Recovery on the Ward
I am writing this morning from the hospital. Much of the intensity of last week continued into this week – until yesterday. Yesterday, Sam was able to be disconnected from all the various lines used during this latest hospital stay.
This morning, my heart was filled with joy. It was such a simple thing: Sam got up walked to the bathroom and went back to bed falling back into a restful sleep. These simple actions were beautiful: they were in contrast to how the previous days had been; and they represented freedom and health for my boy.
Looking back
It is hard to believe that it is only day five since Sam had his latest surgery. Time has moved very slowly as Sam has had to endure new pains, discomforts, and continuous testing.
I am so glad that Sam had the surgery to remove the excess fluid from around his heart (pericardiocentesis). Once again the amazing staff at BC Children’s Hospital have saved Sam’s life and we cannot thank them enough.
What is not advertised with surgery is that recovery can take time – especially if there are any complications. The first night went well, but I think I will attribute that to the drugs that Sam was on.
By Saturday evening Sam was feeling gross/very uncomfortable. He has tolerated so much during this journey but he had a hard time with this procedure. The worst of it was that he had a wire tube in his chest and that the tube was sitting up against his heart. The tube was used to continue to drain additional fluid in effort to keep the pericardial effusion from returning. To complicate his medical picture following the surgery his fluid balance … went off.
This meant that he was swollen and puffy (e.g. swollen ankles and elbows). This was unexpected. Why this happened did not matter as much as the management of the issue – the team again did a great job of bringing his fluid balance back to normal (using IV medications).
It is very important to advocate for your child! The medical teams works hard trying to solve issues that they are seeing. As parents we see the big picture. We know what is normal for Sam and when things are not normal.
In particular, during this past week when it was Tina that drew attention to various symptoms that Sam was facing and requested appropriate intervention (i.e. suggesting the echocardiogram that identified the fluid buildup, and needed fluid management post surgery). Tina is awesome!
Each day following the surgery Sam would have one and sometimes two echocardiograms (a specialized ultrasound of the heart) to monitor how the fluid around his heart was resolving.
Freedom
Yesterday, metrics of healing were strong enough that Sam could be disconnected1. The drainage wire was pulled from his chest the hole was lightly bandaged. The wire was about 5 inches long with at least 1.5 inches were set against the side of his heart – no wonder Sam had been in such discomfort.
In addition, by the end of the day his fluid balance was looking much improved and he able to be disconnected from the IV pole overnight.
Support of family and friends
Our families have been here to support us. The Fricker family was here on Sunday. Nana has been staying at the RMH while Tina and I have been staying in-hospital with Sam. Uncle Dave and Aunt Ruth were able to see Sam yesterday, and Uncle Tom along with Daniel and Alex have been able to have a couple visits.
We have received numerous messages from friends letting us know that they continue to care for us. Thank you all for your continued support. We can’t imagine doing this without it.
Looking forward
It is not clear what all of our next steps are. The past couple of weeks have focused on very acute issues (i.e. stent surgery and pericardial fluid drainage). Though the cancer is likely involved in both of these it was not the focus of treatment.
In the days ahead I expect:
That Sam will be discharged and able to return to the Ronald McDonald House and that we will need to stay close to the hospital.
We will have clinic visits to monitor Sam’s post surgery progress.
Plans will be made to restart with immune therapy/ treatment of the cancer.
Victories and concerns
I think it is fair to say that we are all exhausted – physically, emotionally, spiritually.
Sam had fluid around his heart – a pericardial effusion. We are thankful that the surgery to drain all of the extra fluid went well. Recovery from this procedure was challenging but Sam has made it through again!
We are celebrate the success of Sam’s stent surgery (see here). The outcome was far better than we had hoped for resulting in a return to near-normal blood-flow!
The cancer has grown (based on August 2nd PET scan) and the
impacts of the disease are threatening Sam’s vascular system and thereby his life(stent surgery resolved the acute issue).Sam’s dosage of Nivolumab will be delayed until his heart issue is resolved.
Sam is on higher levels of Nivolumab. Side effects of this medication include fatigue and agitation of the liver. In the past we were not able to use this drug for numerous weeks due to liver inflammation. Current support medications are being used to reduce negative side effects.To date, the medicines and interventions that have been tried have not had any significant or lasting effect at controlling this disease. We need something that will work. We need a miracle.
It was amazing to see Sam join the Ness Lake Bible Camp team (July 28 - 31) . He served, ran, talked, played – he got to be fully there! Many thanks to the NLBC team who welcomed him in. When Sam needs to think of a happy place he returns here in his mind and he is quick to share stories of these days.
We are thankful to the medical team here at BC Childrens’ Hospital who have explained things incredibly well and who have worked professionally and confidently. Your clear communication, compassion, and medical care give us great confidence.
We are thankful for the gift of a place to stay so close to where Sam is receiving his care. The Ronald McDonald House (RMH) has provided us a home away from home. This place is an amazing example of charity at work.
Thankful for friends who have chosen to meet regularly to pray for Sam (we are also thankful for everyone praying for Sam whereever you are). If you would like to join them talk with Beth H., Krista C., or contact the Westwood Church office.
Thankful for such supportive family and friends caring for us all through this journey.
We long for the day when Sam is free of this disease.
Footnotes
metrics included: low discharge volume from drain the prior 12 and 24 hours, and results of an echocardiogram highlighting very little fluid still trapped in the area.↩︎