Wednesday, August 20, 2014

Hospital Stay

Hi all! I'm home! My stay in the hospital only consisted of 6 days, amazing. My personal goal was to get out the following Sunday, but I wasn't sure that was realistic. I had heard 5-7 days, a week, 2 weeks. This is the break down of my stay.

Day of Surgery 
Tuesday August 12, 2014

I had told the anesthesiologist before surgery that most of my anxiety was waking up with the breathing tube in. I'm not sure if he took that into consideration or I really just didn't need it because Chris said it was removed before he even saw me for the first time and we had been told multiple times that that's how he would see me first, was with the breathing tube still in place. My anesthesiologist was amazing. I was scared when they first wheeled me back to the pre-op holding area. He just kept reassuring me and telling me everything is going to be okay and I was going to make it through just fine. He even promised me. I'm going to have to find that man's name and send him a thank you card or flowers because he really made me feel reassured. I'm sure his lovely drugs had something to do with that as well. I also told him I wanted to see NOTHING in that operating room if that was possible. You can still be pretty with it when they wheel you back to the operating room and there are many times I remember what the operating room looks like, what's back there and I did not want that happening this time. I didn't want to see the heart-lung machine, the screens, the instruments and I don't remember anything. Chris and a pastor from our church was in the holding area with me at this time. We said our "see ya laters" and prayers and the anesthesiologist gave me my sleepy time medicine.

The next thing I remember was waking up and everything being very fuzzy and being in a lot of pain. I'm not much of a complainer when it comes to pain, but when I've been out of it for hours on end and don't really have my bearings I will let everyone know just how much pain I'm in the moment I wake up. And I remember letting everyone know just how much pain I was in at the beginning before they got it managed.

I was in the pediatric intensive care unit at first and everybody was great and took excellent care of me. I was actually able to get up and out of bed that first night in there. I just stood up beside my bed, but everyone seemed to be pretty impressed and excited that I did that little bit that evening. I was pretty surprised by how much pain I was actually not in. My back was hurting from the operating table and I felt like I had an elephant on my chest, but besides that I was pretty comfortable. P/T and O/T came by for a visit and explained what they would be doing throughout my hospital course and the goals they had set for me over the next few days.

Second Day
Wednesday August 13, 2014

On this morning I actually sat up in a recliner for the first part of the day. It felt so nice to get in a different position, but it was very exhausting all at the same time. A couple of the doctors made it by that day and explained to me what they had done and what the plan was from here on out. The surgeon explained what he did (which is all still a little foggy) and that he did more than what he initially planned. That everything went great and the outcome and how well I did through surgery made him very happy. Wednesday was pretty uneventful besides sitting up in the recliner and trying to eat. Eating in the hospital was difficult for me. And it wasn't because of hospital food. There is usually something on the tray that they offer that I can find appetizing and I will eat. I was still on a liquid diet, which was just fine by me cause I have a history of getting sick and not holding down food after surgery and vomiting after the surgery I just went through seemed like a complete nightmare.   Breakfast consisted of cream of wheat, coffee, juice and various other liquids I don't recall. Dinner was chicken broth, jell-o, juice, and tea. I tried my best to eat these things, but I didn't really have much of an appetite and filled up quickly.

Third Day
Thursday August 14, 2014

This day was much like the day before. I had developed some swelling in my left arm that had started that day and the therapists showed me techniques to try and work the fluid out. I just moved from the bed to the recliner working with the therapists and tolerating my liquid diet. There was talk of moving to the adult floor, but nothing changed. Slowly I was loosing IVs. They took my arterial line out that was located in my left hand/wrist and they took out my central line, located in my neck, on this day. I also had another IV site on my left hand that fell out on it's own and they left it out. I still had an IV in my right hand and my chest tubes for drainage in. Things were getting a little more comfortable and at least I could move my neck better. This day I could really start to feel my breastbone and the top of it is where the most pain was.

Fourth Day
Friday August 15, 2014

I was moved to the adult floor first thing Friday morning. Which was nice because I got my own room. I had been sharing a room with a little girl, I'd say around the age of 7, and it was pretty hard to listen to her complain about her pain and cry. Very strong little girl though, she was moving around more than me.

When I was moved to my own room on the adult floor, therapy started getting a little more aggressive. They wanted me out walking the hallway. I wasn't too thrilled with this idea because I still had chest tubes in and when they got moved the wrong way or lifted too high it hurt like no other. But, they strapped those suckers onto a rolling walker and down the hall I went. It was nice to walk and loosen up a bit.

