Brextin's Hope: We are still at the hospital -

Thursday, February 11, 2010

We are still at the hospital -

We went to the ER last night around 10 pm and got moved up to a room around 4:00 am - and it is currently 7:00 am - I might have slept for about 1 hour. I am exhausted - I had to make sure I was awake around 6:00 am to call into work and to type up lesson plans for the sub. Plus since I didn't grab my phone charger - I am without a phone since it died - it just bothers me - to know how much we rely on technology and once it is missing - the world seems to come to a halt.

I was unable to log into the computer in the family waiting room so I am currently using a nurse's computer - and am glad that I am able to update his status.

They have been taking blood work and said his potassium is on the low side so they have started an IV - his vomiting has stopped but it is coming out the other end - and they are total blowouts - and since I am alone - I think I stopped counting the dirty diapers around number 8.

I plan on checking to see how things are at my home - I am hoping my husband is feeling better as well - and I sure hope our oldest as well as myself do not get this bug.

2 comments:

ferfischerFebruary 11, 2010 at 10:23 AM
Poor little guy. I'm glad you're in the right place! I hope you all feel better soon.
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KinseyFebruary 11, 2010 at 4:44 PM
Sorry to hear that he's in the hospital :( Hope he feels better soon! I think about you guys a lot, and I wore my Hope and Love For Brextin shirt yesterday.
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History of Brextin - May 2007- May 2010

Our son was born on Mother's Day in 2007 - we thought everything was fine - when he was born they did wisk him away because he was swallowing fluid - so they suctioned the fluid out and placed him on extra oxygen - just to be safe - they said I had nothing to worry about - he should be fine -

We noticed from day one he had a very pour suck - he also had a vomiting problem - it seemed that he threw up everytime he ate - then he ended up having a poop issue as well - every diaper was a messy diaper - so we were sent to the doctor - they placed him on a special formula - thinking he was protein intollerant -

The poop issue ended, but not the vomiting - at about 2 months of age - he got his immunization shot and 4 days later he stopped eating - we were rushed to the hospital - where he remained for 10 days - they did test after test - and found nothing - except that his head was smaller than the norm and sent us on our way -

Our local ped doctor checked over the reports and wanted a second opinion - so we were sent to Mayo - they claimed that he could have seizures - however none were noted yet - but the brain pattern was present - then about 1 month later - the seizures started to appear - so we had another EEG and that was when he was DX with Infantile Spasms -He was then placed on two types of seizure medicines - vigabitran or Sabril and topamax. Two years later - he is now off both of those drugs - but is currently taking generic Keppra.

We tried intensive therapy, Hyperbaric Oxygen therapy, and MEDEK therapy in June of 2009 - in hopes it would help him further his development. By doing these therapies over the summer - has allowed him to be able to get into 4 point and rock back and forth.

We just completed a second round of oxygen treatments - and currently he is learning how to suck - which he has never been able to do - so this is a huge milestone. He still is unable to crawl, communicate or stand independently (but will stand when placed up against a wall). We plan on attempting AIT training over the Summer. (he died before this was attempted)

Our son had a rocky start for his first three years of his short life, but he made a ton of strides, we were hoping he would have beat the odds of this terriable disorder, however we sadly lost our son one week before his 3rd birthday - we were in the process of receiving a second opinion on his condition at a hospital in the cities - and we have no idea what happened but he was called to the Lord above to become his angel right while we were in the hospital.

He began to vomit during each seizure which caused aspiration which spread to phenomena which took his life in just a couple of quick hours. I still cannot believe it – he was bouncing in his bouncer and sucking on his fingers just 24 hours before his death – however the heavens now have a very special angel and we have a very very special guardian angel who will watch over our family each and every day. He will be forever missed!

Brextin's Hope

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Thursday, February 11, 2010

We are still at the hospital -

2 comments:

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