Thursday, May 14, 2009

A bit more revealed

Nothing too major. Got Graydon's referral, now we just need an appointment. Did find out why he was rushed to Childrens hospital...his white count was up and there was something else noted that could have meant his colin was dying due to lack of oxygen. I guess they had ruled it out once they examined him at CH. They may have done another blood test before I got there. So anyway, we are on the right track to getting him normal.

Hes been a very happy guy this week. He's definately feeling better. Hes laughing like he used too and chasing sister.

In other news the quarters is almost done and so far so good. 10 credits down and 80 more too go!

My mom has been very sick. She says she getting better but she doesnt sound better. I guess they did xrays on her yesterday. My grandmother broke her hip 3 weeks ago. Shes also not doing well, it seems she may have given up out of being old and lacking the effort to try to walk again.


Saturday, May 9, 2009

An update on G

I mentioned in a previous post about his diet and the problems. Well I don't remember how much I mentioned. He has been constipated most of his life. We first noticed a problem within a few weeks. They told us it was normal with the iron in formula. Told to give him more water. We took him in at about 4 months to discuss the issues. We were told to introduce cereal, oatmeal and fruits to try and give him variety to his diet. This didn't help as he would gag on the food.

Over the last year and a half we have brought him in for the constipation a half dozen times to have a discussion. We always had to see other doctors on call. They would say give him beans, prunes, juice and other things. Sadly the child is picky and likes what he likes. What he doesn't ends up on the floor.

In the last month things have gotten worse. He started getting a bad rash from constant "skid marks". I took him in to a doctor on call to get an opinion. She told me to use vasoline for his bum and to get his diet changed (again with the diet). If that meant holding him down to force a syringe of prune juice down his throat several times a day that is what we should do. We did try this a few times. It was bad enough we had to hold him down to clean his sore bum and the juice only seemed to choke him and make the rash worse. The next week he started random vomiting. He threw up once a day 5 days out of the week for a week. That Saturday I took him to the urgent care clinic where I finally saw someone that agreed there is more to his issue than constipation. She suggested a special pediatric GI specialist and mentioned it could even be Crohns Disease. I called his doctor that monday and she prescribed mirilax by phone. Said to give him a half cap a day and to come in a week and a half later. We did this. He still hadn't gone in 5 days when he kept having cramping that would double him over in pain and scream blood curdling screams.

He woke up screaming this morning early in pain. After not being able to calm him down we decided to take him to the ER for suggestions. This always happy baby has never screamed like this before. Once we got to the ER he had calmed a bit but continued to freak out once an hour. They took blood started an IV and sent him for xrays. We spent 2 and a half hours waiting for the results. The ER doctor came in to tell us he never seen a child as backed up as our little G. He said he wanted to have someone at Childrens take a look and he was making some calls. He said he wasn't sure what to do for him. A few minutes later he came told us that he arranged an ambulance to take him to CHS. We were utterly shocked and scared. Daddy went with him while I picked up bro and sissy to take them with us.

When we got there they hooked him up, took vitals and looked at his xrays and blood tests. They came and had us repeat his life story of hypotonia and suggested this was more than just a kid with constipation. The doctor at CHS said his xray was the most "impressive" (odd word choice) of a constipated child he'd ever seen. He was so backed up that an enima was dangerous. It would likely do more damage than good because his intestines are so stretched out. It will essentually be like giving birth once this stuff comes out. He is underweight as it is. They said the other alernative is a tube by mouth to get it soft from the other end. They want to wait a few days first and have us up the dose of the mirilax. We were told by both ER's that this is way overdue and he should have been on the laxitive from the beginning. They also suggested another underlying issue that hasn't been discovered. Something that is causing everything since birth. This is something Brandon and I have thought all along. Of course we are just parents with no medical degrees so what to we know?? But it is finally good news to have someone agree with us and point us in a direction. He will be referred to a special nuro department at CHS that will help find what the problem is. SO they can help prevent things in the future from becoming so bad before we get help with it. So now we are home and hes taking extra doses and hopefully it will all come out in the end...pun intended. Then we can get his intestines and digestive system working the way its supposed too. For now that is the story. Hopefully we will get some good news soon.

More to come...

Thursday, May 7, 2009

The story of Graydon...

I posted a couple times about our little G and his medical issues. I know there are many other children out there with far worse things wrong with them. We are lucky to have a mostly healthy tot.

Anyhow hes always had minor issues. When he was first born he didn't want to suck. We ended up staying an extra day in the hospital to make sure he had learned to suck the bottle. He did catch on but it wasn't usual. Especially since my daughter was born with hickeys on her arms she gave herself in the womb. This was just the beginning of his problems. At 2 months old I noticed his head was flat. I brought it up at his 2 mos appointment and it was agreed to follow up...it didn't get better and he was put in a helmet for plagiocephaly at 6 mos old. He started physical therapy at 4 months. He had issues at 6 mos gagging on baby food and swallowing solids. An upper GI showed no issue. They attributed it to his low muscle tone or hypotonia and delayed milestones. He was also a late crawler not crawling till he was a year old. He didn't pull himself up till 16 mos and didn't walk till 18 mos after being fitted for orthotics for his ankles that he currently wears. His ankle bone moves to the back of his foot and these are supposed to correct it in time. He is now getting around pretty well walking and almost running. He still doesn't say a lot of words and depsite a previous post is now going to have to start speech therapy. Otherwise hes a perfect, mellow little guy who has rarely been fussy his whole life. He may have phsyical delays but mentally hes as sharp and normal as anyone. He can also play the drums like a pro! I mean real drums too.

It took some time to realize that his issues have to all be related. Now we are on a quest to find out the cause. This will be noted in another update.

Wednesday, May 6, 2009

Wow...tons of time has past

Since I last blogged. Lots has happened. I an currently running on little sleep.

My boss passed away the day after my birthday this year. It was crushing to me because I have worked for him for over 5 years and I am so sad about it. I haven't really let myself mourn. I just keep busy. I worry what I will do when it will do when it is my own parent. Things have changed a lot with the company and I know change can be good but I am worried that they haven't communicated with the people that have been there for so long to understand things. A little mushroom syndrome.

I did get a cut in hours which isn't so bad in the end because I am taking classes. I hate to say I feel that the company wont survive in its current state. I hope it does, its all we've known. I am little sad that the others are now gone.

There is a lot more but I need to sign off. Seems I never have much time for blogging or otherwise.