Made of Gray

Day 14 Much Better

Holly D Gray6 Comments
14 days since Caleigh's initial surgery and she is doing a lot better. I think we are finally getting some much needed rest now that we are in our own room even though there is a constant parade of nurses and doctors in and out.
Eric and I had a heart to heart with our charge nurse yesterday morning. We asked that it be put very clear on Caleigh's card-x (chart) that we want the cleanest of practices around her. We asked that everyone wash their hands as they enter our room and as they leave, always wear gloves to do anything, use Caleigh's own stethoscope when listening to her, use alcohol wipes on everything, and when doing blood draws for labs they must do the process sterile and change the hub after each draw. We also asked for continuity with our nurses. The charge nurse was very nice and said that if we had any problems to please let them know and they would take care of it. The first night we were in our room it wasn't the best. So it's been so nice not having to correct everything the nurses do from the moment they walk into the room. They know what needs to be done and how it needs to be done and they have been great so far.

Yesterday, Caleigh received a blood transfusion of packed red blood cells. Her blood count had been slowly trickling downward. The thought was that her respiratory rate being high was because she didn't have enough red blood cells to carry the oxygen through her body making it harder to breathe. So as of today Caleigh's respiratory rate is much better and she seems to be feeling much better. Problem solved for now.

i.e. Thank you for all the suggestions on Caleigh's breathing that everyone sent us, we discussed them with our doctors and they appreciated the challenge!

The next challenge to overcome is a high calcium count. No one seems to know why it's high because Caleigh's other blood work is great. We are thinking it might be from one of the medicines. I've been researching, well see what we come up with.

Caleigh's incision isn't for the squeamish, but it is healing nicely. In the next 10 days or so the surgeon will remove her stitches.

Oxygen......what oxygen? We have had Caleigh off of her nasal cannula all day today and she has done wonderfully. We don't plan on putting it back on unless her oxygen saturation gets below 92, but all day long it's been 96 or better. We're so proud and so excited to see those beautiful cheeks!

Caleigh's pain management doctor has been coming by daily and so far we are off the morphine and versed and probably by tomorrow the valium will be stopped. Which leaves Caleigh on methadone which will take a little bit longer to wean. Caleigh seems more comfortable and she isn't hurting in between doses as much as before.

And the best news of all.....I can't believe I waited this long into a post to type this.......Caleigh had her first poopie diaper since surgery! It's a sign that things are moving along and we are so excited. Yes.....we are still super stoked about dirty diapers. That's one thing that hasn't changed in the past 10 months.........

A lot of people have asked about Caleigh's future with eating and foods in general. Right now we aren't feeding her anything until we do a contrast study to make sure there aren't any leaks. As far as the future goes, it is unfortunately still an unknown at this point. We are praying that Caleigh is off TPN by her first birthday, but we just don't know what will happen. This is a 'what if' scenario.......if and when Caleigh's small intestines work correctly and we are able to advance her feeds to enough calories per hour to sustain weight then we will try to bolus or feed every 2 to 3 hours, like a normal baby. Then we will try to introduce solids in an order that is right for her intestines to absorb the nutrients. This will all be done through Caleigh's g-button, everything pureed to liquid form. At some point we will take Caleigh to do a swallow study to see how well she can swallow liquids. If she does well we will start foods by mouth but Caleigh will need a lot of speech therapy to help her overcome her oral aversion. That is a 'what if' situation and I'm sure it won't go completely as planned. Caleigh will always have issues with food. On what level we aren't sure, but as for right now, we are all praying for birthday cake in celebration of Caleigh's 1st Birthday!
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