Scheduling Life

Today has been all about shuffling schedules so Kate can go on a field trip.  Her field trip to the San Diego Zoo is Friday the 9th.  She was supposed to go and see her cardiologist that morning.  I called her cardiologist to see when they could possibly get her in so she could go on this field trip.  The earliest appointment was in February unless I could make next Tuesday, the 6th,  at 3pm.  Tuesday,  at exactly 3pm,  was when Kate was scheduled to get her contacts fitted.  She is soo excited to get her contacts.  I called Shiley Eye Center and the earliest they can reschedule her is the 12th.  That is six days difference.  That doesn't seem like a lot,  but for some reason today,  it felt like the world.  I sat in the parking lot of the grocery store considering,  field trip vs. contacts.  Field trip eventually won out.  And then I cried.  Stupid, ridiculous, annoying,  all of those things.  My logic was screaming at me to pull it together and get into Sprouts,  while my heart felt like it was literally breaking because I didn't want to break it to Kate that her contacts will have to wait 6 more days.  Finally made it into the store only to lose it again when Abby's YW leader called and asked how I was doing. I'm sure she wasn't expecting what she got.  Sorry,  Holli.   Just when you think you've got it together, obviously,  not so much.

Here's the schedule for the next couple of weeks.

Friday,  December 2.  Dr. Heichel at Shiley Eye Center.  He is watching her dislocated lenses and will likely do surgery when the time is right.

Monday,  December 5.  Dr.  Wenger at Rady Children's Hospital.  He is an pediatric orthopedic specialist who will be looking at her femur issues, protrusio.

Tuesday,  December 6.  Dr. Grossfeld at Rady Children's Hospital.  He is her cardiologist.  He will be checking on her tolerance to the blood pressure medicine she is on to help slow down the dilation of her aorta.  He will likely put her on full dose now.  

Monday,  December 12.  Dr. Tasto at Shiley Eye Center.  She will be fitting Kate with contacts.  Yay!  I hope and pray that she is able to wear contacts.  Her vision will be improved and she will be so much happier.

That's it for now.  I actually bought a planner yesterday.  I forgot to pay the rent at my business last month.  Yikes.  If it's not on a list or it doesn't beep from my phone,  I never remember whatever it is I should be doing,  or buying, etc.  As a matter in fact,  I have a timer on my phone to remind me to give Kate her medication every night.  Kate is actually really good at remembering.  She reminds me more often than my phone.  She likes to show off how easily she swallows pills,  thank goodness.

For a handful of reasons,  I have decided to put that RN license I keep current to use.  I am going to take a refresher course after the holidays,  and hopefully find some way to get clinical hours.  Someday,  after I have worked some nursing positions to get experience,  I would like to end up in same day surgery or somewhere in orthopedics.  Kate will always need some sort of nursing skills in her life,  so wish me luck.  Actually a bit nervous.  Hopefully,  there are a few brain cells left in me.

Stages of Grief

Ever since I found out about Kate's spinal and femur issues,  I have found myself wheeling and dealing with God.  At first I was asking for all of it.  Just let me take it all.   This is actually a very selfish act for me.  I am too weak to watch my baby go through this.  So, after I didn't hear back, I decided to changed tactics.   I started asking to just give me the pain.  I got thinking that maybe this was Kate's trial in life and I shouldn't be messing with it.  But,  surely I could take the pain that Dr.'s seem to be sure is coming.  I assured Him that I was truly thankful that she wasn't having any pain yet,  and that I was also very thankful she was running around like she didn't have a care in the world.  And just a few hours ago it occurred to me that I was bargaining,  as in stages of grief bargaining!  I can be a little slow,  so this isn't a shocker,  but I was still surprised. 

