Well today they decided to take Janessa's nerve block out since she did so well with it turned off which was a plus it was irritating her because it was running down her back! Her ileostomy today started working, and my goodness is she having a lot of output from both her stoma and g tube! I'm not exactly sure why though she hasn't been taking anything by mouth whatsoever. She seems to be her normal self again, she is running on a bit of Tylenol but that's nothing compared to what she was on yesterday!
Today they also started giving her iron sulfate through her g tube, we are hoping this will be effective in keeping her blood count up so we can avoid blood transfusions!! She did very well with her one last night, in fact she slept through the whole night! As of tomorrow the plan is to fit her for a new mickey button, hers seems to be leaking quite a bit, and get discharged home. I'm not sure of what pain medications she will be on if any, but I'm sure like anything else we'll work it out!!!
Wednesday, March 23, 2011
Tuesday, March 22, 2011
March 22nd 2011: 11 Months Old
Janessa came to children's hospital today, and went into surgery at 9:45 for an ileostomy revision. She did pretty well with the surgery but she is in a lot of pain. They have a nerve block in (which I think now is leaking)! They also gave her numerous doses of morphine, Tylenol, and IV ibuprofen. She is in a pretty good mood right now just a bit drained.
As of so far we aren't having a great experience. We went to dinner for a little bit, and told our nurse that we were leaving, and Janessa got tangled up in all her cords, and one was around her neck!! Also her nerve block seems to be leaking, I want them to take it out anyway, it's right on the top of her back, and how she is rolling around, it can't be a good thing.
Janessa tonight will also be receiving some blood, her blood count is at a level 6.9 which is low, so tonight that is the plan. Sorry the update is so short and not very detailed I'm very tired from the day.
As of so far we aren't having a great experience. We went to dinner for a little bit, and told our nurse that we were leaving, and Janessa got tangled up in all her cords, and one was around her neck!! Also her nerve block seems to be leaking, I want them to take it out anyway, it's right on the top of her back, and how she is rolling around, it can't be a good thing.
Janessa tonight will also be receiving some blood, her blood count is at a level 6.9 which is low, so tonight that is the plan. Sorry the update is so short and not very detailed I'm very tired from the day.
Thursday, March 10, 2011
March 10th: Rain Rain Go Away
Today Janessa had both an urology appointment, and an intestinal care appointment at children's. We arrived at the urology clinic at 9 am and a renal ultrasound was done. Janessa's bladder was pretty full, and her left kidney showed very mild swelling, but none of that seemed to concern the urologist. They decided to cut back the catheter time to every six hours instead of four which is a huge plus for Janessa especially in the infection department. We are going to trail this every six hours and see how it goes, but if she is holding a large of urine, and not naturally urinating then we'll have to go back down to every four hours.
We got into the intestinal care appointment shortly after lunch, which Janessa was great during our lunch session by the way. During our monthly intestinal care fad we discussed Janessa's intake and output numbers, a new kind of formula for her(she really dislikes her neocate, so they are trailing her on vanilla elecare which she enjoyed so very much!), and transplant. Two transplant surgeons came in and we discussed her placement on the status 1 list, and what we are going to do about her liver. Janessa's liver looks really good, and we are hoping and they are hoping that we can just transplant Janessa's bowels, and try to keep her natural liver in, which would be better for her. In a short sense, if Janessa's bowel rejects she will be okay, and will be able to get a new bowel, at that point she will be considered short gut, but if the liver rejects the outlook is very poor for her being the liver is so essential in life.
On a positive note, Janessa's first tooth is finally coming through! We are so excited our baby is getting her first tooth, we weren't even sure if she would have even made it to that point this time last year. It's almost been a year since we moved back from Pennsylvania, on this date last year I was planning my trip for Philadelphia to get tests done on Miss Janessa, what a crazy, and hectic year it has been. I do say though, I am thankful everyday Janessa is doing as well as she is.
We got into the intestinal care appointment shortly after lunch, which Janessa was great during our lunch session by the way. During our monthly intestinal care fad we discussed Janessa's intake and output numbers, a new kind of formula for her(she really dislikes her neocate, so they are trailing her on vanilla elecare which she enjoyed so very much!), and transplant. Two transplant surgeons came in and we discussed her placement on the status 1 list, and what we are going to do about her liver. Janessa's liver looks really good, and we are hoping and they are hoping that we can just transplant Janessa's bowels, and try to keep her natural liver in, which would be better for her. In a short sense, if Janessa's bowel rejects she will be okay, and will be able to get a new bowel, at that point she will be considered short gut, but if the liver rejects the outlook is very poor for her being the liver is so essential in life.
On a positive note, Janessa's first tooth is finally coming through! We are so excited our baby is getting her first tooth, we weren't even sure if she would have even made it to that point this time last year. It's almost been a year since we moved back from Pennsylvania, on this date last year I was planning my trip for Philadelphia to get tests done on Miss Janessa, what a crazy, and hectic year it has been. I do say though, I am thankful everyday Janessa is doing as well as she is.
Tuesday, March 1, 2011
March 1st: Here Comes The Sun
Janessa has been doing well. Her urine is again full of sediment, but she is negative for infection. The news yesterday is that Janessa will get her ileostomy surgery on March 22nd not sure of a time yet, then she'll hopefully be able to get back to her normal diet of baby food depending on the output. She has a urology/Icare appointment March 10th so I'll know more information there.
In other news though, it is a very pretty sunny day here, a little chilly, but finally spring will be here :) I may take Miss Janessa out for a walk later depending on the temperature.
In other news though, it is a very pretty sunny day here, a little chilly, but finally spring will be here :) I may take Miss Janessa out for a walk later depending on the temperature.
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