I guess word had gotten out that I wasn't doing so great in the nutrition department because also this day two of my doctors came by and told me I needed to start eating and drinking better. They put me on a regular diet, told me to have whatever I wanted brought in if I would eat it and ordered me supplement protein shakes for in between meals. None of this really changed the fact that food was just not appealing to me. I tried to make them happy by drinking more liquids, which those actually sounded good. Apple juice is my choice of drink in a hospital. They always seem good there, not sure why.

Things were moving along pretty well and I was loosing lines and tubes left and right.On this afternoon my surgeon came by for a visit and decided that it was time to take my chest tubes out. Now, I was so ready for those nasty things to come out, I had been asking about when they would come out since Wednesday, but I had been warned all along, even weeks before that it was going to be an uncomfortable process. So, I lied down on the bed and he removed everything around that might potentially get blood splatter on it and explained exactly what he was going to do. I had three total, two were pretty central right under my rib cage right next to each other and one was off to the right side about an inch or so away. The plan was to pull the two right next to each other and then take a rest and then pull the next one. If you are sitting there wondering if I was given anything during this ordeal, no, I was not. I'm positive that if I would have pushed for it they would have ordered me something IV, but I just wanted them gone! So, I was to take a deep breath hold it, he would count to three and pull. And that's exactly how it went down. Let me tell you, that was one of the most disgusting things I have ever been through. The feeling, the sound, the thought, blah! Then he goes "okay, next one!". I was like "just wait a second". He was like "Okay, understandable" and put his hands up. The whole situation was kind of comical. My surgeon is a pretty funny guy in the first place and my reaction to the first two coming out, and then the nurse and the other doctor that were there were all kind of chuckling. After a few seconds I decided if I sat there any longer I was just going to delay it and I need to just get it over with. So, I gave the go ahead and out came the third one. Now, all you go Google drainage tubes after open heart surgery and understand just how gross all that really it. But, they were gone and that helped my breathing and helped me overall just feel a lot better. After this my independence improved dramatically cause I didn't have to have help lugging those things around and I could get in and out of bed on my own and when I wanted to.  

Fifth Day
Saturday August 16, 2014

By Saturday I'm doing pretty good. I just have one IV line in (not really using it for anything just have to have it in case of emergency) and I'm still on 2 liters of oxygen, but the doctors do away with that when they come see my later that morning. They decide that Sunday will be the day that I get to go home.

Discharge Day
Sunday August 17, 2014

This is really all this day is. Just getting me ready to go home and explaining all my medications that I am on and how to care for myself once I get home. Which, really is pretty normal routine. They removed my dressing on this morning, so there aren't any dressing changes to worry about or special care instructions. Just if it gets red, starts to ooze or I start running a 101 fever, I need to call. And then the fun stuff like not working for 6-8 weeks, not driving for 6 weeks, no pools, sun exposure and that's pretty much it. But, most importantly....

I AM HOME!

Monday, August 11, 2014

Eight hours

Here I sit 8 hours before my open heart surgery. I've waited to write another post since I've been having multiple emotions over the past week or so. I've cycled through fear, excitement, hope, uneasiness, and anxiousness, just to name a few. I've even wanted to call all my doctors and tell them I've changed my mind, I can't go through with it. Then I remind myself that this has to be done, I'll have to go through it at some point in my life, might as well be now when I am healthy and strong.

I expected to be a mess today. Even though I feel like I've gone through today with a deer in the headlights look, I am pretty content, at ease. Elliot only spent about an hour and a half at daycare today while I did my pre-op testing. I wanted to spend as much time as I could with her since she won't get to see me while I'm in the ICU. I've talked to her as much as I can about mommy staying in the hospital. I've tried to get her excited about different family members coming in town over the next week and she's handled the information pretty well. She's been playing doctor a lot, using me as the patient, so when I come home I know I'll have an excellent caregiver.

I don't know really what to expect. I'm just so ready to get it over with. Ready to start healing. Ready to get things back to normal as soon as possible.

