Monday, April 29, 2013

Naomi's Feeding Tube Placement and MRI

Naomi had her MRI and her feeding tube placed a week ago tomorrow.  The whole procedure went very smoothly.  We packed the car Monday night so everything was ready to go Tuesday morning.  We got up early and got out the door with no trouble.  Naomi had no more incidents of stomach flu and her fever was gone.  Everything ran like clockwork. The drive to Pittsburgh was uneventful.  Traffic kept moving even though we were coming in during rush hour.

We checked in and waited only briefly until they called us back to prepare Naomi for anesthesia.  Naomi was in a good mood.  Rob's parents came to the hospital to help with Lydia so we were able to stay with Naomi until she was asleep.  She had her MRI first and then went directly up to the OR to have her feeding tube placed.  The feeding tube placement went perfectly.  We were able to get lunch while she was under, which helped pass the time.  They called us back when they got Naomi in to the PACU and we were there when she opened her eyes, at which point they transferred us to her room.

 She had a lovely corner room with beautiful views of the city and the 40th Street bridge that was right next to a little sunroom.  We were on the sixth floor, which has a playroom with a large koi fish tank, a large outdoor balcony garden and a beautiful library.  As soon as she got awake in her room I was able to crawl in her bed with her and we snuggled for about two hours while she got awake.  She awoke easily and with no crying.  Then we snuggled more and watched shows.  By 630pm Lydia had had it so she and I went to Auntie Sarah's house to stay the night.  Rob stayed in the hospital with Naomi.  He took he for a walk around the sixth floor that evening and out to the balcony garden, which she loved.  She slept well that night and was up at about her usual time.  She and Daddy went for another little walk around the hospital and got Daddy some coffee.  She also pulled her IV out of her hand.  Not purposefully, but Naomi plays with her hands alot and it came out in the process of her playing with her hands while she watched more shows.  She watched a lot of shows in the hospital.  In fact, she told me with her flashcards when we got home that she liked being in the hospital and wanted to stay because she got to watch a lot of shows and she thinks she should get to watch that many shows at home too.

They started running pedialyte through her tube that morning to make sure it was working and that she tolerated its use.  It went really well.  Lydia and I got to the hospital around 930am.  Naomi was glad to see us, or at least me.   Lydia brought her a little pink and white stuffed cat named Duchess that Naomi really likes.  (She says kitties are her favorite animal.)  We were able to give her some juice bubbas and a Splash (her formula drink) bubba too. They ran a formula feed through her tube later that day and that also went swimmingly.  The process of placing and beginning to use a feeding tube is usually complex and drawn out but Naomi did so well that they accelerated all of it.  Jenn, Naomi's nanny, sent balloons and a little yellow bear. My parents came for a few hours in the early afternoon, then Rob's parents came in the late afternoon.  Rob and I were able to leave (with Lydia) for dinner, which was nice.  Then Auntie Sarah, Uncle Brent, Grace and Margot came to visit in the evening and brought Naomi two more ballons, a heart ballon and a My Little Pony balloon which Margot had to keep reminding herself was not for her.  Lydia and I got back to Sarah's house around 8pm and Rob stayed with Naomi again in the hospital.  She had another good night and woke up happy and like her usual self.  There were more walks around the hospital, Lydia got back down there around 10am and we continued to progress rapidly through the feeding tube protocol.  Rob's parents came again to entertain Lydia.  We were ready to be discharged by early afternoon and would have been home by 4pm except for a major SNAFU with the medical equipment company that was supposed to come to the hospital to deliver her feeding pump and other supplies.  As it was, we got home at 730pm, all drained and exhausted and the medical supply company had someone drive over the equipment the next morning.

It was very good to be home.  There were flowers and a unicorn pillow pet on the kitchen table to greet us from our lovely housekeeper Lisa.  We enjoyed our regular evening routine, other than Naomi's bath, and were all in bed at our usual time.  Unfortunately, all the time in the hospital and poor naps, etc, has both children off of their schedules so they are both waking up too early, but hopefully that will resolve in the next week or so.  Naomi still has some restrictions, she can't take a tub bath for another week, but after that she will be able to do all of the things she normally does.  We have been working on getting a routine in place for cleaning and maintaining her tube.

We spent yesterday over at Grandma and Poppa with all of Naomi's cousins and she took a long nap so she was off her usual eating and drinking schedule by last evening.  Normally we would have been stressed at how we were going to get all of those calories and all of that fluid in to her by bed time, but instead we just hooked her up to her feeding pump while she watched a show and she got everything she needed easily and without incident.  It was so completely not stressful at all.  We do need to be careful the next two months that it doesn't get pulled out and that the stoma heals well, so that produces a little anxiety, for me at least.  If it comes out within the first two months we have to go back to Children's Hospital Pittsburgh to have it replaced.  After that, we will be taught how to change and replace her tube so it will be less of an issue then.  We also have to wait two months to start the blenderized diet, at which point I will meet with a dietician to work out a plan.  So all in all, it went as well, or even better than we could have possible hoped.  And, we got good news Friday morning about Naomi's MRI results.  Her MRI is unchanged from the last one she had in July 2010, which was unchanged from the first one she had in February 2009.  So her brain remains healthy!  No atrophy yet, which we hope means we will have a lot more time to enjoy our beautiful Naomi just as she is and always has been.
Waiting to be called back for anesthesia

Relaxing back in pre-op and waiting to be called for her MRI

Naomi fell asleep waiting!

And stayed asleep while we dressed her in her scrubs for her procedures

All done!  Naomi in the PACU

Mommy and Naomi during their two hour post operative snuggle

Naomi out for her walk with Daddy Tuesday night

Enjoying the Pittsburgh skyline with Daddy on the 6th floor balcony garden

Relaxed and watching a show before bed

Asleep for the night with Duchess and Clementine
Nana and Grampy entertaining Lydia at the hospital

Naomi showing off her new feeding tube

Back home Friday morning getting in to our old routines

Naomi having her first home tube feeding Sunday night

Up close on Naomi's feeding tube.  Her cousins were curious.  Still some bandages from the laproscopic entry site and adhesive gunk stuck to her belly

Naomi being silly when I asked her to smile pretty for the camera

Just for fun:  Lydia found the iPad!  She seems to be saying "Ohhh!  What's this?"


  1. Wonderful! Fingers crossed for a good summer with all the kids!

    1. Reallky looking forward to it. Lots of time in the pool!

  2. She is SUCH a pretty girl. So glad things went well for all of you.

  3. People on feeding tubes can have real food too.

  4. It was such a great feeling when we were able to get our child on a corpak feeding tube after things were really looking bleak. I hope all is going well with you now