Hustle and Bustle

The beginning of my week in Ohio was nice and relaxing.  I slept as late as I wanted, I was fed 3 meals a day without having to think about what to have, I came and went as I pleased and I watched a lot of TV and played on my computer.  Since I checked into the hospital yesterday afternoon, it has been anything but relaxing.

I knew my heart beat was high and erratic.  I can feel that.  But because I was relaxing and not doing much, I didn't feel bad.  Apparently, my heart rate doesn't sit so well with the doctors here.  I have met about 7 different doctors and a nurse practitioner so far, and I haven't even been here 24 hours.  The nursing staff is great.  I am in a corner room, which is bigger than the average room.  I like to call it the penthouse suite.  It makes me feel a little better.  I have no overall complaints with the facilities or the care.  I must say, for being in the north, everyone I have encountered here has been very friendly.

But the doctors don't seem to know what to do with my high rate.  I think their initial reaction is to throw medicine at it, but with the procedure tomorrow, not much can be given because if you suppress the arrhythmia, then it will be difficult for the doctors to find where it's coming from in order to get rid of it.  So I've been fighting them a little bit on that.  Yesterday they gave me a small oral dose of a drug to help bring my heart rate down some.  But it is short acting and doesn't stay in the system long.  My heart rate has been consistently 140-150 and they ideally would like it to be below 100.  They have given me a few IV doses of the same drug and that works in the short term, but then my heart rate goes back up.  One doctor told me this morning they wanted to start an IV drip of a medicine that would help, and I refused to take it until one of 3 particular doctors said it was ok to take.  I came all this way and I'm not going to risk messing things up for the procedure tomorrow.  The decision was finally made that as long as I feel okay with the heart rate where it is, they would not give me any more medicine.  My momma would be so proud of me for standing my ground.

Speaking of IV's, that is always tricky with me.  I don't know if it's because I've been stuck so many times over the years or because I tend to not drink much fluids during the day, but starting an IV on me has always been fairly difficult.  Yesterday, the nurse tried once and couldn't get it.  So they brought in a cool ultrasound machine that allows them to see where the veins are so they can get an IV started.  Well apparently, even with the ultrasound, they could only find one spot to start the IV and that was in the bend of my elbow on my right arm.  Seriously, my right arm?  So I'm trying to do whatever I can to make sure this IV stays and they don't have to try and start a new one.

As I was writing this, 4 new doctors came in to see me.  I cannot keep them all straight.  None of them are who I want to be seeing.  But I am supposed to be getting a visit from one of the main 3 sometime this morning.  The "main 3" as I call them consist of my favorite doctor in the whole wide world, Dr. K, who is a pediatric electrophysiologist, Another Dr. K, who is an adult electrophysiologist, and Dr. D, who is a cardiologist that specializes in adults with congenital heart disease.  Those kinds of doctors are few and far between, which makes being an adult with congenital heart disease difficult.  Nobody really knows what to do with me.  That's why I think this team that is assembled here is the best way to go about it.  You have doctors from different specialties working together to make everything come together.  Hopefully it will.

The only down side today has been that I haven't been given breakfast yet, and now it's 10:30.  Someone put orders in yesterday that said I was not to have anything to eat or drink after midnight last night, but it was supposed to be after midnight tonight.  So they didn't have a breakfast tray ordered for me.  The PCA came in about 30 minutes ago and ordered food for me, but I haven't received it yet.  By the time I finish breakfast, my lunch tray will be arriving.  But, if that is the only hiccup, I can deal with it.

Right now, I'm just waiting for Tommy to get here.  His flight is supposed to land around 11am, which should put him at the hospital no later than noon.  I'm looking forward to seeing him.  Everyone keeps asking if anyone is with me, and I think they feel sorry for me that I'm by myself.  I honestly don't mind it and honestly, since I've been in the hospital, I haven't been by myself much.  Every time I look up, someone different is walking in.

