It’s been awhile

It’s been a long time since I’ve posted here. I’ve typed up a few drafts but never finished and posted them. So much has happened since my last post and I don’t know where to begin.

I guess to keep this somewhat short(er) I will save a lot for a later post. I have some family news and Hydro update for now.

First off, Little Man is now a big brother! Sissy is already 5 months old, going on 6 months. I can’t believe how fast time goes by watching these two grow. He does good with her most of the time, but boy does he have a jealous streak. Most of his jealousy comes when I’m nursing Sissy. He is not a fan of me being “tied down” unable to play with him, and has even told me “shirt on” a few times. He does good helping us with her though and will bring her a blanket or binkie and helps us put her diapers in the trash. He does like to try and claim her toys at times though.

Now to Little Man, so much has happened. As far as his Hydro goes it’s been a roller coaster. We had a point we were given the all clear for 6 months before his next follow up! The latest news however is not as good. He had a MRI check and due the ventricles being dilated (one moderate dilation, one mild to moderate dilation) then dropped his setting from a 6 to a 5 to decrease them. Our follow up for that should have been in October. It’s only August and we’ve had a few concerns. About a month ago he fell back at daycare after a few a his friends and him were chasing each other and collided. He hit his shunt and you could see the abrasion where there were spots of blood like when you scrap your skin enough to draw a little blood but not for the blood to pool at all. Daycare said he seemed out of it after and we picked him up. It was coming up on nap time so I’m sure that didn’t help either but he wasn’t himself. Called his neurosurgeon and they said if he’s not vomiting or showing signs of malfunction not to worry. Two weeks later and he’s started at his new daycare. Monday he’s fine, Tuesday night right after getting in bed he vomits. After that he seems fine so we let it go. Thursday night, same thing. Then he vomits again on Saturday. Since he has no other cold symptoms and it’s been every other day we go to the ER. They do a shunt series and his ventricles are stable from his last visit but his setting is showing at a 6, not a 5. The vomiting is being contributed to the new daycares menu that includes a lot more fruit than he’s used to.

Now our concern is the shunt setting. This is twice that it’s at a different setting than it should be. We have a follow up office visit a week later. They attempt to adjust the setting down to a 5, it doesn’t want to change. After a few attempts I start to worry. Ask if the reason for changing it down to a 5 was to get the ventricles to decrease, yes. That was a confirmation of my fears that I had to ask. They borrow a stronger magnet from cardiology next door to try and get it unstuck. No luck. It will change to a 7, but not drop down to a 5.

They sent him for an X-ray to confirm it is at a 6 after all the attempts at adjusting it. It is so they decided since his ventricles are stable we are going to go for another MRI in two months and go from there. Provided he doesn’t show any symptoms of malfunction it will be a wait and see game.

My stress level is insane wondering what’s going to happen. I also plan to discuss why they are now ok with his ventricles being dilated now and if it’s just to avoid surgery or give the shunt a chance to fix itself and hopefully adjust next time.

Well, I guess I will leave it at this for now and in a few days get a post up about Sissy.

2 thoughts on “It’s been awhile

  1. Welcome back to blogland! Congrats on the new addition.

    I’m also a little surprised that they are ok with the dilation. Every time my daughter has gone in with that, it’s been an immediate hospital admission and next day surgery. She does not have a programmable shunt though-I wonder if that matters. I hope they can get it straightened out for you guys soon. 😦

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    1. Thanks, glad to be back.
      That’s where I’m concerned and looking forward to talking to them in person rather than via a receptionist over the phone going back and forth. Part of me wants to go ahead and get surgery over with so I can quit worrying once it’s done and over but at the same time I don’t ever want to wish another surgery on him. Also, financially it would be better to have it this year since we have hit our max with insurance so everything else this year is paid in full by insurance. So I’m stuck between it all.

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