Eye Surgery Postponed

So here's the deal.  It's been recommended, because of Kate's other health issues, that she have her eye surgery done at Rady Children's Hospital. Dr Heichel, her eye surgeon, does not currently have privilege's at Rady's.  He is trying to get them, it's a several month process and he is several months into it, so the call may come tomorrow or 2 months from now. I think it's best to not push the surgery date and have it done at Shiley, I feel better about it being at Children's. No reason other than mother's intuition? Hopefully it will be sooner than later.

In the meantime, Kate is doing really well in 3rd grade. She had two friends over the other day and Kate was a good head taller than both of them. She has mentioned that she is the tallest in her class. It will just be this way through elementary I think. In middle and high school she will blend in better, although everyone will think she is older than she is. Can't win everything.

Eye Surgery Update

Hello everyone,

Right in the middle of my timed Medical Terminology final, I got a phone call from Dr. Heichel's assistant at Shiley Eye Center.  They spoke to Kate's cardiologist and it was decided that the surgery should take place at Rady Children's Hospital. The surgery date is currently unknown. I will post when I hear something.

I think this is a good thing.  I was trying to give her medical history to the RN at Shiley and I just cannot spew out that much information in a coherent way.  The Dr.'s should have access to her medical records at Children's which is nice. And just in case, it's a full scale hospital.  There won't be a just in case, but still. Just in case.

Off to La Quinta Resort tomorrow to bake and swim. Have a fun Labor Day weekend everyone.


*Aced my final, by the way.  Yay for the little stuff.

Eye Surgery Date Change

Eye Test

 New Surgery date is September 11th. I changed it because we have an early entry reservation to CA Adventure on Saturday the 8th, and yes, getting in to ride the new Cars Land rides before the crowds will be worth it.  I completely forgot about it when I scheduled the first surgery date. Fun before surgery as often as possible.

 

 Today Kate and I went to Shiley Eye Center for her pre-op appointment. We got there are 10, and left about 12:30.  They actually shuttled us to the first room pretty quickly, but then the inevitable stall out. They took Kate's vital signs and then we spoke with a pre-op nurse who gave Kate her own little bag to bring back to surgery. It was full of prescriptions that I need to go fill a few days before surgery.  She has to have antibiotic drops in her eyes every day for a few days before surgery. The nurse also attached a coupon for each prescription. Can't wait to see how much they cost me.


We then took a little tour to the surgery floor and recovery room where Kate immediately decided that surgery had once seemed like a good idea, but was no longer on her to do list. The anesthesiologist came out and talked to us, aka. me, because Kate had clammed up and was being rather serious about this no surgery thing.

The ever famous snack stand at Shiley

Right now she is scheduled to have surgery in the Shiley center, but given her distended aorta, the surgery may be moved to a hospital. We will find out a few days before surgery. They are going to be talking to her cardiologist to OK the surgery. Always a chance we will have to see him before surgery as well.

After the tour we were sent back down to get Kate an EKG and have her eyes measured. The EKG was fine, she is a pro, but she hates those sticky pads like no other. It took a lot of alcohol wipes and patience to get them off without her screaming bloody murder.

And then we sat, long enough for me to really start thinking. That is never good. For months I have been saying how I can't wait for this surgery, for Kate's eyesight to be improved. But at that moment, all I could think about was what if it doesn't go well and she ends up blind. I wanted to find her Dr. and ask him about the odds. Then, of course, I had this whole discussion with him in my head.  He couldn't possibly say that everything was going to be fine, they never say it in those words, lawsuits I suppose. So, in my head of course, I started yelling, "but are the odds in our favor?" And then I started thinking about Hunger Games and conversation started sounding like a movie. Thank goodness they came to get us for her last eye test. After we got that done, we were out of there. I was feeling rather guilty about the whole sticky pad moment so we hit the snack shack and ditched the rest of the school day.  HA! I know you wish I were your mother. :)

This weekend we are heading to the desert, to swim, get hot, swim, get hot, and repeat until Monday.

Eye Surgery and Physical Therapy

Kate went back to Shiley Eye Center on August 10th to have her retina's checked by Dr Goldbaum.  She needed to to have her retina's given the go ahead before we proceed with surgery on her lenses. People with Marfans Syndrome are at risk for retinal detachment. The hits just keep coming. Actually, I wish the hits would please stop. No more issues.



