I've heard a rumor...

....that Alex's surgery will be on May 10, but nothing has been confirmed from the surgery scheduler. I guess we'll keep waiting.

Here's a couple of pictures of Alex, me and Oakland going for a walk. Obviously this was before the spring storm hit these last few days! I'll do anything to keep him entertained while he's supposed to stay immobile! Even becoming a train's caboose! Oh well. I'm sure I've been called worse things!

Now what?

Yesterday was a mess. I held back the tears of frustration as I got phone call after phone call changing one thing about Alex's surgery, then another, then another. I felt so helpless, and almost apart from the situation. It's so hard to explain. I was nervous anyway about the surgery - I mean, come on! He's going to have major surgery and be in a cast for a long time? Of course I'm nervous. But on top of that I was nervous because the surgery was going to be at Shriner's Hospital. I have no problems with Shriner's. In fact, in all my years of special ed I've heard nothing but fantastic things about their skills, and their compassion. And I've felt that with the doctor appointments. But I've never been there for a surgery, so I felt completely out of my comfort zone. I know Primary Children's Hospital like it's my 2nd home, and I've only been in the foyer and clinic at Shriner's. I know where every bathroom is at Primary. I know where 1 is at Shriner's. I know every drinking fountain, what kind of food they serve at the cafeteria, where they keep the 'toys' at Primary. Nothing at Shriner's. You're probably thinking, "You're not the one having the surgery! Get over it!" But I am the one who will be looking after my child's needs. I am the one ultimately responsible for him, and if I don't know what I'm doing, I might fail.

Then the first phone call. The surgery won't be as severe. (That's a good thing!) But we might have to do the bigger surgery anyway 6 weeks later if the bone doesn't hold. So that means surgery now, cast for 4-6 weeks, then possibly all over again with a bigger surgery? I guess this occurrence of a screw breaking in a 'skiffy' is so rare, that while we were sitting in the doctor's office looking at the x-rays finding out the screw broke, one of the doctor's in the office was sitting in a conference being told, "99.9% of you will NEVER see this in all your years of practice, but just in case you do, here's the procedure." When that doctor heard about this, she just laughed, and I guess called the conference presenters, who also got a laugh out of it!! Anyway, the nurse will call to give me later with the time for surgery the NEXT day! Whew!

The nurse calls, asks me a bazillion questions about his health, then tells me to call after 5:00 to find out the time of surgery. OK. I can wait.

Then she calls me again. After talking to the anesthesiologist, they would like us to come in that afternoon - like 3 hours after this call - to be monitored overnight because they are not comfortable with the pneumonia he is still recovering from. I'm OK with that, too. I'll have to make some arrangements for my babysitting kids, but this makes me feel good to know they are taking his pneumonia seriously.

Another call. This time from the anesthesiologist herself!! Now they want to postpone the surgery for 2 weeks!! Ahhh! My head is spinning as she tells me they don't have the staff right now to cover a difficult case like Alex (such as a respiratory therapist and someone to monitor his diabetes), and we need to keep him immobile until the surgery.

Uh-huh. Right. Like that's going to happen! I guess the kid should be in pain, but we all know he has a huge threshold of pain. I mean he walked on a dislocated / broken hip for 3 weeks for heaven's sake! He feels fine now so why am I all of a sudden expecting him to be in the wheelchair? "See! I can walk mom!! Are you proud of me?" How do you tell him, "Yes, but get in the chair!" He doesn't get it. I'm not sure I get it, how can I expect him to?

The upside to this is all the concern we have felt on his behalf. Thanks to a lot of prayers, and people calling / texting to see how we are doing, we will make it through this.

Who knows? Maybe I'll read this tomorrow and think, "Oh my drama!! Get more depressing that that!" and I'll realize what a lucky family we are to have this kiddo in our home, to show us how to act with adversity. To make us smile when the tears are threatening. I'll realize how blessed we are to live in an area where we have such access to specialists who can help us in a situation that is almost unheard of!!

But for now it feels good to vent! AHHHHHHHH!!!

A little more information

I just talked to the doctor about Alex. They are thinking his surgery will more than likely be Wednesday of next week. They will correct the deformity of his hip joint - which is the whole reason this didn't attach well the first time - then get a better fixation with screws and plates. He will be in a cast for a month and in the hospital for 3-5 days. I told him Alex was just recovering from pneumonia, and he told me that this is NOT an elective surgery and pneumonia would be near the bottom of the list of reasons to NOT do the surgery. Interesting.

Not a lot more information, but more nonetheless.

I'll keep updating as I get more news.

ARRRGGGGHHHHHHHH!

We went to the orthopedist for a checkup on Alex's hip today.

We left the orthopedist with Alex back in the wheelchair and immobile until they can do more surgery on his hip, which will probably be next week. One of the screws in his hip has broken, which only happens if the bones aren't solidifying so they are moving. We were afraid of this from the beginning because it was out of place for so long before the surgery, but I don't think they expected it to move this much this soon.

