Mighty Beautiful Heart

Being released to Ronald McDonald House has been great for both Alexandra and us!  She is able to play in the playrooms here and get a lot more sleep than in the hospital.  On Friday we were able to get her out in some fresh air for the first time in over three weeks.  Yesterday, we traveled a short distance to a huge mall.  It was great walking around and looking through stores just like we would do back home on a normal Saturday afternoon.

Today we took her to the Please Touch Museum which everyone said is a “must see.”  She had a great time in all the different areas, but the supermarket and kitchen were her favorites. She could have stayed all day in just those two places.

We have really enjoyed being all together for the weekend, as we prepare for testing tomorrow to determine whether or not we can be discharged completely.  Based on how well she has been doing this weekend, I’m quite sure it is only a matter of a couple days before we are on our way home finally!

Alexandra’s results came back a little better today.  While she still has fluid around her heart, she seems to be tolerating it well, so they are discharging us to Ronald McDonald House.  It is a little bittersweet, and I have been quite emotional today.  Naturally, I’m thrilled that she is doing so well that we are leaving the hospital, but I’m so sad for those children who still have no end in sight.  It’s very hard having your child play with these children or talk to the older ones for the last several weeks, and knowing that their future may not be as bright.

Alexandra is very excited about going to “Old McDonald’s House!”  We’re still trying to explain that Old McDonald had a farm and that we are actually going to Ronald McDonald’s House!  She has been talking about it for the last week or so that when she got better she could go there and play.  We’re happy she can finally do it!

On Monday, we will come back for a series of tests and possibly be released to go home early in the week.  We can’t wait!

There were no tests today, so Alexandra had a full day of playing in the playroom and having fun with the nurses.  When one nurse called her Alex, she quickly stated “I go by Alexandra!”  She also helped the nurses take her vitals by pointing out which came next and what body part was to be used.  She has certainly kept them on their toes!

Another, as I like to call them, “one weeker” was discharged today.  It’s always great to see someone do well and get out of here early, but it still makes us wonder why we are still here after three weeks!

Tomorrow we have a full day of testing, and the results will determine if we need to stay here longer or if we will be discharged to Ronald McDonald House and just come in for outpatient testing next week.  We are very hopeful it will be the later, as it will be nice to have the whole family together overnight again as well as cut down on the running back and forth.  It will also be fun for Alexandra to be back at Ronald McDonald House where she can participate in the many fun activities they have each evening after dinner.

(June 16 – Posted late due to technical difficulties.)  Alexandra slept better last night than she has since surgery, which meant I slept better too!  Clinically, not much has changed from yesterday, but her demeanor has improved dramatically over the last day or so.  Early today, she seemed to be breathing a little heavier which had some, including us, a little concerned.  However, by the afternoon, she seemed to be breathing normally.  They will continue to watch for any signs that the pericardial effusion is causing distress, but as long as she tolerates it, they will continue the use of diuretics to try to get rid of the fluid.  On Thursday, they will do labs, chest x-ray and echocardiogram, which will give them a better feel for the amount of fluid still around her heart.   

She went to the playroom several times today and played with some of the other children who have been here for long periods of time.  One little girl is waiting for a heart transplant, and I found out today that she has been here since early January with no end in sight.  I can’t even begin to imagine what that must be like, as I can tell you from experience that being here three weeks is three weeks too long! 

Tonight I became a bit nostalgic as I was getting Alexandra ready for bed and thought back to her first surgery and how far we have come.  During her first surgery, we were too scared to do much of the care and really relied on the nurses.  However, this time we have done so much on our own…we have given countless medicines and baths, arranged most of her meals, unhooked and rehooked leads, switched oxygen from the bedside to portable tanks and back, took the chest drain off the vacuum suction on the wall and put it back on (moving it also required us to untape and retape the box to the floor, push the box back and forth through the bed rails, which was an extremely tight fit, all while making sure it was kept completely upright each time she thought she wanted to get up and then wanted to get right back in bed ), etc.  When your child wants to take a walk, and you have to wait 20-30 minutes for the nurse to come do it, you learn pretty quickly how to do it yourself so your child doesn’t have a chance to change her mind! 

This experience has certainly been a test of character and perseverance.  When this is all behind us, I hope I can look back and know I did everything that I could do to make the best of it for my daughter.

