Rady Children's Hospital

It's been the longest day.  I can't even imagine starting this post. I was thinking last night that they need counselors standing by to tell you everything is going to be fine,  and people giving you a massage while you wait for surgery to be over.  No such luck.  I'm sitting with Kate in her room at Rady's.  We arrived at 7:45 this morning and were scheduled for surgery at 9:50.  We got Kate's paperwork done, got her dressed in her pants and shirt,  and then we waited.  She didn't actually go in until 11:30.  Figures.   I have been nervous about her going under,  dumb I know,  but I'm her mom.  I ended up going in with her into the operating room.

The anesthesiologist was very sweet and gave Kate his iPhone with Tangled on it to watch before we went into surgery.  She was still watching it as we walked into the operating room.  As soon as Kate saw the room, the Drs, nurses, and equipment, she panicked.  I don't blame her, very intimidating even for someone like me who has been on the table more than once.  We ended up putting her to "sleep" while she sat on my lap.  They used strawberry smelling gas.  At first Kate was fine, but as soon as she could feel something wasn't quite right she got a little nervous.  The gas makes your body move and jerk a little and also makes you laugh.  I'm sure it was a little scary for her.  I held her and whispered in her ear that it was going to be ok and that this was all normal, that I was there and loved her.  What do you say at a time like that?  Everyone in the room seemed concerned about me.  I almost blurted out that I have worked as an RN so I was fine,  then Kate went limp and that was that.  I helped lift her onto the operating bed,  gave her a hug and a kiss and cried my way back out to the waiting area.

The surgery itself took pretty much the whole 2 hours.  Dr. Wenger met us in a consultation room and told us everything went fine.  He said she did not need a transfusion this time,  but may need one on the next surgery in two weeks.  I can't even go there mentally.  Anyway,  he also told us about the drains in her leg and how the cast was situated, etc.  I am glad I have some experience as a nurse,  I imagine this could really freak some people out.  It's so much harder when it's your own baby,  but I feel a little more prepared than some.

About 20 minutes later we were buzzed to recovery.  Just one of us could go in and it was me.  Ethan is being good and realizing that I NEED to be with her.  She looked,  and still looks,  pale.  She was complaining of pain when I got there and wanted her glasses.  Poor blind kiddo.  They gave her an extra bolus of medicine,  a morphine family drug,  and she slipped off for a few minutes.  She was hugging her stuffed giraffe we brought the entire time. In one of her awake, but groggy moments, she told me she didn't want to have the other leg operated on.  Dang.  She continued to complain of pain off and on.  I think we have a pretty good handle on it now.

We are now up in her room and I can tell she feels a bit better because she is complaining of hunger instead of pain.  We're going slow on crackers and water and hopefully will have something better in a little while.  She says her casted leg is hot,  but the room is freezing.  It's a off and on with blankets and covering one leg and leaving the other.  We were initially told two nights, but we are probably looking at three.

I'm tired and my long night hasn't even started yet.  It helps that Kate is so sweet.  Please and thank you with everything the nurse does for her,  even when she's in pain.  Couldn't ask for a better baby.  Your youngest is always your baby, right?

I have ordered a hospital bed with a trapeze bar for home.  After talking with someone else who's been in this situation,  I decided this would be convenient.  Kate can lift and re-situate herself instead of relying on someone else.  A wheelchair is also coming.  This is if my insurance approves the bed.  Wheelchair has already been approved.

I have been feeling a little Job like lately and have been repeating two scriptures to myself often.  The first one is Job 13:15.  "Though he slay me,  yet will I trust in him."  Keeping faith even though I'm feeling a little picked on.  I wish it were me being picked on,  that would be so much easier.

The second scripture is 2 Nephi 2:25 "..men are,  that they might have joy."  I am maintaining hope that there will be joy somewhere down the road.  I need a big dose.

Thank you for all the wonderful thoughts and prayers.  They have lifted us up and strengthened us all day.  We are truly blessed to have such wonderful friends and families.

Upcoming Surgery

With surgery coming up next week,  and Kate never lets us forget,  we are taking a "family day" and going to Disneyland.  We are going to stay at Paradise Pier Hotel,  which should be fun.    We are staying up there to play Thursday and Friday.   We all love Disneyland and you seem to forget your troubles once you walk through those gates.  That's what I am counting on anyway.  I'm doing biggest loser with my family,  and I'm already losing.  Apparently I'm a stress eater.  Who knew?  It will be soo much worse after a day at Disneyland.  Battered corn dogs and ice cream cones, here I come.  It's going to be warm, high 70's,  so the ice cream cone is totally going to happen.

We FINALLY  got the lab slip to go get Kate tested for the Marfan gene.  I'm taking her in tomorrow morning.  If she tests positive then the rest of us will be tested.  Her genetics Dr.  thinks that Kate's Marfans is a genetic anomaly.  I hope so.  I cannot bare to think about having any of this going on with one more child.

