Search Brextin's Blog (type in Medek, Oxygen therapy (HBO), Wingbo, neck ring,G-tube, etc)

Wednesday, September 30, 2009

It has been heaven!

Ever since we switched back to our name brand seizure drug - Brextin has been doing wonderful. He hasn't thrown up since Saturday night - He is however waking up often in the middle of the night just crying - we think he may have gas so we open up his feeding tube and a gush of air comes out - however he continues to cry - since he can not talk - we have no idea as to why he is crying - we try to console him and then head back to bed - often he does finally fall asleep.

I am still waiting for Mayo to return my call - Brextin is suppose to have an EEG scheduled to check for seizure patterns and some blood tests - however it has been a week - since Mayo has returned my call - I did call today - but they of course said they would call me back once they could figure out appointment dates.

We have been struggling for feeding tubes - since we only get two provided to us threw Medicare insurance a month (since my work insurance won't cover them since they are not considered to be durable medical equipment) - but luckily I was able to find our needed feeding tubes via ebay - and will be receiving some shortly.

If you check the comments - someone stopped by Brextin's blog and shared with me a helpful site called Oley Foundation - I noticed there is a link for medical supply exchanges http://www.oley.org/equipexchange.html so I might follow up and inquire on the site - they also provide support groups with similar situations.

Saturday, September 26, 2009

Things are looking better :-)

It has been a couple of stressful days lately - Brextin started to throw up once we switched to a pill form of topamax - I was unaware that it was the generic form (until I picked up his generic sprinkles) - I then asked our neuro if we could switch back to the sprinkles to see if that was the reason why he was throwing up - When I picked them up at the pharmacy they told me they were the generic version and assured me that we should not see any difference from the name brand drug - (this was before I went home to find that the pills that were causing him to vomit were also generic) well that was the night from HEL* we were for certain we were going to end up in the ER - however we stayed strong and he pulled through it -

Be careful generic/name brand drugs are not always the same - every person is different.

I emailed our doctor again and asked if he could get us the name brand drug in sprinkle form and he doesn't believe that the drug is causing our problems - but would be willing to call it in - after a fight with our insurance company we were able to pick up the name brand drug topamax (over $800) a month - unbelievable!!! Well we have gone almost two days without any seizures and without throwing up - I sure hope we are able to stay on this track!

We have been doing our best at getting his sprinkles down his tube - we have found if we mix the sprinkles with his food - it doesn't clog up his feeding tube - unlike just the liquids.

I am awaiting a phone call from Mayo - we are trying to get a 24 to 48 hour EEG scheduled and blood work (I have been told when you are on topamax you should get your blood tested - regularly) well he has been on the drug for almost 2 years and has only got his blood work done in the very beginning - hmmm doesn't seem right.

Thursday, September 24, 2009

This was the rash that appeared.



This is the rash that occured while he was having the seizure.

Scary night!!

We have been having a ton of scary moments lately - and last night was the worst - Andy took Brayden to church I stayed home - fed Brextin, bathed him and placed him down to sleep around 8:00 - I actually went and laid down myself - I have been exhausted lately - as I was laying down - I heard a scream - and I mean a scream - then it registered it was Brextin - earlier in the night we had began to try the generic form of Topamax (since we think maybe the pill form of topamax might be upsetting his stomach) I went to pick him up - and he stopped screaming and then about one minute he did it again - I then took him to my room - in hopes he would lay down with me as I watched some TV - however we began to see more seizure activity - activity that wasn't stopping - so we decided it was time for distat - a drug that you inject through the butt -- in hopes it would stop his behavior - he became very limp - and we also noticed a rash around his neck, upper legs, and arms - his eyes were open - and his adams apple kept twitching -



We called the doctors on call at Mayo and she said he is probably sleepy due to the distat and that he will probably sleep for the rest of the night and to follow up with our local ped doctors in the morning - so we placed him in his bed and decided to go to bed - now it was around 10:00 - just as I laid down I heard him cough - sure enough he threw up - we went and cleaned up his sheets and bathed him again and went back to sleep - now it was around 10:30 - and sure enough he threw up again - so we repeated our earlier steps -



He then finally went to sleep - and it is now 6:00 in the morning and he appears to be resting nicely - I am going to try to post some video of his seizures last night so his neuro doctor can take a look at it -



Ohh how I pray that these terrible days will end and give our family some peace with happy days!!

video
video
video

Sunday, September 20, 2009

Brextin's current photo's of his G-tube still not improving











We are still fighting granulation around his feeding tube - these photos are being posted in hopes of nurse Rachael having a chance to look at them - we use silver nitrate every other day and then place gauze around it - two times a day. We also place a cream around the button in hopes it will help against liquid discharge. Each time we pick him up - he tends to flinch - so I know it is of some discomfort.


video

Brextin all smiles!!!

videoBrextin was full of smiles at dinner time - so I thought I would include this video - he can be a very happy baby -

Brex excited while eating!

videoThis is a video of us feeding Brextin with a device my dad designed - it has been very helpful. Here he is very excited - plus I show his new foot braces - they are cute!!

