Saturday, June 30, 2012
A Day in the Life of our Family Post-Transplant
I am sitting in the very same room that Gabriel entered the day of his transplant. This room is shadowed with much pain from the first few weeks post-transplant. This journey post-transplant, had many facets that caused us and the team to be concerned. BUT, God delivered us faithfully as his Word instructs. I had shared in my previous post that I was not certain of the days ahead, but I trust my Father in heaven to continue protecting my son. We are sitting in this room once again as my son's CMV has reactivated. We are thankful for the efficiency and knowledge of Sick Kids to ensure Gabriel receives expedient care. We are disappointed to be here so soon after discharge that are also compounded with the memories of this room. Perhaps, it is a place I need to be as means to heal and move forward beyond the horrors of this room. My son is sitting beside me laughing and playing, which is a contrast of his behavior from only two weeks ago. I am thankful for how far we have come when I think about where we started so long ago in February of 2009. My three year fighting cancer at diagnosis to relapse and fighting cancer again. He has now received a new marrow that gives him a renewed life of physical health. Mike and I have gone through many nights of fearing the death of our son to realizing that we have to trust in God's scriptures that healing is ours when we have faith to believe. Today, our journey continues with uncertainty based upon the unknown realities of this journey. Gabriel's vulnerability to minor infections can place him at a high risk. Our goal for the next six months to one year is to protect him. I wanted to take this opportunity to share what our life looks like while living at Ronald McDonald house and when we return home. I know there are many people who hear the words "discharge" and believe that all is completed in this journey. Perhaps, even the assumption that Ronald McDonald house is like a long term vacation for our family. I thought it would be helpful to provide a perspective of daily life and the future. The doctors keep advising us that everything takes time. Time...we know this word well as it also coincides with the word "waiting." These two words continue to be the theme describing this journey. Our Life... Upon discharge from the hospital means his care is transferred to home care nursing and to mom nursing (my new role). Gabriel has a nurse that comes into our apartment twice a day. In the morning she sets up IV antibiotic to ensure the lung infiltrates are gone, which was from the concern with pneumonia. This IV antibiotic will last for another 30 days. Gabriel has high blood pressure that he receives medication for in the evening, so he requires blood pressure monitoring three times a day. Once his med runs over the hour the nurse leaves and returns in the evening to connect Gabriel to his IV once again for 12 hours of IV hydration. Gabriel's eating and drinking has not normalized at this stage. Gabriel was not drinking or eating for over three weeks, so his body has to reaestablish itself again to this process. IV hydration assists with the fluids he is currently lacking. Gabriel receives numerous medications both in the morning and evening to prevent further complication of GVHD (see previous post for explanation of GVHD). He also receives preventative meds for infections that can be life threatening if he was to contract such infections. In addition to Gabriel's transferred medical care to the house we have to avoid exposure to anyone we do not know. The other difficult aspect of this journey is Gabriel cannot be indoors in large family gatherings as the infection risk is too high. So, transplant has been complete and engraftment has started, but Gabriel's body still does not recognize the new marrow as his cells. His body is still fighting to kill these new cells, so the medications he receives causes his suppression of his immune system to allow the new ones to move in and take over. This is why GVHD is present. As a result, the team cannot determine what the future holds, but is ready to respond when they have any visible signs of complication. Today is an example of the unpredictable nature of this journey as we are admitted so soon after discharge because of a virus that has began to be reactivated and if not caughht soon enou could be fatal. Gabriel's bloodwork started to show signs of reactivation of CMV (explanation in previous post), and the team wants to treat as soon as possible before complications ensue. This virus is checked every Monday because of the severity and commonality of this virus among BMT patients for those who were positive prior to transplant. Even though medical care continues even after discharge I am ecstatic about being together with the people that matter the most to me in this world. My husband and my three children can be a family together no matter what life throws at us. We are happy just to be together as long as we are together. Yesterday, we played hide and seek in the Jays room (indoor gym at Ronald McDonald house) with the lights out. I have not laughed so hard in a long time. Just my family playing silly hide and go seek. It was perfect... My New Role I never envisioned that another hat I would wear was to be a participant in my son's medical care. I was instructed to take Gabriel's blood pressure manually, which is very interesting. I have used electronic blood pressure monitors, but 8b prefers manual blood pressure as it is more accurate. I was given a crash course and I am beginning to feel confident. I have learned to provide IV hydration, to flush and heparinize Gabriel's Hickman. I woke this morning to stop his IV and to take care of his central line. Finally, if Gabriel's blood pressure is too high then I have to determine if he needs a nifedipine, which is medicine placed under his tongue that drops his blood pressure very quickly. I have to make sure Gabriel's blood pressure meets his criteria to be given this medication. At this time I am working at trying to get Gabriel used to his dad taking on some of these roles. Gabriel has wanted only me to provide this care, but we are trying to help Gabriel feel secure knowing daddy is just as good as mommy. The Future I explained above a few details as to the future about protecting Gabriel from infections and the risk of GVHD. Our criteria given by the hospital for assessing infections and visits is based upon a household being seven days without any symptoms, which includes colds. If one person is sick in a household then we cannot visit with anyone in that household. This will be the hardest part for Mike and I as it seems more stringent than our previous concerns when Gabriel had neutropenia (low counts to fight infections). This will not be forever is what encourages us. The concerns decrease the further we are from his transplant day. The milestones (the ones we celebrate) carry on starting from 2009, and this is just another path in this journey that also has completion dates that we can celebrate. One day we will have a huge celebration for our son. A celebration for a renewed life...a celebration to say thank you to everyone who have supported us....and a big party as a way to give back. We look forward to meeting people who have supported us and reconnecting with others we have not seen and spending time with you all at a wonderful day of celebration. One day soon this will be here.... Thank you for reading and following our journey.