Surgery Dates

We saw Dr. Wenger on Monday and now have the dates for Kate's surgery locked down.  She is getting the left leg done on January 31,  and the right leg on February 14th.   Happy Valentines Day, right?

Dr. Wenger went through all the x-rays and pictures with us and showed us exactly what was going on and what he thought we should do.  It's all kind of long and complicated but here's the short of it.  Kate's femur heads are pushing up into her pelvic bone right near her growth plates,  which will only make it easier for her femur head to push through as the growth plate area is not strong.  I am telling this in very simple terms,  it's easier for me.  Anyway,  they will be taking a triangle section of bone from each thigh and using it to reinforce the pelvic bone.  At the area where they take the bone from the thigh they will be placing a steel plate.  If you look at the photo you can see the triangle piece and then a kind of drawing of what the steel plate will be like.  The plates will be removed in a couple of years.  Yay, more fun to look forward to.

Secondly, your femur heads naturally go into your pelvic socket at a kind of angle that puts pressure in the socket.  This is great for non-Marfan people whose bones are not soft,  but stinks for Kate.  They are going to realign her femur heads so they place more pressure going up instead of at an angle.  That way the pressure will be on a stronger surface where the bone is not so thin.  This will not interfere with her range of motion.

We had the option of spreading the surgeries out in several different ways.  We have chosen to do them 2 weeks apart which decreases the total time in the cast and wheelchair by about a month.  First cast will go all the way down the left leg to right above her ankle and up around her hips.  When she gets the second leg done,  the cast will go to both ankles and there will be a bar between them just like Mandi's cast was.  She cannot put ANY weight on her feet for about 10 weeks all together.  The cast will stay on 6-8 weeks depending, and she will be in a wheelchair for 4 weeks after the fact.  We are just aiming that by summer Kate will be back to her regular self.

Kate had a couple of difficult days with the news but seems to be alright now.  She will still say she doesn't want surgery,  but after the Dr.  explained what may happen if we don't do the surgery,  she is a bit more compliant.  I guess people with this condition,  if not caught early enough and treated,  can end up getting hip replacements in their late teens early twenties.  Also, pain and arthritis,  difficulty walking, etc.  He did explain that this was fairly rare and gave us some info to read about procedure.  This SHOULD fix things until Kate is around 50 years old or so.  She may need a hip replacement at that age.

That's a lot of information.  Probably more than anyone needed but it should cover everyone's questions.  Maybe.  I hope. 

Oh,  I'm putting off school for a few months.  I think I have a solid nursing job right here at my own house, which I am fine with.  I'm kinda partial towards the patient.

Surgery and Kate

We broke the news to Kate about having to have surgery.  The word surgery sent her into some tears.  Not actual sobbing,  but some "I don't want to have surgery" tears.  Hard to take.  We pulled up her x-rays and showed her exactly what is going on with her hips and femur head and explained in simple terms what will happen.  She knows there will be a cast and wheelchair involved.  She wasn't very happy about that,  but when we told her she was moving into my bedroom and will be sleeping with me,  she actually got a big smile on her face and gave me a hug.  What can I say,  I'm just a party.  Everyone wants to hang with me.

My sister, Mandi,  was in a body cast when she was six,  she was hit by a truck.  My mom sent some pictures of Mandi in her cast for me to show Kate.  We pulled them out for her to see and it seemed to make her feel better.  This is Mandi and my cat Shasta in the picture.

I told Kate that we are going to see the Dr.  on Monday and he would give us the details of the surgery, etc.  Kate said she wants to know the details of the cast and wheelchair,  but when he's talking about the about the actual surgery she would like to put earplugs in and watch a movie on the iPad.  I thought that was a brilliant idea.  By the end of the conversation she really just wanted to go back to watching cartoons, so I guess we are doing alright today.  We'll see how Monday goes.  Thank you for all of your thoughts and prayers. Keep 'em coming!

No Contacts

We went to try our second pair of contacts today and it didn't go well.  We got one contact in and that was all Kate was having.  There were actual tears.  She said it was really uncomfortable and blurry.  So, there you go.  No contacts.

As we were leaving the Dr.'s office,  I asked Kate if she wanted to ditch school and go see the seals at the beach.  She said sure, but a bit hesitantly.   We got in the van and started to drive away from the clinic and Kate asked me if we were REALLY going to beach. When I said of course we are,  she got excited and said "Yay" and added that she always has the most fun with her mom.  Love that.  As we were getting in the van to come home,  Kate told me that this was a special treat and she thanked me with a hug.  It melted me.  Melts me still. 

