Well Trystyn is doing well with feeding through the g-tube. I just wish we could get down to a shorter amount of time. Since I last posted she has started on Baclofen which is a drug that helps to loosen up her too tight muscles. This has been working great for her. She is now able to shake a rattle on her own, well for a little bit, and she has been able to sit on her own for a minute. This may not seem like much but we will take whatever she has to offer for us.

She has also been prescribred Clonipine (sp?) for sleeping and this too has allowed her to sleep all night long and in her own bed which is awesome for us. She just had a second Strabismus surgery on both her eyes and that went really well. Her eyes are no longer wondering. Trystyn also had a daytime EEG on Friday to see if she is having seizures again. As of lately I had been noticing some abscence seizures and we are supposed to get the results on Tuesday.

Mark just got back from working in Savannah for three weeks and it is nice to have him home again. Although he has an opportunity through his work to go to switzerland for 45 days which is great and he is definitly taking advantage of that. He was supposed to leave on the 8th of March but now we don't know when he will be leaving. I like that he will get to be at home for longer then originally planned inbetween trips.

Rain is doing well in school, well maybe I should wait to say that untill after parent teacher conferences next week. He did save up his money though and bought a DS. I was proud of him for being able to hang onto his money for that long.

We recently had gotten a new bath seat through First Steps, which by the look of it on the site it was going to be great. Trystyn would finally be able to play in the water. As with everything it turned out to be a death trap. Of course I tried to use the first time when it was just me and the kids at home and let me tell you it was a god awful experience. The funny thing is that Rain knew she had gotten a new bath seat and when he came in the bathroom to see her in it trystyn and I were both in the tub and the bath seat was not. Rain said "now what is going on in here". That was hilarious. We contacted Ruth our service coordinator throught First Steps so that she could send it back to the company they ordered it from. It turned out that when she went online their website no longer existed and ther phone number was not in working order. Turns out it was just some kind of a scam. Weird though because they sent the product. Luckily First Steps had paid with a credit card and they were able to get their money back through the credit card company. We have since ordered a new bath seat and we are just waiting for that to arrive. We are also in the process of getting approval through First Steps to get a walker for Trystyn. I really feel that as long as she has the correct upper body support, her legs are strong enough to be able to allow her to walk this way. I am really hoping that they approve this and we are able to get it before we get out of First Steps which is coming up quickly.

Trystyn has her testing for preschool on March 26th. This will show us what services she will qualify for. We are supposed to get the results on April 9th. Ugh that will be a sad day.

As for me, I am still just taking my life day by day. My dad has not been doing well and he is now in a nursing home building back up his strength after having pnemonia. This has been a really long process and hopefully he will be able to come home soon. Marks Grandma passed away on Thursday night and while it was her time to go she will be missed greatly by everyone that knew and loved her.

I will try my best to post more often in the future. I know that I have been a bad girl.

Carrie

It has been sometime since Trystyn's surgery and I would have to say that I am so glad that I did it.  Her acid reflux has disappeared and she is finally getting the nutrition that she needs through her feeding tube.  It has taken us some time to get her back up to 6 ounce feedings and these are still going in over a two hour time period.  But we will continue working on getting that down to a shorter time frame.  But all in all it is going well.

Otherwise life is just going along.  Definitely sometimes feel like my life is going "to hell in a hand basket".  It just seems like when things get going okay then something else falls apart.  Anyway, don't really want to get into it because I know my family reads this blog.  Sooooo  UGH.

Health wise everyone is doing great.  Trystyn has her transition meeting on November 9th, in just two short weeks.  This is where we will discuss her transition from First Steps into the School System.  We shall see how this progresses. 

Nothing really new to report - well there is but I will have to wait and talk to the shrink about that.

