Looking back at the Fontan, I have to say I wasn't prepared for how difficult the whole process would be psychologically for Joshua. We've been home for a couple days & it's clearly going to take a while before he can get over the whole experience (if that's even possible). He did so well the first 7 days of his hospitalization, it was hard, but he was cooperative & sweet. However, he got to his breaking point and everything within him seemed to change. I mentioned before it was in the middle of the night when he was abruptly woken to drink an absurd amount of potassium, the nurse was very firm with him & refused to give him his pacifier. From that point on, everything aggravated him; temperature checks, blood draws, IV flushes, the blood pressure cuff & even medicating him. He lost his will to go to the playroom, to have conversations, to play with toys, to do anything he once enjoyed. The experience which was already hard, became almost unbearable at that point. Thankfully, we only had 4 more days...which really dragged. But eventually our time came & Joshua was released. Although getting him released took a fair amount of twisting Dr. Azakie's arm. But the doctor is always reasonable & listens to our concerns...one of the many reason we appreciate him so very much.
The Fontan was a different hospital experience because previously we spent 90% of our time in the PCICU, where the nurses are absolutely top notch, amazing in every way. They are as compassionate as they are medically skilled. Joshua would have spent his entire hospital stay in the PCICU if I had my choice, but it's reserved for the critically ill & this time, Joshua only required their expertise for 2.5 days. The majority of his time was spent in the step down unit. Josh's bed was in a bay with 2 other beds, not much space & very loud night and day. The nurses had a couple patients to care for, and a much more 'relaxed' attitude about patient care. Actually, there were 2 nurses in this unit who took Joshua under their wing, but unfortunately they didn't work 24/7 (we sure wished they did though).
Another reason this hospitalization was different is because our previous NP (nurse practitioner) Megan, who was with us every step of the way in the past, no longer works at UCSF. This time around, we relied heavily on our bedside nurse for 'big picture' information, whereas before Megan would communicate & check in with us several times daily. UCSF is a teaching hospital, meaning each day we would have any number of residents, fellows, attendings from all departments drop in & check-in on this or that...but Megan was always a constant, the only constant during the whole process. She knew every detail about Joshua & we knew that nothing would be over looked by the team with Megan's watchful eye. In her absence, we often felt lost, unsure of where we were headed, just plain confused. We sorely missed Megan this time around. She actually came & visited Joshua twice during his stay, because she's just that kind of person.
Now that we are home, Joshua is slowly acting more like himself. He has broken down crying twice, asking why they put needles in him. It just breaks my heart that he can't understand why this all happened. Our child life specialist, Beatrix - who we SO appreciated - gave us a lot of good advice to help Joshua cope & understand the circumstances. But even so, it's going to be a long road to emotional recovery. He's definitely happier now that he's at home, but certainly not totally himself.
I'm just so glad to have the bulk of this experience behind us. Who would have thought that 6 weeks in the hospital for his Norwood & again 6 weeks for his Glenn would be easier than 11 days in the hospital for the Fontan?? I wouldn't have guessed it. But the worst is now behind us & we look forward to brighter days with our 'pink-er' little boy.
(I've had the hardest time arranging my pictures with blogger...they are really random, but I wanted to post a couple of them anyway - even though the placement isn't really relevant in this post.)
We have created this blog to tell Joshua's story. Josh was born in 2007 with a congenital heart defect, Hypoplastic Left Heart Syndrome (HLHS - only half of his heart developed) & has undergone 3 open heart surgeries, pacemaker placement as well as surgery to repair his paralyzed diaphragm. He had a very rough beginning, and has hit some bumps along the way but amazes us every day with his ability to live a very active life. Follow us as we try to keep up with him!
forms short sentances never stops talking continues to climb up everything is a peacemaker w/ his sisters weighs 23.5 lbs
at 19 months joshua
loves to swim speaks quite a bit climbs up everything loves to camp tries riding his tricylce, but needs some help
at 18 months Joshua
can catch a ball runs everywhere he goes ever expanding vocabulary climbs like a mountain goat eats anything in sight (like a billy goat) beats up his Dada very coordinated says "what the?" when something surprises him
At 17 months Joshua...
anxiously watches for Semi-trucks as we drive & yells "tractor" when he sees one walks the whole way around the block reminds me he needs his meds hides toys in the toilet (this is bad)
things I've found in the toilet:
a football blocks a full roll of toilet paper mulitple empty rolls a small soccer ball
At 16 months Josh...
says 15-20 words 'Amen', 'Grandma' & 'Doctor' (his newest words) winks roars like a tiger follows simple directions communicates very well with & without words jumps on the trampoline (with adult supervision:)
At 15 months Joshua...
wrestles his big sisters helps clean up (a little anyway:) tries new words and sounds daily isn't as scared leaving mommy's side flirts like crazy makes animal sounds
At 14 months Josh...
weaned from breast milk walks say 10+ words puts 2 words together feeds himself can crawl at lightning speed makes anyone smile 9 teeth (3 are molars)