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August 24, 2019 - Perspective
When I began this journal, I promised that it may meander or seem topsy turvy at best. Today may be that day. It also serves me the opportunity to restate the main purpose of this journal is to provide a diary for sweet Mason to read at a later date. When the last chapter is written, I will have this bound in a hardback book for him to keep. Having just recently lost my Mama, it reinforces how special these words will be to him one day. The entire purpose is to provide Mason with clarity, confidence, and courage
When this week began, we were thrown the curve ball of Staph. I must say, the new antibiotics are working wonders. I feel much better. I have more energy and we just know that we have conquered that hiccup. We believe the Staph infection has been eradicated. It will require validation, but that will come.
On Thursday, Jamie and I gave Mason a big hug and a kiss as we put him on the bus to school. As soon as he was safely on his way, we began our journey to Atlanta for doctor appointments.
I must digress. We live approximately 5 - 5 1/2 hours away from Atlanta. On the days that we have to be in Atlanta, we are at the mercy of our family and friends to help us with Mason. Our pledge is to keep Mason's life as normal as possible, which means keeping him in school, keeping his life normal so that he can continue to flourish. We would not be able to do this without the family and friends who have stepped up to help us. Jamie and I are grateful and humbled by our "family" in Florida who have already taken Mason in or are waiting in the wings to assist. There are many of you. I can't tell you how comforting it is knowing the sheer number of friends and family who have texted and emailed asking what they can do to help us with Mason. Our heart is full. It brings great comfort to us to know that Mason will be taken care of as we work through my care. Our debt for this comfort is a debt that could never be properly paid, however this journey has given us perspective. We will pay this forward, when we are able, in ways that we can. That is a promise. Now back to the story...
Jamie and I made our way to Atlanta with haste. My first doctor appointment was at 1:30, so we didn't have minutes to spare. It is hard to believe that I had my second surgery 1 week ago and this was my follow-up. The doc needed to inspect the incision, monitor the drains, and overall check on his patient (me). It was a good visit! The incision is healing nicely. I suppose staples do help. They removed 1/2 of the staples (every other one). The remaining will come out next week. In addition, the Doc said the drain could come out! Yea for me!! Those drains are so pesky. Jamie gets tired (even though he won't admit it) of stripping them, draining them, and measuring the output. And I am totally over the drains. I'm over the drain in my body causing discomfort. I'm over having to make sure it is affixed to my clothing so that it doesn't pull and "come out on it's own". And I am particularly over having to endure the irrational thought that Nurse Jamie is going to reef on the drain like he does when he is using his "manly tools", accidentally pulling it out. Suffice it to say, we are both thrilled to say goodbye to the drain!
We do have one more hurdle, but I'm sure we will clear it. Next week, when we have the last of the staples removed, we also have to see an Infectious Disease doctor. There is something slightly unsettling about the term, "Infectious Disease Doctor". They will need to take a culture and confirm that the antibiotics have done there work. Ultimately, we need to make sure that I am cleared of the Staph infection. If the results confirm good news, which we are confident, then we are back on schedule with the Port placement on the 6th and chemo on the 9th. Progress!
So, as you are reading this long and winding post, you may have forgotten the title, "Perspective". Yesterday, Jamie and I learned a valuable lesson. As we were returning home from Atlanta, we had a sobering and frightening scare. We were just driving through Eufaula, Alabama when the school nurse called. Mason was in the clinic and was having a serious allergic reaction.
Now, that may seem innocuous to some, but let me put it in perspective. Mason is SEVERELY allergic to peanuts. I would say he is deathly allergic. He will go into anaphylactic shock if he ingests peanuts. This is something we have known since he was One. It is something that we have planned for and dealt with as a family. He has been in two emergency room visits due to peanut exposure. One was his first ingestion, the second was simply an innocent cross-contamination of serving utensils. It is scary and it is real. We never leave home without an Epi-Pen. The school has an Epi-Pen. Anyone who cares for Mason has an Epi-Pen. We truly live our life without this fact running our life, but it is always a known fact governing our life.
So, when the school nurse is on the phone saying your son has a rash all over his body, that he is very itchy, including his throat, pure panic takes over. It also doesn't help to know you are 2 1/2 hours away from the most precious being in your life. It was heart wrenching, gut wrenching - all of the wrenching's apply! So, what did we do - we immobilized via phone. As I spoke to the nurse, giving her permission to give him Benadryl to ease the itch, I also flew into investigative mode. What was his breathing like, was it labored, was he scratching his throat? Did he have nausea? Vomiting? I also needed to understand if this was truly was caused by peanut exposure or something environmental. It is important to note, Mason has never had this situation occur previously unless peanuts were involved. I needed to understand what was served at school lunch, what did he eat, were there snacks? With this type of reaction, time can be your enemy. Did Mason need his Epi-Pen and trip to the ER?
As I was speaking to nurse, the administrative office, and the cafeteria, Jamie was calling our dear friend, Aunt Chris. Not only is she a nurse, she is also always calm under pressure. She lives close to the school and made it there very quickly. She was able to inspect Mason for any bug bites (there were none) and also monitor his breathing. More importantly, she was able to ease his anxiety. It was very scary for him and his was very shaky. Thankfully, the Benadryl helped. Over time, the itching subsided and the rash dissipated. Chris brought Mason home and cared for him until we finally made it home.
We still do not know what caused his allergic reaction. It could have been residual peanut butter left on the lunchroom table from the previous student diner. It could have been something environmental on the playground - nothing to do with peanuts. We don't know. We do know that he did not go into anaphylactic shock. We are beyond thankful of that. Thank God! Many prayers were said yesterday and answered!
Perspective. We do know that while the journey that I am on may not be ideal or fun, it does not compare to the health and well-being of your children. In that moment, when we felt helpless knowing our child was suffering, he was the only thing that mattered. Everything else evaporated and really didn't matter. Drains, staph, staples, port, chemo, cancer - who cares! The only thing that mattered was that Mason was safe and okay. When we finally arrived home, we gave him big hugs and kisses. There was lots of snuggle time and hand holding. Life. Love. Family. Perspective.