Well this is not how I thought I would get back into blogging. On December 24,2013 I lost my sweet boy. He put up such a hard but he finally lost the battle. My life since his passing has been empty and not the same at all. There is a void that can't be filled. I am doing my best to keep his legacy alive. He taught me so much. I am a better person because of him. I will use this bold to honor him. I miss you Bradyman. 

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) :)

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.

Admitted!

We were discharged from the hospital Monday.After almost 4 months inpatient I was enjoying my time at home.It was taking some time to get use to all the meds and the oxygen but at least we were at home.

I was just getting into the routine of being home when Brady decided to pull out his gj during his afternoon feed.I popped in a g and back to the hospital we went.I knew it was the weekend and we would most likely be admitted but I was thinking happy thoughts.My happy thoughts didn't last long though.They said he could go home with a g and get all his meds and TPN and come back Monday.Brady is on 24 meds though and can barely hold down feeds in his gj.There is no way he could handle 24 meds through a g so we were admitted.They changed all the medicines they could to IV(so thankful for the central line)and he is on 24/hr TPN.The plan is to get a new tube in tomorrow and go on our merry way.Brady usually never has short visits but we really need to get him home before more things happen.

One step forward,one step back

Brady was doing really well.We have been in the hospital almost 4 months.We were finally hearing ramblings of the "H" word in a few weeks.He was eating by mouth which is huge.Thank you nocate nutra for making something he can finally eat.We were up to 3 times a day.He even made it to goal feed.

Yesterday he started vomiting again.It's not his normal vomiting though which is good.It's crazy when you have a chronically ill child that even though they are vomiting what they are doing now isn't as bad as usual.It seems he caught some kind of virus.Feeds are now stopped and we are waiting for him to get over this bug.

It is sad and frustrating because he was doing so well.He is even trying to sit up on his good days.Hopefully this is just a small bump in the road and he will still come home in a few weeks.

It is going to take time to get him home though because he is on 20 medicines,needs nurses,and as a fragile as he is you can't bring him home unprepared.

Long Overdue

I have been using Caringbridge more than the blog lately.I haven't updated in months.Brady went into the hospital in April.Brady can never just have a short hospital stay.He has had a broken line,2 line infections,and pneunomia.That is just the big things.He is getting over another line infection and the antibiotics should be done today.They say that his infections are not starting his gut so we have to be extra careful.We were using ethanol locks but that ran out so we are not doing vanc dwells.We are going to try feeds again tomorrow and pray that he tolerates.I'm going to do better about updating.

Updates

Brady started pedialyte a few days ago.The first day he screamed.I wasn't sure why he wasn't tolerating since it was going at such a slow rate.I found out that they weren't giving him his morphine.He alternates between morphine and ativan because he is always agitated.The past few weeks he has not been a happy camper.Since he is on medicines to keep him calm he has been doing a lot better,

I had to fight hard to get his milk changed.He has been on elecare but he is still gaggy and retching with feeds.The nutritionist did not want to change his milk.I always do research before I ask about something.I wanted to give vivonex pediatric a try while we were inpatient.I asked GI about it tomorrow and they agreed so we are slowly doing feeds.I hope it helps.This is week 3 in the hospital.It is time to get answers and finally go home.