One step back

The night after Emma’s sleep lab test the medical team wanted to conduct a swallow test first thing in the morning. You may recall that Emma hadn’t eaten anything during the night and they wanted her “hungry” for the test Thursday morning so Erin didn’t feed her all morning.

Well, when Erin was finally able to offer our girl some food she PLOUGHED into it. I suspect all of the medical staff in the room likely took one big step backwards watching Emma go. They were all very impressed….

But, they also wanted to do a radioactive Barium swallow test to make sure that all that food was going down the right way. It didn’t taste too good in her formula and Emma tried everything she could think of to get it out. But Grandma Kathy persisted and down it went.

Emma getting ready for her Barium “treat”.

The x-rays showed that Emma was silently aspirating about half of all the liquids she was consuming. Half of what she was drinking was going into her lungs and not her tummy! That was extremely dangerous as it posed choking, aspiration and infection risks. It also explained why Emma hadn’t been able to put on any weight over the last few weeks.

The medical team explained the risks and the next step.

Emma would get a nasogastric tube. It’s basically a thin tube that goes up Emma’s nose, through her nasal cavity, down her throat, through her esophageal sphincter and into her stomach. So much for old “over the lips and through the gums….”.

They admitted Emma and Mark left work to join Emma, Erin and Grandma Kathy in the beautiful new Forest complex at Seattle Children’s Hospital. It would be Emma’s home for the next few nights. The team ran a few tests and then placed the NG-tube without too much trouble.

Since Emma was there for the weekend so they could monitor her NG-tube, they thought it would be a good idea to also fit her for her new bi-pap headgear so she could get used to it at the same time. Sounded like a good idea… at the time.

Emma wasn’t very impressed with the headgear, to say nothing of trying to sleep with the G-tube in place.

Emma after her first night wearing her bi-pap headgear and her new NG-tube.

Mark and Erin learned out to use the feeding pump and put in Emma’s NG-tube. It only has be changed every 30 days or so, but it’s not uncommon for a baby to yank it out.

Later on Saturday, Emma demonstrated how she can eat solid food while still sporting her NG-tube.

Grandma helping Emma eat.

And it tasted GREAT!

Later Emma hung out for a while in bed

Almost sitting up, with a bit of help from Dad.

Then relaxed in the cool hospital bathtub before getting ready for bed.

Emma with her cow, G-tube and strategically-place wash cloth.

The family was discharged on Sunday. They hauled all their new stuff home and all enjoyed a big sleep.

Emma is on a 12 hour drip at night and during the day has 3 bolus (meal-time) feedings that take about 30 minutes each. Emma has now had two nights on her new overnight feeding schedule and is already sleeping a lot better.

There’s a lot paraphernalia that goes with the NG-tube (bottom-left). 

Seattle Children’s Home Care will be visiting Emma sometime this week to bring her bi-pap machine and to get it all setup and calibrated for Emma’s use at night and for naps.

As all know, Emma is resilient and adaptive – she will do great with these new changes. We are grateful that for the most part the feeding tube and bi-pap are proactive preventive measures and that we aren’t in the position of having to add them to her care while she’s sick with a respiratory infection and reliant on them.

Wouldn’t ya know it… Yesterday Emma pulled out her feeding tube right in front of both of Mark and Erin. Erin successfully got it back in on the first attempt.

Erin’s learned a great trick. If she needs to leave Emma for a moment she puts a sock on Emma’s hand. It keeps her occupied for a few minutes wondering where her hand went and keeps her from yanking out her NG-tube.

The things you learn…. and the way we all adapt!