seizure activity? What does that mean? I don't think I really got an answer on that. What we did learn though was that it's better to get one or two more EEG's done on Abby in order to really use this information. For example, if we got an EEG done in a couple of months during a time when there was no seizure stuff going on, but we still found the same "abnormal activity" we would then know that this is just Abby's normal activity. If we don't find the same "abnormal activity" then we'll know that what we saw this past weekend was in fact seizure related activity. Gggggrrreeeaaaaat.... You all saw the pics of Abby hooked up to those wires. Did she look like she was having fun to you? And we get to do that again? Nice. All I know is that Abby's been dancing to her own tune since she got here, so as far as I'm concerned, Abnormal is just short for Abby Normal.

So let's see, what else? Oh yeah. The medication she was on to fight the UTI actually gave her diarrhea, which is bad news for the Abby Girl. You guys remember what happened the last time she got bad diarrhea? That's right, since she doesn't drink very much and can't tolerate very much fluid at one time through her GJ Tube, she got super dehydrated and we spent some time in the hospital because of it. Thankfully we were still able to get her home and we seem to be getting that situation under control.

Well. I think that's it. This concludes yet another incredible fight with Abby in the red corner and The Odds in the blue corner. After a respectable effort by her opponent, Abby has once again beaten The Odds. Nice work Little Miss Magic. Now get some sleep. You got another big fight coming up and you need your rest.

Man I love her.

Thursday, August 28, 2008

More on Abby...

Okay,
So I realized I made an error in my previous entry. I said that Abby's docs thought that maybe Abby was having a "feveral seizure" when in fact it's called a "febrile seizure." Ooops. What can I say? I was super tired. All of you that are in the medical field must have gotten a good laugh from that one. Anyway, we got more info from the docs on febrile seizures and it doesn't look like that is what Abby had. A febrile seizure can only last up to 15 minutes and Abby's lasted for 2 and a half hours. Also, it seems that febrile seizures only happens to children without any neuro issues. For more info on febrile seizures, click here. We learned instead that Abby had a Simple Partial Seizure. Take a look at that link as it perfectly describes what happened to Abby.

In an effort to figure out why Abby had a seizure and how prone she is to having one again, she got an EEG. An EEG records brain wave activity. This will give the docs information that will help them figure out more about Abby and how much seizures will be a part of her life. It is very important that the patient stay still during the EEG (which took about 20 minutes) and luckily, Abby was exhausted so after the electrodes were placed on Abby's head, she fell asleep. But the moments leading up to that were no fun. Take a look at the pics below.





Abby is NOT happy about the paste they were putting on her head to keep the electrodes on...



She was even more unhappy about the wrap they put on her to keep the electrodes in place....



She wasn't THAT upset though. A few moments later, our little Abbers was conked out and had a great nap.

As far as the fundo surgery is concerned, it's definitely on hold for now. Once Abby starts feeling better and we get some answers from the EEG and the seizure question, we hope to get Abby home.

I am home with Eddie right now, but I just spoke with Kelly and Abby is feeling a lot better. She had another nap which was about 3 hours and even went for a little walk around the halls. It was a bit much she said though, and now Abby is a little cranky and needs to go to sleep again.

Eddie by the way also spiked a fever last night around 2AM. The poor little guy had about a 101 degree temp. He's doing much better tonight thankfully but still not 100%. I think he got what Abby got. Tonight he ran into Abby's room a couple of times and looked around as if to see if Abby and mommy were in there. He misses them and I do too, so let's all pray and hope that Abby can come home tomorrow or Saturday.

I will let you all know the results of that EEG and what we can expect with regards to seizures as soon as I know something.

Love you all.

- Abby's Management

Wednesday, August 27, 2008

Curve Ball!

Abby woke up at 9AM today and the entire left side of her body was flexed and twitching and even her head was turned to the left. She couldn't focus her eyes on Kelly and she was even grabbing her left arm with her right hand in an effort to stop it from shaking. Abby was having a seizure. What? A Seizure? But aren't seizures quick? Abby's twitching was continuous and wouldn't stop. Kelly called me in tears to let me know what was going on, grabbed Eddie, still in his pj's, and headed to Abby's pediatrician. Yep - Abby was indeed having a seizure and Kelly was asked to bring Abby straight to the ER. They gave her Ativan which really helped. The left side of her body finally relaxed, and the twitching stopped. Needless to say, Abby was exhausted from the 2 and half hour long seizure. We were admitted to CHOC and were asked to stay the night.
So....WHY IS ABBY HAVING SEIZURES???? We know that it is common for Cerebral Palsy kids to have seizures, and we were happy that Abby was fortunate enough to escape these. So why now? Well, there are a couple of possibilities. The first thought that Kelly and I had was of course the worst possible scenario, which is that her shunt could be clogged and/or her CSF, Cerebral Spinal Fluid could be infected. Thankfully, after reviewing the CAT Scan that was done on Abby in the ER, the docs concluded that the shunt was not infected. In fact, Abby's neurologist said it the best CAT Scan he's seen on Abby yet. And when he took a sample of the CSF, it wasn't cloudy (which indicates infection) but instead it was nice and clear. We'll know for sure if the CSF is infected tomorrow (Thursday), but Abby's doc is saying there is a 99% chance that it is NOT infected.

