It has been quite some time since I last posted, and for that I apologize. I haven’t had the time to write the way I wanted to and since I can’t bring myself to write posts like “I know I haven’t posted in a while but I am really busy so I’ll catch up with you after the holidays 🙂 “, I just thought it every time I sat at my laptop. I have had so much going on in my head too but I wasn’t sure if it was holiday stuff or just my usual craziness. Right now I have a break between my presentation workload and thought to myself “Why not?”.
So….christmas was good. We were all together for the most part and no one was hospitalized. It was a tad emotional when I would see posts on the Boston Children’s of the great activities they put on to make hospital life easier during the holidays. One of them being the Boston Pops performing classic Christmas carols including a reading of the Night Before Christmas. Of course this year Patriot’s very own Gronk read it to the kids. Beats being inpatient as my husband keeps telling me. Speaking of which….I am going to start with my favorite topic: Boston Children’s Hospital.
I understand there are people out there who are subscribing to the conspiracy theory that Children’s is stealing custody from parents and kidnapping their children. Namely, one family in particular whose child diagnosis is in question. I am not a doctor and will not presume any knowledge on mitochondrial disease. I do know people whose children have it and know that it is a tricky disease to treat. What I do know, coming from a family of lawyers, is that NO hospital would EVER take on a liability such as reporting a family to Childrens’ Services without a GOOD REASON. It’s too expensive, it could cost them more than a few patients and most importantly, it goes against everything the hospital stands for. And I am SICK of seeing posts about it. Sick of seeing people freaking out, sick of peoples’ ignorance and really sick of reading abusive messages directed at the hospital, as if they read their twitter feeds and Facebook pages to make major decisions. If you are one of those parents who think the hospital is trying to kidnap children, well, you better find something else to read because frankly, I think you are an idiot. After months of reading these posts I just had to shout from the rooftops how much I have pushed back on hospital staff and we still have Izzie in spite of my ‘outgoing’ personality.
Boston Children’s hospital took my daughter’s broken heart, put a shunt in, created a hole in the atria, fixed a subclavian artery, created an aortic arch, took the shunt back down, and re-directed her blood flow so she could live. I got in those doctors’ and nurses faces when my instinct told me to. I participated in rounds and asked questions about next steps. I educated myself. Believe me when I tell you that there were days when my emotions got the better of me and my voice reflected my frustrations. I probably looked like I just stepped out of a trailer park some mornings. No one threatened me. No one told me that I was causing problems with treatment. If anything, Chris and I have been told NUMEROUS times that we are great advocates for our daughter because we do question, we insist on stopping tests when we felt it was too much for her. I will never forget during a barium study Isabelle was screaming to the point of her entire body turning purple and I turned to the staff and said “We are done NOW.” My favorite nurse was with us and she backed me up. They followed our cues. They did NOT tell us that we were wrong. So I will not make any apologies when I write back on twitter or Facebook with my guns blasting. Those of you who know me know that I am the opposite of shy, quiet and demure. And that’s ok. It has saved my daughter’s life. I have seen miracles walk the halls in there and I think until both sides are presented, the haters need to find something else to do.
I also have recently seen posts rating the attendees and staff on the cardiac floors. Ummm….what is this, ZAGATS? Sure, I have had to deal with nurses and doctors who drive me crazy but I don’t pass that on unless someone asks me PERSONALLY what my experience has been. I have never sent messages to people the night before their child is to have surgery and tell them bad things about their surgeon. I can’t imagine why anyone would do that personally, but I have heard of that happening. If you are having issues with the medical staff, take it up with them or perhaps a therapist. Don’t tell a parent who is in the process of preparing to hand over their child to a surgeon that their surgeon is a murderer. Common sense should tell you that, but I guess some people are lacking that as well. I know not everyone feels the way I do about Children’s, and I have toned it down where it counts, but when I hear that parents are terrified to question staff due to wrong information, then I just can’t keep it to myself.
I was looking at the calendar and saw that in two weeks we have a cardio appointment. 2014 will be the Year of the Fontan for us, beginning in the spring when she has her cath and sedated echo. It also marks our first year raising money for Boston Children’s Miles for Miracles. We have two runners assigned to Izzie and they don’t live too far from us. I cannot wait to meet her runners and have already started to make plans for her fundraiser (March 22 is the tentative date so mark your calendars!). We also participate in I Run 4 Michael program, and have an amazing runner named Lindsay Tritabaugh running for Izzie in Minnesota. Every time she works out, she dedicates her efforts to Izzie. She has been such a great person to connect with and I feel so lucky that we have been blessed with her as well.
The past few months I have seen people struggle post-Fontan, and I keep praying that a new way to help cardiac babies like Isabelle comes to fruition. I’ve been coveting other peoples’ bi-vent repairs, and as happy as I am for them, there is a part of me that is sad for Izzie. I’m sad that her heart doesn’t have two ventricles to repair. I’m grateful she is doing so well, but as my three year old pointed out to me not long ago, she needs 4 chambers, not just 3. I cling to the hope that Dr. Emani is working with colleagues to find a better way than the Fontan but for now, it is the best shot she has.
These are things that plague me when I try to sleep at night. These and whether or not I will be hired by someone. My current contract is awesome, but I do want to belong somewhere eventually. It’s getting harder and harder to ‘just keep swimming’ but it beats the alternative. I know I am doing everything I can to contribute to our finances. I am doing my best to make a good impression and to land a job. I am keeping all of my options open and my best foot forward. The other goal is to join a gym and get rid of this fat ass. I cannot believe how I have been stress-eating. It’s insane. That is another topic for another day. Until next time….