Saturday, September 19, 2009

ShopKo experience (Brextin throws up in public Yuck!)

Brextin just got some new braces http://www.surestep.net/ (with dinosaurs) on them - and the company suggested that Brextin should wear shoes that have a rounded toe - so I went to Shopko to see if I could find a pair - and they did - the shoes even have Velcro - and they have a camo print - which I am sure big brother will like -

However - as I wondered throughout the store - he had a seizure while sitting in the cart - I quickly moved the cart to an area that did not have carpet on it - just in case - he decided to throw up - and sure enough he did - mind you at this point I had nothing with me to wipe it up - so I then asked the shoe department associate if she could call a Shopko associate over to help me and I explained to her that my son just had a seizure and he just threw up - at this point - two customers came up and asked if they could do anything - I gratefully asked if they had any Kleenex in their purses so I could clean up my son as well as my hand - and they both offered - however still no associate - however the shoe department associate came back and gave us a roll of paper towels - which was an asset - then after it was all cleaned up a Shopko associate came up and we mentioned that she should have the area cleaned - but not to be frightened and reassured her that my son did not have the flu or a sickness and that he only threw up because of the seizure. During this whole moment - I began to cry - probably because I was embarrassed - and one of the customers offered me a hug - which was comforting.

I still can not believe that he went over 5 months without throwing up and now he is back at it - it just nerve wrenching!!! OOh how I pray that this vomiting stops!!

Friday, September 18, 2009

This is a video of Brextin throwing up - right after he had his seizure

We have gone a LONG time of without having him throw up - and now we are back to it - it just has us in a whirl wind - I prayed so hard to keep him from throwing up and we were blessed for 5 months and now we are experiencing it all over again - this video is very graphical and I mean graphical - it is of him throwing up - I have posted this so those that take care of him - are aware what he could do at any given moment - this is part of the reason why it is so tough to find RESPITE care.
video

This video is of Brextin in mid-seizure while being fed via feeding tube

The purpose of me posting this is so our neurologist can view it - I was feeding him and all of a sudden he had a seizure - this one appeared to be different - he actually did some blinks in-between - and his throat or Adam's apple looked as if it was twitching - I even thought he stopped breathing afterwards he threw up - I will post that video as well -

Please understand I know these videos can be tough to watch - but this blog allows us to communicate with doctors that are 3 hours away - and it has been a very helpful -
video

Wednesday, September 9, 2009

Family time!!

We got to spend a little R&R at my parents cabin. Boy did we need that!


Brextin's Mic-key button and granulation








Brextin got his button installed about 3 weeks ago and we have been battling granulation - it is a type of build up that forms around his button (his feeding tube) - we have to use silver nitrate to burn it off - it doesn't hurt as long as we only touch the infected areas -
The very first time we saw the build up - I was concerned that it was infected so we went to our local urgent care last Saturday but that doctor refused to do anything so we called our local doctor - and she came in on a Saturday and showed us how to use the silver nitrate and to use it every other day - I am beginning to think I should receive an honoring degree as a nurse and a therapist after all that we have gone through with our son.
Please forgive me - as these pictures are disgusting - but the main reason why I keep this blog is to help others out - and when this first occurred I could not find a picture on the Internet to compare it to - so I have decided to post Brextin's photos.

We have been very busy!


We have had good and bad days lately - school has started again for me - and so I am not able to update the blog as I was during the summer - but I will do my best to update it - when there are any improvements or set backs.

Here is a photo of Brextin while he is having one of his seizures. We were up at my parent's cabin. I will try to post the video as well - however the video was taken in the middle - I wish I was able to get the full seizure on tape - but we just never know when they will strike - this one occurred while he was napping on his belly - I noticed his hands getting stiff - and rolled him over and saw that he was having a seizure. There is nothing one can do - you just have to let him have it - I like to reassure him and myself that everything will be ok.

video