When I lost my hearing, got tinnitus, migraines, etc.,  I never once placed blame on the big guy upstairs.  I certainly do not do that now.   I understand that we are given bodies when we come to this earth and that they are flawed.  That they can become flawed,  broken, and plain messed up.  I have even started to wonder if I was given my physical issues in some part to make myself more prepared to help Kate through this.  I have a friend,  who may read this, hi girl!,  who has told me that she has blamed God for the fact that she has not been able to have children in this lifetime.  I hope I conveyed to her that despite the total suckiness,  yes I am using that word,  of my health issues,  I in no way blame God.  In fact,  I wouldn't take it back for anything.  I have grown more in the last two years than in any other time of my life.  Ok,  I'm rambling.  I guess I just hope that I can convey to Kate,  as she grows older,  that this CAN be a blessing.  That she can take this challenge and use it to her advantage.  It's a HUGE order,  and I know sometimes she is just going to need to be angry and sometimes she's going to need sympathy.  And sometimes,  if she's like her mom,  she's gonna want to hit or throw something.  But,  I know she has many people in life who will help her through this.

It looks like I have a ways to go in the stages of grief.  And each time they give us something new to deal with,  I have to start all over again.  And just as a last thought,  because it never hurts to keep asking,  I will still take her pain.  And if you want to take my tinnitus away,  I'm cool with that too.

Kate and Thanksgiving

We all went down to San Felipe, Mexico for Thanksgiving and had a great time playing with some cousins.  These cousins actually live in Utah and we got talking about meeting up during Christmas to go skiing.  You know,  so many conversations and decisions are now affected by this new way of thinking with Kate.  It would probably be a bad idea for Kate's eyes and back to be skiing.  Bummer.

We went down to the beach and picked up a ton of shells and sand dollars.  We had to hike up a hill to get back up to where we parked.  It was enough of a hill that you got a little breathless.  I walked with Kate and reminded her to just go slow.  I didn't mention her heart or anything, I just asked her to keep me company.  This is complicated.  I don't want her to feel like her whole life has changed,  but her whole life has changed!

On a positive note,  we heard that her contacts are in.  Yay!  I'll call Monday and make that appointment.  Kate is very excited.  I hope they work.  Cross all your digits,  fingers and toes!

Kate and Protrusio

More information from Kate's Dr. visit today.  After explaining the vertebra issues,  the Dr.  moved on to her hips.  You may be able to see on the left hip,  right side of the x-ray, he did some light markings.  Protrusio is when the femoral head starts to enter the pelvis.  This can cause some decrease in her range of motion among other things.  I can play the nurse here,  but I am feeling more like the mom,  and the mom isn't feeling technical. Usually causes pain and can require surgery to fix.  We are going to see a Dr. Wenger on December 5th.  He is a pediatric orthopedic hip specialist.  I was told that there were things we could do to help stop or slow this down.

The Dr. tested the range of motion in Kate's hips and had the nurse write down a bunch of numbers.  I heard a 70% in there somewhere and I have no idea what it could mean.  I was kind of in a daze when they started doing that.   By the time the Dr. finished,  he could see that I was fighting the tears,  and  I didn't want to lose it in front of Kate,  so he was nice enough to tell me again that Kate's scoliosis was within normal ranges and there was nothing right now that was an emergency.  We just needed to watch things.  But,  I needed to see Dr. Wenger as soon as I could. 

Yes,  I took Kate to McDonald's again.  She asked.  I was seriously about to give this girl anything she wanted at that moment.  If she wants some fries and a cookie,  done.  I was good though,  didn't get a diet coke or an ice cream cone for myself.

Kate and Spondylolisthesis

What started out as what I thought would be a piece of cake visit to the Dr. turned out to be kind of a mess.  We thought that we were getting a base line measurement of a slight case of scoliosis for Kate.  Actually,  he said her scoliosis is currently a non-issue and is within normal ranges. Instead we are walking away with two different things. They will be in two different posts.   First, Kate has what is called spondylolisthesis, or what her Dr. called 'spondy' as you can see on her x-ray.  You can see on the close up view that her vertebra is supposed to be lined up with the one above is and is currently 6mm off, or 25% off from where it should be.  They asked her a few times if she had back pain.  They also asked if she had problems using the restroom. She actually laughed at that one.  Thought that was a pretty silly question.  We go back in 6 months for another x-ray. The information online is fairly gloomy,  I'm choosing not to read it.  The next post is worse.   I put the information that the Dr.  gave me so you can read it too.   