So needless to say I am thoroughly disgusted with our Durable Medical Equipment Coverage.  We came home from the hospital with the knowledge that BJC Home Health will  be providing the supplies that we need for Trystyn's feeding tube.  Also, I knew that this was billed through out Durable Medical Equipment coverage.  I am just fuming at how much this is now going to screw our daughter.  You see we have a limit of $5,000.00 coverage per year.  BJC is billing our insurance almost $2,000.00 a month for her supplies.  Now mind you this is not the amount that the insurance will pay as they will only pay what they deam is allotted.  But, let's just say they alot to pay half of that amount at $1,000.00 per month then in about 5 months we will be out of insurance coverage for her g-tube supplies and we will have to pay 100% out of pocket for the rest of the year.  I called BJC and found out that they will generously only charge us the amount that the insurance company will have to pay and that they have financial assistance.  Literally, I was crying on the phone, because as you can guess I am freeking out about this.  Because in reality after Trystyn is out of the First Steps Program and we are responsible for her actual equipment, i.e. wheelchair, then we will literally have no insurance coverage for this.  Because really how do you choose???  Uhhh get the wheelchair that she needs when she outgrows her Kid Kart or get the supplies that she needs to get the nutrition she will need to live...  I mean really obviously the people that write up these plans don't have kids like Trystyn or really just don't give a shit.

It is forever the families like mine that are continously getting screwed by the system.  If you go to apply for SSI for your child you will be told that you make to much money.  Did you know that they go by your gross income.  Um, seriously, that is not what we bring home to pay our bills.  You can forget about getting Medicaid if you don't qualify for SSI.  And slowly but surely I am finding out that any kind of agency that you think might be able to help you uses the same guidelines.  So really what are families like mine supposed to do??  We live paycheck to paycheck. 

I am really not asking for much.  I just want to be able to provide the stuff that my daughter needs.  Just like I provide my son what he needs.  It just so happens that their needs are totally different.  I also have found that as soon as you put the lable "Special Needs" on anything the cost for it triples.  Take onsesies for example, you can buy a 5 pack of Gerber onsesies for $9.00.  If you want to buy a onsesie for a special needs child, meaning larger size or with a g-tube opening, they are $40.00 a piece.  Seriously, I must be missing something.  I have since been on a quest to find larger size onesies and then I will figure out how to make a hole for the g-tube with a little flap that covers the hole, so Trystyn won't mess with the tube, all on my own and hopefully pay the $9.00 for a 5 pack.

I know that I am venting, but I am sure if you are in my situation you will understand.  Oh and by the way my insurance company won't pay for the formula.  UGHHHHHHH

Well, I guess that's it - Trystyn is doing good and so is Rain - I on the other hand am about to loose it.

Okay I am sorry, I meant to go back and update but I got lost in time.

Anyway, we got to go home on Tuesday we found out about 4:00 pm. In my packing and giving stuff to Mark to take home I also sent home my van keys. Luckily for me my cousin lives two houses down and she has a key to my house. She was able to get my key an drive it to me in the middle of rush hour traffic. Thank god. If not for her I really don't know.

Trystyn still does not tolerate a full 6 ounces in a one hour period so we went home on a schedule with instruction on how to reduce the time. It is long and tedious but at least she is not gagging. I am so far really impressed with the surgery she ha not choked once since having this done. So I am feeling like the fundoplication is obviously doing it's job and that is awesome. It does seem like she is eating all day though so I will be glad when we can get a whole feed into her over a one hour period. Other than that she is doing great. She is back to her old self and she has even started to just laugh out loud on her own. I find this hilarious.

Now it comes down to having to deal with my insurance because they are apparently billing her feeding tube supplies through our durable medical equipment which runs out when we hit the $5,000 limit and then they are saying that we have to pay for the supplies out of pocket which could run about $2,000 a month. Obviously, we just don't make that kind of money so Mark talked to HR at work and got the name of the lady at the insurance company that I have to call on Monday and hopefully she will get it straightened out so they will cover it. Otherwise I will beg and plead. We are in the talks of setting up a fund for Trystyn and having some sort of fund raiser to help cover the costs. But we still have to figure out the logistics.

For now all is good - well everyone is as healthy as they are gonna be - and that's something at least.

Well things were going so well yesterday and I was almost positive that the fact that she hadn't pooped was the biggest problem.  But she pooped a whole lot yesterday and she has already gone once today and she started gagging really bad about midway through the 180 ml or 6oz feeding this morning.  We stopped the feeding and she is now sleeping again.  I am waiting to talk to the doctor to see what the plan is now.  I am really wanting to go home, but I don't want to go if there is an issue.