We will find out tomorrow when to plan on surgery and how radical the surgery will be.

Keep him in your prayers - again!!

A funny thing happened on our way to the forum...

Actually, we were going to Colby's and Kierra's house, not the forum. Which is a good thing because I'm not even sure what a forum is let alone where one would be located.

It was a beautiful, spring evening. Alex and Mike were enjoying a milkshake from Iceberg - our typical activity for Family Home Evening - and I was driving since I wasn't eating any. We were in a left turn lane, and stopped on a red arrow. We sat there for at least 4 minutes. I know that because at one point Mike said he was about to tease me for not turning, yet. He didn't realize our turn was on a red. And then we commented on how long the light was. It seemed to take forever!!

When all of a sudden a car coming the opposite direction slowed down and kind of swerved like she was coming for us, flashing on and off her lights! At first I thought, "Oh. I'm so sorry. I didn't realize I had my brights on." But then I thought, "What's your problem? It's still light outside. AND my brights aren't on." She moved back into her lane at the last minute - she being a woman at least in her mid 60's - had her window rolled down, her hand giving us the one-fingered-salute, and then she stopped next to us and SPIT on our car before driving off!

I'm not kidding! At first Mike and I just sat there. We looked at each other. We looked at the road. And then we just started laughing!! What the heck?! There's no way I could have 'insulted' her while driving because, well for one thing we were going opposite directions, and even if she had flipped a u-ee to come complain, I had been stopped at the light for 4 minutes! What's so offensive about that?

So there you have it. A grouchy, old lady and some milkshakes. Can't get a better Family Home Evening than that!

First the good news!!

If you know Alex at all he has had a tendency to get RSV and pneumonia A LOT in his short little lifetime. Because of this we have had the blessing of having a pulse-oximeter continuously in our home for about 7 years now. Love it!! I know it sounds silly, but it truly has saved us many a trip to the hospital, as well as countless other friends and family members who have had pneumonia or children with RSV. Just hook them up to the monitor, and you know where you stand.

Until a few weeks ago when Morgan had RSV and they took the monitor to the doctors to compare and it recorded much lower than the doctor's did. Sad day. The pulse-ox had died - or at least gotten tired. So the good news is... we are getting a new pulse-oximeter!!!

The bad news is the reason we are getting it so quickly is Alex has had pneumonia for a week and a half! :( He went to school one day and was fine, and by the next morning I could tell it was bad. Took him to the doctors, and they put him on oxygen 24 hours a day, then did a chest x-ray. Went to the doctors almost everyday for the past week and a half to check his levels, and make sure he is improving, which he's not. We had to put him on steroids 2 days ago. "So what?" you may say. A lot of kids are given steroids when they have lung issues and it clears it right up. Well, first of all, this is Alex we're talking about. He doesn't do things the way most kids do. #1 - the diabetes HATES steroids!! Hates, hates, hates!! His sugar levels have been from 350-600 (normal is 80-180) and that is with tripling his insulin doses. So of course he has been a little grouchy because I'm sure he must have a headache with sugars that high. #2- after being on the steroids for 2 days, his oxygen levels are finally at 91 on room air (that's OK - could be better, but has been worse) but he still sounds 'thick' in his lungs. He will have to do a full 5 day dose of steroids- which means a full 5 days of bad sugars.

He really is acting good and happy, though. In fact, one day the attendance office at school called and he answered. "Helllllooooo!" "Is your mom there?" "Yes! Hang on!! MOM! It's a very nice lady on phone!!" "This is the attendance office calling. Why is he out of school?" "I'm keeping him home sick." "He sure sounds good on the phone. Is everything all right?" "Yes, thanks for asking. He is on 2 liters of oxygen and can't move across the room without huffing and puffing. Pneumonia will do that to you." "Oh. I'm sorry. I had no idea." (That's partly my fault because I let his teacher know he wouldn't be there, but not the office. My bad.)

Now for even better news!! My sister / brother-in-law adopted their first child last week! Welcome to the family McKay!!

JERK!!!

This is a statue at Larkin Cemetery in Sandy. Mac's grave is right behind this flower garden. Whoever the jerk is that beheaded Christ isn't just a sac religious person, but just plain mean! Who would behead a statue of Christ that is surrounded by babies who are now angels? Obviously this person, or people, don't know the comfort we get by visiting our loved ones and even though the statue wasn't my reason for the comfort, it still added a peace to our 'park.'

So to the jerk(s), you may have smashed some cement, but you will NEVER squash the spirit that is there. Hope it was worth it.

Which one is the REAL cabbage patch doll?

Are you kidding me??

Here is a picture of a bench on my front porch. (I know. Random, but hear me out.)

It's cute, isn't it? Kind of simple and quaint. (Like me ;)) Nothing fancy, just what it is. Bright, cheerful, makes you smile and think of running through the grass with bare feet.

Now let's step back a few feet....

Are you freaking kidding me? This certainly doesn't make me want to run through the grass with bare feet! Get the hot chocolate out kids! Spring is running a little late this year!