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.

Will It get Better

We are still in the hospital.Brady still isn't back to his old self.He is really congested and I think he is just over being in the hospital.He has been in pain the past week.He is really fussy the times he is awake.He is cranky and not his happy self.They have now started him on morphine and ativan hoping that will help with some of the agitation.He seems to be resting so far but I have no idea how long this will last.They also started him on pedialyte and we will work on getting him back to feeds.I am really nervous and anxious about starting feeds back.I know he will do well for a few days but his vicious cycle will start back soon.I hate that we still have no answers on the vomiting front.I am exhausted and I know he is too.Hopefully someone will come up with some kind of answer soon but right now we still don't have any kind of answers.

Where do we go from here

Brady had made it a whole 3 months at home.He had battled the flu and pneumonia all without coming into the hospital.

We two weeks ago he went into the ER for his fever/vomiting spells.They sent us home though. The next day they called at home and said he needed to be admitted and we treated the line infection and he was sent home.

After being home a whole 4 days we are back in the hospital.He was once again throwing up and they found out that his line is no longer drawing back.

It has been a really eventful week for myself and Brady.I know it is not normal for a person to constantly throw up all day long. He is misery all day long.They say a nissen will not work and they say he cannot go back to a regular g tube.

What kind of life is going to have if he is always in the hospital for vomiting.I hurt when he is hurting.They say they have plans but I will keep doing my research.I am a goggle addict trying to find something,anything that can help him.I know he is not the only person who has vomiting spells like he does.I will keep looking and fighting for him.I miss my happy baby and I am certain there is a way to bring him back.