Janessa came home this afternoon from Children's. She is doing well, her eyes are a little puffy from being over hydrated, but it's good for her kidneys, and her sediment in her bladder is gone. She came home and played like usual happy once again to jump in her jumper and watch blue's clues.
So back to details, Janessa still has nothing coming from her ileostomy, and our well known surgeon Doctor Burns scoped Janessa's ilesostomy and their seems to be a bunch of narrowing at the stoma site, so the plan now is to do outpatient surgery and create a new stoma for Janessa. It'll be on the same side and what not, but another surgery is another bit of pain for Janessa, but we are hoping this will fix the drainage problem she is having. Until the surgery Janessa is not allowed to eat any baby food, cheerios, cheese curls, etc, and she sure isn't happy about it! She is allowed to have 20cc 2 times a day of her neocate formula. This even could be just the fact of her underlying condition, which we hope improves eventually.
Other than that Janessa is looking good. I'll keep an update on what is next to come. Thanks everyone who reads her blog !
Friday, February 25, 2011
Wednesday, February 23, 2011
February 23rd 2011: A Break In The Path
Janessa went to Icare last Thursday, and we were given excellent news about cutting her TPN down two more hours, and increasing her feeds to 45mls. Her urine cultures came back negative, but her urine was still full of sediment it was alarming because it would clog the catheter up, and we couldn't get her urine out of her bladder!
Friday I noticed Janessa wasn't putting anything out of her ileostomy, figuring that it was normal being she has a pseudo obstruction, but only a small amount came out within the next two days, and we got an xray done on Sunday at Grove city hospital just to rule out an actual obstruction that would be causing this lack of output. Grove city not being as advanced as children's in medical knowledge and equipment told us she had multiple obstructions. After this being said, Janessa and I drove down in an ambulance to children's. It was a horrible 2 1/2 hour ride in that horrible snow storm, but we finally got there at 8pm, Caleb following behind us in his car to make sure we had a way home for when it will be time to take Janessa home.
After a lovely wait in the ER spending 14 hours total that day in two different ERs we were told Janessa did not have an obstruction but was going to be admitted for further investigation on why there was no output. Janessa not being in the hospital for over 6 months was not to thrilled with this idea. She was extremely miserable, and every time a nurse touched her to catheterize her or take vitals she would scream! It was a horrible night, but it surly got better Monday.
Janessa's blood count was pretty low, you could tell she was very pale, miserable, and lethargic. After a two hour blood transfusion Janessa was better than ever. She was again very playful and energetic, the Janessa we love to see. Tuesday morning our Doctor ordered a GI contrast to be done to rule out for sure any obstruction. Janessa hated that, she hates xrays anyway and that just really wasn't her thing, they put a bunch of contrast through her ileostomy and in her gtube to get a good view of her bowel. Unfortunately Janessa threw up :( and just wanted to sleep, it was a pretty exhausting procedure for her, but overall she did great in my opinion for a 10 month old.
Good news there was no blockage, bad news we still can't figure out why there is no output. They cut her feeds down to only two bottles of neocate(she is not thrilled with that idea) and added a bunch of hydration to her TPN since her bile salts were high, and her labs were starting to go out of wack. I'm actually happy with the hydration, her sediment in her urine cleared up, and her urine looks better than ever, usually her urine is a golden yellow color, but today it was actually clear colored, and free of particles. She looks a lot better too.
Janessa did pick up a bit of a cold on Thursday, and gastro thinks that could have affected her bowel movements, but we are not sure yet. They took a bunch of cultures as well; another urine, blood, and stool cultures, which all came back negative :) we are just hoping that her bowel starts to pick up some movement again and this problem resolves on her own. The earliest they said about discharging her is Friday, so we are crossing our fingers that will be the day so we can finally go back to our normal home life. <3
Friday I noticed Janessa wasn't putting anything out of her ileostomy, figuring that it was normal being she has a pseudo obstruction, but only a small amount came out within the next two days, and we got an xray done on Sunday at Grove city hospital just to rule out an actual obstruction that would be causing this lack of output. Grove city not being as advanced as children's in medical knowledge and equipment told us she had multiple obstructions. After this being said, Janessa and I drove down in an ambulance to children's. It was a horrible 2 1/2 hour ride in that horrible snow storm, but we finally got there at 8pm, Caleb following behind us in his car to make sure we had a way home for when it will be time to take Janessa home.
After a lovely wait in the ER spending 14 hours total that day in two different ERs we were told Janessa did not have an obstruction but was going to be admitted for further investigation on why there was no output. Janessa not being in the hospital for over 6 months was not to thrilled with this idea. She was extremely miserable, and every time a nurse touched her to catheterize her or take vitals she would scream! It was a horrible night, but it surly got better Monday.
Janessa's blood count was pretty low, you could tell she was very pale, miserable, and lethargic. After a two hour blood transfusion Janessa was better than ever. She was again very playful and energetic, the Janessa we love to see. Tuesday morning our Doctor ordered a GI contrast to be done to rule out for sure any obstruction. Janessa hated that, she hates xrays anyway and that just really wasn't her thing, they put a bunch of contrast through her ileostomy and in her gtube to get a good view of her bowel. Unfortunately Janessa threw up :( and just wanted to sleep, it was a pretty exhausting procedure for her, but overall she did great in my opinion for a 10 month old.
Good news there was no blockage, bad news we still can't figure out why there is no output. They cut her feeds down to only two bottles of neocate(she is not thrilled with that idea) and added a bunch of hydration to her TPN since her bile salts were high, and her labs were starting to go out of wack. I'm actually happy with the hydration, her sediment in her urine cleared up, and her urine looks better than ever, usually her urine is a golden yellow color, but today it was actually clear colored, and free of particles. She looks a lot better too.
Janessa did pick up a bit of a cold on Thursday, and gastro thinks that could have affected her bowel movements, but we are not sure yet. They took a bunch of cultures as well; another urine, blood, and stool cultures, which all came back negative :) we are just hoping that her bowel starts to pick up some movement again and this problem resolves on her own. The earliest they said about discharging her is Friday, so we are crossing our fingers that will be the day so we can finally go back to our normal home life. <3
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