Changing Dates: It’s like musical chairs, but less fun
Last month we played a pretty lengthy game of musical chairs – surgery date style. As we circled around the calendar, trying to land on firm dates for an MRI, Echo and open-heart surgery, dates were lifted from underneath us one-by-one. Seriously, people. Frustrating doesn’t begin to describe our feeling towards scheduling.
Me: If you told us our echo and MRI were both on July 17th, then why do yo have to call me a week later to tell me the echo isn’t available that day? Isn’t that what you scheduled previously? STL: “We are working on efficiencies internally to properly connect channels and open communication.”
I understand that communication can be poor at times – I work in customer service. And I know all the buzz words to throw at callers to generically say you are sorry, and you can’t really do anything about it. However, it super sucks when the tables are turned on you, and your daughter’s health is at stake.
Me: Can you move things around to fit us in since we are supposed to have surgery on August 6? STL: “Sorry, Mrs. Kaderly, but the Summer months are just jam packed with appointments in every department. Families schedule during the summer to avoid their child missing school.”
(Insert growling noise) We were trying to do the same thing – avoid Roy missing school and having to take personal days. If this is the case every year, then why, when we blatantly asked in March to go ahead and schedule surgery, were we told to wait until we see our local cardiologist in April? We could have possibly avoided this situation. After we got over our initial frustration with the system, we decided to be more positive. This is how it is supposed to be. There is a reason Reiss will have a later date for surgery. There is a reason for all of this.
Sedated MRI/Echo and Surgery
Reiss will have her sedated echo and MRI on July 24th. Once that is complete, the images will be sent off for analysis, and we will send the images to our second opinion at Children’s Hospital of Philadelphia. If the MRI images are good enough to create a 3D heart, Reiss’ surgery will be August 26. If the MRI images are NOT good enough to create a 3D heart, Reiss’ surgery will be August 10
We will not know the surgery date until July 31st, after the MRI images can be read. According to the STL surgeon, the 3D heart model is a new technology, and while it is beneficial to use, it is not necessary to choose and complete a surgery. I’m hoping that they can just create the heart from the images provided. They already told us they wanted to create the 3D heart (prior to scheduling conflicts, and back peddling on the importance, or lack there of, of the 3D heart) in order to decide the best route for Reiss’ open-heart surgery. I would rather them have the 3D heart created and not really need it than not have the heart and not ever know if it would have been beneficial. We are still keeping Reiss pretty secluded to avoid getting sick. In terms of coughing up blood, she has been doing well. She went from every 7-1o days in April to about once a month since then. Activity still causes her to get out of breath, but her puking from this type of activity has also been better. Reiss used to puke multiple times a day. Now, she goes weeks at points without puking.
On Angels’ Wings Photoshoot
I met the lovely ladies of On Angels’ Wings a couple of years ago at a craft fair. I thought the premise of the organization was beautiful. It never crossed my mind that it would ever be something I needed. After February and March’s episodes of coughing up blood, I started to think of the worst possible outcome for our curly-haired cutie. Her pretty little cow-loving heart will eventually be her demise. And her demise could be any time. Will she make it through surgery? Will post-op end in a fatality? Infection? Other complications? Will she need a new heart? There are too many ways – other than the “normal” worries parents think of as they lie awake at night – our little girl could be taken from us at any time. To combat those worries and thoughts, we make memories as much as we can. We create smiles and grab hugs at every possible moment. On Angels’ Wings has helped us freeze Reiss’ blue-eyed smiles and silly personality in time, and we are most grateful for that. We met our volunteer photographer at our farm in Marshfield, Missouri on a Sunday evening this past June to capture these moments. Paulette from Flyover Photography was amazing to work with and didn’t complain once about stepping in cow @$%&, bug bites, or ticks. Reiss didn’t do so bad either! She smiled as best she could and took direction well. Below are the moments that Paulette was able to capture. I believe they show Reiss as she is – beautiful, country, curious, silly, and even serious.