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

Saturday, October 31, 2009

Halloween - what a Holiday!







Brextin was drawn to his brother's shiny knight costume. He kept reaching for his outfit.

These are the days I get a little down - I see my oldest son gleam ear to ear with the excitement of going door to door to get treats - yet I look at my youngest - and understand he may never get to enjoy that feeling - and I will never be able to see him understand the concept of the holiday. As I hear the door bell ring I am forced to open the door to look at little ones who are similar in age - holding their bucket - trying to say "trick or treat" yet my little guy is unable to say anything - not even ma ma. OOh how I hate these feelings - Yet I glance at him and thank the Lord for allowing us to be blessed with our little lion. He is adorable and how I pray that he will be able to understand certain things throughout his life and that we will be able to enjoy those memories. Please continue to say prayers for his health and for his development -

Friday, October 30, 2009

Brextin is doing awesome by eating by mouth!!

We have been struggling with him eating by mouth ever since he got his G-tube - but lately he has been doing AWESOME!!! The toughest meal is breakfast - for whatever reason he doesn't open his mouth as easily at breakfast as he does at lunch and dinner.

My mom is currently in the hospital recovering from a total knee replacement - while visiting her today - Brextin munched on a sugar cookie - he almost ate the whole cookie by mouth - he was even chewing - - I light up when I see him eating things orally -

Please keep my mom in your prayers as she recovers from her knee surgery and continue to pray for Brextin as we continue to see improvements.

I am hoping to post pictures of Brextin in his lion custom tomorrow -

I am in the process of getting a wingbo swing http://www.wingbousa.com/index.htm for our little guy - I luckily have found a used one via Craig's list - it does not come with the long ropes - but I could get the ropes from the company later on for $35.00. I am just waiting to find out how much shipping will cost. I think it will make a wonderful Christmas gift for him. I am just really glad that I was able to find one much cheaper than the asking price for a new one.

Sunday, October 25, 2009

Respite care - might be on the way!

Today I met with a company called ResCare Home Care - http://www.rescarehomecare.com/services_personalcare.cfm the company provides personal care workers to help families with special needs kids or aging adults - it is paid by the state - We won't know if we are approved until around 2 months -

We get to interview possible personal care workers - the vary in ages - from college students to mature adults - I mentioned to today's nurse - I am interested in someone who will be comfortable feeding him via g-tube, one who will not panic if or when he has a seizure or throws up - and one who would be willing to interact with him - and not just sit and watch TV.

I also mentioned that before he or she begins to care for my son that they read over his blog to help better understand his condition - so there are no surprises once they begin.

They could even work a night shift if he ever becomes sick with a cold and won't sleep - I find it tough to sleep when I hear him talking, coughing or crying - and it is tough to function the next day at work when I am unable to get an uninterrupted amount of sleep.

I am hoping I will be able to spend more time with my oldest son - especially in the Winter months - I can take him sledding or to the movies, etc.

Thursday, October 22, 2009

Brextin is back to himself!!!

videoBrextin is back to himself!!! He even ate a jar of baby food by mouth tonight - it was amazing!!! He even ate one at daycare the other day as well - way to go Brexie!!!

Saturday, October 17, 2009

We are breaking out of here!!

We are getting out of here!! They do agree he is still a very very sick child - however he will probably feel better in his own bed and being surrounded by family. They suggest he stays home for 7 days and anyone that has been around him within the past couple of days should get treated with tamaflu right away - (if they were pregnant, over 65 or under the age of two), luckily no one that I can recall has been around him that fit those categories.

We will continue with the tamaflu medicine, and amoxicillin to help fight off the influenza A and to fight his pneumonia.

He is still sleeping - I tried to stand him today - to help stretch his muscles - he placed weight on his legs for about a minute and then he went into a sitting position. He is still very week and sleepy.

The doctors have told us if he is still sleepy and non-responsive in one week - we are advised to follow up with our local ped doctor - but they figure he will be in this sleep mode for at least 7 more days. This type of flu just wears you out they say.

