Home for the 4th of July

Last Sunday, June 29th, 6 months to the day from Michael’s initial diagnosis and 14 days into what was supposed to be a 3 to 4 day hospital stay, Michael was put back on the full dose of the Blinatumomab (Blin). He was also put on an anti-seizure medication called Kepra to help prevent the side effects that he had experienced previously with the Blin. Everything went smoothly Sunday evening as expected with one exception. Within minutes of Michael going to bed, the pump would began beeping and indicating that there was a blockage somewhere in the PICC line. Michael and I tried to figure it out by making sure his arm was strait and repositioning him in the bed. The pump quit beeping and resumed functioning as normal….for a few minutes. That process would repeat itself 5 times throughout the course of the night. After the second time, we called Michael’s nurse. After struggling to figure out why the pump was behaving the way it was, she called her supervisor. The two nurses would visit us several times that night.

Monday through Wednesday were relatively uneventful. Michael tolerated the full dose of the Blin well. We were a little nervous about transitioning to a new team on Monday (in inpatient care, the team shift goes from Monday through Sunday). We had enjoyed having our primary physician, Dr. Walling as the attending physician on the inpatient team for the last week. But there can be breakdowns in communication sometimes when the team changes for the next week. However, Monday morning another familiar face walked through our door when the team arrived. We were encouraged to see our fellow, Dr. Delap walking in and hear that it was her week to be on the inpatient team. Dr. Delap works hand in hand with Dr. Walling and is the doctor that we have the most face time with on the outpatient side. Her presence on the team instantly relieved my concerns. Throughout the next few days, the attending physician allowed Dr. Delap to lead the team meetings and encouraged her to touch base with Dr. Walling on our progress.

The one issue that kept rearing its ugly head was the pump malfunction during the night. On Monday and Tuesday nights we didn’t get much sleep. I lost count of the number of times that the pump alarmed. At one point, one of the nurses called the pump manufacturer’s 24 hour support line at 3:00 in the morning and asked for help. After spending 20 minutes on the phone with the manufacturer rep, the pump was still beeping. The nurses decided to switch out the pump. And the new pump almost immediately started beeping as well.

Ironically, we noticed that the pump never alarmed when Michael was sitting in bed in a propped up position. It was only when he reclined the bed to the flat position that the pump started having issues. On Wednesday evening, Michael decided to try to sleep in a propped up position. That night the pump only alarmed once.

On Thursday morning, we met with the team and were informed that as planned, we would be going home that day. Michael was doing well by every measure. And we were excited for him to finally be going home after 18 days in the hospital. After several delays (getting discharged from the hospital always seems to take far longer than it should) we were finally discharged about 2:00 PM and headed home.

It was such a blessing to finally have the whole family back together, if only for a few days. (The younger three kids head to summer camp today). Michael and I arrived home Thursday evening to find the younger three kids in the pool. They had spent a lot of time in the pool the previous three days and absolutely love it! Putting that pool in has been one of the better decisions that Sarah and I have recently made. That evening, we celebrated Michael’s coming home from the hospital with one of his favorite meals: shrimp fried rice, and fireworks at Uptown Bay City that night.

Friday, July 4th was a day spent relaxing by and in the pool, grilling burgers and hot dogs, and spending time with family and friends. Saturday was a low-key day. The boys and I finished putting up the last gate on the fence in the morning. And to be honest, a don’t remember much about the rest of the day. It was such a blessing for Michael to be back in church with us on Sunday. While he has been on the Blin, his blood counts continue to be the highest they have been since his diagnosis. So, for the first time in months, Michael attended both Sunday School and church. Sunday evening was spent packing the kids up for camp, and today finds me back in Ann Arbor with Michael on the outpatient side of the 7th floor at Mott. We are currently waiting for our normal doctor’s appointment followed by a short time in infusion for the pump batteries to be changed, and new bag of Blin to be put in the pump and Michael’s PICC line dressing to be changed.

For some reason the issues with Michael’s pump at night seem to have completely resolved themselves. We suspect the issue was with a filter on the line from the pump that they have on the inpatient bags of blin but not the outpatient bags (for reasons that I do not totally understand). We are looking forward to another great week, before Michael gets the PICC line and the pump removed next Monday.