Just When I Thought I Was Out…

They pull me back in!!!! Take a good look at this yellow tube on my face because after my surgery tomorrow these sweet cheeks will be naked and tape + tube – free.

We are indeed heading back to the hospital for a short in-patient stay. For the last few months the Transplant Team has been discussing the high likelihood of Hope needing a G-tube – which stands for gastrostomy tube and is a feeding tube inserted through the abdomen that delivers nutrition directly to the stomach. It’s one of the ways doctors can make sure kids with trouble eating get the fluid and calories they need to grow.

Hope has a wicked oral aversion. We’ve been working with speech daily while we were in-patient and weekly since discharge since Hopes transplant and it pains me to say it, but she won’t be able to eat orally for a long time. It’s not that she simply has a bad attitude and unwillingness to eat – this is so much more.

Her gag reflex – an uncontrollable response – is triggered when anything is put in her mouth. I’m sure most of us can imagine that it’s not exactly appetizing to be gagged to the point of vomiting right before eating. This happened even with what used to be her favorite pacifier. In the two and a half months since transplant Hope has dug her heels in and been practically unresponsive to efforts to eat orally. We can use a spoon and milk goes into her mouth, but she doesn’t have a coordinated ability to swallow so it’s more accidental oral feeding of maybe 2-3 mls from 20 mins of work. To put this in perspective, Hope needs close to 750 ml per day to continue to grow and this doesn’t include the 25 doses of meds per day that add up to quite a bit of volume on their own. So we came to a point of acceptance that the G-tube was not something Hope would be able to avoid.

What do I have to have done now???

It’s going to take years to build her skills with a speech pathologist and removing the NG tube might actually help with this in a few ways. First, she freaking hates the thing so she’ll be pulling at her face less often and she won’t have to scream at us while we shove the tube back down every time she manages to pull it out, so we benefit too. Though, we have become quite the pros at NG tube insertion/retaping. Pretty impressive work here, right?

Second, the tube is causing her to have pressure ulcers on her nose so those will finally be able to heal. Third, learning to swallow milk with a tube as large as your nostril in the back of your airway has to be a challenge – especially after spending two and a half months intubated and irritated with things in your airway. Lastly, this will allow the opening between her esophagus and stomach to fully close and there’s a chance that this could improve her reflux (or it could stay the same and she’s just a reflux-y baby). All in all, there are a lot more potential benefits to this than cons.

Let’s do this thing people!”

We went ahead and met with pediatric surgery this week so that we could get the procedure scheduled. We assumed scheduling would be somewhere in the range of 3-6 weeks out, but we were shocked when we called to schedule and were informed that May 3rd was the next available date!!! We happened to be at the hospital for labs that morning and bumped into the Director of the Transplant Institute at CCHMC. He stopped to chat and asked if there was anything he could do, to which John jokingly referred to pulling some strings to get the date moved earlier than May for the G-tube. To our surprise, Dr. Chin responded very positively and confidently – so much so that we were honestly confused as to whether he was serious or whether his sarcasm went right over our heads. We felt sure he was joking when we mentioned this to the Transplant Coordinators. We mentally moved on, having left a message to see if we could be put on the cancellation list and/or if they could get her in earlier. We didn’t know that Dr. Chin was, in fact, not joking and boy did he deliver! While we were at clinic today we found out that her G-tube moved from May 3rd to tomorrow – mic drop by Dr. Chin and Dr. Lortz who made all this happen so quickly. We had a little whiplash at how fast we went from months before getting in to see you tomorrow for surgery!

Enjoy some Hope paparazzi shots for now! Well share updates tomorrow as she progresses through the procedure.

12 thoughts on “Just When I Thought I Was Out…

  1. That is absolutely fantastic news that they are getting her in so quickly. That little Hope is a fighter for sure. She will be so much happier without that tube. I was thinking about you guys and praying this morning. I will continue to pray for a smooth surgery and Hope’s continual growth and improvement. Thinking and praying for you 3 often. Lots of love and hugs!

    Liked by 1 person

  2. I am so Happy for you all, & glad this is a “going forward” procedure!!!! Way to go John, got your Baby girl in sooner! Can’t wait to see pics with NO tubes!!! Prayers are with You ALL!

    Liked by 1 person

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