Saturday, July 21, 2012

Way too Long Without an update...

I didn't realize it has been that long since I have updated.The past few months have been very hectic.Brady has been in and out the hospital every month since my last post.He has been having a lot of stomach issues.Even though he has a gj he has been dealing with a lot of stomach pressure.They were suppose to do a seperate g and j but surgery wouldn't do it so he is stuck with the one he has.

He also got diagnosed with a neurogenic bladder.Brady was having a lot of problems with urinating but I never knew how the problem was until he went into the hospital and spent time in the ICU becauase of a UTI.It was one of the scariest times in my life.Brady has had many "close calls" but it was so hard seeing him fight this.He is now being cathed every 3 hours and is on medicine so he is doing well in that area so far.

He is also requiring a lot more oxygen.He was only requiring oxygen at night but he has breathing and retracting has gotten much worse over the past few months so he now he is required to wear oxygen and his apnea monitor anytime he is asleep.He sees pulmonary next month so hopefully we can get some answers to his breathing issues.He snores like an old man so something needs to be done.

Other than the hospital stays he is doing well.He still loves his Yo Gabba Gabba and is eating soft foods and drinking out an noisy cup.We are just taking it one day at a time.

I am going to do better this time at updating(I promise) :)

Saturday, March 31, 2012

1 Step Forward...A million Steps Backwards

I had no idea it had been so long since I have updated the blog.A lot has been going on in life so I guess I was a little neglectful...

Brady has been in and out the hospital since he was 17 months.His last long admission was in November but he was finally approved for 24 hours because he was forgetting to do the all important act of breathing.He is on oxygen and requires constant supervision.We were enjoying our time at home.We made it through Christmas,New Years,and my birthday at home.

For the past few months I have noticed that he wasn't peeing as much.I raised my concerns and they did a bladder u/s.All I was told was that he was holding his urine but it wasn't a concern so we moved on.

Last week Brady just wasn't himself.He was sleeping more,fevers,and requiring more oxygen.I thought it was just Brady being Brady.As the days went by I decided he needed to go to the ER.I was thinking he just had a virus but boy was I wrong.It turned out he had a kidney infection and a UTI.How does a boy get constant UTIs.I have no idea.They did testing and they figured he holds his pee and when it does come out it isn't much so now we are adding more to an already complicated boys schedule.We are now cathing  because they suspect a neurogenic bladder.Now he has completely stopped peeing on his own.He is being cathed every 4 hours.It is an adjustment but we do what we got to do.

We have had some ups though.Brady is maintaining his weight so he is getting TPN 5 days and they are trying to get it down to 4 days.He is also eating  a soft diet and drinking out a nosey cup.Again huge for him.

Brady is a medical mystery and we just take it day by day.Right now he is running fevers,high heart rate,and vomiting.He is great one day and sick the next.Hopefully once we get over this hurdle we will be home again soon.