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.

Back in the Hospital

Brady was discharged from the hospital Dec. 31st.During this time he has had a lot of going on.He has had a bout of pneumonia and flu.During that time we were able to keep him home though.He was approved for 18 hours a day of home health nursing.That has helped a lot so he can get care and not always be in the hospital since I think he gets sicker in the hospital.

Our streak of staying home ended last Tuesday.He was running a fever which is not abnormal for him.He was also vomiting which he does every few weeks even with a gj tube.We got a call at home that he needed to be a direct admit because he has a line infection.They are treating him with antibiotics and if all goes well he should be able to go home this weekend.

They are also adding back on lipids to him TPN since he is not gaining weight.He has always had problems gaining weight but with the vomiting and the constant diarrhea he is not getting enough calories and maintaining his weight.It is hard seeing him in pain constantly but I'm trying to do what is best for him.

I will try to update the blog more.

What A Difference A Tube Makes

Brady got his g tube last Monday.I was so nervous about him getting it and I was against it at first.After Brady got it he was still vomiting.I was tired and defeated.I felt like Brady was just never going to stop vomiting.They started his feeds last Wednesday.It was a slow process but the vomiting has stopped!Brady is staying up more and he is getting his personality back.He is at his first goal.He is at 39ml/hr.We now have to increase so he stay off for a few hours.We are also going to start cycling the TPN so he will only use it at night.I am so glad he is getting better.There have been times where I have been so worried about him and after 7 months in the hospital it is about time he is closer to finally going home.

Over one hurdle

Brady has had a really rough few days.He was doing a little better up until Friday.On Friday they decided to try to attempt to give him some feeds.The feeds were only going at 5 ml/hr.Brady couldn't even tolerate that and his retching and gagging started.He also started having labored breathing and lots of wheezing.It was so hard watching him in pain.I hate seeing him uncomfortable.It was one of the times I actually started to really worry about him.The vomiting just was not letting up.

Today they told me if they didn't get in the gj tube soon they would have to send him home on TPN for a few months and then reschedule the gj tube in a few months when his health was a little better.Well Brady already has liver problems and the TPN is bad on the liver.I'm okay with him being on cycled TPN when he goes home but I don't want it as his only source of nutrition.At least not yet.I want to see if the gj tube will actually make a difference.

They ended up getting him scheduled for today.I was nervous but if it is something that they think he needs I think they should go for it.He seems to be doing better.He will start feeds tomorrow.I pray that it helps.I hate seeing him in pain all the time.I will keep everyone updated.

I Wish I had A Magic Wand

I had Brady's care conference Wednesday.I was sick to my stomach the whole day.I hate those kinds of meetings.You are in a tiny room with all kinds of doctors making plans for your child.I know Brady has a long road ahead of him but every time I have one of those talks with the doctors it is always hard.The plan is for him to get the gj tube and do cycled TPN.It was what I was expecting but it is still hard.Even with all of Brady's diagnosis  I have always held out that he could get better.Maybe some test was wrong and later on he would come out of everything.I know that is not the case but I always hold onto the thought.

Thursday he woke up congested.In the matter of a few hours he was all junky and just not feeling  right.They did an x-ray and he has aspiration pneumonia. He has been miserable.He has to have oxygen and he has never needed it before.He is not happy at all.I just wish I had a magic wand and I could make everything all better.He is an innocent 2 year old.He should not have to go through all these test.He should not be hooked up to all these wires.His stomach is fill with cords.I hate seeing him in the hospital all the time.I know that things will eventually get better but it is so hard seeing your baby in the hospital all of the time.