This is all good news but we still don't know why Abby was seizing. Her neurologist said that it's possible that Abby was having a feveral seizure, which is a seizure caused because Abby is getting really sick. He's not sure on that though and will have more answers (hopefully) for us as time goes on. Sure enough though, Abby spiked a fever after we got to the ER and has been vomiting and dry heaving all day long. So tonight the goal is to pump Abby full of broad scope antibiotics in case the CSF is infected and we also need to curb all of her nausea and vomiting.

And of course, the million dollar question is...what does this mean for the surgery on Friday? It is most likely going to be postponed. Abby just cannot be sick during the surgery and since she's so sick right now, it's not likely she will get healthy enough for a surgery in two days.

So that's the curve ball. But with all the prayers and faith that Team Abby generates, I'm sure she'll get through it. She's our little Rockstar and she always pulls through. Abby's momma is also a rockstar. I showed up to the ER and didn't get a chance to see Abby twitching and seizing but that's got to be a scary sight for any parent to go through. And thank Goodness for Kelly's parents. Cindy and Cliff, you guys rock too. They have been by Kelly's side to help with Abby and Eddie since the appointment with the pediatrician this morning. Thanks guys! We love you!

Alright then my friends, this is your cue. You guys know what to do next.


Ryan

Monday, August 25, 2008

This Friday is Surgery Day

Hey Team,

The last couple of weeks have been great. Abby is doing fantastic, Eddie is growing like a weed, and we have been going to the beach and the pool as much as possible. Abby is doing really well with her eating. She is quite the snacker these days and is often asking to try bites of whatever it is we're eating. Eddie...well... he is not so much a snacker as he is a vacume. The kid will try anything, but make no mistake. He'll spit it right out if he's not into it. Abby is very much into music. I'm not sure if I've mentioned this before but it's been going on for a while. When she hears a song she likes, she throws her right hand up and shakes it around in the air. The most recent addition to her dance moves is this bounce she does where she bends her knees and everything! And going back to what we all know the docs said we could expect from our little Abby, we all know that this is just one more little miracle! Need less to say I was in tears and so was Kelly...and my sister...and pretty much everyone else who saw her do this.

This Friday is the surgery for the fundo. For those of you who have forgotten what a fundo is, why Abby needs it and all the issues that go along with this surgery, scroll down to my previous blog entry and read on. (Man, I really got after it last time huh?) The surgery will be at approximately 10AM on Friday. I will do an update from my blackberry as soon as it's over to let you all know how it went.

Thanks....yet again....Abby Fans, for all of your continued love and support for our little girl. Thanks to those people gathering around a computer at work to check in on her and enjoy the latest pics, and to our old friends whom we haven't spoken to in years but still take the time to keep on on Abbers, and then of course to the people who have just come across this blog somehow and got bit by the Abby Bug like the rest of us and have stayed on ever since. However you came upon this story, thanks for staying with it. It means the world to us and we love you for it.


And now...take a look at Eddie giving Abby not one, not two, but multiple kisses!

Sunday, August 03, 2008

A BIG Surgery is Coming Up

As always, a lot has been going on here at Camp Abby. But before I jump into all of that, let me first say that Abby and Eddie are both walking! They are both at the beginning stages and they look like a couple of drunken sailors at sea. It is a very funny sight. Eddie has done a lot for Abby. Just by doing what he's doing, Abby is doing her best not to be outdone by little brother and is working very hard to keep in front of him. As he is starting to walk more, so is she. And as he is getting better at climbing up on things, or throwing a ball, Abby is right there, practicing the same thing. It is such an amazing thing to watch her do all of these things! The girl that wasn't supposed to do hardly ANYTHING, let alone walk and play!!!! Wooohooo!!!! Anyway, now that Eddie is bigger than Abby (Eddie is 22 lbs, Abby is still at 20 lbs) he is starting to throw his weight around. We have this little push car toy that they love and when Eddie wants it, well he just cruises right over, pushes Abby off and takes over. Abby is not a happy camper when this happens and it becomes your normal sibling rivalry spat over a toy. Oddly enough, this spat is music to our ears! We do have a pretty big surgery coming up though so let me get to that.

About 3 weeks ago, we all went to a park on a Saturday afternoon to enjoy Abby's friend Tavi's 3rd birthday party. It was a great party and everything seemed fine. But on our way home, Abby started throwing up, and I mean throwing up. She was dry heaving like we have never heard or seen before. As a result of all this vomiting, she was extremely thirsty and would drink a lot of water, but it would all come up again. It didn't take us too long before we decided to call the doctor and he told us to go to the ER before she gets too dehydrated. Luckily we got her there early enough and our stay was only 7 hours, which was all the time the docs needed to get an IV in her and fill her up with some fluids to rehydrate her.
Seriously though, all these ER visits, the constant throwing up in the middle of the night, the sudden dry heaving spells like the one I just mentioned, and the pain Abby is always in has got to end! And it needs to end soon. Thankfully there has been a plan in place to help Abby with all of her vomiting, and this little ER visit just shifted that plan into high gear.