I feel bad because Rain is really missing us and I am really missing him too.  He is just used to us being there.  But because Mark works the 2nd shift I have had to have family members keep him overnight and then Mark is getting up early and getting him so that he can take him to school.  I am pretty sure Rain is just sick to death of all this.

That's all for now, I will update again after I speak to the doctor.

Carrie

Who among us hasn't had one?  Well my daughter ends up getting stuck all over the place just so they can put one in.  It is frustrating for me and painful for her.  She has had her IV in since we got here on Thursday.  This morning when the Nurse came in to do Vitals and give her another feed she realized that my daughter had kicked out her IV.  See Trystyn's IV was in her foot and for those of you that know Trystyn know that she is constantly kicking.  She had slowed down her kicking considerably since the surgery, but it is starting to pick back up again.  I guess she just thought to herself, "I hate this thing in my foot, maybe if I kick enough I can get that sucker out."  Anyway, they were planning on leaving the IV in until she was leaving, but I am hopeful that they won't put it back in.  I mean really if she needs extra water just put it in her belly.  Well that is what I asked the Nurse to do anyway.  Because if they stick her again, god only knows how long it will take me to calm her down.

Well it is Sunday morning and we have been here since Thursday Morning.  Trystyn is just not tolerating it well when we increase the volume of her feeds.  The doctor came in and said that she looks good and sometimes it just takes longer for some kids to get used to getting fed through their belly.  She will stay at getting 3 ounces over a 2 hour period all day today.  Last night they tried to increase her to 4 ounces over a 2 hour period and she started gagging really bad again.  They had to stop the feed and now we are back down to the 3 ounces.  The doctor felt that there wasn't anything wrong as far as the surgery is concerned, but that it is just taking her longer to figure it out.

So far I am planning on being here until Monday at least, but the Doctor didn't say when he thought they would release her to go home.  Trystyn has a Neurology appointment on Tuesday at 1:00 pm.  I guess if she is still in the hospital I am going to just go down to the 2nd floor where her Neurologist is at and go to the appointment by myself and say that if she wants to see her she can just go up to the 10th Floor.  Really I know that sounds silly but I made the appointment at the beginning of the month and I really don't want to have to reschedule it.  I just made the appointment to talk to her about her sleeping issues.    The Melatonin that she put her on a couple of months back allows Trystyn to fall asleep, but it doesn't keep her asleep.  I am hoping that there is some kind of pill that she can give that isn't too harsh that will allow her to get a full nights sleep.  Because not only does Trystyn need it, but so do I.

I am sick of being in the hospital.  This place is the best place to be with your child, but ugh it gets so lonely with no one to talk to.  My husband brought up the laptop so at least I have something to play around on.  Plus, I feel like I could sleep for a week straight.  At least the food is decent here.  I miss Rain and I hate that I have to find other people to keep him since my husband works 2nd shift.  Plus, I know that Rain doesn't like that Trystyn and I are not around.  I told Rain all about Trystyn's surgery and yesterday when Mark and Rain came to see her he immediately asked about her feeding tube and that he wanted to see it.  I had told him that it was called a Mic-Key Button and he told me that he wanted to know where her button was at so he could push it.  I swear I was cracking up.  I always forget how literal kids are at that age.  So then I had to explain that he couldn't push the button that it was actually a button that you were supposed to push.  After I lifted up her shirt so he could see the feeding tube he looked at me and said "Who did this to her?"  I told him the doctors did and he leaned over to kiss her belly.  It was the cutest thing. 

Mark and Rain are on their way right now so I will post more later.

Carrie

I have put on some before and after pictures of Trystyn's belly so I hope the after pictures aren't to gross.

Trystyn has started the process of being fed through her g-tube. They are taking it slow to get her back up to a normal feeding schedule. She has been gagging a lot which worries me because stuff should not be coming back up.

The doctor just came in and I think they are going to slow the feeds. I really just feel like she hasn't had the time to get used to getting fed through her belly. It just seems weird because she can drink a 6 ounce bottle by mouth, before the surgery in a short period of time and not have any issues, so I don't know.