Frusterated - with hosptials

It is now Saturday - and there are no new changes. I just talked to a resident doctor and I am on the impression we will be released today - since we know how to better care for our child than the nurses here - and we would be more comfortable doing it in our own home rather than 2 1/2 hours away.

We still do everything while here, we change diapers, we feed him, we bath him (I have to ask for the supplies), we even give him meds - the only thing they do is monitor his heart, and breathing by looking at a monitor. Last night the IV alarm went off twice - and so I hit the nurse's button - and they never came - so I had to walk down to the nurses station to inform them. On top of it we have to eat their food in their cafe' and each meal keeps adding up. I would rather do this at home being surrounded by family and friends.

I am frustrated because he takes topamax for seizures and it is documented in his chart that he needs the name brand version - and three times they have given me the generic version (luckily I have brought my own drugs and caught it before we gave them to him) - if you scroll down on this blog - you will find out what happens if he takes the generic drug - he breaks out in hives and has an instant seizure (that lasts for awhile which causes us to give him another meds in his butt) - and I would prefer not to add any more complications to his medical history today. (but three times - really - I even pointed to the nurse that it reads "name brand drug only" yet inside the drug package were generic drugs)

Plus he takes two breathing inhalers when he has a cough and breathing issues - and at Sacred Heart they provided two applications and they have not done one application here - which surprises me - since you can tell breathing has been an issue -

They have said that he looks really good for having this type of flu - often kids need to have oxygen added - and he is able to breath on his own. This is a very positive. There are about 8 other kids currently here with the same type of flu.

Thank you for all of the prayers - he is still very very sleepy -and we are anxious for him to back to himself.

Friday, October 16, 2009

Brextin is postive for H1N1 (please pray)

We went to the ER last night in our home town and he had a temp of 105 by forehead - but only 103.9 rectal 30 minutes later - and then we drove him ourselves to Rochester Mayo - where he was admitted - we finally got into our room on the intensive care floor around 4:30 in the morning - it has been a very long day!!

He has been taking flu medicines since Wednesday just to be safe - they were not interested in testing him because there is a 30% of false/negative test results. However once we got here to Rochester they tested him and the tests were positive for H1N1- but the good news is that he is breathing on his own and his heart beat is where it should be - he does have a terrible cough and is sleeping a ton.

Andy has been sick as well as Brayden - but all are feeling better - I never got sick - which is strange since I cuddle Brextin so much - they said that parents often build up a positive immune system - I have notified my school in hopes they will disinfect my room - just as a safety precaution.

So many sad things go through your mind when you hear that your child has the H1N1 sickness - but in all honesty - the doctors are making me feel comfortable and reassuring me that he will pull through this and will recover. He just needs his sleep (he has been sleeping non-stop since Sunday)

Please pray that he will continue to fight and pull through. He sure has traveled many roads and this one is just a detour not a dead end.

Sunday, October 11, 2009

Lymph nodes?

Each Friday Brextin receives a massage at a wonderful place here in town (in hopes it will help with body recognition) (they use him as a training patient so we save big time on the costs!!!)- and the therapist mentioned she felt some bumps - so I called our local nurse and she thought the bumps were probably lymph nodes (they are the size of a pencil eraser and they move as you touch them)- and we shouldn't be to concerned - but to continue to watch them - in case they were to grow in size.

I plan on asking the doctors while we are at Rochester Mayo this Friday and next Monday.

Has anyone else experienced lymph nodes?

Both kids are sick YUCK!!

Yesterday Bray was sick - with a cough and a fever (104 degrees) - at night he was feeling better until 1:00 am came around - then he felt as if he was going to throw up (nothing happened) - then came Brextin - he started to cough and throw up around 6:00 am - Brextin's fever was 102 but is coming down - he was only throwing up foam - luckily he has the G-tube so we have been able to pump in food and fluids into him - he has yet to throw up any food - which is puzzling - he is now resting in my arms as I am typing this - Brayden has been sleeping most of the day as well -

The positive side is that both boys were sick on the weekend so no work time was lost - we will have to wait and see tomorrow to see if we will need to stay home with the boys.

