Feeling Better

Day 4 post-surgery. Hank is in much better spirits! Being away from the hospital and with just mom and Dad has helped him so much. He hasn't cried at all and doesn't seem to be mad at me. But I know he misses his brother and sister and is eager to go home. He still has the drain in his back and that causes a lot of discomfort, but he hasn't complained about it at all today. The "popcorn" stitches on his face are another story... We managed to get him outside today. He and Jeff went out on the patio behind the apartment and played checkers and chess for over an hour, while I ran to the drugstore to get some supplies and some comic books for Hank. So glad he got some sunshine and fresh air!

Tomorrow, we go to the doctor's office for the removal of the the drain in Hank's back. Hurray! Another little milestone. I think Hank will feel better without that appendage. And then Thursday morning, he will see his surgeon and get the sutures out. That will be a huge relief! I am hoping that will give Hank the confidence to go out in public again.

Hank has been questioning the reason for his surgery. "Did you just not like my face before?" Ugh...sound of my heart breaking...I explained to him that it had nothing to do with his looks...but that Parry Romberg's was attacking his face and this was the way to stop it. Later he asked, "I wonder if my friends will recognize me when I go back to school?" Craaack...yep heart has definitely broken! What a little sweetheart. It just kills me. With his inability to raise his arm, he keeps it close to his body. And he has to wear button down shirts, because we can't pull anything over his head... And then the sutures on his face prevent him from having much expression...so he looks like a little old man as he slowly moves around. So sad...

I called the hospital photographer, Mary, today. I asked her to email me Hank's pre-op photos, taken when we were here in March. She did and I pulled them up on the computer. I called Hank over to the computer and showed him the photos. "See how thin your face is on this side? I asked. He said he did. "And see how your eye was drooping a little and your upper lip was so thin?" Again he said yes. "This is what the Parry Romberg's was doing to the left side of your face. The surgery was to get rid of it and build your face up to what it was before." I explained. "Oh...," he said. I told him that after he healed, the left side of his face would now look like more the right and he would look like he did before. He quietly looked at the photos. "Do you understand now, Hank?" "Yes... I do.", he replied. I'm not sure if he really does...but that's the best I can do for now.

Someone suggested that I show Hank photos of people who have really bad cases of PRS. But I don't think he's ready for that. He doesn't need to know just how bad this disease can get. He's only eight, and I don't need him worrying about that. If all has gone the way we hope, Hank will no longer have facial atrophy and someday we can say, "Hank had a condition when he was younger." And that will be it. Our friends in Connecticut now say that about their son...I think it's so exciting for them to be able to say that!

Jeff has been struggling with some sort of allergy around his eyes since he arrived in New York. He is having symptoms consistent with being around cats... severe cat allergy. So now we are wondering...did he sit next to a cat lover on the plane? Did the couch in the apartment come from someone who had cats? Who knows...all I know is that Jeff is miserable and suffering! Poor guy.

Today he decided that enough is enough and he needs medical care. I called Hank's surgeon, Dr. Siebert to get a referral. Of course he only knows one general practitioner and he happens to be the head of medicine at another hospital. Jeff called and as predicted, they didn't give him the time of day. But they did give him the number of an ophthalmologist...who declined to see Jeff because they don't take our insurance...so I placed calls to the nurse practitioners that we saw at the hospital when Hank did his pre-op...and wouldn't you know it, they aren't in today...! What now?

So Jeff did the only thing left when you are staying right across the street from NYU Medical Center...he went to the emergency room! UGH! And I thought being in the hospital in New York would be bad... I texted Jeff after he had been there for about 45 minutes and asked how it was going. He said "this place is crazy!" I asked if he felt like he was on an episode of "ER". His response cracked me up..."Yeah, the people don't look as good as they do on TV." I think that pretty much sums up the experience. So after an hour and a half, he came back, hospital wristband in place, armed with a couple of prescriptions and told to take Benadryl. The doctors don't know what is causing his reaction, but suspect he has come into contact with cats or some other allergen. Hope it clears up soon...it's no fun. (and now I have TWO patients!)

We are managing to keep busy in the apartment. Hank has discovered the game of Monopoly and loves it! Even though Jeff has become Donald Trump-like, and has no problem bankrupting his young son and wife! Who knew he had it in him? I think I'll just stick to Clue!

Jeff will be leaving to return home this week. Not sure which day. Depends on his work demands. I secretly wish he would stay until Friday, but know that's not possible. Jeff's mom is with the kids and wants to leave by 9am Friday morning. And in order for Jeff to get home flying stand-by, he'll have to be at the airport at the crack of dawn on Thursday, which means he'll miss the doctor's appointment. But I'm happy to have him as long as I can. Without Jeff here, Hank will have to venture out for food, like it or not... so I hope Jeff leaves Thursday, rather than Wednesday...but we'll see how it goes at the doctor's tomorrow.

Lucy and Charlie are doing fine at home with Jeff's mom. Unfortunately, she has a bad cold, which makes taking care of them more of a challenge. But they are back in Montessori school this week, so she gets a break and they enjoy the consistency of their school schedule as well as the love of their teachers and friends.
We call every night to talk with the kids. They really miss Hank and always ask to speak with him. They think we are out having a great time, with no concept of what Hank has been through. But they are hanging in there and are eager to see us, as we are them. Hank and I have already been here for over a week, with one week to go... Hard on all of us

But even so, I am thankful for everything that has happened. The early diagnosis, finding Dr. Siebert, the fundraising efforts, family members to take care of the little ones, the support of family and friends, a place to stay in NY, successful surgery...everything!

So, we look forward to what tomorrow brings, grateful for the change in Hank's attitude, his body healing properly and the hope that soon this will all be a distant memory!