Marci's Hearing

It's been a year since my last hearing test,  and no big surprise,  I'm still deaf!  My hearing ear, left side,  is still at normal levels,  no big change.  My deaf ear has actually gotten worse.  Who knew it even had that capability?  It has basically gone from completely useless to even more completely useless.  Those are are the Dr.'s words,  not mine.  Tinnitus is still full throttle,  he gave me an anti-depressant I could try to see if that helps.  Funny,  the one I've been on for migraines the last two years hasn't done anything for the tinnitus.  He thinks I should up the dose.  I could very quickly become an incredibly happy person.  You are warned.  I could almost believe that, but I know what my next couple posts are going to be about.  He also gave me a prescription for a diuretic that is supposed to help with the sensitivity to sound. Too bad there's not a drug out there to get me through Dr. visits.

New Medicine

Kate had her blood drawn yesterday to check her kidney and liver functions before she starts her new medicine.  We were walking into the clinic and she asked if she could be put to sleep to get her blood drawn.  She is my bravest girl,  she volunteered to go first to get her flu shot!  She was so nervous the phlebotomist had to really talk her into it.  She didn't cry or anything,  but it was sad to watch.  After he got her to give him her arm,  she was fine.  As a matter in fact, she couldn't tell when he took out the needle.
The cardiologist called today to tell me the results were normal so we can go ahead and start her medicine.  It is Losartan,  a blood pressure medicine.  Her Dr.  prescribed it in liquid form and after the second pharmacy told me they couldn't get it in liquid form,  I just got the pill form and prayed Kate can learn to swallow pills.  It took two times trying but she got it down.  And she was quite proud of herself.  Take that, Aunt Tani!  The only real side effect is that it could make her sleepy. This medicine is supposed to slow down, or stop entirely,  the further dilation of her aorta. 

The Cardiologist

Our cardiologist walked in and gave us a report on each of the kids.  Here's the deal.  Kate's aorta distention is currently a 3.11 cm.  When it gets to a 4.5 to 5 cm they start talking heart surgery.  He did say that he has never seen a child who has needed the surgery.  It's usually the adults.  It apparently takes a long time for it to reach a 5. Kate will be getting her blood drawn on Monday to check her liver and kidney functions before she goes on a medicine that is supposed to help slow down the aorta distention.  It is a blood pressure medicine that has been used for Marfan patients for a few years but is still in a trial phase.  I'll give more info on that medicine once I fill the prescription.  We go back to see the cardiologist in a month to see how well she is tolerating the medicine at a lower dose.  If everything looks good, he will start giving her the medicine at it's full strength.  I am assuming we will go in again and see how that is working.  We will also schedule her next cardiac echo when we go in next month. It will be six months from when she had her first one.

We got a report on Abby's cardiac echo as well.  I was told by the sonographer who did her ultrasound that she had a prolapsed mitral valve,  completely unrelated to Marfans.  I have basically spent the last two weeks thinking that Abby has heart issues as well.  The cardiologist told us today that it is so slight that he is not worried at all.  It's apparently a non-issue.  Being told that,  and really knowing that, are two different things.  I am trying to convince myself that he is right.

Noah, my one kid I thought would breeze through this,  actually has a slightly dilated main pulmonary artery.  And now we know that Kate does as well.  She actually has both the left and right pulmonary arteries dilated along with the main pulmonary artery.  So, in Noah,  this could be related to Marfans or it could be something completely different.  The Dr. is anxious to get the blood test back to see if Kate has the gene for Marfans because it will help figure Noah out.  That's the test that we are still waiting for our insurance to give us the go ahead and then it takes 8 weeks to get the results.  Either way,  Noah will be having another cardiac echo in a year to follow up and see if it's getting any bigger.  It's just barely off of normal, but given Kate and her heart issues,  we are going to monitor it. 

The kids are taking all of this information like troopers.  I think because I act like it's all good,  they believe it.  Good thing I am such a skilled actress.  I just keep hoping they don't catch me being teary and sad.  I have amazing kids.  So blessed.

Marci's Cardio

Not unexpected,  but good to know.  My cardiac echo came back normal today. I would throw in a Yay but I'm not really feeling it.  You all Yay for me.  I must need chocolate.  It is good news.  Now we go see how Abby and Noah's turned out on Friday.