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.