So My precious Lily girl is giving me grief once again. We were suppose to go home over the weekend but we are doing the PICU dance, which is one step forward and two steps back. Her heart is looking great as of right now, we still are having arythmias but we had that last time we came home. We are looking to come home on more meds this time around, the Amiodarone for her heart rythm, Lasix for her puffieness, and then Zantac for her Reflux.....
Now about that reflux...strange because you ask one doctor about the results and they will tell you she doesn't have it but if you ask another doctor they will tell you she does. I think they all need to put their heads together and get back to me...
A Swallow therapist came by and told me from the results of the upper.G.I she does have reflux and they want us to come back...once we are released that is...in July for another follow up upper G.I....lovely...they are saying that one of the valves isn't closing completly and is allowing the food and stomach acid to come back up and just sit in one place....I wish I could have gone down to the radiology department and watched the test, I am very interested in how it works, but unfortunatly as a parent you must sit and twiddle your tumbs in anticpation instead and get the news second hand.
So we are still on a continous feed which doesn't look like it is changing any time soon. But hey we are up to 22cc an hour instead of the 20cc....Look at us go...Lily is still congested and has to be suctioned at least twice daily and she throws up at least 10-20cc, twice daily. we are now really stinky formula and I wish they would just go back to the regular simalac, I don't think the formula is the problem right now. From what all the nurses and doctors have told me, they think there is a little cold going around the unit right now because she isn't the only baby throwing up and having yucky stinky diapers. She pegged Nurse Kristi today as she was being held by her, she got that look in her eyes and before I could get the words out of my mouth, "She going to throw up," it had already happend....we were ready for it when it happend again. Most times when she does throw up it comes in waves of at least 2-3 times in a row. After we get that out of the way, she is back to being cute adorable Lily and all smiles while you clean her off and change her clothes yet AGAIN....I swear that child wears more clothes in one day then I where all week sometimes....ok...maybe not that much but you get the picture.
She is still on methadone for her with drawls....I wish they would wean her off of that already...because we can't go home on that nore these feeds....at the rate shes going we are going to catch up to the length of her first hospital stay of 28 days....makes me laugh....because we didn't think we would be back in the hospital ever again except for a heart cath...and now we will be facing St.Joes every couple years more then likely....I love the place, it is like a home away from home, and the nurses and doctors are great, but i would rather just drop by for a friendly visit, then to come in for a 3-4week hospital stay. We are rolling into our thrid week.....ugh, what I wouldnt give to be home again. But we are where we need to be and it is what it is. I won't look to tomorrow until this day is about to close. One day at a time is all we can take it, never more then one day at a time....oh how frusterating it is....but that is our life....and I would not change it at all..... Life is a womans gift, and death is gods... I am thankful for all that I have!
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