Brextin is scheduled for an EEG this Friday at Mayo - it will be a 24 hour study - Andy will be doing this visit - and then I will go to his appointment on Monday - this will be the day that we will get the results of his EEG study.

I have been reading up on some postings at the following website . . . http://www.momsincommon.org/ it is a site in which parents are able to connect with their stories - I posted the water neck ring and the merry muscles device - but I see someone posted a device called the WINGBO the device looks as if it would be helpful for Brextin http://www.wingbousa.com/index.htm but the price is just to high for us right now - I have looked at Craigslist - but I was unable to find any for sale.

He is starting to outgrow his bouncer - so I have been looking for another device that would allow him to bounce - that was when I ran across the radio flyer horse with a safety saddle. I searched and searched for the best deal and came across the toy for around $100. - I was waiting for it to be a Christmas gift - but I couldn't wait. So I bought one and put it together -
http://www.epinions.com/reviews/Radio_Flyer_Classic_Rock_and_Bounce_Pony_with_Sound He is slowly rocks on it - I will try to post a video later on when he is feeling better. I have to put two pillows under his feet so he is able to push off on something - unless his feet hang in the air and he just sits on it.

I was able to visit our local United Cerebral Palsy branch on Friday and am borrowing a one step communication device - we have one at home and now he will be able to have one at daycare as well - it is a switch that allows you to record your voice on it and when he pushes the button - he is able to hear the voice - we try to record his own sounds - he likes to hear himself every chance he can. http://www.swaaac.com/Files/shortcutsheets/One_step_communicator20.pdf

Please say a prayer that both of our boys are feeling better in no time and that we don't catch their bug.

Sunday, October 4, 2009

Look at Brextin sitting on knees!!







Here are some photos of Brextin sitting on his knees - he has been getting better and better at it (we do have to place him in this position) - he does have the reflux to catch himself if he falls forward - at times - not always - but at times - so often he is able to get into the four point position - see video.

video

Saturday, October 3, 2009

I finally got supplies - but from Ebay not from insurance!!

In order to feed Brextin I need to use a tube that attaches to his feeding tube - our insurance company - Group Health - will not cover the tubes - the reason - because the tubes are not durable medical equipment - since they can only last for about one month and then will need to be tossed - due to risk of bacteria forming into the feeding tube - I just shake my head -

Since insurance won't cover them - I have to seek them from some place else - luckily the state of WI will buy two a month for Brextin - one tube goes to daycare while the other one stays home.

The tubes are constructed out of plastic and have been known to break on us - so we needed a back up - so I went to ebay - and I am forever grateful to the seller who sold us her extra tubes. I looked into buying them from a medical suppler on-line and I could get 5 tubes for $75 - but thanks to ebay - I got a ton more at a cheaper price. It is sad to know that I have to turn to ebay or craigslist to buy medical supplies for our son - it is just really sad!!

We are scheduled for another EEG - Mayo never called they just sent us his agenda - he are scheduled for doctor appointments on the 16th, 17th and the 19th. We are not interested in missing three days of work so we are hoping that we can move the two doctor appointments that are scheduled on the 16th to be bumped to the 19th - currently I am not having any luck - I think Mayo thinks that all of their patients live near them - however we are 2 1/2 hours away.

He is scheduled to see the ear doctor to check on his ear tubes on the 16th and also a follow up appointment for his g-tube (we still have granulation - but it is getting better) and his 24 hour EEG is on the 17th. We are hoping these doctors can see him while he is getting his EEG - or after we see his neuro doctor with the results of his EEG.

I was very anxious for his EEG a couple of weeks ago since his seizures were non-stop but luckily he hasn't had any since he has been back to name brand seizure drug. Andy will go up on Friday while I will go on Monday - we usually take turns as to who attends his appointments - since we need to remain working to help pay the bills.