Mighty Beautiful Heart

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.

After another horrible night of screaming and crying and no sleep, we actually had a good day today!  The doctors came up with a strategy of pain relief to include valium to get her into a good sleep.  Unfortunately, even the valium only provided her with around two hours of sleep; nothing else really gave her any relief.

We went on wagon rides for the better part of the day, and we even participated in painting ceramics and playing musical instruments.  She had a real bath after her nurse covered her drainage tube area.  Alexandra really enjoyed herself today, and I believe it was so helpful to make things more like normal.

 Her fluid is still draining (over 1,700 cc’s now), and her x-ray looks pretty much the same.  While the effusions are not getting better yet, we feel some relief that she is acting more like her funny, happy self.  They are still trying to figure out the rash on her neck and are planning to discuss it again at rounds tomorrow morning.  It looks like they will put her on IV fluids again tonight, as she has not been drinking near what they would like her to.  However, with our nurse’s help, we were able to get her a fresh banana smoothie tonight much like she has at home, and she drank more of that than she consumed of fluids all day long.

Tomorrow, we plan to try to get her to walk at least a few steps and hope she feels as well as she did today.

Last night was another rough night with little to no sleep for either one of us.  Alexandra couldn’t seem to get comfortable, and it seemed that there were endless visits from nurses or other hospital staff all night long.  Of course, the beeping at the end of a round of IV meds throughout the night doesn’t help either!

Today, we were able to get her up and about more.  She mostly sat up in the wagon, although she did sit a couple of times in a chair to color and do sticker books.  She has also wanted us to read to her, which is something she has not cared about since coming to the hospital.

We had one difficult period where it was obvious that her tummy hurt her (she even told us so), but we believe we now have a game plan in place to rectify that situation.  She is still draining a lot of fluid from her left side (over 1,350 cc’s now), and her right side still has the effusions, which have not gotten better but have not gotten worse either.  Hopefully, if we can keep her tummy feeling better, we can get her walking again, which will help even more with the fluid.

She developed some sort of a rash on the front of her neck, which they started treating late yesterday.  Unfortunately, that has now spread down close to her incision and around her neck more.  The doctors are watching it closely and changing to another treatment tonight.

While we are totally exhausted at this point, we find strength through others who provide such wonderful encouragement through our CarePages site and by seeing more and more of our sweet child and less of the terrible pain she has been experiencing.

I look forward to tomorrow when we, hopefully, have the tummy pain under control and can work with the physical therapy and child life specialists to get her doing more of her normal activities.

Yesterday went so well that I was sure we were on our way to a smooth recovery.  However, that changed as the night progressed.  Unfortunately, it was determined around 10:30 p.m. last night that Alexandra’s IV would not hold through her next round of IV meds, so it needed to be changed.  The first IV tech who came in tried twice and lost the vein, but a second one got it her first try.  Naturally, Alexandra was very upset about both of them!  After that, she just couldn’t go to sleep and seemed to be in discomfort even though she was on Tylenol and Ibuprofen (spaced out appropriately) throughout the night.
 
Since she didn’t get sleep, which was further compounded by the fact that her tummy was extremely bloated, she had a tough day.  It’s so frustrating because you get one thing under control only to have something else go wrong.  You give her pain medicine which constipates her only to give her more pain.  You give her more fluids to keep her intake up while at the same time you are draining tremendous amounts of fluid out of her (we’re up to 930 cc’s now from the left side!).  It’s just a vicious cycle, and it can really wear you down. 
 
We were able to get her up and around on wagon rides a few times today and into the playroom a couple of times.  While we can’t get her to actually stand much less walk at this point, it’s good for her to at least be upright.  The more we can do this, the better it will be for fluid removal.  However, they just can’t seem to get her comfort level where it needs to be for her to take that step.  The best part of the day came late when she finally had a huge diaper.  That seemed to take care of some of the bloating, and she ate a good dinner. 

While I am cautiously optimistic, I believe that if we can keep ahead of her pain and keep the messy diapers coming, we can get her more active which, in turn, will help the fluid and get us out of here!

What a difference a day and a drainage tube make!  Late last night, Alexandra became inconsolable.  She was screaming and crying for anything to eat or drink, but I couldn’t give her anything.  She didn’t even want to be held, which was about the only thing I could offer her.  I can usually get through the toughest of times without a problem, but last night, I went into the bathroom, covered my ears and cried my eyes out for a couple of minutes.  Then, I pulled myself together and tried to offer any comfort I could for the rest of the night.

It was a restless night with little to no sleep, and the day started at 5 a.m.  They took her back around 7:00 a.m. to insert the tube, called a pigtail.  They immediately drained 350 ccs from just the one side, which I have been told is the equivalent of about 12 ounces.  Since then, they have drained another 140 ccs.  I can’t even begin to imagine that much fluid in such a little body.

This afternoon, she has been understandably tired and has only complained of her tummy hurting.  That, unfortunately, is still an issue which is being worked on.  She has already eaten more than she has the past 48 hours.  She seems so much more comfortable, and we have been treated to many smiles and a few of her funny antics.

What a relief!  I am very hopeful that it will be smooth sailing from now on!

