Extra pep in our steps

I work in education and my fellow little people teachers will understand my following statement...

2017 rolled in like a lion and it only seems appropriate that we roll out of 2017 like a lamb.  For those who don't get it: 2017 started with a serious bang and our family has literally been going nonstop since and it has been a completely exhausting yet exhilarating year and we are looking forward to ending it with no medical "excitement" or surprises.  It's hard to believe that we are looking at the end of the year already so soon and our little miracle will be ONE soon.  Yikes.  More to come about that in a couple of weeks.  For now, this post will focus on our follow-up appointment today. 

We had our follow-up appointment this afternoon with our favorite cardiologist!  Really I should say "favorite heart clinic" because we just love every nurse and cardiologist at the clinic.

First things first, Margaret had an x-ray of her lungs to check on them since the pulmonary hemorrhage that she experienced during last week's heart cath.  Excellent news:  lungs look clear!  Celebrate!

Next:  We've notice over the last week that Margaret has had a LOT more energy and just overall seems happier and less tense.  She's a crawling machine!  Her reflux has been remarkably improved and we can count on one hand how many times she's thrown up --- seriously, those of you praying for a miracle cure for her reflux must have been praying hard!!  Seeing how good she's been feeling lately really puts into perspective how icky she must have felt leading up to this heart cath.  This isn't to say that she's been miserable and feeling terrible, I just mean that her little heart must have been working much harder than we all realized and now with both Pulmonary Arteries stented, the increased blood flow is doing her body good! Her sats have been above 90 most of the time and that's great to see.  Her cath site is healing well, although it looks a bit rough since she had way more bruising this time than any of her previous heart caths.  

At our appointment, I asked a lot of questions (like usual) and Margaret's wonderful cardiologist took the time to chat and answer all of them.  I really just love how individualized her care is and how invested her doctors are in her health and well-being.  We did talk about a long-term plan and but we really just have to see what Margaret's body tells us.  We would love to put as much time between procedures as we can knowing that she will become symptomatic in her own way.  

One of the things I asked the Dr. to go over (again) was the difference between Tetralogy of Fallot and Pulmonary Atresia -- both are used to describe Margaret's heart in her records.  Basically, Margaret's heart is really more of the Pulmonary Atresia with VSD and MAPCAs, not actually TOF.  PA kiddos tend to need more interventions compared to TOF and of course we've heard over and over that the MAPCAs add an additional level of complexity.  Eventually those MAPCAs will need to be dealt with, but for now they aren't doing any harm and we'd like to wait as long as we can!  We also talked about not rocking the boat right now with meds and plan to continue the course we're on.  Eventually we'd all like to see Margaret get weaned off of two of the medications but for now, she's doing well and her heart seems to be responding well to the routine we're using.  

During the heart cath, one of the leads connected to Margaret's pacemaker appears to be doing something kind of strange.  I guess it looks kind of like the wire is separating from the covering --- Margaret is not in any danger because of this and no one seems concerned.  This isn't something that they have seen before (surprise, surprise, eh?).  Right now the plan will be to do a pacer check in January and possibly discuss lowering the limits to see how she does and maybe during her next surgery have it removed.  This is NOT me saying Margaret is going to have her pacemaker removed.  It's just a possibility, but again, right now we like having the "back-up" just in case and it doesn't harm her any having it placed.  But it would be pretty exciting to have it removed eventually.  We'll continue to pray that her heart doesn't need to be paced and that the pacemaker continues to just be a fancy accessory in her tummy.

Bottom line - we are all aware that Margaret's heart is unique and she has been known to keep us all alert and on our toes.  We continue to pray that she will move through the next couple of months with no major health concerns.  

If anyone on Margaret's health care team ever were to stumble upon this blog I sure hope they don't think it's creepy how much we brag about them and how truly thankful we are that we landed where we did with the team that we are fortunate enough to have caring for our little lady.  We've spent a LOT of 2017 at the Children's Heart Clinic and Children's Hospital.  When we walk in for appointments, there is often a volunteer at the entrance guiding people and every single time they say something to us about how they can tell the families who spend more time there because we know exactly where to go without needing any directions.  Good thing?  

If you see our little family in the near future you might notice an extra little "pep" in our steps as we are so excited to spend the rest of the holiday season focusing on just that, the holidays!  We left the clinic saying "see ya later, but definitely not anytime soon!" to our favorite cardiologists and might have been on the verge of tears as we drove out of the parking ramp for [hopefully] the last time this year!

See ya in January, Children's Heart Clinic!! 

exhausted