I miss my Johnny at home.  I am going to try to FaceTime with him today if I can be alone long enough.  I know he's in good hands with Caitlin, but I also know how difficult keeping him occupied can be.  I think Caitlin has a few outings planned with him though.  Yesterday she took him shopping, and I know he loves that.

Well, my food has arrived and at the same time the lady coming to give me an echo walked in.  So I need to go and eat so I can have the echo done afterward.  Certainly never a dull moment around here.

Down Time

I made it to Columbus yesterday and the flight was uneventful.  I arrived at the Ronald McDonald House around 5pm.  I have to say this place is far nicer than I was expecting.  I have experience with the smaller Ronald McDonald House that is inside of Texas Children's but I never stayed at the larger, freestanding house.  The room is very similar to a hotel.  There are a lot of amenities here that help to make it feel more like home.  They have a TV area in the main lobby along with a few other TV rooms in the other parts of the house.  They have an exercise center, which I don't plan to use.  They have a game room with a pool table and air hockey along with some other games.  They have free laundry services as well as a fully stocked kitchen.  They actually have 4 kitchen areas where people can cook.  And they provide 3 meals a day, every day.  There is also a media room with nice recliner chairs and a big screen where you can check out DVD's to watch.  Being in Columbus, we are in the heart of Ohio State University.  So one area here was donated by Jim Tressel and his wife, the former long time coach of Ohio State, and one room is designated for watching Ohio State Football on Saturdays during football season.  It is really nice here.

I have mostly hung out in my room, watching TV or reading.  Oh, and I've played a lot of Candy Crush.  I slept until 9:00 this morning, and felt a little guilty for sleeping that late.  Then I walked across the street to check out the hospital and to find my way to the Cardiology clinic, so I'll know where to go tomorrow.  The Hospital itself is pretty nice.  It's a children's hospital, so the open areas are decorated super cute.  I even took a picture inside the lobby this morning.

Children's Hospital Lobby

Also, while I was there I checked out the gift shop and I found this toy that I will definitely have to get John.

Tommy said that we can get it and let John chew and slobber all over the Ohio State logo.  Sounds like a good plan to me.

After Lunch, I went to see a movie.  I saw the Jackie Robinson movie, 42 and enjoyed it.  I was the only person in the theatre.  Kind of weird, but also kind of nice.

Overall I feel fine.  I feel my heart beating fast most of the day, but I think because I'm not home trying to keep up with John, then I don't feel terrible.  That may change tomorrow, but for now, I'm just going to enjoy the time to myself, since we all know that is something moms rarely get.

Thanks for all of the sweet text messages, emails and phone calls I have received from so many people saying they are praying for me.  It is very much appreciated.  I tried to Face Time with John this morning, but he was too busy looking at Ms. Caitlin to even realize it was me.  I guess I haven't been gone long enough for him to miss me.

Calling all Prayer Warriors

A couple of posts ago, I told you about our summer plans and I mentioned that I would be going to Ohio for a heart procedure.  Well, the time has come and I wanted to share just a short post about our plans for next week and how you can pray for us.

Saturday night, I will take my last dose of anti-arrhythmia medication and then Sunday I will get on a plane and fly to Columbus.  I have a reservation at the Ronald McDonald House at Nationwide Children's Hospital and will be staying there possibly 3 nights.   On Tuesday, I will see my doctor in clinic for her to do some routine tests to check the function of my heart.  She plans to admit me into the Ross Heart Hospital sometime on Wednesday, unless I'm feeling bad before Wednesday.  Then she'll admit me earlier.  Thursday morning, Tommy will fly up to meet me and sometime that day, we will meet the Adult Congenital Heart Team who will be overseeing my care while I'm there.  Then, sometime on Friday, I will have the procedure.  If all goes according to plan, I will be able to leave the hospital sometime on Saturday and we plan to fly home Sunday.  If the procedure does not work, then I may have to go into the hospital once I get home in order to start the medication that I'm trying so hard not to have to take.