They did an echo on Alexandra today and made the decision to pull her chest tube this afternoon, as it was not doing much of anything being positioned as high as it was.  The pleural effusions are much better, which was good news.  However, the fluid in the pericardial sac around the heart is worse.  Now we are in a wait and see mode to see if the fluid goes away on its own through the use of the diuretics, or if it gets worse, they will need to drain the fluid directly from the pericardial sac.  My husband likened the news to being able to ride the Rebel Yell (roller coaster at Kings Dominion in Richmond, Virginia) over and over again.  It’s not always easy, but it does help to try to keep your sense of humor during experiences like ours.  You learn pretty quickly that there is not really much you can control in the situation, and the best you can do is try to laugh a little.

Although she was awake at least once every hour last night, Alexandra was in a relatively good mood all day today.  She ate both breakfast and lunch in the playroon, a privilege reserved just for patients.  She also enjoyed playing with the dollhouses there as well as participated in music group.  She likes attending music group on her own and was very annoyed when she turned around at one point and saw that I was still there!

She seemed much happier without the chest tube and drainage box weighing her down when she walked around tonight.  We made a few laps around the hallways and went into the playroom for a while longer.  The nicest part was being able to snuggle together on the sofa in her room without worrying about where the chest tube was and whether or not we were going to knock over the drainage box.

I’m anxious to see how she sleeps tonight, as I’m sure she was waking up a lot because she kept rolling over onto her left side where the chest tube was inserted.  That had to be at the very least uncomfortable if not downright painful!  I’m looking forward to the day we can be home and all get a decent night’s sleep in our own beds!

I did not post yesterday, as not much had changed from Friday.  Unfortunately, today was not much different either.  Alexandra’s chest x-rays still look pretty much the same, and we are still working to get her sodium and potassium levels up.  They did clean and change the dressing around her chest tube today, which required a small dose of sedative.  The sedative made her very silly, so we had a nice stretch of time enjoying Alexandra singing every song she knows at the top of her lungs as we took her for a wagon ride.

Yesterday and today both, we took a little extra time for dinner at Ronald McDonald House and even layed down for a little while yesterday before dinner.  It felt wonderful for me to lay in an actual bed even if it was for just a very short time!  Today we went for a nice brunch outside of the hospital at a little restaurant we found when we were here over two years ago.  It was as nice as we had remembered and provided a nice respite from the hospital cafeteria! 

One thing that is hard to do during a hospital stay like this but so very important is making a little time for just you and your spouse.  It’s so easy to get caught up in everything going on with your child that you simply forget to carve out any time for each other.  However, that hour or two spent one-on-one will revive you and your relationship so you can come back to the hospital refreshed and deal with whatever comes.  For us, we came back to find Alexandra’s heart rate was up over 30 points.  We always check the monitor in the hallway to figure out if she is sleeping before going into her room.  Based on the heart rate, we went running, as we thought she must have been distressed about something only to be surprised by her sleeping.  Naturally, that made us even more concerned.  The doctor checked her and could not determine exactly what happened to make her heart rate jump but attributed it to coming down from the sedative.  After another hour or so, it came back down, but they are continuing to monitor it to make sure that doesn’t happen again.

Overall, it was a good weekend with Alexandra staying stable for the most part, and the two of us being able to have a little time for ourselves.

After the news we received late yesterday, we were relieved to get better news today from her cardiologist after her conversation with Alexandra’s surgeon.  There was still some indecision about whether all the fluid they were seeing was in the pericardial sac around the heart or just more effusions around the left lung.  We went through another series of chest x-rays to include one where they had her lay down completely on her left side. 

Even after all of that, there was still some conflicting opinions; however, most thought that it was effusions around the lung and that if it was in the pericardial sac around the heart that she would not be breathing or walking around as well as she is.  Therefore, we are staying the course for now with no other intervention at this point except an additional diuretic which makes three different ones she is taking now.

She walked quite a bit early today, and the physical therapist gave her a good workout making her walk to the playroom and around the hallway a couple of times.  Later in the afternoon, we took her to the playroom where she made friends with a little girl not much older who is awaiting a heart transplant.  We feel bad about being here for over two weeks, and they have been here for a couple of months already.  Who knows when she will receive a heart and how long she will need to stay after a transplant would happen.  It really puts things into perspective for us.

Unless you actually live through an experience like this, you can’t imagine how emotionally and physically exhausting it is.  There is constant stress, and even if things are going pretty well for you, you constantly sense the stress that surrounds you both here at the hospital and around Ronald McDonald House.  I know that things are going to turn the corner for Alexandra really soon, but my heart aches for those who I know will still be here long after we are gone!

The day started so hopeful and optimistic.  Alexandra slept through most of the night for the first time since surgery, which meant I even got a decent amount of sleep.  While she refused to walk to the playroom for music group, as soon as we got her down there and out of her wagon, she immediately walked over to the chair she wanted.  Later, she even suggested walking back to the playroom and, with a big smile on her face, called out to all the nurses and anyone else around “Look at me; I’m walking!”

