I am again sitting here, in front the computer, trying to figure out how to capture our last few days. One because a lot has happened, and one because I just don't know how. But, will try as I know so many of you are searching for an update and information on our favorite Gabby.
Pain, it is such a pain. A pain to control, a pain to figure out where it is coming from, and a pain to come up with a safe plan that works and helps. Gabby's pain had been increasing over the early days of the week last week, so we came to the conclusion that the dilaudid drip was our best bet. So, in comes pain team (since went there is an infusion, they take over the management of the dosing. Pain team is staffed by Anesthesiologists) to discuss our transition to the drip vs doses. I was anxious for this change, knowing Gabby's sensitivity to these things, but it was the next step in our treatment. So, I meet a member of the team early in the day. She came in and I felt she didn't seem to be interested much in what I had to say. My typical experience with the team was, "Let's get this present pain under control and then form our plan." Long story short, though I thought I had strongly mentioned Gabby's sensitivity to these types of medications, she was started on a drip that was under the previous day's average. I am to understand now, that is typical practice, but again....I informed them Gabby was not typical. The hope is a constant dose benefits the pain treatment at a lower dose vs bolus doses that come and go. That make sense for most, but not here. We saw an increase in pain very quickly and we lost some ground when the IV was suspicious and we had to pause the drip. As SOON as you get behind on pain, playing catch up is a no win situation. She began having more seizures, which made the pain worse, which made us give more meds.....I feel you can see the pattern. By the afternoon we had the team in here again. I was upset that we were so behind, and again I was hoping they would address the pain she was in at that moment, vs the whole plan. All that was accomplished was a small raise in her bolus doses. As the day went on, she became not only more tired from the seizures and stiffness, but all the meds were catching up to her. That night they called and RRT (rapid response team) to come assess her since her breathing was slowing but her heart rate was high and her oxygen saturation (O2 sats) was drifting lower. The RR Team has a Respiratory Therapist, the ICU doctor, an experienced ICU Nurse (risk nurse) and our Medical attending doctor. Needless to say, they were all concerned. We tried a seizure med bolus and I asked for the nasal trumpet (A little tube that went up her nose to keep her airway open) As soon as we got those in she relaxed. Due to the amount of medications she had received, and her rate of breathing being so low, we checked her Co2 in her blood and it was high....she wasn't breathing off the Co2 with the shallow slow breathing. We were about to be sent to the ICU for support. I was a wreck. I felt so betrayed by the pain team, I felt so betrayed by life at that moment, and so terrified if she went up to the PICU......would she ever come out. And that thought scared me the most. The team that was in here that night, those lovely, strong, compassionate people, did EVERYTHING they could to keep here down here on the floor....and it worked. Her Co2 levels did raise a little more, but she was stable. Soon as the 2am blood work was back that we could stay with our nurse (who's passion is critical care kids and will be an ICU nurse as of next month!) and on the floor I relaxed. Everyone had the same goal, and they were so supportive of me. I finally fell asleep too.
The next day we were going back to the OR to get a double PICC line to run her nutrition and meds in the one port vs all the little IVs that are so precarious. We all were a little worried with the anesthesia again, but she was looking up. PICC placement went well, but post op had some issues. We were called down there to assess her. She was shivering and had a high heart rate....and her breathing was loud. Oh man, I was so worried. Then the Dr's wanted to check that Co2 again. I almost lost my lunch. I didn't realize I was SO worried about that until it came up again and again we were faced with a trip to the ICU. All I remember is staring at the Drs, around this little machine that reads the blood gas, and not breathing myself....until finally the Dr held a thumbs up. The tears just flew and I almost lost my footing. So much relief in that moment. Since then we are having better days overall. Breakthrough pain is being managed well and I am feeling better heard by the pain team.
Speaking of pain team, I did request a conversation with the Attending the next morning, especially since I was so strongly vocal the night before about how I felt about her pain management, she needed to hear it from me. The conversation went great, I felt heard and they had an opportunity to see where they fell short...sadly at the expense of Gabby and almost causing the ICU visit. I mean, it can't be 100% proven that the mismanagement is the cause, but I knew in my heart it was. The dr was kind, and thoughtful, and listened and agreed that I didn't seem heard. She was remorseful and apooigized, noting we should have done more earlier on to control it, but pain meds are scary.....that fine line between too much and not enough is an intricate dance, and a very tough dance to learn. She said in the afternoon she was concerned about Gabby's respiratory rate, and I stopped her there and asked why wasn't I informed of that? That was an important piece of information that would have definitely altered my feelings and actions for the day. I believe that was a learning moment for her, and she thanked me for the honesty and said they are always learning. I do believe her. Since our talk, which we thanked each other for later on in the day again, things have been back to where I feel they should be. We, thanks to AMAZING people, avoided the ICU, have her double PICC line in, and her pain is no longer being a pain.
Sorry this is so long. I have been quiet and that makes people worried, and I have told this story so many times that I just couldn't anymore. So, I hope this helps update the major information. It helps me to write it out too. To read it myself and work through those fears of that night....of the ICU and what is could mean. They said one night for support and work off the extra meds, but I saw what felt like forever....... and in the end we all won.
