So far, nothing is really jumping off the page, result-wise. I'm kind of hovering between panic and "that's just how she is and we will manage it." We might have gotten discharged yesterday, but then her Hemoglobin level dropped again, so they will likely do another lab today and transfuse her anyway. There was still hope we would bring her home later today or tomorrow, but Neely started throwing up again last night. Not sure how that affects things.
We've realized now that she seems to throw up whenever she is off of antibiotics (last dose Friday morning). Apparently, antibiotics improve motility of the gut and the positive side effect of her being on lots of antibiotics is that she can eat. I assume that GI will meet with us today about giving Neely some kind of low dose antibiotic or other med that will allow her to keep her food down. How that will affect her unused intestine remains to be seen. Her unused intestine has already flared up twice because one antibiotic allowed different strains of usually harmless bacteria to grow out of control. Such a balancing act, this kid.
We are already on "gut watch" anyway. Neely did GREAT at home for 6 days. She did not cry a lot. Did not seem to be in pain. She slept well, drank milk well, and was mostly cheerful. That was on antibiotics, though. The true test of what our next year will look like will be this following week. If her unused intestine starts to flare up again, then she will need to be on antibiotics all the time. Or the surgeon may decide to take her unused intestine out. This could be a problem for transplant because the blood vessel that's connected to this unused intestine will get smaller if it doesn't have a major organ to supply blood to. We need this blood vessel to be big and meaty for transplant. At least, I think that is what the surgeon said.
So here we are. If she doesn't get antibiotics, she will throw up and her unused intestine may flare up and make her very sick. If she gets sick, there is a risk that her central line (IV site) will get infected and she will need surgery to find another site. If she does get antibiotics, she can eat and possibly avoid intestinal infection, but long-term antibiotics are not great on the system (and her liver and kidney are already at risk to begin with). Oh ... and also, she's anemic.
We need to manage all this internal stuff and still deal with the external stuff, too. Her jejunostomy, her mucus fistula, her g-tube, her Broviac.
And then there is the developmental stuff. Her head circumference is small and she is underweight for her age (of course). How does this affect her developmentally? We have to work with her, give her lots of visual stimulation, lots of interaction, tummy time, etc. Since last Thursday (appt at developmental clinic), she has already improved so much. We work with her a lot on tummy time, grasping toys, and using her feet to push against us. She is becoming more vocal - lots of cooing and squeaking. I'm aware that she is smaller and probably a little behind developmentally, but at this point she does not seem to be unable to catch up. Since we don't have to spend much time changing poopy diapers and feeding her, we have a little extra time to just play. Playing with her is hard, though, because if you pick her up the wrong way, her ostomy bag can break and leak harsh digestive stuff all over her sensitive little skin. The kid loves interaction and snuggles, though. Her favorite position is on our left shoulder. There, she pretends to nuzzle our necks - it is just an excuse to scratch her face. Feels nice, though.
How could we do any of this without Josh's brother, JD? Oh my goodness. He is going to be such an amazing daddy someday. I feel bad that he is taking such a massive detour in his life for us, for our little girl. Neely will be absolutely inseparable from Uncle JD someday. While mommy and daddy sit around worrying (and lately, bickering) about her, Uncle JD is there with big smiles and seemingly infinite patience. He is awake longer than any human being should be on a daily basis. This past week, he seems to be awake from 9PM to 3PM the next day. He comes to Neely's appointments. He stays with her in the hospital, if needed. He is so focused on Neely, always thinking about her. He probably starts up conversations with strangers in the grocery store about ostomy care. We love him to death and will never be able to pay him back for this. He did mention wanting 4 kids someday, so I guess we owe him LOTS of babysitting.
JD and my mom handle the "day shift". This means taking care of Neely and crazy Laney. I'm sure my poor mama envisioned something much more fun for her retirement. She missed a high school reunion in Vegas after Neely's second admission to Dell. I know it meant a lot to her to go, but she did not hesitate when it came down to canceling the trip. Mama - thank you for helping with Neely, crazy "Waney", the dishes, keeping the house clean, and keeping the guys fed.
**Interrupting this post with a text I just got from Uncle JD**
Already asked her if she was ready to start ninja training for the morning ...she smiled so that's a yes to me. We're starting with ninja stretches and ninja stand-ups (not comedy, ninjas don't joke around about that sh*t), and doing ninja fist exercises the whole way through.
We're going to have to talk to her about smiling so darn much. Ninja attack mode is less intimidating with smiles. It must be the pirate side of her peeking out.
**OMG, he is too awesome. Okay, back to the post**
So anyway, we are back at Dell and I'm not sure how long it will be. I've jokingly (but not really) asked if we can just keep a locker at Dell because constantly packing a suitcase and lugging our stuff over there is not fun. Seriously, Dell, get on that. Lockers for repeat offenders.
We're on the 4th floor now, so it's a whole different set of nurses. They are great, but we miss Noor and Bryce. I wonder if it would be weird to go to the 3rd floor and say hi.
So, the not-great thing is that we're back in the hospital. The great thing is .........
WE GOT A CALL FROM PITTSBURGH!!!
They want to see Neely for evaluation, so we're planning for the week of October 8th. This is the next step in the game plan and we're super excited about it. They said it will be a week-long evaluation and we will have lots of classes and training to go through. There will be a fold-out couch in her room so we don't need to get a hotel room. Not sure if insurance will cover the flights to and from Pitt.
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| "The Plan" as helpfully outlined by Aunt Caty. |
Praying we are not in the hospital on the 8th.
More great things:
Caty came to see us in the hospital (2nd admission). We missed her so much! I hope she doesn't mind me posting this pic. We're officially calling her Aunt Caty from now on. Hope she doesn't mind that either.
Aunt Judy came to visit us again also!
Aunt Jenny and Grandma Elisabeth came to visit us when Neely was home.
There is a barbecue fundraiser for Miss Neely in San Marcos on September 22nd at 10AM. Please come join us at Texas Oncology for this event. Love and shout-outs for the Texas Oncology crew, Belinda N, and all the wonderful students at Texas State helping out for this event. Check out the beautiful flyers:
My friend Lindsay says she might have an autographed Spurs jersey that we can raffle off for Neelycakes. How cool is that???
It's amazing the way your friends and family step up in a crisis. We've had so many supportive calls, texts, emails, and shares on Facebook. We are so blessed. Thanks from the bottom of our hearts.
Miss Neely can sleep peacefully and smiley-faced because she's got an awesome circle of love surrounding her. Angels everywhere.
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