Tyler's button

Tyler has a button (Gtube, feeding tube whatever you chose to call it), that we have been trailing. The button we have been useing is called "ELF" Enteral Leak-free Feeding. Up until I contacted Mr B about this product we had been useing a Mic-Key. We had lots of issues with that tube, Grandulation, leaking, feeding the bed (yes that is fun), etc. In July of 2007 we started useing the ELF button and what a change it made. No leaking, no feeding the bed, no grandulation! We have been useing this button since. We once had to go back to a Mic-Key because of not having a back up at that time, and let me tell you was I glad and so ready to change him back to the ELF when it showed up. Saddly while in the hospital with Tyler last week I got an email from Mr. B, telling us that he was leaving the company and as of now we would have to use up what supplies we had and go back to another button. At this point the company doesn't have anyone to take over this project. We are truely sadden by this and will use every last extension to its fullest! We do wish Mr. B and his family the best and hope this change is everything for you and your family.

We go back to see GI in Nov, at that time I will be asking for a script for a new button, I really don't want to go back to the Mic-Key as it seems to cause so many problems. Although I do have a few back up ELF's I know the day will come when I will need to use another companies button. So better to be prepeared then not to be.

Back from Doctors

All I can say right now is I LOVE our ped! She has been wonderful and to be honest almost always on the same page or line of thinking as we are!

So she got the discharge papers from APH and wanted an understanding of what happened. She never got anything from the ER (gota love it!). She knew Tyler was on her appts for Friday then didn't see him so assumed he got better, till she got the paperwork from APH. Anyway I explained what happened, why we chose to take him and what happened in the ER with his blood sugar.

Ya know when you know something isn't right and you should be worried but not sure why, well thats how I have felt the past few days. I knew what happened wasn't right but how "worried" should we really be. Dr T (our ped) said to me that in the ER there is certain protocol that the nurses follow, certain things that they can just "do" without a Dr's ok. She said that when a person comes into the ER with a blood sugar below 45 a nurse is to just bolus straight sugar, don't pass go just do. She said that it bothers her that Tyler was that low that a nurse could just take charge and go. She also said that "normally" your body goes into over drive and produces to much, so she would have thought that his levels should have been a little high, if not then a little low but not THAT low. She listened to what I had to say. I said that we are concerned that maybe he runs on the low side of normal and IF that is is it because of the tube feedings. If he is on the low side what do we need to do when he gets sick. I am not one to say well lets wait and see if it happens again, I am just not that type of person. Yes it could have just been a freak thing that happened. But in the end it did happen, he got sick and it happened. What about next time? Should we have done something different, could we have done something different?

In the end she felt that since his blood sugar was that low, and was hard to stabilize, that it was best to have the Endo Dr look at him and go from there. Since we have a wonderful Endo Dr for Brycen we will just see him for Tyler to. Tyler's appt is Oct 2nd in the morning. I am glad that our ped feels the same as we do, feels that its something to look into and yes maybe there is nothing there and it was just a freak thing but we'd all rather know that that is the case then to "wait and see".

On a side note Tyler was lucky this time with his weight, he lost just about 1lb (not a full lb). He is right at 30lbs @ 4yrs 4months. Dr T said that she'll take that its not as bad as it could have been and I totally agree!

What could be worse............

It all started Wed, the runny, mucusy stools Tyler had. Then on Thur morning Tyler woke with a temp of 100.6, gave some Motrin and started pedialite. Within in an hour Tyler started vomiting, got love it! So we backed off his Tube feeding, well ok we were only doing pedialite, but we stopped it for a good 45minutes or so. Restated his tube feeding and lowered the rate to 40cc's, or just over an ounce for those of you who are math challenged. Again within 30minutes he was vomiting again. Once again stopped the feeding for about an hour, restarted at 30cc's per hour (or an ounce). He seemed to be ok so we hung out and waited. Sure enough about noon he vomited again. I took him off his feeding again let his tummy rest for a good hour and restarted at 20cc's. This time he seemed as though he was doing ok and tolerating this rate. I got Mr. B from school and we came home. On the way home he started wrenching so I gave him time off and restarted at 15cc's. Then just before 4pm we went to pick up Rea from middle school. He wrenched in the car a lot vomited a little. Again backed off the tube feeding to give him rest, this was at 4:20pm. He had fallen asleep in the car and stayed asleep when I carried him inside. I put him on the sofa on his side. I called for an appt with our ped on Friday. Little did I know what was about to come.

Sadly Tyler started vomiting while sleeping. Let me say if you have never had a child do this its the most scary thing in the world! Tyler started choking (he was now on his back). I got to him and rolled him on his side and he started coughing. Now that was over Tyler had a very glassy eye look, wouldn't respond to me and had a very distance look. I have seen that once before in Tyler when he had Rotovirus at 9months. I called Chris to come home and get him and take him to the ER. I knew something was wrong with him just really didn't know "what".

I had to pick up Michaela from Volleyball practice. Drove quickly back home to meet Chris. He took Tyler and left. He agreed Tyler looked like crap, not words I really wanted to hear but it was nice to know it wasn't just me who thought this. I took Michaela over to Rea's house, Sandra was so nice and more then willing to keep both of the kids (M and B). I can't thank them enough for the things they did over the next few days! Needless to say I switched cars with my mom so she could get the kids from Sandra. Michaela spent the night at Rea's house (I know a school night!) and Brad took the girls to and from school on Friday.

Back to the ER stuff, Tyler and Chris got there about 6:30pm. Tyler was taken back within an hour (maybe a little longer but before 8pm we were back in a room). By this time Tyler had NOTHING since 4:20pm! He looked better but still didn't look good. He was talking and smiling at everyone. They did a urine sample and he was slightly dehydrated so we restarted his tube feeding at 20cc's an hour. Shortly after that they chose to start an IV since hydrating him @ 20cc's an hour is going to take FOREVER. Since they would have access they did some blood work. About an hour latter they came in to check his blood sugar, this is where the fun begins. Since Tyler was sleeping we hoped it wouldn't disturbed him to much. His blood sugar level was 39, all I know is that this is low very low. So at midnight they gave him straight sugar via IV, it shot his level to over 200 (this was at 1am). At 2am it was 124 and at 3am it was 69. At this point we don't know why it won't stay up. At 4:15am the nurse came in and I asked what the plan was, she said they were waiting on the hospital to get a room and they were admitting him. At this point I left to go home and try and sleep. Remember this is now 10hours after getting to the ER. Chris said they started a sugar water drip and his levels went up some but then came back down to 69. Tyler remained on the drip till we were discharged. They restared feedings with his formula and he tolerated it well. We upped his feeding every hour by 5cc's till he hit 30cc's then we went to 40 then 50cc's. They discharged him around 9pm on Friday night.

We still have no real answers as to what happened, why his blood sugars dropped and wouldn't stay up. They think he either had rotovirus (had a nasty stool when we got home and it had that smell....ugh!), or he had a bad case of the flu. Really things like this just hit him hard. He has a hard time tolerating his feedings anyway so throw a bug in there and its all out of whack! Usually I can keep him home and hydrated, and we still see the ped just to make sure. But for whatever reason this time was different.

Today Tyler seems much better! He is playing, talking and laughing what more could a mom ask for?! Tyler will go see Dr T on Tue morning. I am scared to know how much weight we have lost, a 2lb loss for Tyler can take 6+months for him to gain back. It all goes back to the 1 step forward 2 steps back, sucks but thats the way life is! So that was our event full week last week, lets pray and hope that this week is a lot less EVENT FULL!!!!