Our 1st post-op doctor's appointment went well before and during.
Dr. Nelson didn't get to see "Mr. Hyde"... but everyone else in the building got to.
It turns out that the crusty blood I was freaking out about last night is not a big deal. (Gotta stop "Googling" things and trusting what everyone else says...)
Dr. Nelson said that there have been a lot of studies on the best pin care and nothing has proven to be better than just leaving it alone. He said Josiah could take a warm shower now, and that that stuff will just wash off. He said to dry it off and leave the pins alone.
He also said the pool would be good. I asked about a bath and he said that soaking it in warm water is not good because it warm water tends to invite bacteria growth... but he said I could try chlorinating a warm bath with a Tablespoon of bleach. (what!) :-/ Never thought about pool water containing bleach, but I guess that's what it is.
So things went well the 1st few hours of our day... but then things quickly got ugly, real ugly.
Instead of having me come back in 5 days, they decided to move one strut dial about 3 days worth of turning so they could change out 2 struts at the same time. (The struts are pushing the halos apart/together thus moving the foot. When we turn a dial, it's either elongating or shortening the bar/strut. Once the strut reaches it's max length, it must be switched out for one that can accommodate greater lengths.) While the doc actually turned it, Josiah was fine. He said he didn't feel anything... When went to the tech to have the strut changed, Jo started freaking out because he thought it was going to hurt... when the guy actually switched the struts and adjusted them to the right numbers, Josiah was full-blown screaming in his face "OWWWW! YOU'RE HURTING ME! IT HURTS! OW, OW OW, OWWWWW!!!!" the entire 20 minutes it took to do the change. It is hard to know if it really hurts, or it's a mental thing with him... I would say mental, but why did he scream the entire 45 minute ride home too, and why would he still be crying out now that we're home? He had medication at 10:30, and it's 12:10 now... no more until 2:30.
So I don't know if the turning caused his foot to start hurting, or if his fear caused him to feel "pain." I was trying to calm him down because there were other kids in the room waiting for their cast change or whatever, and I know he was freaking them out. I was so embarrassed at his howling. I don't know what's wrong with me. I wasn't feeling sad for him, I was frustrated that he was screaming at this guy who was just trying to do his job. I guess I didn't believe he was actually in pain, which is exactly what Josiah screamed at me, "You just don't believe me! You don't understand!"
That shut me up.
He's absolutely right. I don't understand; no one does. Only someone who's had a TSF on, and even then, each person's experience is different. It's like comparing labor pains & birth.
I don't know what's going on with him, but I need to stay gentle, calm, & reassuring regardless.
It's just so hard.
I don't know what to do for him.
I get so stressed and frustrated... I get angry because I can't fix it and I don't know what to do.. I feel guilty for putting him through this... at this point, I regret it. I'm hoping that it's all worth it in the end, but right now I hate it because he's miserable.... we're all miserable.
Josiah nailed it on the head when he cried, "I didn't know this thing would be like this. It changed my whole life! I hate this fixator!"
God, please let it get better soon!
I have been meaning to read this blog for a while and I'm sorry it has taken me so long. My heart breaks for you my friend. I'm so sorry for Jo's pain as well as yours. It will be a birthday you will never forget, but I pray that you will be able to one day look back and find all this pain worth it. No one will ever question that you have your children's best interest at heart.
ReplyDeleteJo is right, it has changed his whole life; his whole world (and yours) as he knows it. But that's the point! To change his world for the better. No one knows the ultimate outcome, but oh how I pray you find what you are seeking. I'm so glad you have found a doctor you value even though you have to deal with hospitals and insurance.
Keep blogging, my friend. Think how nice it would be to read through someone else's thoughts who has gone through all this. If nothing else, what a wonderful way to look back to see how far you have come.
Lord, my prayer tonight is that you bring Melissa the much needed rest her body is craving. Let each hour feel like two. Let the morning come slowly. Allow her children to rest late (or at least later than normal.) Lord, work as only you can. Amen.