All test results and cultures are in NO viruses flu rsv or phemonia. If their is a blockage they dont see it. Getting another xray today to see if he reherniated. Please pray. Liam hasnt eaten in days and is on IV fluid just for dehydration, no calleries. Liam is loosing weight cant afford to be doing so. He sleeps most of the day and night because he has no energy. We dont know whats going to happen.
12:30 pm The doctors here at childrens has decided to do an Upper GI. Hopefully that will yeild some answers as to what is going on with Liam. They're also talking of starting TPN because their not wanting him to loose too much weight. Liam is still cranky and in pain. The doctors here decided to treat this like it has nothing to do with CDH until the see otherwise. Im not too sure how I feel about that. I understand that this could have nothing to do with CDH but I also know other CDH babies that are having similar symptons. Unfortunately there have yet to be answers for those babies. Im tired and Im crabby. I havent gotten much sleep since sunday night. I'm not giving up and I refuse to let anyone else give up on Liam. There are more test they want to run if this test shows nothing. I just pray to God that we can get passed this hurddle. I know that there will be more hurddles to come but we can only jump over one at a time.
2:10pm It's been 5 days since Liam has been able to hold food down. Childrens only has him on IV fluid (saline) for dehydration. They don't want to put him on lipids or TPN until after the do the upper GI. If he doesn't get the upper GI until monday that will be 8 days with nothing. He's already lost almost a pound. He weighted 4.48kg this morning, 8lbs 13oz. When we brought him in he was 9lbs 5oz I believe. A different doctor came in to talk to us that will be following Liam through the weekend and next week. He said he won't let Liam's weight loss get critical. What he thinks is critical and what I think is critical is on different ends of the spectrum.
7:00pm Been doing research all afternoon and talking to other parents with cherubs. It sounds like there are a few possibilities. He could have a bowel obstruction, reherniated or malrotated bowels. Yes childrens is saying its not an obstruction but I don't believe them because they keep saying "everything looks good but his anatomy is so jumbled up that we really don't know". I have posted his xray from today on a few sites asking anyone to take a look and let me know if it looks like their kids. I've also emailed the xray to several doctors and surgeons and am waiting their response. I'm uncomfortable at this hospital and don't really trust their diagnosis. I think it all boils down to the fact that they don't answer question affectively, they say "I don't know" alot and theyre going to let my son go 8 days without any callories or nutrition. Im having to make a huge decision on weather or not to have him transfered.
10:25pm Severely irritated. The night nurse came in to give Liam Ranitidine. I told her that I was told we DCed all meds as of last night. She told me and I quote "Oh no it's at the nurse's discretion". I just stared at her. You don't put a nurse in charge of deciding weather or not a baby needs meds. The doctors needs to make that decision then its up to the parents to agree and disagree.Then she proceded to tell me that starting tomarrow they will be starting the Reglan and doubling the dose to .8ml's 3 times a day. That is sooooo not happening in my book. It was my understanding when we were in UCSF that Liam already had the max dose for his size and thats .4ml's. I refuse to let them overdose myy child on meds because their too stupid to ask UCSF for help. I let her give Liam a dose of Ranitidine this evening just to see if his tummy was still hurting. That will be the last dose until we figure out what's wrong with him.Justin and I don't see eye to eye on everything but we deffinately agree about his meds, Why would you put meds that prevent reflux into a babies stomach that one isnt eating anything and two water even hurts him. We have a list of questions we want answered as soon as the doctor comes to see us tomarrow.
No comments:
Post a Comment