Hospice Roller Coaster

Macayla's weekend ended up worse than the week. She ran a fever on Saturday morning and we thought it could be the start of pneumonia from aspirating. Her chest xray came back negative and her urine, ears and sinuses were all clear as well. Her fever went away quickly and she even felt good Saturday afternoon.

Sunday evening was a different story. She started throwing up and would not stop and struggled to recover. Jennifer called me home from a Bible study because she couldn't get Macayla stabilized. Fortunately, Macayla recovered before I got home. But she started again shortly thereafter. With that spell, her breathing became labored and spastic. Her fever went to 103.2 and stayed there in spite of tylenol. Her blood pressure and pulse stayed elevated. Her breathing spasms also had a pattern of several quick, deep breaths followed by a spell of apnea. There is a medical name for this pattern, but I cannot remember it. With the spasms she moaned and sighed a lot and was very uncomfortable. So, we gave her morphine. We honestly thought it would be a while before we would ever have to use it. The morphine is to not only help with pain, but breathing spasms as well. Unfortunately, Macayla did not seem to respond at all to the morphine. Her fever continued with a little fluctuation up and down throughout the night. Her pulse stayed elevated. The spasms continued and more vomiting occurred around 2 or 3 a.m. Around 3:30 or 4 a.m. she finally seemed to calm down and the fever and spasms subsided. The pulse rate came down as well. She vomited once again around 8 a.m. but it was not as violent as the other times.

We honestly thought she was not going to be with us by morning. It was a hard night. But she settled down and pretty much slept all day. She has repeated the breathing pattern, but not had any more of the spasms. She made it through last night well and we all got to sleep. Hospice told us that children are hard to read in these situations. If an adult was doing what Macayla was doing, they would say the person was down to days or hours to live. But children can have these spells, bounce back for days or weeks and do it all again. It is a hospice roller coaster.

The cause of all these symptoms seems to be that her brain stem is being affected by the disease. Her hypothalamus could be causing the fevers and the brain stem is in charge of all the basic, automatic functions of our bodies. It controls breathing, heart, bladder, blood flow, etc. So, we are in uncharted territory now. Her symptoms have been changing on a weekly basis over the past couple of months. Some weeks bring big changes and some very minor. But she has not been in a real pattern or plateaued in her digression since Thanksgiving. It has been a steady decline.

Her birthday is coming up on Saturday and Jacob's is the following Saturday. She will be nine and he will be seven. For Macayla, there could be no better birthday than one in heaven, complete and whole. But my heart's desire is for her to celebrate it here. It's selfish, but I want her with us. A great friend reminded me that Jesus also prayed that He would not have to go to the cross. He endured it for the joy set before Him (see Hebrews), but He still prayed in the garden for another way. In the end He said, "Not mine, but Your will be done." Or as my friend said, "This is what I desire, but Father, You know best." So we will continue to pray for healing and comfort. We will also pray for continued peace no matter how Macayla is healed, with us or in heaven.