Hi Abbyfans,
We're baaaaaackk!!!!! So let's get down to business.
Chapter 1 - "The Seizure"
2 Sunday's ago, on July 25th, Kelly woke me up at 4AM and told me to get into Abby's room. She was having another seizure and was burning up. The entire left side of her body was shaking more than it ever has in the past. Abby has simple partial seizures that occur only when she spikes a fever which is known as a febrile seizure. A simple partial seizure means that only part of her body, her entire left side, is affected. She doesn't lose consciousness either. She can still talk to us but usually doesn't make much sense. Still though it's heart breaking to hear her little voice as she is trying to make sense of what's going on. (click here for more info on febrile seizures)
So anyway, I ran downstairs to get the Diastat, which we have on hand to stop Abby's seizures. It's basically Valium and is supposed to calm her down immediately. It's a rectal medicine and Abby was yelling "no! no! no!" as we were giving it to her which of course just crushes us. But Kelly is AMAZING in these situations and was able to give it to her. Then she just held her while I said a quick prayer. Kelly and I were pretty scared at this point. She doesn't usually have more than 1 seizure every 6 months or so, but she JUST had one about 3 weeks prior to this one. So of course our heads are spinning as to what this means. Are her seizures going to become consistently more frequent? Will they get progressively worse? Do we need to change her medication? Do we need to increase her current medication? But increasing her medication makes her clumsy and unstable and listless....What will we do if they put her on something that does that to her?! She'll fall everywhere and hurt herself. All these questions were racing through our heads and the Not Knowing was and is the absolute worst.
We're baaaaaackk!!!!! So let's get down to business.
Chapter 1 - "The Seizure"
2 Sunday's ago, on July 25th, Kelly woke me up at 4AM and told me to get into Abby's room. She was having another seizure and was burning up. The entire left side of her body was shaking more than it ever has in the past. Abby has simple partial seizures that occur only when she spikes a fever which is known as a febrile seizure. A simple partial seizure means that only part of her body, her entire left side, is affected. She doesn't lose consciousness either. She can still talk to us but usually doesn't make much sense. Still though it's heart breaking to hear her little voice as she is trying to make sense of what's going on. (click here for more info on febrile seizures)
So anyway, I ran downstairs to get the Diastat, which we have on hand to stop Abby's seizures. It's basically Valium and is supposed to calm her down immediately. It's a rectal medicine and Abby was yelling "no! no! no!" as we were giving it to her which of course just crushes us. But Kelly is AMAZING in these situations and was able to give it to her. Then she just held her while I said a quick prayer. Kelly and I were pretty scared at this point. She doesn't usually have more than 1 seizure every 6 months or so, but she JUST had one about 3 weeks prior to this one. So of course our heads are spinning as to what this means. Are her seizures going to become consistently more frequent? Will they get progressively worse? Do we need to change her medication? Do we need to increase her current medication? But increasing her medication makes her clumsy and unstable and listless....What will we do if they put her on something that does that to her?! She'll fall everywhere and hurt herself. All these questions were racing through our heads and the Not Knowing was and is the absolute worst.
I should also mention that these seizures don't start out with her entire left side shaking. They start small. Typically her left hand will start shaking and then her arm. Next her leg will start shaking a little bit, then a bit more and more and more etc. It will continue to get worse until we stop it. And since we've been there at the beginning of some of her seizures, we know that this process actually takes a while. So we figure that Abby must have been seizing for about an hour before we got to her and gave her the Diastat and that of course breaks our hearts too.
Protocol is to call 911 after giving her the medicine which we did. It took Abby 15 minutes for her seizure to stop which is actually a long time. The Diastat usually works a lot quicker. So again, here come all the questions racing through our heads as to what this could possibly mean. On the way to the ER, Abby also started having another one. What?! Another one?!!! Just 20 minutes or so after the previous one stopped?! Oh man, what does THAT mean?! Kelly, who was strapped to the gurney herself and holding Abby in her arms, told me that once this happened, the ambulance lights and sirens turned on and away they went. Fortunately, we live close to our hospital and they immediately gave her some more meds to stop that seizure. Since they couldn't seem to get Abby's fever under control the docs decided to keep us there for the rest of Sunday, Sunday night and Monday morning.
It turns out that Abby had some nasty virus. It seems that Abby only has seizures when she spikes a fever, which is a good thing. If she starts to have seizures other than when she spikes a fever, we will begin to really worry. At least now, we can associate her seizures with fevers and feel pretty safe that she won't have a seizure unless she gets sick and spikes a fever. Anyway, Abby was discharged on Monday morning but still was not 100%. At this point, Kelly and I were very, very nervous. If she didn't get healthy in a week, there would be a lot of problems.
Protocol is to call 911 after giving her the medicine which we did. It took Abby 15 minutes for her seizure to stop which is actually a long time. The Diastat usually works a lot quicker. So again, here come all the questions racing through our heads as to what this could possibly mean. On the way to the ER, Abby also started having another one. What?! Another one?!!! Just 20 minutes or so after the previous one stopped?! Oh man, what does THAT mean?! Kelly, who was strapped to the gurney herself and holding Abby in her arms, told me that once this happened, the ambulance lights and sirens turned on and away they went. Fortunately, we live close to our hospital and they immediately gave her some more meds to stop that seizure. Since they couldn't seem to get Abby's fever under control the docs decided to keep us there for the rest of Sunday, Sunday night and Monday morning.
