The past few days have been a little rough. On Friday morning, Aiden’s sedation medications were turned off. He woke up a little later and his breathing tube was removed. The whole extubation process went well. It was the withdrawal process that we were not fully prepared for; though we were told it would be a trying course. Dr. Futterman and Dr. Vish, pediatric critical care physicians, said that many parents of critical care patients have a harder time dealing with withdrawal than the severe illness that brought in their child – at least in the short term. To help combat the symptoms of withdrawal, Aiden was given medication every three hours. Special consideration is taken during this time because every child is different – there is no standard course of action to dictate amount, frequency, and duration of these drugs.
Chris and I stayed up all Friday night to do our best to comfort Aiden. We experienced a few very difficult moments but were able to make it through with the support of the night nurses, residents and doctors. Symptoms of withdrawal may include, but are not limited to, fever, yawning, hand and leg movements, sleeplessness, mouth movements, gagging and diarrhea. Aiden experienced all of these indications but, at the time, his fever elicited the greatest concern.
Early Friday morning, before extubation, a sign was hung on Aiden’s door to highlight his neutropenic status. Neutropenia is a common side effect of Dactinomycin, one of the chemotherapy drugs he received during his first round of treatment. Neutropenia is characterized by a very low white blood cell count. The neutrophils found in white blood cells help our bodies ward off infections by destroying bacteria found in our blood. About a week after receiving Dactinomycin, Aiden’s white blood cell count began to significantly drop and have now reached zero. Special precautions have to be taken during this time to ensure that he does not come in contact with any bacteria or infectious people. He will probably be neutropenic until the end of the week. This will continue to occur about once a month for about a week or two following each Dactinomycin treatment.
Since Aiden started a fever on Friday, antibiotics were administered immediately. Low temperatures as well as high temperatures, even those only slightly above the norm are worrisome when a person does not possess the necessary white blood cells to combat illness. Aiden was immediately started on two strong antibiotics. Even though his fever may be withdrawal induced, we do not want to take any chances. Blood work was sent to the lab to test for bacteria but takes at least 24-48 hours for results.
By Sunday, Aiden really started to come out of withdrawal. He had been up for 50 hours straight and at around 2:45 in the afternoon, he finally decided to sleep. He actually slept well into the evening and awoke with a smile on his face. Chris and I were elated to see the sweet gummy grin! He is continuing to do well, though, he currently has another fever. As long as he remains stable today we will be moving to the HEM/ONC floor tonight! They deal with neutropenic fevers often so we do not have to stay in the PICU to tackle that obstacle.
Thank you again for all of the encouragement, even when we are a bit unreachable. We look at the prayer circle and websites often - all of your kind words and prayers comfort us when we start to become a bit overwhelmed. Also, thank you all for understanding that we cannot have visitors right now, even when we move to HEM/ONC. Aiden is just too susceptible to germs. Once his counts start to go up and we get more instruction from oncology we will let everyone know. I want to also take a moment to thank everyone who has set up various fundraisers for Aiden. The support and outreach is amazing and we will forever be indebted to you all for your generosity and caring attention.
We are continuing to move forward and stay as positive as possible. We pray for Aiden’s swift recovery and strength throughout treatment. Please keep him in your prayers as well. Thanks again for everything.
Leslie and Chris
Facebook: Aiden’s Prayer Circle