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.)
11 comments:
Poor little guy not understanding all that hard stuff. Kids are so resilient. Before you know it, he'll be the same old Josh with much more energy!
Tell him we love him!
Allison.. reading that entry is de ja vu! Owen is almost six weeks post op and finally getting back to himself. He's still emotional and the tears are heartbreaking. There is "no touch" his chest and walking is non existent.
Josh is such a sweet boy and he'll get through this. I am amazed at how quickly he got out of there. We too had a reality check spending time on the floor. Owen was fine the first four days and then by day five.. he was DONE. I am dreading doing it again!
I'm glad your home and getting back into routine. Josh will just need a few weeks and he'll be a new boy. Pinker indeed! I loved reading his amazing sats!!
Hugs to you and Josh.
:( Poor Joshie!! It is so sad to think of what he must be thinking. But they are resilient and do luckily forgive and forget so quickly. It is so nice to know that he is home again surrounded by the love and patience he needs. We love you Josh!! Glad you're home!
I'm so glad you shared about this. It's great for us who are trying to "prepare" (if that's at all possible) for this...I'm extremely worried about Maddie's emotional state and what this will do to her. Like you, the floor is so difficult, we constantly have to be "mama bears" there and advocate for what we want/don't want for our kids. I love our CICU unit as well and begged last time to stay.
Anyway, glad you're HOME and hopefully it's just the right medicine Josh needed to get back to normal. He did so amazing :) Congrats!
So sad to hear what a rough time Josh is having emotionally. What a sweet boy. And what a mean nurse to be so callous. I'm glad you guys are home, & he's starting to return to his old self.
We are so glad you guys are back. So sorry for the bad experience...nurses can really make or break a hospital stay! Glad you guys are home and hope Josh makes a full and quick recovery!
Oh this breaks my heart. We focus so much on the physical healing that we forget just how much emotional healing needs to take place. I hope that Josh bounces back and starts to feel safe and in control very soon.
My heart is so happy, and so aching for you because I get everything you posted. I am so sorry that Josh is old enough to have bad memories. Just remember how pink he is when he has them!! Casey had the same issues for awhile. The farther we got away from surgery, and the fact that it wouldn't happen again for a LONG time helped him a lot. Hang in there! If you think having a big buddy that's been through it will help, we are here!!
My heart breaks for your little guy. I can't imagine being so young and trying to understand what happened to you and why. We are SO glad you're all home and so happy you'll finally get those undisturbed and peaceful nights of sleep. We pray Joshua has nothing but good dreams and great days ahead.
Oh my....his questions / emotions are heartbreaking. Sorry to hear you didn't meet another "Megan" this stay....but the love & support of his family & friends is always a constant! Praying his sad thoughts are soon a distant memory. Can't wait to see him get back to his happy self soon! Hang in there!
Poor guy! You can totally see it in his eyes in all the photos, too. I'm sorry you all had such a rough stay. I think there really is a huge difference between 7E and 7N. I think the nurse practitioners they have there now are great, but they see a lot of patients, and give more of their attention to the ones who are struggling medically. I know very well that feeling of not knowing what is going on and wondering if you have been forgotten!
But now you're DONE for a long, long time! As others have said, kids are resilient, and I'm sure that in time Josh will be himself again. From what I've read, it sounds like Josh is a naturally upbeat and happy person, as is Magnus. While in a way, that makes it all the more heartbreaking to see them in pain and totally unlike their normal selves, I think this personality trait makes them even more resilient. We went through a similar thing (though obviously to a much lesser extent with a much younger child) after the Glenn. Magnus went from smiling all the time to not smiling at all for more than 2 weeks. But over time, his old self came back. I'm sure Josh's will, too.
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