Update 530pm

Humph today has been along day so far. With very few answers. We found out with our first time in radiology we found out that there is no obstruction. Which is good and bad all in one shot. Eli had i think about 30 cc of barium in his j tube. He cried and cried my tiny man was very uncomfortable. We had to get his nurse to come down and give him motrin. The tech wasnt very nice he disagreed with the orders. He also wouldnt change his gj tube. And we also almost didnt get his polick valve test. Heather told him that was not gonna happen.

About 20 minutes later we were back down to radiology for a gastric empting. Holy cow much better experience. The test showed that everything looked fine. The problem is when they put the radioactive material in it leak all over the place. So someone saw it other than us first hand.

We are back to square one though. No one has any ideas eli is in a whole lot of pain when anything goes into his j and it leaks out of his g. He also coughed up some of the bile. Which he isnt supposed to be able to do. We are watching him very closely to make sure he isnt going to asperate on stomach acid.

We also missed his surgeon which we have been waiting for since yesturday. She was supposed to be here this morning and never showed. Then she comes when we are in radiology for almost 5hrs. No one told us she was here until we came back. Surgery is supposed to be tomorrow which she will do the port and the the bear testing for hearing.

Now just waiting for his hospital doc to see what's next. she has to give us some path to go some ideas to try. my little man can't keep living this way.

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11am update

Well eli is headed for surgery. He will be getting a port. It will help him when he needs an iv and getting blood work. Also he will be getting a new gj today. His has some black remits that no one seems to know what it is. Also he is leaking out of his stoma still. We are changing it alot. He will also be doing the bear hearing screening to find out how much hearing we have. His blood work came back hemolized no suprise and they also didn't get enough so his doc is putting it on stand b. They finally got a urine sample so we are waiting for those results to come back. The other test still say he is dehydrated. They also are checking his piloric valve they suspect that it could be block. They also think that he could have a puesdo obstruction. If not the other things are bad enough.

I'm always concerned when eli goes for any surgery. He has had multiple issues with anestia. He had to be intibated and it was very scary. It's definitley something that I don't wish this experience on anyone. Emotions are crazy at this point.

I will be as strong as I can because that's what parents do. That's what spouses do for each other. they do everything they can to keep the stress level down. Eli is a very determined little man. He will do well that is my montra. We will do fine. We have friends and family that care about us. more updates when we have them.

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7:00am update

Eli did pee this morning so no cath yet. They are doing a UA to see of any infection. Bile leakage seems to have decreased. He is coughing again. Heartrate hasnt changed much. It is still high for him. Dr Mo his cardiologist came very early. It was suprising. I explained as much as I could and Heather talked to him as she was driving in. The one thing that just pisses me off is when he was called he was only told that we were here. He wasnt told about the elevated heartrate which DUH is the reason to call a Pedatric Heart Specialist. He is ordering a EKG for eli and says he will be around so he will have them fax over the info as soon as they get it so he can make a decision if he needs to do more testing. Waiting for Dr Molik on for the surgery side of things. We will just have to play the waiting game again. Will update as the day goes.

Update 905pm

Dr molik his surgeon will be here in the morning to consult on whether or not eli will get a port and on the excessive drainage out of his stoma. Humph we were told she would be up tonight. Also his cardiologist will be here in the morning. Heather has gone home to hopefully get some sleep since she has only slept for about 4hrs in the last 73hrs. Eli has peed alittle hopefully enough not to have a cath in the morning. We will just have to see. Eli is also finally sleeping in his bed. This is very good. Well im off to bed. I will post again tomorrow with more updates.

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Quick update

My little tiny man has gotten worse high fever iv in the head and cath. The night was very bad ran multiple test. No one knows whats going on. I super concerned. Heather is doing ok as ok as anyone can be. The resident is terrible. Now just waiting for the doc.

update 1220pm Resident came back in and apolgized to heather about not really listening. it seems like he probably talked to the people on the floor and they advised him about what type of people we are and how much information he can get from parents if he just listens.

