Saturday, March 27, 2010

One Step Closer to Going Home

I wager most parents think their child is amazing. I remember when Malkolm was born, his head was shaped like an ice cream cone, his skin was wrinkly and hairy and his face was all squished up ... and I thought he was the most beautiful baby in the world. I remember when they placed him on my stomach, I didn't care if he had 10 toes or no toes. I didn't care -- I loved him intensely and immediately.

I remember wondering when I was pregnant with him ... wondering what it would be like and how scary it might be to have a special needs child, and I knew the moment they placed him into my arms that it didn't matter. I didn't care. I loved that little naked child more than I ever thought possible, especially for someone I hadn't met before. When they told us he was perfect and healthy, that was just icing on the cake. It wasn't until three days later that we found out there might be something wrong with his heart, and about two months later when our journey with HCM would begin.

Thinking about how far we've come, and seeing the young man he's turned into and the man he is becoming -- I just can't imagine our lives any other way. Life is good.

I have some great news! Yesterday at 2 p.m. we were moved to the Step Down unit. This is the place where patients go when they no longer need the minute-to-minute care of ICU. And, even better news, not 20 minutes ago, they took the drainage tubes out!!

Malkolm was not happy about the pain associated with that -- he told me that I was banned from cuddling with him (one of the big things we were talking about was when he got the tubes out, I could climb in the bed and cuddle a bit). The doc that took the tubes out asked him why he was mad at me, because she was the one that pulled the tubes out. And he matter-of-factly said, "because she allowed it!" I could tell that it was really feigned anger, because it really did hurt, and of course, within about four minutes, still with a forced fakey scowl on his face, he said "I guess you can cuddle with me a little" ... heh. So I got a few minutes in before they came to take him to x-ray. I offered to go, but he wanted to go by himself. Ok, well, at least I got the courtesy cuddle I was waiting for.

His usual quick-witted sense of humor has been a bit dimmed by his medication and pain, and I think mostly by the frustration he's feeling by not being able to use his arms to pull himself up into a comfortable position.

But he does have moments where even with his irritation his sense of humor shines through. Like when he was so mad and frustrated in the ICU when he had to wait for five hours to get a drink -- and after being told numerous times he could not have anything yet, he huffed and puffed and threw as much of a 9-year-old tantrum as he possibly could with the tubes and such limiting his actions. I told him that he would be able to have any drink he wanted once they cleared him, and he looked at me and said, through his tears, "Well, then I'm going to have a CAFFEINATED BEVERAGE!" (knowing full-well we do not usually allow him to have caffeine and that he probably wouldn't be able to have a drink with caffeine in it.) Might be another one of those you-had-to-be-there jokes.

We've had some issues with his blood pressure and heart rate (too high), blood sugar (rising) and fever (little too high at times), but it seems these things are pretty normal for anyone going through a surgery like this and are seeming to regulate themselves now. Of course, none of these things are normal to us, but it is what it is -- dealing with it in baby steps.

I read to him briefly during the really tough times (thanks again Mette for these great books!! Soothes the savage beast!) and that really seemed to help calm him down and then he could sleep again. My mom read to him too, and I have to admit, her voices are way better than mine. I remember she used to read to us when we were little, one of my favorites was The Mouse and the Motorcycle (I read it to Malkolm several years ago). I always loved Ralph's adventures when mom read them.

Last night, Malkolm and I were talking. He was too wired to sleep and so we were just talking about anything and everything -- I offered to read to him, but the light was too dim and I was struggling over the simplest of words simply because I couldn't make out the letters. He thought that was hilarious, and he started giggling -- except, because of his pain, he couldn't really giggle, so it was more of a high pitched slow wail. Just hearing it, I started laughing and then we were both laughing (wail) and it was hurting him, but he couldn't stop (wail). Just when we'd get it under control, he'd say something silly like "fuzzy bunny" or some other random ridiculous statement (wail), and we'd both start laughing again (wail). The nurse actually thought there was something wrong and came in to check on us. I felt like I was at summer camp breaking curfew, but wow was it nice to laugh with him.

After we finished laughing, he started to fall asleep and I just sat with him until he drifted off into a relaxed and fitful sleep, which was literally just about two minutes. I just sat there for a while looking at him in the silence echoing in my mind with sounds of his laughter, the dim light framing his face with the shadows. His long eyelashes draping over his cheekbones. His dark brows over those eyes. Just marveling at this wondrous gift that God has given us and so relieved that it seems the worst is over. I think he is the most beautiful boy on the planet, inside and out.

Malkolm is actually sleeping right now, the whole taking out the chest tubes was a pretty intense experience. He's earned a few solid winks, I think. Like the old Irish proverb says: "A good laugh and a long sleep are the best cures in the doctor's book."

More to come later ...




  1. He has to feel so much better after getting those tubes out! I was amazed at how gigantic they are and how far up they went. Max was told it would be a "little pinch" while taking them out. What a huge lie! That was intense pain. Please tell Malkolm that Max feels for him and thinks he is brave and tough. He has been praying for his quick recovery.

    We don't let our children drink caffeinated beverages either. It's not that we're health freaks by any means. It's just that I guess we've never come to that magic age where it's, "OK, chug way. You can drink caffeine now." I love that he said that. I'm betting that boy just might get his very own own Coke as he leaves the hospital. (Ours get one on their bday--they think it's too cool.)

    I got a kick out of the laughing scene. I can remember the silly laugh Max would do. huh huh huh. huh huh huh.

    I don't know Malkolm, but from here, he is mighty beautiful.

  2. Hey Michelle -- I have to agree about the pain. It was pretty intense for him, and yes, they definitely did downplay it a bit. The one tube, it just kept coming and coming, and it seemed like she pulled forever before it finally came out. He's still sleeping -- probably the best nap he's had in a while. At this point, I'm wondering if I should have taken a nap too.

    I'm hoping to get Malkolm on the blog tonight to read comments and such so he'll be able to read Max's comment about him being brave and tough -- maybe put up a post too. huh huh huh - LOL! There was some of that too.

    And we may have to let him have a root beer before he leaves. They have Barg's here in the cafeteria which is caffeinated (he loves root beer), so that might be just the thing. Thanks for your prayers -- maybe someday we will be able to come up to the ranch so you can meet Malkolm. I think it's great what you guys are doing there.

  3. Hey Jen, love your blog. I feel like we are right there with you.
    I was just talking to my kids about our collegue days: talking about volley until late, while Sia pretended he didn't heard a thing, or when we played volley at the gym or outside the apartments. Great times just wanted to let your mind be distracted a little bit.
    My friend you are in our prayers for Malkolm's quick recovery and hope to see you soon.
    Tons of love and kisses to everyone.
    p.s I was showing the kids the pictures from Liz's weeding.