Sunday, August 03, 2014

Final meeting with surgeon

On Thursday we met with my surgeon for the last time before the day of the surgery. I am terrible at asking questions. I always forget them during the visit and remember them after I have left the office. So, for the past couple of weeks I had made little notes on my phone with the "notes" app. My phone goes with me everywhere, so every time I would think of a question I would just whip my phone out and type it up and save it. I had about four questions. Yes, for the past few weeks that I had known of this appointment and this being one heck of a serious surgery I had thought of four whole questions. And they were all answered in a whopping five minutes. I thought they were pretty good, too. Thought they sounded pretty knowledgeable. Like:

  • "Will this surgery ease the workload my liver has taken on" (Yes).
  • "Will a wire closure for the sternum be used" (Yes, stainless steel wire closure, that will remain in the sternum).
  • "Will my daughter be able to see me while I'm in the hospital" (Not while in the ICU, but when I'm moved to the regular cardiac floor).
  • "How long will the drainage tubes remain in" (For a couple days depending on how long they are needed).

My questions seemed so minute after he squashed them so quickly. But, at least they all got answered, right? He shook our hands and said if we thought of any other questions for me to call the office and he would be glad to talk to us and if not we would see him the day of the surgery. By the way, have you ever shaken the hand of a surgeon? It was so soft and delicate. I guess he needs to take care of them, they are his money makers. For a few moments after that the condition of his hands were all I could think about. Those hands that were actually going to touch my heart in a matter of days! So weird to think about! After he left the room I actually turned to Chris and asked him if he had noticed how soft his hands were. 

If that wasn't enough to make the reality of surgery start setting in, the events that took place next were. Paperwork. Which was actually a relief, because signing paperwork lying in a hospital bed minutes before they wheel you back is not really ideal in my mind. (The last few procedures I've had done went just like that.) I guess with major surgeries they take pity on your nerves. 

We went through the list of do's and don'ts and were given a date and instructions for my pre-op testing. For now, I'll keep thinking of those questions. And I can guarantee he be getting a phone call...or two.

Friday, August 01, 2014

My heart condition

I know I have briefly mentioned my heart condition in my blog before. I told how with my pregnancies there was a very small chance of it being passed down genetically. Fortunately that didn't happen. I am the only one in my family that has this or any type of structural heart defect. It's called Transposition of the Great Arteries, now referred to as Transposition of the Great Vessels. It's a congenital defect and there is no explanation for why it happens at this time. The defect happens while the heart is developing in the very early stages of life. The abnormality is very severe and is not compatible with life. So shortly after the baby is born he/she will need open heart surgery to correct the abnormality.


This is a normal heart. This picture shows the circulation of blood. Below I have a picture of a normal heart compared to a heart with Transposition of the Great Arteries.


Here you can see the structural differences. This defect does not allow the oxygenated blood to be carried out into the body. The heart keeps circulating the oxygenated blood towards the heart and the de-oxygenated blood away from the heart. 

Today they do a procedure called the Atrial Switch operation. It is very effective and has great long-term results.  But, I was born in 1984 and during that time they were using a procedure called the "Mustard" procedure. The Atrial Switch procedure came along a couple years later, so I'm one of the last to have the Mustard procedure. Now, don't get me wrong, the Mustard procedure saved my life and was a great "fix" for it's time, but it just doesn't withstand time and the wear and tear on the heart. 

This is a picture of what the heart looks like after the Mustard procedure. Now, the left side of the heart is doing the work that the right side of the heart was created to do and the right side of the heart is doing the work that the left side of the heart was created to do. Not really ideal, but hey, it works and I'm 30! 

Over time these areas that have been surgically altered get leaks and become obstructed from scar tissue and another heart surgery is necessary to rebuild these areas. I have come to that point in my life. The doctors say that since the onset of these symptoms caused by this deterioration is slow that I really don't notice how bad I feel. That I have adapted to the changes in my health overtime and once I have the surgery and recover I will realize just how bad I was feeling. This makes me excited. I can't wait to see what they are talking about. It's just what I have to go through to get there is frightening. But, I am optimistic and know I am in great hands. 


Wednesday, July 30, 2014

Anxiety

Two weeks from today I will be on the other side of my open heart surgery. I have moments of great excitement for the time to be here and then moments of shear fear of what could go wrong. I guess this is all normal for anyone facing a major surgery. I made the surgery date in early July and it feels like time is just moving at a snail's pace. I am looking forward to feeling better and being able to do things that I couldn't endure before. Maybe I'll be able to run? Maybe I'll be able to sit on the floor with my daughter without my legs falling asleep almost immediately. Maybe climbing a hill won't be so difficult and I won't have to stop every 10 feet to catch my breath. I keep telling myself if 18-month-old me can do it, 30-year-old me can do it.