Lu and her G Tube

Whoever it was that invented the G Tube deserves a great big smackeroo on the lips from this grateful Mom.  I won’t lie, this past week was terrifying. And each day Lu’s surgery was delayed by her RSV I couldn’t help wondering if this was really one last chance for me to call it all off. Was it really the right thing? Did it really have to be so drastic? I wanted to help her, but here we were about to have someone install a semi-permanent hole in her body, right into her stomach. How much was that going to hurt? How long would it take her to heal? How well would it work? How hard would it be? But the more we talked to all of the wonderful Docs and staff at Phoenix Children’s Hospital, the more we were convinced that this was the right choice for Lu. Things were past the point of us hoping she would come around and start eating. The time for action had come. G Tube time.

Lu was admitted to the ER on Monday and tested positive for RSV. This put her up in the isolation ward (after waiting in the ER for about 10 hours to get a bed) where everyone had to wear masks and full gowns around her all the time (except for us of course because we were already contaminated) which I think freaked her out a little bit. What kid wouldn’t be freaked out by a bunch of masked and yellow gowned grown ups sticking them with needles and putting cuffs on them that suddenly inflated and put pressure on their legs and put little lit up bits of tape that glowed on their fingers and toes periodically? I probably would have been freaked out too.

She was really dehydrated and low on nourishment when we checked in so she submitted to most of the prelims with some protest, but calmed down and cuddled with me in between each round of testing, questioning, and vitals taking. 

I was amazed at the ease with which the staff got her first IV in. It took just a moment to get the needle in then on went the arm supporter and all kinds of tape. Because she tends to try to get IVs out they end up taping it up so much it looks like she has her arm in a cast.

Tuesday was spent in debate, everyone trying to decide whether or not to go forward with her procedures or get her in better shape and discharge her until she got over the RSV. It was a tough call. Her resistance was extra low from being sick, but I was also afraid of being sent home with no reliable way to feed her. In the end it was decided that she would have her upper GI Barium Scope at 10:30am on Wed and that the surgery would be scheduled at 2pm pending the results on the upper GI.

The upper GI was tough. She had to drink a barium drink so they could watch it move through her system and she did not want to drink it and lie still under the imaging machine. After seeing her early resistance the radiologist wanted to cancel it. He thought it was too traumatic for her and suggested rescheduling it, but the whole point of the procedure was to make sure that there were no obstructions prior to the G Tube placement, so I didn’t see the point in doing it later if they really were going to put the G Tube in that night. So we did it. Tallulah spit so much of the barium out in fighting that she and I looked like we’d had a barium bath. But eventually it passed through her system without showing a twisted bowel or other obstruction.

And so on to the G Tube placement. Don’t you just love those release forms they make you sign in the hospital before they take your child away from you? The forms that outline all of the many horrible things that might happen and what they might have to do in the worst case senario?  My throat constricted and I clutched Tallulah to me as they read it out loud hoping she wouldn’t look up and see that I was crying. She didn’t. I signed. We cuddled until the anesthesia injected into her IV tube took hold and then they lifted her and took her away from me.

The surgery took a lot longer than they said it would. They said 30 mins. An hour later I was still waiting. Then another half hour. Worrying something went wrong. Just when I realized I hadn’t eaten in many many hours and got up to go grab something from a vending machine, the surgeon came out to tell me everything was ok. Thank goodness.

She opened her eyes a few times that evening/night, but mostly slept off the anesthesia. When she moaned in pain, they gave her morphine. She didn’t react well to this, slept too deeply, too hard and had some oxygen saturation level problems, which kept her in the hospital one extra day. (There was actually a really scary moment when her skin went grey, her lips went blue, the alarm was sounded and 6 people rushed in to her aid.)  

But finally, on Friday, they taught us how to do her feeds and let us take her to the hotel with us in the evening. Because of the scare we wanted to keep her close to the hospital for one more night before heading back up to Flagstaff.

When we got to the hotel Myffy was so happy to have her sister back. Myffy hadn’t seen Lu since she was admitted. All week long Stew and I had been doing shifts since Myffy wasn’t allowed in the hospital (because of RSV season) and Lu of course wasn’t allowed out. Every morning when Myffy woke up she would look around and say ‘Tu? Tu?’. Little Sweetheart. We were all so happy to have Tallulah back. My Mom drove down to Phoenix to stay with Myffy Thursday evening so that Stew and I could have some time together in the hospital with Lu to learn how to operate the equipment and feed her ourselves. Thanks Mom! That was a great help.

Since getting Lu back to Flagstaff things have mostly gone well. We had a scary setback when she started throwing up the tube fed food for a couple of days.  3 out of 5 feeds coming back up was alarming. This was our absolutely last resort for feeding her. If she couldn’t be tube fed, what could we possibly do? But after talking to the staff at the hospital we made some adjustments: smaller portions fed at a slower rate; and then when Myffy threw up twice in the days following we realized it may have actually been a mild stomach bug. Since then she has been handling her feeds well and even eating a few things by mouth: a pediasure pop here, a few potato chips (only potato, oil and salt on the ingredient list) there, a few pieces of popcorn and some juice. We’re trying to encourage her to still take at least a few things by mouth so that she doesn’t completely dissociate eating from nourishment and feeling full. But the most amazing thing about all of this is being able to feed her, really feed her, for the first time in ages, possibly since weaning. 

And I do feel that there has been a difference already. She's always been a happy girl, even through all of this trauma and trouble, but since getting these feedings she has seemed even happier. More clear eyed. More interested in the world around her. And even though she is in pain from the surgery (healing every day) hopefully the pain of her EE is lessening with each day that passes. 

I wanted to take a moment to say thank you to everyone who has written to express concern, send love, and asked how they can help. We really appreciate every bit of it. Dealing with special needs can sometimes be so isolating that even just an email or voice message, even when we aren’t able to immediately respond, means so much. Thank you for reading. Thank you for caring. Thank you for the outpouring of love and support. We’re all doing so much better for the love being sent. And we return it all, even if we don't have time to say so.  Thank you!