It's been pretty quiet here on the blog. No excuse; just the reality....we've been in the trenches.
And now that we're starting to see a glimmer of life post surgery....life that is becoming a bit more 'normal' and a bit more tolerable....I can now admit how tough it's really been.
It's been all around tough.
Appetite tough...
Going out in public tough...
Medicine tough...
Mentally exhausting tough...
Blood test tough...
5 yr old needing control tough...
Marriage tough...
Simple things tough...
Overwhelming tough...
I think you get the idea :)
But how can I complain, when Nate is here....with us! He is doing well!! I am so thankful for the incredible progress I see, as recently as the last week.
Taking his meds is now routine - dare I say easy? A far cry from having two adults and 4 arms holding him down while shooting in the nasty stuff to the back of his mouth. We've got a routine down pat, that includes his favourite chips and his beverage. So what if he's eating chips after breakfast!! I'm also not having to be a chemist - crushing and mixing and 'hiding' his Coumadin everyday. He's chewing those pills (again, with Doritos - but I'm not complaining!!) and that has been such a relief!
His finger pokes are still never fun, and I do like to make sure my windows are closed before doing the poke (it can still get a little noisy :) ), but the frequency has decreased, which makes it much easier.
His appetite is still sketchy. We have not had a normal breakfast or night snack in 6 weeks (normal being cereal, toast, etc.), but really - so what if he's having pasta for breakfast....it's all carbs anyway! Cooking meals has been frustrating, as I do try to cater to his tastes, often to have him take one bite and promptly tell me he's full. Or demand an entirely different meal. You will understand my willingness to cook according to his needs, when you've been in a situation where zero food is going in....you'd do just about anything to get him to eat.
His energy level has improved! Now that the majority of the healing has taken place, it's time to see how he will tolerate activity and endurance. At this point, Don and I both agree that his energy level has improved from pre-op. Even in just the last week, I've been so impressed with his desire to be active and the progress he is showing. He still knows when he's tired, and self regulates his activity. But we've come a long way, from even a few weeks ago, when I was doing a LOT of carrying him around!
Through it all, Brady has been the most awesome Big Brother. He is so keenly aware of Nate and his activities, and is always the first to ask Nate if he's okay. In the first few weeks post-op, when the boys were playing in the yard, Brady came to me and said he thought Nate's heart was ticking a bit too fast. Another time, when Brady wanted to go play ball at the school yard behind our house, he got out a lawn chair and brought it to the field for Nate to sit on and watch....it was a sweet moment. Brady has taken these difficult weeks in stride....never complaining when Nate would get all the attention, or exceptions to many rules. When Nate would be having one of his (very common) fits of rage, Brady would often come and whisper some advice in my ear....it was usually an idea to calm Nate, to give Nate something that would make him happy. And often he and I would just exchange a little look with each other, smile, and nod knowingly. As yucky as those moments were, Brady could understand that Nate was just dealing with some tough stuff and responding in the only way that he could at the time.
And we've been surrounded by so many that love us all so much. It's hard, for the ones that love Nate so much, to see him dealing with such anger or fear. I know they all would do anything to make things easier for us in those times. It's maybe even harder to be the one who wants so badly to carry the burden, to ease the hurt, than to be the one in the trenches. We have been carried through by each prayer, each kind word. We are so thankful to each one of you! Thank you for loving us - and for loving Nate - especially when he didn't return the love.
We had another cardiology appointment today. And today, Nate behaved like a charming, sweet and kind little guy. Do you know what a relief that is, to be able to take that component of stress out of the equation? So thankful. As far as the appointment, no news is good news in this case. We're going to change up some of his meds and see how things go in the next two weeks.
One thing that I've learned of myself, as a heart mom, is that I find great satisfaction in the technical details. I don't like the 'layman's terms' in regards to Nate and his health. Give me details and use the real words. I suppose in the very beginning, the simpler terms were better, but now... bring it on. Side note: I had to inwardly chuckle during a particular rounds while in the PICU in Edmonton. The doc was taking his residents through quite late one night. After one of the residents presented Nate, the doc went on to do quite a intense grilling, questioning them, as to Nate's particular heart complexities, L-TGA in general, reasonings behind treatment, and implications of different parameters. Oh my - I just had to hold my breath as this conversation went on at the bedside. Truly, I was rooting for them to answer the questions correctly, the silence while waiting for any of them to answer was painful!! I just wanted to whisper under my breath and give them the answers they needed. Anyway, I like details, and I know some of my heart mama's might be interested as well, in some of the details, so here are a few:
- Nate was on bypass for 123 minutes, an aortic clamp time of 72 minutes.
- A 25mm On-X mechanical valve replaced the severely regurgitant left AV valve (Ebsteinoid like)
- A Medtronic dual chamber epicardial pacemaker was implanted, with leads capped and were tucked away behind left rectus sheath (no generator implanted yet).
- The VSD that was closed was the diameter of our surgeon's pinky....how's that for detail?!? Lol, it's the best info I got!!
