You will not be surprised to know???

We are sitting in the ER.  Avery had a miserable night where he was in so much pain that he never went to sleep last night.  Aftter giving him every med. he has ordered and PRN meds he still was miserable.  Finally at 4:30 am I gave him rectal tylenol and that helped him sleep for 2 hrs.  He was so miserable that I thought about taking him in during the night but I was just to tired and his vitals were stable.

They are trying to rule out a few things.  We have already done xray studies on his gj tube, abdomen and hips and they look fine.  I am wondering if it is his gallbladder and I think they will be checking for that as well as kidney stones.  He is still in pain as I type and they gave him IV phentanol which has helped a bit.  Hopefully they can get to the bottom of this soon.  I am just worried that we will have no answers which is often the case and it can be so frustrating. 

I will keep you all posted. 

I did want to say a HUGE CONGRATS to the Romero's on their beautiful baby girl born this morning.  I cannot wait to meet her.    Also Congrats to the Central Catholic boys on winning the Christmas Tourney last night and good luck to the girls tonight.

Happy BIrthday RIck!!!!!!!!

We hope you had a great day today.  We love you.......


I have to say we had a GREAT Christmas.  It felt so good to be home celebrating with the whole family.  It makes you really appreciate the times you are home.  My heart goes out to all the families that celebrated Christmas in the hospital. 

The boys were feeling great until today of course :(     I swear we thought or wished Isaiah's cycles either were done or more distance apart since revamping all his meds.  But no dice..... He started retching today.

Avery woke up at 5am choking and the poor kid was vomitting blood.  Yup, never a dull moment around here.  At this point, I don't even panic about that unless it is copius amounts.  I have seen him do this many times and he gets the full work-up and it turns out to be nothing.  I suspect that it is his gut acting up so we stopped his j feeds for a few days.  He has not vomitted the rest of the day but he did seem to aspirate and now he is so junky today and requiring alot of nebs and the whole nine yards.  We are certainly going to do our best to keep him home b/c I really really really do NOT want to go back inpatient unless he really really has to.  I do think he is ok for now at home. 

The other thing is he looks like he has dropped some weight both me and one of the nurses noticed it :(   They not get a good weight on him inpatient b/c he was in full clothing with shoes and wet diaper.  I had spoken to the nutritionist while there and she said if his weight dropped then we would have to increase his TPN amount :( :(  Sucks, we are supposed to be reducing it not increasing.

So if you can spare a few prayers that Avery starts to feel better and we stay HOME, I would appreciate it.

Thanks all.

MERRY CHRISTMAS TO ALL!!!!!!!

We have been blessed with being discharged just in time to be home with the family and celebrate Christmas Eve and Christmas Day.  Wooooohooooooo

Hope everyone has a happy and safe Holiday

Going a bit stir crazy here

I am just not used to being in the hospital only 2 days before Christmas. Believe it or not we have never been in during a major holiday so I guess I got spoiled. But this is NOT the one to miss. The boys don't know it is Christmas but Janessa certainly does and that is what makes it very difficult. Janessa and I usually go to my friend's parents for Christmas eve and we have been doing that since she was a yr. old and she REALLY looks forward to it and so do I. So we are cutting it really close tomorrow.

Essentially, Avery just has a cold and with the fever yesterday and having this central line they have to do a 48 hr. blood culture rule out. Grrrrrr.. So he has to have two negatives before we can be released. This should happen after 2p tomorrow which is stressing me out b/c I have a ton to do. Don't get me wrong, he is junky and needing alot of suctioning and you can tell he doesn't feel well. But we could manage him at home. So as long as he does not get a fever before discharge then he will go home tomorrow. If for some reason he does have to stay then we have decided that we will spend xmas eve and day with Ness and Isaiah and one of us will come to the hospital on Frid. afternoon. But hopefully that is not the case.

So he is being admitted. He actually looks pretty good aside from the junkiness. Hopefully this will be JUST a 24-48 hr. rule out and we are home by Christmas eve the lastest...

Here we are in the ER with Avery who has a fever and sounds sick with coughing, sneezing and all. I am also worried about a line infection bc he has been having blood from his gut and recent constipation issues so I really hope he gut did not translocate to his line. Butr my gut is telling me he is sick with a virus.

Please pray he does NOT get admitted. Bad timing...

ITS TUES FOLKS.....