So here are the specific things you guys can pray for.  

1.  Pray for safe travels for both Tommy and me.  

2.  Pray for John as he stays home with our nanny while we are away.  

3.  Pray for the nanny, Caitlin, as this will be her first time to keep John overnight.  Fortunately, we      have night nursing to give her a break.  

4.  Pray for the procedure itself.  Pray that it goes smoothly with no complications.  Pray that they are able to get rid of some of the arrhythmia if not all of it.  Pray that I will not have to go on the new medication.  

5.  Pray that I will tolerate being off of my medication the first part of the week.  

6.  Pray for the doctors involved.  Pray for wisdom to make the right decisions during the procedure.

I'll do my best to keep everyone updated while I'm there.

Unexpected Blessing

Last night, we went out to dinner with some of our closest friends to one of our favorite Mexican restaurants.  We sat out on the patio so we could enjoy the weather and the atmosphere.  The adults sat at one end of the table while the kids sat at the other end.  We had great conversation and many, many laughs.  John was sitting in his chair next to me, taking in the surroundings and watching all of the people around us.  We were finished eating, and the other kids were off getting their faces and arms painted by a lady the restaurant had there.  The evening was perfect.  It really couldn't get any better, so we thought.

While we were sitting there, a young girl and her mom walked up to John and started talking to him.  It was obvious that they knew him, but I did not recognize them.  I was sure it must be someone from school that I'm supposed to know, but just couldn't place them.  Finally the mom introduced her daughter, Emma, and said that she was in John's second grade class at Shafer.  He gets to spend 20 minutes a day in the classroom with other second graders for reading.  And word on the street is the kids usually fight over who gets to read to John.   According to the mom, Emma says she likes to scoot a little closer to John because he likes to put his hand on her arm and when she's too far away, he has to reach for her.  Then the mom told us a story that I will never forget.

At some point during the year, the school had a contest for drawing a picture of the school's mascot, which is a silver knight.  I'm not sure what the contest was for.  Maybe it was for the cover of the yearbook.  Anyway, mom said that Emma came home excited about drawing a picture of a knight.  But Emma noticed that all of the other kids were just drawing ordinary knights.  Emma thought about it and said that sometimes a knight can be in a wheel chair.  So Emma googled a picture of a knight and a picture of a wheel chair and decided that was what she would draw.  She had to get help from a friend because she couldn't figure out how to bend the knight's knees and make him fit into the chair.  But eventually she figured it out and got her drawing to look the way she wanted.  She then titled her picture "John".  Emma didn't win the contest and she didn't get her knight on the cover, but she gave something to Tommy and I, and to everyone sitting at our table that none of us will ever forget.  She showed compassion for our boy that nobody asked her to show.  She touched all of our hearts with that story, and we will never forget the kindness she showed.  It was great to meet her and her mom.  Mom says that she was so happy to finally meet John because Emma talks about him all of the time.

Not only did this just melt our hearts, but it taught me several things.  First of all, I am absolutely sure that John is at the school God wants him to be at.  Even with the heartache of having to leave OKE and his teacher, God knew exactly what he was doing, just as he always does.  He put our boy in a place where he can be taught, and loved and where he can also touch the hearts of other staff as well as students.  Secondly, I learned that those 20 minutes every day that John gets to spend in the regular ed second grade class is very important.  No matter how short of a time it seems, it is obviously enough time for John to touch the hearts of his fellow classmates and to build meaningful relationships.

I told Emma and her mom about our Special Buddies program at Shafer and told them that I would love for Emma to be a part of it next year.  She is a perfect example of what Special Buddies is all about.  Emma said she would love to be in Special Buddies and that she would love to be John's buddy.  Hopefully they will end up in the same homeroom next year.  I might have to see what I can do about that.  Emma's mom took my phone number and she is supposed to text me a picture of the drawing that Emma made.  I can't wait to see it!!!