This will probably mean that she will be in the hospital longer. We were pretty much still thinking that we would break out of here on Sunday, but maybe it won't be untill Monday now that they are going to slow down her feeds. I'm really not sure at this point, but I do know that I am definetly not comfortable taking her home when she is having this gagging issue. I just hate it because I know that it is hurtin her when she does it because every time she starts to kinda cry after it happens.

Other then that issue she really is doing good. She doesn't have any fever and her incisions look good. Sleeping as always is an issue, this time for both of us. She is up so much at night that I am hardly getting any sleep, so naturally my brain is not functioning at a normal level and I'm feeling kind of zombie like.

This Nurse, well I'm guessing as to her being a nurse, came in and totally went through how to take care of the feeing tube and the process in feeding her by it. I actually feel really comfortable with that part. It is so easy and man oh man getting her medicines in her will be a breeze now. Ironically enough the only medicine that she is on now is Prevacid for her acid reflux, which the doctor says that within 6 months we will be able to ween her off te Prevacid and then she will be medicine free. I am so amazed by this because all of the kids that I know, and obviously every one is different, have a number of medications that they are on. So really we are just so lucky that Trystyn is a healthy child, well not counting her severe brain damage (hee hee).

Anyway, once again it is just taking everything one day at a time and making the best if each day as they come. Everytime I come to Children's Hospital I meet so many different people with children with so many different issues. Yesterday I met a woman whose daughter had just had brain surgery to split the two halves of her brain actually in half. She is doing this hoping that this will get her daughter's seizures under controll. Even with being on numerous seizure medications she was having up to 200 seizures a day. I am hoping that this will greatly improve her daughter's quality of life.

All of this reminds me that research on Seizures needs to somehow become as important in our society as research on Breast Cancer. Now please don't get me wrong I am not saying that one is more important then the other. My three older sister's mom died of breast cancer when she was 36. I just would like the powers that be realize that Seizures are a leading cause of death in our children. Some how there needs to be away to make Seizure control the new cause that everybody wants to be a part of.

Okay, I'm done with my harping. I will keep everyone updated on Trystyn's progress. Also, I just want to say that she not worn a bib since she came into the hospital and I am feeling really good about my decision to have the Nissen Fundoplication done.

Carrie

Trystyn is out of surgery an we are just waiting for her to wake up some more before we can see her. The doctor said that she did great and they were able to put the Mick key button in right off the bat as opposed to waiting until later. So that is great.

More later.
Carrie

Well Trystyn had an upper GI done last week to see how bad her Acid Reflux is and needless to say it was bad. My Pediatrician spoke with a Pediatric Surgeon at Childrens Hospital and we went to see him on Tuesday. The result is that on August 20th Trystyn will be having a Nissen Fundoaplication and a feeding tube will be put in at the same time. The Nissen is a procedure that takes the Fundo muscle and wraps it around the opening to the stomach to make the opening smaller. This will help with the acid reflux, to the point that in about six months we will be able to ween her off the acid reflux medicine that she is now taking and then she will be medicine free.

Apparently me pediatrician was more worried about her feeding issues then she let on to me because Trystyn will be having a feeding tube put in at the same time. This will allow her to be able to eat all of the things that she currently doesn't get with only drinking Pediasure. Trystyn will still be able to eat by mouth do she will still be working with an OT to help her with this. Trystyn will have to be in the hospital for three days because they don't just start feeding her normally right after the surgery and they will need to make sure that she is back up to her normal amount of feeds before sending her home.

I am really doing okay with this, but maybe I should wait and say that. I guess I already pretty much new that she was going to end up with a feeding tube because she is 2 years old and is just not figuring out the whole eating regular food by mouth thing. This will be her first major surgery. She had Strabismus surgery on her eyes but they didn't have to cut her open for that. So needless to say my stomach is in a knot about the surgery. Really I just hate the thought of having to spend three days in the hospital. Ugh it's like being back when she was in the PICU.

I have been explaining all of this to Rain, because he will have to stay with family while I am at the hospital. Plus the fact that he will have to stop tickling her belly and start being easier with he after she has the surgery. I told him that he can tickle all he wants untill she has the surgery next week and he is taking full advantage of that.

Rain starts Kindergarten tomorrow and he is really excited. Other than that it's just business as usuall.

Carrie