Scans and Such

We had Brynlee's scans the past two days, and I am exhausted. 

On Tuesday, we had Brynlee's MRI scan. We had to be at the hospital at 12:00, which meant I had to starve her all day. She was actually able to eat solids until 6 a.m. and drink clear liquid until 10 a.m., but she wasn't very interested in eating when i woke her up at 5:15 a.m. to try and feed her breakfast. It was a long morning, but we tried to break it up by running a few errands on the way to the hospital. 

As I have posted before, we have had some troubles with Brynlee's heart rate during sedation recovery since November. Every sedation medication has caused her heart rate to drop really low, and it happens when we are off of the scanner and in recovery. It usually happens when we are about 1-1/2 to 2 hours out from the time the sedation medication is given to Brynlee. This is the reason we had the cardiology consult last week, and this is part of the reason that I absolutely hate scans. When her heart rate drops, it is scary, it causes me anxiety worrying about it happening, and it is just plain stressful. 

So on Tuesday we had our usual pre-sedation meeting with the sedation nurse practitioner, who was someone I haven't worked with before. She decided to sedate Brynlee with Nembutol yet again and decided that she did not want to give Brynlee the Atropine that the cardiologist had suggested we give to her because it would wear off before the usual time when Brynlee's heart rate drops. As usual, Brynlee did great during the MRI scan and did okay in recovery until it was 5 minutes before the time she was to wake up, which was 2 hours out from the sedative being administered to her. The nurse came over and said we could start trying to wake her up in 5 minutes and then her heart rate dropped down to the 20s and stayed in the 20s and 30s for about a minute while we tried to wake her up. Once we got her awake, she was fine, as usual, and her heart rate jumped back up. 

Today we had Brynlee's MIBG, and we had the sedation nurse practitioner who we have worked with several times. She decided to give Brynlee the Nembutol again but tried a smaller dose and also added Ketamine, which has the effect of increasing the heart rate. We had a little bit of trouble getting Brynlee to fall asleep and had to give a little bit more Nembutol than we initially anticipated, but it finally worked. This time she was also given the Atropine as soon as we got to the recovery room. I don't know if the Atropine made the difference, but thankfully today Brynlee's heart rate never dropped below 80, and she actually woke up pretty pleasant. This was our last chance to make this work for Brynlee. I have been told that if we have trouble again that we would have to put Brynlee under general anesthesia for her scans, which is a lot more risky, and I really don't want to do that. 

We finally made it up to clinic after Brynlee had recovered from sedation, and we waited quite awhile to meet with the doctors. When we wait, I know that they are down meeting with the radiologists, which is either good or bad. Today it was good. Brynlee's tumors have not really changed in size since we scanned in March after her 2nd cycle of relapse chemo, so it was decided that we would stop chemo treatment at this point and begin the Accutane treatment. Dr. Fluchel asked me if I was opposed to leaving Brynlee's central line in for three months until we repeated the scans. I told him that we wanted it out because it is summer, we want to go swimming, and Brynlee hates her central line. She has a lot of anxiety anytime someone even tries to look at it. She also has had some goopy discharge coming out the last few days, so we had to have it cultured today in case there is an infection. He agreed that it would be reasonable to take it out and that the risk of infection with leaving it in is about the same as the risks involved with needing to put another one in if we have to resume chemo after the next scans in three months. So hopefully, we can get her Broviac out very, very soon. 

So overall, it was really a good day, a really long day, but a really good day. No more chemo, no heart rate drop, and we get the line out. 

We really appreciate the support that we have received these last three months. It's hard to explain the emotions that we feel, and I can't find the words, but for lack of better words, it has just been really, really difficult for us! We have always and will always live a little bit in fear of what the future holds. There is always that chance of recurrence or relapse. There is always the chance of a secondary cancer. There is always the worry of late effects from the chemotherapy treatment that she has received. And, who knows what physical problems we will face with the spinal cord injury and how we will manage the constant care and demands that we face with that! For now, however, we will do our best to keep moving forward and finding joy in the good things that we have. Even through two major life-changing events (cancer and a spinal cord injury), we have always recognized the blessings. We aren't sure how things will work out, but they will work out. Obviously things haven't gone exactly as we would have wanted or in the time frame or way that we have wanted, but we know everything will work out.