We learned early on that this trial would be a rollercoaster of emotions. We have been riding the top of the hill for quite some time and someone decided we were due to have a fall today. Angie called me at work around noon October 19th and was upset. Brianna could not keep food or drink down and Angie even had to do the Heimlich maneuver on her to dislodge some food that had gotten stuck. It is a hard feeling to hear your spouse crying on the other end of the phone as soon as you pick up. Your heart immediately sinks. I told her to settle down because I could not understand her at first but finally got the story from her.
I told her to call the oncology clinic at Riley and ask what we should do and then call me back. Unfortunately Riley has an on call nurse that you go through first and then you are connected to the doctor. Of course she took the info and told Angie to await the call from a doctor. Funny how timing works because Angie was helping Bri go to the bathroom when he called back and she missed the call. The voice mail that was left for her was to bring Bri into the clinic on Wednesday or Thursday. When Angie called and told me this we both said that this was not going to happen. How could we wait knowing she was having trouble swallowing? She was going to want a drink or some food and we were scared to give her anything now. She called back again and when she was able to fully explain the situation he told her to bring Bri to the outpatient center. Derek drove me home so that I could go with them and I spent the entire trip from Franklin praying for my daughter and my wife.
Ang had everything packed for us to leave. We don’t take chances anymore and we pack for an overnight stay automatically when Bri has to go in unscheduled. As I was trying to put Bri’s coat on her she folded her arms and shook her head no as she started to cry. The tears welled up in me too as I told her we had to go. We got her to the car and it was another of those gut wrenching drives with her in the back crying and Angie trying to comfort her. She held her mommy’s hand all the way to Riley. She definitely knows the way because as we got closer she began to whine more. This is the hardest part for us.
We arrived at Riley and reported to the Hem/Onc clinic where they checked her out quickly. The first thing that they wanted to do was get an MRI scan to look at the neck and then once they completed that they wanted a swallow study done. During the swallow study they give the patient drinks and food and watch it go down. Bri had been on thickened liquids since the very beginning of this nightmare and had not had trouble with anything until now. The scanning machine in the swallow study room has a camera on each side of the neck. There are monitors located in the room as well so the techs can watch the progress as they administer the test samples of liquids and solids. Angie sat close to Bri and helped balance her while I stood by the doors. We watched as they started out with the thickened liquid that we had been giving her for months. As she swallowed it went down her windpipe. They mixed up a thicker liquid. We watched as they poured a little bit in her mouth and it also went straight to the lungs. She had definitely been aspirating on her liquids for an unknown length of time. I looked into the faces of the techs as one looked at the other with mild concern on her face. They moved on to pudding. Nice, thick pudding. As they spooned a little into Bri’s mouth I alternated my gaze from the monitor to the faces of the techs. I think Angie and I both held our breath as Brianna moved the pudding in her mouth a little bit and then she swallowed. As I watched the pudding move towards the back and she swallowed it felt like someone punched me right in the throat. It went straight down the windpipe. The techs had a very evident look of disappointment on their faces and they stopped the test right then.
They explained to us that given the results of the test they had to suggest to the doctors that Bri not be permitted to have food or drink by mouth at this time. They did say that they thought she would be a candidate for a new study down the road but there was too much of a risk allowing her to eat or drink. We went up to fifth floor, or the Motel 6 as I have named it, and settled in for the night.
Bri’s oncologist stopped by on Thursday to talk about the MRI results. He informed us that the tumor did not look like it had grown any but it looked like it flattened out. He also explained that it looked like the outer area where the radiation killed the tumor had calcified and that was putting pressure on areas in the throat including some nerves. This information from the MRI along with the results of the swallow study forced a decision to insert a feeding tube. The surgery was scheduled for Friday. Since Bri had not eaten in over 24 hours they were going to insert an NG tube, a temporary tube that goes through the nose and passes the throat and ends dumping into the stomach. They would use this to provide her some nourishment until Friday. The nurses came in to insert the tube and had major troubles doing so. Angie had experience doing this as she did this many times when our granddaughter Jaelynn came home from the hospital and was fed through an NG tube for weeks. I thought Angie was going to knock the nurses out as attempt after attempt failed and Bri cried more and more. Finally they got it inserted and then they took us for an xray to make sure that the tube was placed in the right area. More on that next post……