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.

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.

Better Late than Never Update

Well the past 6 months have been filled with hospital stays.My life has been having doctors come in and out,getting blood work,EEG's,X-rays,etc.Brady has been in the hospital  3 times in the past 2 months just for vomiting alone.I am not getting any answers to the cause.They are wanting to do a gj tube but I'm not there yet.I just feel like it would be an easy fix but not stop the vomiting.I want to agree to it but I'm just not completely sure yet.They are scheduling one of his dreaded care conferences tomorrow to weigh my options.They don't  want him going home on TPN.That is not the way to go either.I just want to do the right thing but it is so hard when he can't talk and tell me what is wrong.

On a happier note though,he had his 2nd birthday Saturday.He was sick the whole time but it was just such a relief to get to the 2nd birthday.I worry everyday about him.It is so hard to have a child where you are constantly worrying about if he is going to make it.He has had so many close calls every time he gets sick it causes a panic because he goes down so fast.He is doing better today though so hopefully we are making progress.I am going to do better about updating from now on.

Breaking out Any Day Now

Brady has been officially off continuous feeds since Monday.It was a long journey to get him to where he needs to be. It took 2 months for him to reach goal with feeds. He did bolus with the syringe for the first two days. His doctor is hesitant that he might have another set back so he is getting bolus over an hour.It's not what I want but at least I finally get to hold him.It had been almost three months of not holding my baby.

He is also very,very close to getting discharged.I'm happy and I'm nervous.We have been here for so long.I have not left the hospital at all during his time in the hospital.I have no idea what I'm going to do once I don't have a call button,no one to change him,give him meds,etc.It's all going to be on me.

He has his first set of equipment coming tomorrow.He got his helmet today.Because of his microcephaly,I think the helmet is too big.Hopefully he can grow into it.Tomorrow he gets hi suction machine,oxygen,and apnea.It's going to be different going home with all the things we never used.He came into the hospital on 1 medicine.He's leaving on 8.I'm just glad that he's getting better.He had a very hard few weeks but he has bounced back.He is a real fighter.

Making Progress

This morning Brady did something he hasn't done in almost 3 months.They let him take formula by mouth and he actually enjoyed it.It was a struggle the first few times.We are using a soft feeder instead of his haberman bottle.He wasn't so sure about the feeder.I soaked his nuk brush in formula and then he liked it a little better.He drank 10 cc.They say that is what he gets in an half and hour so that's really good.I've been giddy all day.I am really proud of him.

He also got approved for his Kayser Batten bed.I'm not sure how long it takes for him to get.The hospital is also working on an plan for when he leaves.He will go home with a monitor,oxygen,and a suction machine.They also are going to train me in CPR.He is doing really good.Hopefully in another 2-3 weeks we can finally be home.

The Dreaded Meeting

Today I had a conference with his doctors.It was genetics,neurology,speech,OT,PT,nurses, pediatrician, social worker,and a lot of other people.It was like a bad dream.They set me down and explained that Brady does officially have CDG.They are not exactly sure what type yet.They also said that his EEG was extremely abnormal.He was diagnosed with Lennox-Gaustat syndrome.They are adding on Banzel.They don't want to add on too many medicines since his seizures will probably never go away but they are going to give it a try.The hardest part was when they told me I need to make some kind of plan if he was to come into the hospital.The brain controls everything and since his brain is so abnormal even a common cold could have terrible consequences.I'm not giving up on my baby though.They said usually kids with all he has don't make it past a few months and almost 2 years later he is still fighting.I love this little boy with all my heart  and I'm going to do my best to prove everyone wrong.They said he has about 3 weeks left in the hospital until he can go home.

All we wanted was a feeding tube

Almost two months ago we came into the hospital for what I thought was going to be a simple procedure.I thought we would be in the hospital for two weeks top while he was healing from his g-tube surgery.Boy was I wrong.During these two months Brady has had:
-enlarged liver
-elevated liver enzymes
-low blood sugar that required emergency shots to bring it back up
-MRI to make sure he didn't have a brain tumor
-a new diagnosis 

Congenital Disorders of Glycosylation

-uncontrollable seizures they he has all day and night

-can't tolerate his feedings

-muscle biopsy that came back abnormal

-Probably more but that's all I can think of right now

As you can see Brady has had a tough time.I think he is basically over the hospital.I am too.It's been a long time and I'm not sure I see an end in sight.I just want him to get better.I want my happy baby back.It's hard seeing him miserable.

Long Month in Hospital

Brady has been in the hospital for exactly one month tomorrow.He got his feeding tube but he is not tolerating it well.They are also worried about his elevated liver enzymes and his enlarged liver.His blood sugar also keeps dropping.One top of everything that is going on his growth hormone test came back too high and they can't explain it.It's just been a long month.

The Hospital is now my home away from home

Brady has been in the hospital since Monday.He had a seizure in the middle of Comcast.We spent hours in the ER because his stomach was extremely bloated and they had to get his fever down.


They have ran many test on him and so far they have confirmed: food is not going down his esophagus right, he is not digesting any food, he has elevated liver enzymes,and he has trouble swallowing. He is  now banned from having food by mouth. They are trying to figure out what kind of tube is best for him.


It's so stressful and scary. We are going to be in the hospital for a long time. I just hope they can finally get to the bottom of things. I hate seeing my baby in pain.