I woke up fairly refreshed today after a decent sleep, 6 hours has got to be a record of late. Went downstairs to check on my babes who were cuddling sweetly on the couch. After preparing the meds, changing the diapers, we awaited the visit from Sue from Beaumont Home Care. We are always happy to see her she is very professional, organized, thorough, caring, and communicative. She asks all the right questions and gives us a lot of confidence that we need after what has become, on reflection, a pretty horrible experience with our previous care team.
The more we reflect on the previous "care", the more we recognize how many mistakes were made. There are a lot of variables so I don't fault them 100%, but there are some pretty basic things in my view that needed to happen, that didn't. We were initially under the impression that it was to be more "Palliative Care" which would entail a lot more focus on the well-being of Delaney.
There are some key components to basic care that I would have liked to see. The previous nurse never weighed Delaney. This really bothers me since one of my biggest concerns was that we didn't want her to suffer or starve. How could one know if she was losing weight if you never weighed her? The nurse never noticed a key factor that her heart was "Moderately Depressed". Our current nurse noticed such a big difference in the strength of her heartbeat, upon use of the current prescription of Digoxin, that she exclaimed that it was like a different heart! I don't expect a nurse to be a Cardiologist but if a heart sounded weak that should be noted.
Under the Home Care, Sue takes copious notes. Obviously, the focus has shifted greatly towards development and thriving. She works closely with our Pediatrician, she actively makes referrals and recommendations to supporting her health and growth. All the while she looks after us to ensure that we are taking care of ourselves. We certainly have a lot of people on our side which have routinely reminded us to take time out for ourselves. Reminders from all sides are greatly appreciated.
People make mistakes, people miss cues, we are human. I get that. What I don't get is that with everything we have been through with Delaney that someone could allow her to starve. There was no way that we could have possibly known that the feeding schedule we were given would have been so far below what she needed. We were following instructions and when we expressed concern about her difficulties keeping the food down, we just didn't receive a thorough enough response. So the sleeping giant awakens.
You may be asking yourself, I still don't get the reference for the title of this post. Well, the key is "I'm all out of bubblegum". You'd have to be willing to watch the old sci-fi thriller from the 80's to fully appreciate it, but the point is I'm not playing games with my daughter's health.
I mentioned that we were referred to Dr. Doshi. When Sue came this morning she was beginning to ask where we were on the various appointments we had to being Delaney to. When we told her that we got in to see Dr. Doshi yesterday, her jaw dropped. "Wow, way to go Dad!"
You see, we don't know how long the catheterization will hold. That Coarctation is a bit like a ticking time-bomb, it's been stretched but it will eventually revert. We just don't know when. So we have no choice but to move quickly. If I try to set up an appointment and hear the line, "The soonest we have is 2-3 weeks...", that is totally unacceptable. I explain her situation and won't take no for answer. We don't have that luxury.
There is so much urgency, yet we have to be measured and in control. This is a marathon and not a sprint, however like any good distance runner knows there's always a good place for a fartlek. It's Swedish for speed play, and a work out regimen where you intentionally run faster than pace for intermittent periods of time. So when the time comes in a distance race for you to accelerate, your body will respond. So we keep pace in this race, but always know when to juice it up a notch to stay ahead. We are able to do so because we now have the tools and personnel to be aware of her vitals, and effective to adequately respond.
It's beginning to feel like we are getting our feet under us in this "new normal". We can do so because our faith is strong, our friends and family are powerful advocates and we have an enormous growing army that is steadily rallying around us.
We received a couple of packages yesterday, from Arizona. One was from an old friend Erin, filled with all sorts of goodies. The other was from a group of friends who made us a very special gift from their hearts and hands. Heidi, Laura, Chele, and Alyssa apparently are learning how to quilt. They decided to make them for babies and when they were searching for a special baby to receive the first quilt, they read this blog and elected to send it to Delaney! It's a superb quilt, one that we know she will enjoy for years to come.
Delaney got another special visit from Uncle Sean and the added bonus of a Ki treatment. Within minutes of the treatment she was wide awake and kicking and practicing those jabs. As I looked on with a smile in my heart she moved her eyes, this time much quicker than she had before. It was a joyful moment. Moments like these reinforce to us that our efforts to give her the best chance possible to thrive are paying off. I later joked that we have help from just about every religion, practice, faith, from science & medicine to the metaphysical. It funny 'cuz its true!
We ask that you share in our intentions that we continue to have the energy to move forward with fervor, to bring the right people into our lives, and that God sees fit to hold our family in His hands keep us on a path to healing and full recovery.
This journey just couldn't be possible without you, and we are so glad you are a part of the healing. Whether your support comes on the form of prayers, thoughts, time, or items of need. We thank you from the bottom of our hearts.
B & L & d