Miss Kate had to get her eyes dilated again. The only respite was knowing that after you get dilated, you get to go to the snack cart outside. She chose Doritos, as you can see on her lap.  She digs the shades when things get too bright.

 Kate has her pre-op appointment with Dr Heichel, the surgeon who will perform her lens replacement. That had first told us that she would have her eyes done separately, a couple weeks apart at a time. Now, because she has to go under general anesthesia, the Dr has decided to do both eyes at once.  I'm quite happy with that decision. She will wear plastic lenses over her eyes to keep her from touching them for 24 hours then every night for a week or so.

Surgery is scheduled for September 5th.

Kate is doing pretty well, but she still has some muscle weakness. She is going to physical therapy a few more times to try and build up her strength. I know this picture is small, but she is smiling so cute, I couldn't help but put it up.

School starts tomorrow, 3rd grade! Noah is starting middle school, and Abby is starting high school.  So wrong.

Update on The Hips

Busy, busy, and really busy.  I took Kate to see her hip surgeon about three weeks ago. I know, terrible. Since then we have been to Utah at the cabin, Bear Lake in Idaho, and a couple days at Disneyland, of course, Legoland, and Sea World. I think that's pretty good. I'd like to relax the rest of the summer, reading and doing absolutely nothing. Well, it's good to have a dream, right?

Kate's Dr. said she is healing well and we just need to continue building up her muscle strength. She did pretty good running around everywhere. Some rides at Disneyland and some of the activities at Bear Lake made her hips ache a little, but overall she is doing fantastic. We were told that she should have her hardware out next summer. Major bummer. I thought we would have a couple years off. Should be relatively easy surgery, as surgery's go, but still, no fun.

I went through Kate's closet and took bags, yes multiple, of clothes to her cousins in Utah. She is wearing size 12 everything. She turns 9 in October. That is a little depressing.

I am planning on making an appointment with a retina specialist this week so she can be checked out to see if she is a good candidate for her surgery. People with Marfans are at risk for retinal detachment.

Took all the kids to the dentist today. I don't know why it didn't occur to me, but because Kate had recently had surgery with hardware, they just did an exam, no cleaning. I had thought about the heart and having them treat her prophylactically with antibiotics, but the hips just did not occur to me.  Another call to the Dr to see what to do about that the next time we see the dentist.

Kate has started going to Indian Princess camp with her dad. This last weekend they went to the beach. Kate got up on the surfboard and was a real pro. This is a picture of her at the beach.  Gotta love the hat.

We are heading back to Utah the first week of August for South Weber Days.  Can't wait!

6 Month Cardiac Echo

In general, no news is good news on this blog.  But today I actually have good news.  Kate had her six month cardiac echo check up.  We got there at 8:45 and left a little after noon.  Typical.  This picture is the cardiac echo in process.  What you can't see is a screen playing Ice Age off to the right. I didn't watch much of the echo  this time.  I glance enough to make out her ventricles and her valves and then I start seeing things that don't exist; valve leaks, areas too large, etc.  So,  I played Kings Around the Corner on my phone.  The tech must have thought I was pretty unconcerned. If he only knew.

They also hook EKG up to Kate and monitor her the entire time.  Good thing for electronics to keep us from reality.  Kate and her movie,  me and my iPhone.  We did have books as well, by the way.  Never leave home without one.  Or two.

After the echo we waited yet again in the cardiac waiting area.  So loud, kids,  a movie playing.  I told the reception gal that if she calls for me, and I don't respond,  it's because I'm partly deaf.  She laughed and said, "Yeah, it's really loud out there."  I must have given her a weird look because she then said, "Oh, you're serious."  Well, yeah, I'm serious.  Who tells people they are deaf and not mean it?  I would have said it's stinking loud in here and I can't hear a thing,  if I were trying to make that point.  Slight rant from the deafy here.  Sometimes I wish I were wearing a sign that announced my hearing state.  Double edged sword,  people can't tell,  which can be nice.  Pain in the butt because people can't tell and think I'm ignoring them or just plain stupid.  I'm a little stupid,  but still :)

We were finally shown to a room and then had no less than four interns come in and ask us questions,  taking the history, etc.  Dr. Grossfeld finally showed up.  At this point I was pretty anxious and just wanted to hear that nothing had changed and we were cool.  But, being the nice Dr. he is,  we exchanged the pleasantries first. Here's the good news,  everything looks great.  Well, not great, but no worse than it was six months ago.  We are staying on the beta blocker and continuing with decreased activity level.  Same as before.  Huge relief.