Dr heflin came and talked. it sounds like they may do surgery to put in a port for drawing blood and giving fluids. heck we have been asking for that for along time. She also said that they would try to do the hearing test and the cpap at the sametime so we wouldn't have put him thru anything else.No suprise she is calling the surgeon,pulmologist and possible the urologist. eli's body isn't relieving any urine on its own or any bowel movement. Hopefully that will change soon.

So now we are waiting to find out what the surgeon wants to do. They tried to get blood which heather and I were pretty sure that they wouldn't and they couldn't so now we wait until 4 for vitals. Temp is down a bit but heather said that it's been going up and down. It's very frustrating that no ones anything. It just angers me and I'm trying to not to show it or express it cause as a man you are supposed to the calm one. I can tell you it's not easy. More updates when I get them.


update 250pm
Dr molik eli's surgeon will be around soon. eli stoma the hole that the gj is in has been leaking very badly for the last 24hrs. she will be around soon we hope to let us know what her thoughts are and what is the next step. she will tell us if we will have surgery.

update 515pm
Eli is not peeing at all the last 3hrs. We noticed that his cath fell out. his 2 by 2's are soaked in bile. He is very uncomfortable. all day he has been very clingy and he hasn't let heather set him down all day. Everytime he gets moved he cries. He is so miserable. Still waiting on the surgeon humph this waiting game sucks. They were gonna try some elecare and we said no and after the nurse looked over him she called the doc. The doc said that we will wait and see. If he doesn't pee by 8am tomorrow they will put the cath back in. his body isn't moving anything out. It really sucks I really wish I could help my little man. I really hope that heather gets some sleep but I don't know hope mr e will give her a break.

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Updates

Eli has been pretty sick over the last few days. He has gotten worse. He was very lathagic yesturday and after heather and i talked we called his doc. After talking to the doc she said for us to keep an eye on him and if anything change to let her know. She also said she wanted labs done. So we called around and found someone that could do it however it was going to cost . We called dr h his doctor and she said to keep an eye on him overnight.

The night was rough. Started basically at about 6pm. He was very sleepy and didnt want to do anything. We put him to bed about 8. About 1230am he woke up crying. I got up checked on him got him somemore food, changed his diaper twice. Those were pretty bad. He seems not to be able to keep it down. He was pretty uncomfortable and not very happy. We gave him ibuprofren, changed his diapers multiple times applied A and D fantastic stuff however nothing seemed to help.

Heather was awake and we talked trying to figure out what we could do. At about 330 heather went into his room and we made a bed on the floor and we took eli out of bed. She tried to cosleep with him however it still didnt seem to work. She ran to walmart at about 4am to get more tylenol and ibuprophen.

We called his doc and explained everything to her. She advised us to bring eli in for lab work and chest xray. She has said that he looks terrible. Heather and eli are at the er now talking to docs and waiting for results to see whats next.

I feel helpless. I cant help my little man feel better. Heather and i tried everything. Im at home trying to get better. I woke up feeling horrible. Heather took very good care of me. The kids helped out alot this morning. Im very luck to have such a great family.

I will update more when i hear from heather.

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The sickness

All the family has gotten the bug except me. Luckly it has gone away quickly around 36 hrs has been the longest. After a day of rest heather is now feeling better. All the kids seem to be doing well except mr eli. He is still not doing great. Doc says to give pedilyte and to keep an eye on him. They have standing orders for direct. Fun stuff. Eli was up very early this morning very crabby. I hope he gets over it soon seems like he has had it for along time on some level. Crossing fingers for no admit. Really hoping not to get but not holding my breath.

We took down our christmas decorations yesturday. Wow it was a lot of work. Especially sine the tree was anchored to the wall. We just have alittle more to do today. We got all the decorations organized and put out in the garage. Now to enjoy the new year and all that it brings.

HAPPY NEW YEAR

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