On Christmas Eve, carols such as "Oh Holy Night" usually stir me to tears while singing with our church choir or listening amidst candle light in quiet prayer or worship. I have been unable to sing with my church choir due to Samuel's chronic health concerns and needs. Furthermore I was unable to go hear the beautiful sounds of our church choir for Christmas Eve services because Samuel fell ill Wednesday after I had worked so hard to maintain his health since our most recent hospital discharge only a week and a half before. But even though I was home bound for the holidays, I played Christmas CDs as usual to get into the spirit. Never before had I heard the lyrics and felt their meaning like this year.
"The thrill of hope the weary world rejoices, for yonder breaks a new and glorious morn. Fall on your knees and hear the angels' voices! Oh night divine.. Oh night that Christ was born."
I am on my knees and so thankful God sent his son to help guide us in living our lives His Way. I think of Mary on that night of His birth..in many ways not unlike any new mother. She could not fully know the role God had chosen for her life or how this one baby boy would change the world. I think of that night of light. Light from one northern star guiding the kings and shepherds to the One who would lead us through dark nights and show us the path. Our family is on a path right now of which we can't see enough far ahead to feel safe or secure but with Jesus at our side I know we have to trust Him and let him guide us.. and that has been the light shining through our Christmas season.. We know he has a path planned and will lead us. We just have to follow Him.
The last week or so was unique in that I had several more days of nurse aid at the house with Samuel and that was a blessing for sure...can't even put it into words. It is indescribable what it means to let go of some of those fears and all the medical data and duties and logistics for even a short time. She is incredibly capable and experienced with medically complex kids. She is detailed and very purposeful in her manner and care of Samuel along with her gentle and compassionate way of approaching him. On top of her experience she recently overcame pancreatic cancer in a most miraculous fashion and so certainly understands the side of being on the other side.
On Monday, I took Samuel for his 9 month well baby appt. We had skipped the 6 month vaccines while in the hospital and then had delayed out of concern over some conflicting research about the safety of administering vaccines to children that have mitochondrial disease. Without knowing if that is what Samuel's diagnosis will be, I was nervous to plunge forward without further research. What I found was most Drs agree that the risk of diseases that could have been avoided by taking the vaccine may be more dangerous than the suspected worsening of conditions or onset of autism reported by the families of these compromised mito children. It seems reasonable that the views of these families are correct, in that the already at-risk nature of their child's condition may make them vulnerable to the trigger and chain reaction effect started by being "down" on some bio- level due to the vaccines. So weighing all this out I decided maybe we would go slowly, start with only one or two vaccines at a time spread apart and possibly avoid the MMR for a longer period. That was before Sam got sick.. now I am thinking.. hmm maybe vaccines can wait longer.
Samuel had low grade temp monday afternoon and then a little heat at the site on his leg Tuesday morning. We did speech therapy Monday and Tuesday working with oral feeding and I always worry about aspiration when he sounds wet afterwords as he did with these sessions. But he seemed clear after short period upright. By Wednesday morning, he had a 101 fever, red cheeks and labored breathing. By that afternoon he was really having a tough time breathing and was running up to 102 fever or so which is very high for him. Amidst all his other medical issues, high fever is actually unusual for him. The Drs told us to treat Sam a little differently when it comes to treating pain and fever as with his dysautonomia symptoms, they are not entirely sure a temp reading is accurate to what is going on internally. By Thursday morning, he was struggling and the nurse was mainly holding him constantly as he was not able to sleep or come off the O2. I had done all of Jason's Christmas marketing stops on Wednesday with the girls all day in and out of offices and had promised a beach play date if they were good, so Thursday morning we went to the beach to trade Christmas gifts with their close friends. It was hard leaving Sam but I knew we only had the nurse for this finite time and the girls were starved for one on one time. It was beautiful weather and they had a nice time but by the time I got home Samuel was seemingly worse. The nurse had called his pediatrician and they wanted me to bring him in for a status check.
At that appt, she discovered more retracting and respiratory distress and his ear was infected as well again. More antibiotics and orders to keep him hydrated. He was tolerating feeds so I was hopeful that we could avoid another hospitalization, especially for Christmas. Our nurse offered to come Christmas morning and watch him so the girls could have some undivided attention and "normalcy". We finally took her up on it and that ended up being such a blessing. Samuel was ill to the point of moaning and struggling for air through most of Christmas Eve but seemed somewhat better Christmas morning, catching a little nap between periods of stress. The nurse left and we had to decide whether to join his parents for dinner down the road. We decided to do it because he seemed pretty stable but once we were over there a short time, he took a turn for the worst and it was not a comfortable visit for him.
I got really emotional as the girls jumped around enjoying presents from grandparents. They were so carefree. I remembered them at Sam's age on Christmas..completely different than his first Christmas experience. He was limp and moaning, gasping and weak. He was on O2 and pretty oblivious of anything. Then he stopped tolerating his feeding and was arching in agony. His GI system had finally gotten the message that the respiratory and ears were already feeling..this is the way of things for him as I am learning. Everything just shuts down like on the highway when one little bumper accident leads to a whole chain of accidents and traffic jams. I just want to get him on the shoulder of the road so he can drive on past to the next exit.. past all this mess.
We went home and he seemed a little better. I even tried to shoot a first Christmas picture. He was not much into that plan. We tried to make him comfortable and he finally fell asleep. It was a most difficult night however with several bradycardia events. In the morning, he needed O2 again and was having drastic color changes. He was in pain and then when trying to hold him, his face twitched and his eyes shifted back and forth in such a way that I was pretty sure it was a seizure. It was a tough morning and we were about to depart for the hospital when he fell asleep. We decided to back off on feeds and substitute with pedialyte. This seemed to help..he started breathing more evenly and actually had a good nap. We are still not sure what to do but I will definitely be paying a visit back to his Dr in the morning. One day at a time..for now I am just thankful the girls had a nice Christmas playing and singing and listening to beautiful carols filled with hope and promise for a new and glorious morn. God bless all the families struggling with grief or distance or illness this season. There is a beacon of light there to lead all of you as it is leading us each day.