Our current computer-generated prescription of turning is 40 days.
Every night we turn the knob on each of the 6 struts.
The struts (the up & down bars) are causing space to lessen on the outside of the left foot, and create more space on the right side of the left foot.
At the end of our 40 days, the foot should be brought "over."
After that, we will get another computer-generated prescription to bring the foot "up."
It is the same idea behind the serial casting all clubfeet babies go through, but the fixator eliminates much of the human error involved and obviously holds the foot in position much better than plaster ever could.
These past 3 days since we've been home have been a roller coaster.
I'd say at least half of the day, Josiah is just fine. He plays his Wii, watches TV, colors, and naps.
We've had a few family members come visit with him, and he's done fine while they're here.
I think it's a good distraction.
However, the other half of the day he is yelling out (often very loudly) that something hurts.
It is heartbreaking, at first, to hear your child in pain. Feeling helpless is an awful.
We try to calm him down, reason with him, explain that the pain will get better, etc.
We pray over him, asking for God to touch him....
but often nothing helps.
Besides pain, he also complains that it itches, which is understandable. The multiple pin sites have all started scabbing. Skin itches when it heals. He has also complained about his toes. His big toe is pinned straight. If you hold your big toe still, you realize that it's pretty hard to wiggle the others.
This is maddening for Josiah right now.
You may have noticed that I said it was heartbreaking "at first." That is because after several hours, over a few days, if you're like me anyway, you start to get more frustrated than sad. I want to yell back, "Stop yelling at me! There's nothing I can do!" It's embarrassing to admit... this lack of patience... but to my defense, I'm exhausted. Between helping Josiah use the bathroom/give him meds through the night and Jackson waking up to be nursed, my sleep is very broken.
Don't get me wrong. I feel horrible for him. I am heartbroken, but my reactions have not always been as calm and as gentle as I would have hoped.
He's angry because he's in pain and doesn't know what to do, and I'm angry because he's in pain and I don't know what to do.
I have to figure out how to stay calm and collected, even when I'm feeling frustrated and flustered.
I emailed Dr. Nelson about Josiah's pain, and asked what else we could do for him. (He amazingly emailed me back within an hour or two. Have I mentioned how much I love this guy?)
He actually doubled his pain medication from 5mL to 10mL. That has helped today tremendously. He has not screamed about pain at all... just the itching/toes. We've been giving him 5mL of Tylenol with codeine every 2 hours instead of the same dose every 4 hours.
Other than that, we try to keep it elevated, though sometimes he's more comfortable laying on his side or bending his leg at the knee, and just letting the leg rest on the frame of the fixator. If he's comfortable, that's all the matters to me.
One thing I am so glad I decided to do is to grab that "urinal" bottle they use at the hospital. It is a million times easier to help him go in that thing than to lift him into his wheelchair, wheel him to the bathroom, get his pants down, and lift him on the toilet. As it is, we do that a few times a day when he says he has to go #2... unfortunately, the pain meds constipate, and he has not been very successful in that department yet. That'll be my next email to the doctor: what should we give him and when does it become a concern? It's already been 6 days.
One traumatic event was the removal of the gauze that was around eat pin site. I knew it wasn't going to hurt, except for where the blood had dried to the skin, attaching the gauze... but the pain of that would be minimal. However, the FEAR of the POTENTIAL pain is what has caused us a lot of grief. Josiah is 6. He has not endured much pain in his life (thank God), but he is unbelievably afraid of pain. He screams like you wouldn't believe at the THOUGHT of us doing something that could hurt. THAT is very frustrating as a parent. You know you have to do it. You know it's not going to hurt, but you can't make him believe you until he just sees for himself. It's very stressful.
Another thing I hadn't considered were the side-effects of the pain medication. I read (and have found to be very true) that Tylenol with Codeine brings mood swings, anger, and sadness. It causes your emotions to feel exaggerated. Boy have we experienced this side effect! Josiah is like Dr. Jekyl and Mr. Hyde! One minute he is saying, "Thank you mom for taking care of me," and the next minute he's yelling, "Don't touch me! Get out of here! Leave me alone!" I'll ask if he needs anything and sometimes he'll say, "No, thank you mom. I'm ok," and other times he says, "No! Geez, I'm FINE mom!"
I sigh and walk way knowing that he is going through so much more than I've ever been through and that a lot of it is the medication talking.
Our first doctor appointment is on Thursday, June 30th. They will be changing one of the struts. I fear Josiah will freak out about that "potential pain," though there is no reason the strut change should hurt... but they will be handling his foot/fixator so that has the potential for a "freak out." Be in prayer about that, would you?
John goes back to work tomorrow. It's a bit daunting to realize I will have 3 very dependent children all to myself... I'm specifically thinking about the 3-children simultaneously screaming that John & I experienced over the weekend, and not wanting to endure that alone!
But I know we'll all survive.
They're my babies! I'd do anything for them.
Besides, I wouldn't want anyone else taking care of them anyway. ;)
Things to know about the hospital & initial days at home:
- if he doesn't volunteer it, ask you doctor who you can get a hold of for quick answers about problems that arise 24/7.
- don't' be afraid to ask about adjusting pain medication if you feel it's not working
- for surgery, see if the nerve block is an option. I think it saved us a ton of narcotics & agitation in the hospital
- bring home the urinal (and bedpan for emergencies).
- have the nurse change the surgical gauze before you leave, and it would be best do do while the child is sleeping! (*update- use a squirt bottle of warm water with a T of bleach. Squirt some (gently) on the gauze before removing... much easier!)
- you'll be fitted with a wheelchair & walker before leaving the hospital. Make sure you understand how it works before letting the equipment rep leave. If it's not a good fit, let them know and they will switch it out (deliver it to your home).
- take care of your back! You will be using it a lot!
- everyone told me, and now I understand: the 1st week is HARD. It is painful for your child, yes, but what I didn't think about is how much of an adjustment it is on EVERYONE in the family. The other kids have already had to wait or cry frequently because Josiah needed something. Attention has shifted. My once "big helper" is now in need of big help. It is a hard thing for him to deal with mentally... it's all beginning to sink in how much help he needs, how he won't be able to do X, Y, Z... it's a bit depressing; however, he will not be as bed-ridden in a few weeks as he is now. Once his body's adjusted to the fixator, he won't be in pain & he'll be able to get around a bit more. We are going to make a big calendar to cross off the days. I try to remind him of why we're doing this, and how much straighter his foot will be... how it will be easier to run for soccer and baseball. How he'll be able to jump better, run faster, etc since he won't be walking on the outside of his foot.
But then I put myself in his shoes, and think a few years down the road... as a teenager/adult, if his feet were very turned, and if he was walking on the outside of them, would he be angry that we hadn't done something to help him? I think he would.
I pray this is all worth it and pays off for him in the end.
No comments:
Post a Comment