Rai had her surgery

March 13, 2009 at 3:05 am | Posted in life | Leave a comment
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The whole family was up early and left for the hospital at 7:15 A.M. We had Rai checked in on time and they took back to get all the pre-op stuff done at 8:30. Dave and I switched off so Rai would have the full attention of one of us and the other two could spend time in places they could make noise.

Since this isn’t a brain surgery, I was allowed into the OR until she was alseep. I had to wear an oddly spaceman like white paper jumpsuit, shower cap and a mask. The anesthesiologist put the mask on her and I held her hand as she drifted off quickly but peacefully. I liked it so much better than the IV stuff when they scream and cry because it burns going in and the abruptly cut off mid cry. I am guess she did too since there was no pain involved…at least at that point.

I rejoined Dave, Mira and Laura. We took our pager and went upstairs to wait. The clinic waiting room is an incredible playroom. The girls have become quite enamored of air hockey table and the requests are already pouring in from them. About an hour later, we were paged to return. Rai was doing great and just about out of surgery. We waited for about 15 more minutes in surgery waiting room. Dave went in first and I took the other two down for lunch.  When I came back we switched again.

Rai was still groggy and clearly in a lot of pain. I had them give her some Tylenol with codeine. When that took effect, she drifted off peacefully for a bit. When she woke up, she was ready to go. Her eyes were a bit happier and she was even trying to chat. I got her dressed, signed the obligatory papers and got the heck out of dodge!

The only snafu of the day was getting her scripts filled. The nurse said she called them in but it became apparent that it wasn’t to our pharmacy. When Dave went to pick them up, our pharmacy had no clue. They called another one nearby in case the nurse confused the two. Nope..not there either. The pharmacist called neurosurgery and managed to get new scripts faxed over just in time. Rai is the kind of kid that you can’t let the pain get ahead for the first two days. Otherwise, we will never catch back up and she will be miserable. We got the next dose into her just as the first one was beginning to wear off. Whew!

She is in bed and sound asleep. Dave is upstairs giving her the next dose right now-yay g-tube! Hopefull she will get a good night’s rest.

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what’s going on?

March 10, 2009 at 6:03 am | Posted in life | Leave a comment
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Let me know if you know because I don’t have a clue.

I called to make Rai’s appointment today and word hadn’t trickled down. The appointment person tried to give me one that was a month out. I pointed out that she had hole in her head and that we were supposed to be seen sooner.

Finally word came done that she has an appointment at 12:30 tomorrow and that was all. I swear neurosurgeons have a God complex. If all we do is go in to be told the same thing that we were told on Saturday, I am going to throw a fit. At least throw the CT scan in to mollify me.

Oh-and did I mention that we are expecting a snow storm? This will be an interesting day.

Today we also had the follow up on Laura’s bronchitis and coughing issues. She has  a provisional diagnosis of exercise induced asthma. She does have allergies but she has had a cold almost every 3 weeks since she started preschool. Why did we ship her off? We are technically paying to keep her home when she is sick. The doctor won’t confirm it yet because of her age and the year we have had. Time will tell. I just hope we like what it tells us.

On a positive note-I am handling the stress, dealing and am still smoke free! I am really getting to the point I don’t think about it. I do get stressed out and want something but I don’t always identify that something as a cigarette. I realized that I really just want an escape hatch when that happens. Maybe a weekend off is the answer.

The Cousin Eddie

March 8, 2009 at 6:27 am | Posted in life | 3 Comments
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So Dave and I decided that we should name Rai’s upcoming surgery. He came up with the Cousin Eddie from the various National Lampoon’s Vacations because of the plate in his head that ultimately had to be replaced. Shows how much I paid attention after the first movie since I only have a vague idea of what he is talking about though I know who Cousin Eddie is.

I came up with the Sucky Sixth since this will be Rai’s 6th surgery. I think I like Dave’s better because it adds a bit of twisted humor and my idea is simply, well, sucky and depressing.

After seeing the neurosurgeon this morning, we know for sure that Rai will be having surgery  this week to remove the plate on her head that is starting to come through her skin. Because she is on an antibiotic, along now with a prescription antibiotic ointment, it can wait unless things get worse. They will be calling us on Monday to schedule a CT scan and the surgery.

If things go as planned it should be an outpatient surgery depending on the CT scan. In the whole scheme of things, it is actually kind of minor. Major=taking out half a brain. Minor=not even going through the skull. Clearly these definitions are relative based on our experiences.

I would really appreciate if people would pray or send positive thoughts our way. Surgery is surgery and Rai will still have rough time. I am pretty sure she doesn’t agree with our definition of relative.

WTF? Are you kidding me?

March 7, 2009 at 3:53 am | Posted in life | Leave a comment
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I am so done right now.

On Thursday Rai’s teacher called me. As the day went on she was refusing to walk or bear weight on the casted leg. I round everyone up and took her in. They cut the cast off and it looks like they overstretched her. So they lessened the stretch and put a new one on. It seems to be working because she was walking today.

Last night after baths, Dave asked me to look at a spot on Rai’s head. She has some bumps on her skull where things didn’t heal prettily after all of her brain surgeries. This one does tend to get irritated easily. I put some neosporin on it and then put more on this morning.

When I picked her up from school today I checked it. It had puss in it and looked like an abscess. So we zoomed off to the pediatrician. They swabbed it for a culture and prescribed an antibiotic. The doctor didn’t clean it out though.

I cleaned it out tonight and found a HOLE. It looks like something shiny is coming through. I think it is a SCREW! I am not surprised that she has them but I am surprised to actually be seeing it. I call the pediatrician and she tells me to call the neurosurgeon.

After a lot of back and forth calls, the neurosurgeon has decided to see her at 11am tomorrow. Since it is open, they don’t want to wait until Monday but since she is already on antibiotics and feeling fine, they think we can wait until tomorrow.

I have a feeling that another surgery is in her future…

Just another medical day around here

March 5, 2009 at 4:19 am | Posted in life | Leave a comment
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Rai had an appointment today to start serial casting to stretch her heel cords. That is a usual thing around here. Then I get a call from the preschool asking me to come get Laura. Apparently she was running in the classroom, tripped and hit the side her head on the corner of a table.  She was fine when I got there but I could tell the cut was going to need some sort of attention. Luckily, just not immediately.

Off we went to Rai’s appointment. When that was over, we went upstairs to one of our pediatrician’s offices. Laura ended up only needing glue and not stiches. Since is the side of her head, who cares. Her hair will cover any scar.

She doesn’t seem to care and I am not sure she has learned a lesson. Hopefully she will soon before she gets seriously hurt. Rai on the other hand is none too pleased about being back in a cast.

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