Retroactive

I really don't like to have to do more than one entry in the same day, but since the pump was being delivered on Wednesday and the appointment for the NG Tube was Thursday, I didn't have time to do it.

So, this is how Wednesday went. I received a phone call from the nurse who would be delivering the equipment around 10:40 a.m. She would be coming from Columbia, MD, and estimated it would take about 2 1/2 hours to get here. Over 4 hours later she finally arrived, and I was very stressed because we had been waiting for her to show up "any minute now" for over an hour and a half. We got the pump and received instruction on how to use it. The information was all theoretical since the appointment to determine what to put through the pump was the next day, but we got it and we're thankful we could take it with us. We left for DC about 45 minutes after the nurse left.

I had to call in a LOT of favors to go to DC. One neighbor would keep Robin and care for our puppy, another neighbor would keep our older dog, and Jack would stay with a friend on the way up the road. Not too bad for Wednesday, but Thursday the kids had swim team p.ractice from 5:30-6:30 and then Jack had Boy Scouts at 7. Obviously I needed for them to get to where they needed to be, and to have someone everywhere. In total, I made one of the most complex plan of actions to date. Thankfully the 6+ people I called on all understood that everything was set in gelatin, as firm as I could make it. Everyone was very flexible, and I didn't have to be concerned for the safety of Jack & Robin while we were gone. If you are reading this, and you are one of those people who I called to help, THANK YOU!!!

My sister, Kelly, once again opened her home to us to spend the night in the DC area vs. driving all the way from Southern Maryland on Thursday morning. As it was we left from Arlington at 8 a.m. and we were able to make it to Bethesda in time for the appointment. We first met with the nutritionist and made the plan for her to have 20% more Boost than she gets now, and to increase her additional fluids from 6-8oz to 20 oz. We were given the option to push some of the fluids through the tube, but were encouraged to give her as much orally as possible. Anything that she still needs is to be given through the night.

Following the appointment with the nutritionist we went to see the GI RN, "Luz". Let me just say that Luz has to be one of the very best nurses we've ever worked with. She was very patient and caring. Not to mention was so helpful teaching us how to insert the tube, in case we will need to do it at home. Olivia did very well with the tube insertion, as Luz had used a numbing gel and waitied for it to work. However, she started gagging soon after we were sent to x-ray. She began coughing and spitting up, which progressed as time passed. The x-ray did show that the tube was properly placed, but upon return to the GI department, the vomiting got worse. The attending GI doctor, Dr. Fernandez, had Luz pull the tube back about an inch, hoping that the vomiting and gagging would subside, but it did not.

It was decided that the NG Tube would not work for Olivia, as she was too sensitive to it, and so it was removed. We waited for an hour to ensure that she stopped vomiting, which she did after ten minutes. Now we will wait for a surgical consult to insert a G tube, and try to reach her feeding goals on our own.

Needless to say she was exhausted and LOVED getting home to her own bed. She had a great night's sleep, and seems to be happy to not have the annoying tube in her nose and throat. Honestly, I am thankful she doesn't have to have that, but I do wish that we did not have to use a G tube at all.

We should hopefully hear something next week with the plan to move forward. Until then.