Let me break it down it into 3 parts. What's wrong? What's the plan to fix it? How long is the recovery?

What's Wrong?
I think I mentioned before that we know why Abby is constantly throwing up, but for you newbies, let me explain it again. It's like this: You and I have a sphincter at the bottom of our esophagus called the Lower Esophagial Sphincter or LES. This LES opens when food goes down our esophagus and into our stomach and then closes up. Thank Goodness it closes up, because if it didn't, we would throw everything that we ate right back up. Well, that's Abby's problem. She does not have an LES at all. This is why every time we tried to feed her large volumes of food she would throw up. Sure...she can snack here and there and have some cheese puffs, or crackers or whatever, but only in small bites. She can't even come close to eating the amount she needs to eat to give her enough nutrition throughout the day. And by this point, her poor esophagus is really scared from all of the acidic vomit that comes up. It's an absolute miracle that she still likes to eat food. She has a little bit of "oral aversion" which is basically a child's fear or unwillingness to put anything in his or her mouth. If anybody should have oral aversion, it's Abby, but she doesn't.

What's the plan to fix it?
When somebody doesn't have an LES, the plan is to do a fundoplication, commonly called a fundo. This is where the docs will take a part of Abby's stomach and wrap it around her esophagus and make their own LES. Take a look at the following link. It acually has a pretty good diagram and description of the fundoplication procedure. Fundo

How long is the recovery?
Here's the crazy part. Abby will be in the hospital anywhere from 5 days to two weeks. And we won't know just how long until AFTER the surgery because there are so many unkowns about how this surgery will go. First, Abby has a VP Shunt . The shunt (for those of you that didn't click on the link) is there to drain the Cerbral Spinal Fluid from Abby's brain area. It's a catheter that goes into her head and a small tube is attached to it that goes down into her abdomen to drain out. You and I have a little "drain" at the bottom of our skull that allows this fluid to drain down to our spine. Abby's "drain" was clogged at birth when she had her Grade IV brain hemorrhage. This link will explain the hemorrhage more. Anywho, when we do a surgery that is anywhere close to the shunt tube, there is always a concern regarding an infection getting inside the shunt tube, because that means the infection would travel to Abby's head and we would have an entirely new set of problems (huge problems) on our hands.
The other issue is that Abby has a GJ Tube. (Am I getting nuts with these links or what?!) There is a possibility that the doc won't be able to do what he needs to do without taking the GJ Tube out and then re inserting it somewhere else. This would mean that the surgery would no longer be done laparoscopically. Instead Abby would be cut open and have a new GJ Tube placement PLUS a Fundo to recover from. This is the scenario we are REALLY hope doesn't happen. We do not want to have to remove the GJ Tube.
Assuming the GJ Tube is fine, the recovery is about 3 weeks or so before she'll be somewhat used to the fundo. Oh...something I forgot to mention about this fantabulous fundo is that Abby will never be able to throw up again. So if she gets food poisoning or something that requires her to vomit, she won't be able to. It will have to pass through her system the other way. This is no bueno AT ALL but we don't have a choice.

So the prayers will REALLY need to get kicked into high gear and I will certainly keep you all posted. The surgery date is the 29th of August. Put it on your calendar!


We sure love you all and appreciate everyone hanging in there with us. This next hurdle is a big one, so go get some rest. Anybody out there that doesn't pray very much, start practicing now. We're going to need all you got at the end of August. We really really really need this Fundo surgery to go well.


As for now, just enjoy the pics! Thanks again Abby Fans.


Yeahhhh!!! A Beach Day!



Eddie loves running around the wet sand



So does Abby...




Our first time at the Orange County Fair! Abby and Eddie had a blast poking their heads through these things!



Eddie and Momma with the little chicks



Abby squirmed out of my arms to make her way back to the cage with the little chicks in it...



Here we are at the petting zoo. At first they were both a bit apprehensive, but not for long...!




Eddie just went for it and then Abby quickly followed. From here on out, they were totally into petting the animals.



More Petting Zoo...



Abby just couldn't get enough



Check out Abby on her 1st horsey ride! Parents weren't allowed to go into the arena. We were sure Abby would be scared....nope! She was having a great time cruising around on it. She got strapped in tight and off she went. All by herself!



More of Abby on the horsey



Eddie and Daddy on the Bull!



Abby and Momma on Abby's 1st roller coaster ride



Here they are after the ride was over. Abby love it! She wanted more more more!



Abby with her friends!




Here's Eddie chillin' at the pool on the 4th with Daddy's hat on



Family Photo at Dusk on the 4th of July - Check out the sunset



Eddie and Momma watching 4th of July Fireworks... Eddie was NOT very happy about all the noise they made. Eventually he got used to it though.



Abby & Eddie at Eddie's 1st Birthday Party



Eddie couldn't be contained! He was having a GREAT day!



Here is Eddie taking a swing at his very first pinata!

 
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