Hi Everyone!
There has been a lot going on since we last posted...
Madeline's blood cultures tested positive for Staff infections after our post on that monday- But she had already been started on antibiotics and by the next blood culture that was taken - She was testing negative for staff. So either the Antibiotics took care of it or maybe she just never had it and a contaminant caused the false positive .
The Dr's were pretty positive about the urinary tract infection so they kept her on antibiotics for those and by Friday -she ended up being released home (this was April 27th) .
The second round of being at the hospital the last few weeks of April Madeline seemed to be doing ok - she was getting 4, 135ml bottles of neocate and 55ml/hr of neocate for 10 hrs overnight... when we got home (on the 27th) - things started flaring up again. Puking went from maybe 1oz a day in the hospital to as much as 8 oz a day (from all the puking). The only positive was that her stools had not gotten worse (maybe only 1-3 diarrhea diapers a day). However, because we were so worried we asked for an early GI appt on this past Wednesday (May 2). The Dr. then said that he felt she was going the way of dehydration based on her behavior and labs starting to be slightly off.. .and he suggested we admit her. However-- After Dad called mom and let her know that she was being admitted - he mentioned that the Dr. noted we might be able to keep her at home if we keep her on a continuous drip of pedialtye and she were to keep that down without puking...Trying to avoid another hospital stay we tried that and it worked thankfully. But everyone agrees (Gastroenterology, Nephrology, Mom and Dad). That something else needs to be done to stop this puking issue ..As Madeline does not gain weight/loses weight while puking (thinking on it now I am pretty sure she has been the same weight or lost weight for the last 3-4 weeks). The GI doctor gave us 3 options - Medicine (This would be Reglin -which is NOT happening -even the GI dr we have now is against it because of its general ineffectiveness and side effects--or another medicine which I can't remember the name of now but I am told may or may not affect her electrolyte levels), a J/G tube. .which would be still the g tube with an additional tube that is placed in the jejunum part of her stomach.. I am confused on this option because while the good thing is that she will not need surgery to do this and it can be easily reversed if ineffective i think she cannot eat anything by mouth if we go with that option- we need more information, the last option is the Nissen surgery which actually surgically tightens the top of her stomach so that she is less likely/unable to throw up .There is a lot to think about in any case- all have positive and negative sides to them ... We will start by repeating the upper GI next week as the GI dr wants to make sure that her Gtube isnt blocking anything/etc.
As a celebration of my birthday/mothers day/ We just needed a break- Dad took mom on a surprise trip to Frankenmuth, Mi for her birthday! A weekend trip to forget about all the stresses of our current situation and just focus on having fun as a family doing what normal people do... So it has been very nice and for the most part relaxing. Unfortunately Madeline has been struggling much puking a lot- and has now developed a severe diaper rash and has been quite uncomfortable. Through consultation with the Dr we have kept her hydrated and feel positive about that issue but worry about this really bad rash! Hopefully we can get down to business soon and come up with an answer about what route to take to stop the puking. Again -Dr's and Mom and Dad agree she will continue to be readmitted to the hospital for dehydration/feeding issues if we do not come up with a solution soon.
There are so many things running through our heads about the future -how things will affect her- when will she be able to start eating people food again without gagging and puking a ton at eat bite ..other things like this.. but somehow we must slow down and not forget about the future but focus on here and now if we want to get through each day. God is teaching us patience and relying on him for sure!!!
Thanks again for everyone who continues to support us- God has blessed us with a great support system!
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