It turns out that Abby had some nasty virus. It seems that Abby only has seizures when she spikes a fever, which is a good thing. If she starts to have seizures other than when she spikes a fever, we will begin to really worry. At least now, we can associate her seizures with fevers and feel pretty safe that she won't have a seizure unless she gets sick and spikes a fever. Anyway, Abby was discharged on Monday morning but still was not 100%. At this point, Kelly and I were very, very nervous. If she didn't get healthy in a week, there would be a lot of problems.
"Chapter 2 - Abby and her Feeding Tube, aka the G Tube"
As you all know, Abby is fed through her feeding tube, or G Tube. About 85% to 90% of her daily nutrition is administered this way and not by mouth. Abby just doesn't like to swallow food. She likes the taste of food and will put food in her mouth, but she doesn't like to swallow it...instead she just spits it back out. Over her 4 short years, Abby has had many issues with her stomach and eating. At the beginning, some of you may remember that Abby had terrible acid reflux and couldn't keep any of the formula down that we gave her through her G Tube. The formula would go into her tummy and then Abby would retch and gag and eventually throw it all up. This of course caused a lot of pain and extreme discomfort in Abby's throat. The only way to keep this from happening would be if we fed her at a ridiculously slow rate which of course wouldn't work long term. Then we found out that she didn't have an LES (lower esophageal sphincter) and so the docs performed a fundoplication surgery. I don't want to get to into all of this again, so feel free to read through my previous posts for more details on this whole ordeal. (or click here for more info)
Anywho, what I'm getting at is that Abby is still relying on the G Tube to get her daily nutrition intake. This means that Kelly feeds Abby 3 to 4 times each day through her tube. At night we hook her up to a pump that feeds her slowly all night long. It's not the most convenient situation to say the least. We were hoping that Abby would eventually learn to eat, but this hasn't happened. Like I said, she enjoys the taste of food and is willing to put anything in her mouth. But from there, she just spits it back out.
Fortunately there is very intense program at CHOC that Abby was on the waiting list for to help with this situation. The program is designed specifically for kids like Abby who are G Tube Dependent and need to learn how to eat on their own. This program takes 1 patient each month and consist's of a team of about 14 people! This team of people includes everyone from the person that deals with our insurance company, to a nutritionist, a psychologist, feeding therapists, her GI doctors etc... Oh! And it's an intense IN PATIENT PROGRAM FOR 3 WEEKS! Abby would have to be in the hospital FOR 3 WEEKS! Why you ask? Because they are not going to feed Abby through her G Tube and need to keep a close eye on her. And they need her focused. She will not be able to see her brothers for a week. So what about Kelly? Well, that's the kicker. Kelly has to be there with her too FOR THE ENTIRE TIME! Yikes! But we were on board. We were willing to do whatever it took to get Abby off of the G Tube. The idea of not having to deal with that thing each day is just awesome.
So...about 3 months ago, we got the green light for the program! Abby was going in on Monday, August 2nd. Yeah!!! As the time approached Kelly we were getting more and more anxious but also more excited. Abby was going to learn to eat! Abby was going to learn to eat! No more G Tube! No more G Tube! The mere thought of that was almost too good to be true.
Then, a week before she was supposed to go in, the fever and the seizure happened. "Oh No!" we thought. There is no way they will start Abby on this program if she is sick! That means we will have to wait for AT LEAST ANOTHER YEAR before we get her in again. So you can see why we were freaking out so much about this past fever. Everything was finally in place to get Abby into this program and the idea that she would have to sit it out for another year was heartbreaking.
I believe firmly in the power of prayer though. Our family, our friends from church and work and everywhere else said prayers for Abby and it worked. She broke her fever and got well enough to start the program this past Monday. As nerve racking as this was, we had all the faith in the world that Abby would be better in time for the program.
Chapter 3 - Feeding Therapy - Week #1
Abby is doing pretty good so far. She is on a very strict schedule each day and is learning how to take small bites and swallow them before she goes onto the next bite. A Therapist will sit with her for an entire hour and KEEP her in her seat to eat her meal. Keeping Abby in any seat for an hour is tough, let alone getting her to eat at the same time. So far though, she's been doing well.
Here's the schedule:
8AM - Breakfast with a therapist
10AM - Snack in the room with mommy - no therapist
12 Noon - Lunch with a therapist
3 PM - Snack with a therapist
6PM - Dinner in the room with mommy - no therapist
All of these sessions are an hour long! The therapists have said that many kids start off doing pretty well but experience some burn out towards the end of the week. The routine starts to get old and they get a little more restless. Let's hope that Abby has the stamina to keep it up!
I haven't mentioned this part, but Abby gets to wear normal clothes and we were allowed to decorate her hospital room too. In fact, they encouraged us to bring her bedding from home, pictures and all kinds of things, which of course we did. We even brought her little purple tricycle which she rides around the floor. In true Abby Fashion, she has already made a name for herself. Check it the pics.
Mommy and Abby on her bed - Note the cute bedding AND the pink rug!
Abby in her new chair next her NEW backpack for the "Vacation"
Here she is taking a "lap" around the floor on her tricycle.
Abby has a wagon all to herself for the entire 3 weeks. She uses it to bring her food down to the therapy sessions. Kids usually like to sit in the wagon with their food. Not Abby! She'll pull it all by herself thank you very much!
"Outta the way! I'm comin' in!"
"Outta the way! I'm comin' in!"
What a little cuttie, huh?!
Phew! That was a long one! Thanks for hanging in there though and allowing me to get you all up to speed. I will be updating this blog at least every other day while Abby is in the hospital to keep everyone up to speed on her progress. Say some prayers for her that this program will be a success!
We love you guys,
- Abby's Management
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