She had a more extensive x-ray with two different views so they could get a better look at the effusions.  The good news is that the one side showed some improvement with the other side about the same.  However, there was some indecision as to whether one section was more pleural effusions or fluid in the pericardial sac, so an echo was ordered.  The echo showed that the fluid was definitely in the pericardial sac.  We should find out tomorrow if they are going to let it be for now to see if the diuretics will work, shift the existing chest tube or if they will go directly into the pericardial sac to drain the fluid.  Naturally, this is not what we wanted to hear.  Based on how she has been acting and walking around, we really thought things were improving a great deal.  It is disappointing that it is not.

To compound our disappointment is the fact that one family went home today after having the same surgery last Thursday, and another family is being discharged tomorrow after having surgery last Friday.  Here we are at over two weeks with no end in sight, and they are fortunate enough to be out of here in a week!  Of course, I’m happy for them, but it doesn’t change the fact that I am sad we’re still going to be around for a while.  I also have to remind myself that we have met and certainly seen others around here that have been here much longer and that however long we are here, our stay will come to an end.

Today was a big day for Alexandra.  The physical therapist came by and had her walk from her room to the playroom with assistance.  She played for a while and then we had her walk back to her room.  She cried the whole way but still walked!  She needs to gain her confidence and strength back, but we know it is just a matter of time before she is running around the hallways here!

They removed her oxygen today, and her sats have stayed pretty steady around 92-94.  Her chest x-ray today showed a good deal of improvement on both sides, which was very encouraging news.  Her chest tube is still draining, and they have not discussed when they might take it out, so we know we are still a ways off from going home.  However, we are encouraged by all the positive progress and the fact that she is acting even more like herself with each passing day.

Her rash is much better, but her coughing is still intense.  In fact she has thrown up the last two nights in a row due to choking on stuff she is coughing up.  As disgusting as it has been, the good news is that she is ridding it from her body!

We continue to be in awe of this hospital and what they are able to do here.  At Ronald McDonald House tonight at dinner, we met a couple who came here for fetal surgery for spina bifida.  I never knew such a surgery even existed, but CHOP is one of only two places in the country that performs it.  They have been here for almost a month and will need to be here for another couple of months until she has the baby.  Here we are at only two weeks, and we can’t wait to get out of here, and these people still have months to go.

We had the opportunity to walk around part of the oncology floor for the first time tonight while we were helping the volunteers of Ronald McDonald House deliver food to the family room it sponsors.  It was humbling to see children in the hallways with no hair playing and laughing together.  As bad as you may think you have it, around here you are constantly reminded that so many others have more serious problems.

We feel very blessed to be where we are and, while we have been on quite the roller coaster ride the last couple of weeks, we feel we are now on the right track towards home!

June 9 – Alexandra made a lot of progress today!  For the first time since before she was moved back to the CICU, she stood and took four steps on her own!  She even stood up by herself on a sofa/bed in the room to look out the window which overlooks the lobby area of the hospital to see some toy cars.  She also had a session with a physical therapist this afternoon.  Her demeanor has become much more like normal with her flashing smiles at the nurses as we passed them during wagon rides, and she even flirted with her evening male nurse!

Clinically, she has also shown improvement.  Her chest x-ray was the best it has been since right after surgery.  The right side showed a lot less fluid while her left side has not changed much yet.  The left side is still draining but is going at a slower pace now.  Her sodium levels were up enough that they agreed to let us forego the sodium supplement, which Alexandra hated.  She also took in enough fluids today so she did not need the IV fluids tonight.  They also decreased her oxygen.  She continues to cough a lot today, but everyone tells us this is a good thing, as it means she is able to expand her lungs more and will be able to get rid of the fluid better.

We continue to be reminded how fragile life is.  Early yesterday a teenager was admitted into the room next to us for his heart to be monitored.  He had taken an overdose of pills in an attempted suicide.  We got to talk to his parents last night, and I was amazed at how much concern they showed for Alexandra and her recovery when they were going through such a traumatic challenge themselves.  This morning when the doctors and nurses were right outside Alexandra’s room doing rounds, an alarm went off in our unit with instructions about a specific room.  When I heard the alarm and saw the reaction from the doctors and nurses who all went running, my heart just stopped, as I knew that someone’s child was in a dire situation.  We heard he had been taken back to the CICU and later found out that he is going to be okay, thank God!

While I would not wish our experiences on anyone, everything we have been going through has made me a stronger person, our marriage more solid and has given me a strong desire to help people in ways I never dreamed about before.