Kate also saw a physical therapist on Tuesday and was given some exercises to strengthen her muscles.  She still walks with a little twist in her gait and still walks up and down the stairs walking sideways.  Most of her issues,  they think,  are because her muscles are weak.  Exercises should help.  Checking with insurance about getting more treatments with the physical therapist. 

As a final note,  I finished my RN Refresher course at UCSD and start working on my classes for Health Informatics next week.  They tell me I need a math class!!  Rotten news for math illiterate people like me.  Wish me luck, heaven knows I will need it.

Good News, Finally.

I know, I know, I haven't posted in forever.  So here's the latest.  Kate started going back to school about 2 weeks ago.  She is still on her walker, until tomorrow supposedly, but she still has an interesting gait going on.  She is supposed to be having physical therapy, or at least a consult, and I'm still getting through all the authorizations, etc.

Kate was very nervous to go back to school.  She said she just wanted to stay at home the rest of the year.  That first morning she told me she was afraid that everyone had forgotten about her.  We pulled into the school lot and I got her walker out, we weren't 10 steps before we hear someone across the street start yelling her name!  Next thing you know a bunch of kids are yelling, "Kate's back, Kate's back."  She had a grin, ear to ear.  She is just dandy going back to school now.  I will admit,  I was so used to her being glued to my side,  the first couple of days were strange for me.

Kate had her follow up x-ray to check her scoliosis and spondy in her back.  I took her the Rady Children's and we were dressed and ready for x-ray when the tech was like she's here for her hip x-ray, right?  Um, no this is for her back.  Well, the order said hip.  I said, well the order is wrong, please go check it.  Needless to say, they had Kate on the table ready for hip film and I made them wait to get the right order called down. Sure enough,  Mom was right.  I went from being that annoying mother who won't let us just do our job,  to thank goodness you are keeping track of these things.  Whatever.  Got the films done and while we were waiting to talk to Dr. Newton about the results,  the nurse came in and apologized for putting in the wrong film request.  It was fine,  but parents need to be patient advocates and not always rely on medical staff.  Ok, off my soap box.   The good news is that her scoliosis and spondy have remained stable.  We go back again in a year.  Thank you, thank you, thank you.  So happy to have good news.

We go back to cardiology on May 30th for another cardiac echo and check to see if her aorta has changed.  That's the new prayer, the heart.  We will schedule eye surgery for early fall.

This picture is of Kate and her "boyfriend" Ethan.  They have been in the same classes since kindergarten.  He sent her cards while she was out that said, "you are my best friend."  This was taken at his house last Saturday.  He is moving to AZ for two years for his mother to go to school.  Everyone at the elementary, teachers,  have talked to me about how sad it is to break them up.  He is tall like Kate, so she loves that.  It was the sweetest thing when we showed up at his house.  It was an open house, drop by thing for the mom to say good-bye to everyone.  Ethan had been swimming with three or four other boys when we arrived.  He ran up to Kate and said, "I have been waiting for you to get here all day."  And then he promptly told all the other boys that he wasn't' playing with them anymore and he took Kate and off they went to make a lizard trap in the backyard.  The funny thing was when we walked out back to all the adults,  Ethan's mother introduced me as her future in-law and Kate as Ethan's girlfriend.  They decided they would Skype and write to each for the next two years.  So sweet.

I think that covers it for now.  I am having way too much homework for my nursing refresher course.  I am using Kate as my final project so I have been doing her history and physical and doing research on all her physical issues.  It's good to be informed I guess,  even if I don't like what I am reading.  Since I cannot hear well,  I am going to go back to school for Health Informatics.  With this and my RN,  I should be able to find a fun job.  I hope.  I start in June.  Yay!