Carter has made positive progress everyday!!
There are a number of things we are keeping an eye on...
- Main Bandage sites - both healing and Carter is more comfortable daily. Walking feels good.
- Eye - the eye pain and sensitivity that Carter woke up with has improved daily as well - Thank Goodness!! Part of the prep they did after he was asleep and before starting the procedure was to put gel drops in his eyes, cover eyes with cloth and then tape over top. At some point Carter either opened his eye and irritated it or something fell in and scratched it. His eye muscles were also the last muscles to ‘return’ making opening and focusing them really hard to do. He was so proud he could open them both the morning after the procedure, even though it was painful to do so. The right eye took a couple days after coming home to heal up.
- ‘Poke’ sites - IV locations as well as the vaccination site in his arm have all healed and Carter’s arm had improved quite a lot by the 3rd day home.
- Throat - intubation irritation. Little by little this improved and yesterday Carter said it was almost completely gone. Great news! He handled intubation (a breathing tube) really well his first and second surgery. His upper airway reacted though after the third one (at 4 months old) - that one took a lot longer to get over. This one took a little while but we are so glad it kept healing day by day.
- Infection - any infection stemming from the procedure would generally show up within the first few weeks. Carter was warm - not feverish - but definitely warm those first days home. They think this is a natural whole body inflammatory response to everything that happened. At this time the ‘warmth’ comes in waves. He has not had a fever, so good news! We will continue to watch for signs of infection as the days progress, can’t wait to be ‘out of the woods’.
- Chest - heart and breathing. Carter has zero complaints about his chest area. Deep breathing irritated his his upper airway at first but that is from the breathing tube.
- His Heart: it’s sound has changed a little bit. The ‘Trill’ is now gone and it’s back to just the ‘Tick’ or ‘Click’ that is the mechanical valve. The trill had gotten louder and louder as the conduit became narrower and wow, had that changed. It feels like we are listening to a miracle every night when we sneak in to check on him while he’s sleeping. He has a sound unique to him - it’s a beautiful sound.
- Breathing: it’s sound has also changed. His breathing while sleeping is deeper - not quick, not slow, seems comfortable, but definitely not as shallow as it was before.
- Follow up: Carter follows up with an echocardiogram on Wednesday as well as a lab draw and a finger poke. We will compare the lab INR (tests coagulation levels in his blood) with his home finger prick machine to verify accuracy.
- Coronavirus: Once home after his follow up we can truly start the two week clock and hope we successfully navigated going in and out of hospital and Madison without picking anything up. That will feel good to be past that window of time. So far so good. Then, we continue on as we were just prior to procedure. Safer at home and limiting public outings and interactions. We will remain ‘virtual’ for now.
- The timeline for our family ‘reopening’ will look very different from states’ plans. For us, this will take awhile and that’s OK. Looking forward, we will continue safe at home practices until our doctors tell us there are viable treatment options available in the event Carter or any of us come down with it. We are Not holed up in fear - we are doing what is best for our family. As a world, we are in the early stages of figuring this virus out and ways to medically combat it. There is zero reason to put Carter or any of us at risk - we have risk factors outside of his in our family. We can be patient. We can wait. Please be patient with us. This too shall pass.