The plan now is to call Dr. Heichel at Shiley Eye Center and see if waiting for surgery is really the best idea.  I've had other sources tell me that waiting may not be in her best interest.  Next appointment is Monday with the hips Dr.  Not looking forward to that one.  It helps that it's a beautiful sunny day, 87 degrees outside on January 4th. 

The Holidays--Hips and Eyes

 We went to Utah for Christmas and Kate had a great time playing with all of her cousins.  She is playing model with her cousin Mckell at the Union Train Station where we froze our patooties off in the name of family pictures.

I received a call from Dr. Wenger's office right before Arthur Christmas was about to start.  I ran out of the theater so I could hear him.  This was one of the Dr.'s working with Dr. Wenger,  not the man himself.  He said that after they had a meeting with other docs in orthopedics,  it was decided that Kate will need hip surgery on both sides.  The big, once a month meeting was actually canceled, so I guess this was just with the guys from Rady Children's.  He said that the left leg is worse than the right one and should be operated on first.  Her femur head is not only heading into her pelvic bone,  it is also misaligned.  I heard the words growth plates and steel plates.  I was squatting down on the floor with my knees up to my chest and was starting to think that maybe I shouldn't look like I was having issues so I can't tell you everything about that part of the conversation.

What I do remember is that she will have a cast that goes up to her waist,  it will bend at the waist,  and then down her leg.  Not sure how that works,  guess I'll find out.  She cannot use crutches because she can't put ANY weight on her leg so we are looking at 6 weeks in a wheelchair for EACH leg.  They can space the surgeries weeks to months apart, or they can do them just two weeks apart and she will be fully cast up each leg but your recovery time is cut down. He also said it wasn't an emergency,  but that we should schedule within or a month or so.  That feels like an emergency to me.   We go back to the Dr. on the 9th and get the details and figure out the best way to schedule the surgeries. Kate has always complained of pain in her thighs,  we even had an x-ray of them a few years ago,  her pediatrician said it must be growing pains.  I did ask the Dr. if her thigh pain could be referred from her pelvic/femur issues and the answer was yes. That is such a bummer,  I should be happy to have a cause I guess,  but I'm not.   I haven't told Kate yet.  I will before we go to the Dr.  Do not want to have that conversation and I need to be emotionally ready for it for her sake.  Still waiting for that to happen.

 In the meantime,  we got two kittens for Christmas.  Don't ask.  They sure make Kate smile.  Totally worth it. The black one is Bagheera,  and the ragdoll mix is Indy.   I am hoping that they will help distract her during her time in a wheelchair.  IF the cast only goes to her knee,  I am hoping to take her to Disneyland and go on the easy rides if she feels well enough. Zoo outings?  

I am just going to pull her out of school.  She is a smart kid,  I'm sure we can handle a little home school.  Hopefully have some play dates with friends to watch movies and play games, etc.  This also means that my going back to school will be put on hold most likely.  I'll know for sure when we schedule the surgery.  I hate typing that word,  surgery.

Kate is being fitted with her second pair of contacts on Wednesday.  I'm torn about this.  I'm told that surgery sooner might be best.  Insert screaming here.

The Hips

Kate had a CT scan of her hips today.  This almost didn't happen.  Our insurance only cleared her for one side.  Dumbest thing I have heard.  How can you see what's going on if you just get one side?  Her Dr.,  Dr. Wenger,  fought with our insurance provider and got both sides approved.  We only had a few days to get her in for the test because Dr. Wenger is having a meeting with a group of Dr.'s on Tuesday,  December 20th, to discuss her case.  We go back on January 9th to hear what the panel of Dr.'s think we should do.  I can call before then to see what he has to say about her CT results. 

We are getting pretty used to going to Rady Children's Hospital.  As we were hopping out of the van,  Kate asked what we were taking a picture of today,  her heart or her hips.  After I told her it was her hips,  she skipped her way to the parking garage elevator,  and I had a little pain in my heart.  She is so happy and carefree right now.  I hope that this is how it will be for a long time.  I had to stand in another room while Kate had her CT scan.  It had a little window and this is the best picture I could get.  They taped her feet to a little board and put a warm blanket on her,  which she loved.  It lasted only about 5 minutes which was just about right for both of us.  She said she couldn't see that I was behind her because she had to hold very still.  What a good patient!

Kate has always complained of some leg pain,  along her thigh's mostly.  We even took her to have x-rays a few years ago.  They didn't see anything and we chalked it up to growing pains.  Kate legs go on for miles,  so it made some sense.  Now, of course,  since she has been complaining of leg aches a little more,  I am wondering if it is referred pain from her hip issues somehow.  A little Motrin fixes her up,  but I will mention this to her Dr.  when I call for the results of the CT scan.  It's totally likely that these aches and pains have zero to do with her hips.  That's what I tell myself anyway.