Talk about a punch in the gut!  Just when we thought things were moving in the right direction again, we were hit with another whammy today.  Yesterday went so well, and things seemed to be turning the corner.  However, late last night Alexandra began getting really fussy again.  Neither one of us got much sleep last night, so she woke up this morning very irritable.  Unfortunately, lack of sleep was not the only reason for her crankiness.

When her cardiologist came in this morning, we both noticed that she seemed to be having a harder time breathing.  They had already taken a chest x-ray, so she went to review it.  From the x-ray, they couldn’t tell if there was more fluid or if part of the left lung had collapsed.  While either option did not sound good to me, they didn’t seem terribly concerned, and we proceeded to move over to the CCU.  We got a great room, which we settled ourselves into quickly.

As the day progressed, her breathing became more labored, her heart rate was going up and her oxygen levels were going down.  They then decided to do an echo, which showed that she did, in fact, have a lot more fluid in her left lung as well as fluid around her heart.  After a long consultation among all of her doctors with her surgeon, it was determined that she needed to have a tube inserted to drain off the fluid.  It was very frustrating, as during all the time it took for them to consult, she couldn’t eat or drink anything because they thought they may need to do it tonight.  However, they decided they would rather have it scheduled first thing tomorrow morning, so she ended up being able to have clear liquids until just a little while ago and a few crackers.

Earlier, when we offered Alexandra absolutely everything to eat, she wanted nothing.  Then, when we couldn’t give her anything, she wanted absolutely everything.  It is so hard denying your child food and water even when you know it is in their best interest!

Tonight, after a very messy diaper, her demeanor changed greatly from earlier in the day.  We got a number of smiles and even a couple of giggles.  It was wonderful!  We did another wagon ride, which she enjoyed very much.  Later, she wanted to go to the playroom and “ride a bike.”  Keep in mind, she has never been on any sort of bike before.  However, it was what she wanted, so since she couldn’t go to the playroom, I went in search of any riding toy I could find to bring back to her.  I did end up finding a small bike, and her Dad held her on it while he pushed her around for a few minutes.  Then, she was ready to get back in bed.

At least the evening ended on a positive note.  I’m sure we won’t be able to sleep tonight, but I have to believe with all my heart that everything is going to turn out just fine!

Today was a good day!  After a suppository last night, Alexandra began to have poopy diapers which made a tremendous difference in all areas.  She was much more like herself today even smiling some, which made us very happy.  She took a couple of wagon rides and ate bits of ice cream, cheeseburger, yogurt, potato chips, goldfish and part of a smoothie.  It was great seeing her eat and not be in pain all day.

Her pleural effusions are not better yet but certainly not worse.  However, her sodium levels came up, and she is definitely feeling better.

Tonight at Ronald McDonald House, we met a family whose son is going in for his Fontan on Friday.   I really felt for them, knowing what they may have to go through over the next couple of weeks!  We assured them that we would be available for them if they needed to talk through anything.  It’s so important for the families going through this to have someone to talk to who know exactly what they’re going through!  I know it helped us tremendously when we found someone who had gone through this before us!

We are quite sure we will move to the CCU tomorrow and look forward to doing so now that we are comfortable that she is ready and we are not doing it to free a bed!

Alexandra’s sodium levels continued to be a concern, and she was given additional sodium supplementation.  Her IV diurectics were also switched over, as the oral versions do not flush out as much of the sodium.  Unfortunately, her chest x-ray did not show the improvement in the pleural effusions we were hoping for.  She  was awake more today and was not happy any time she was awake.  She seemed to be in some sort of distress with occasional outbursts of screaming and crying and flailing around which is very upsetting to witness, especially when you’re going on almost no sleep in a week, and nothing you do gives her any relief.

We were able to get her, although reluctantly, into a wagon for numerous loops around the ICU.  Eventually, she seemed to enjoy being out of her room at least for a little while.

Everything seemed to be going along just fine, and we went over to Ronald McDonald House for dinner.  When we returned 1 1/2 hours later, we were hit with news from our day-time nurse that the doctors had come by and wanted to move Alexandra over to the CCU.  We feel she is in no way ready to be moved, and her doctors today gave no indication that anything would happen until they were sure her sodium levels were up. 

We ended up talking to the night doctor, and the more she talked, the more uncomfortable we felt about what she was saying.  Basically, she told us that she didn’t know what the day team had discussed with us, but the night team reached a consensus that she should be moved.  I’m not sure how new doctors could come on, not knowing what all had been discussed during the day and make such a significant decision!  Also, she kept talking and happened to mention that there was a bed issue.  Naturally, that really set us off, as it was a bed situation that led to the previous move fiasco we endured last week!

We had some pretty heated discussions with the doctor, and she said they would look at the labs once they were done.  Eventually, we were told by Alexandra’s night nurse that we were staying put.  Good thing because her lab work was not back until around 11 p.m., and her sodium levels were the same!

The good news is that Alexandra is resting comfortably at the moment, so I better catch some sleep before she wakes up!

June 1 – Alexandra continued to be uncomfortable until around 1:30 a.m. at which time they upped her dose of pain medication and added ibuprofen.  Since then, she has slept most of the time with only a few moments here and there being awake.  We need to make sure she is taking in enough fluids; however, as you can imagine, that’s not easy when she’s sleeping most of the time.  On the other hand, they don’t want to increase her fluids too much by IV, as that could result in more fluid around the lungs.  It’s a very delicate balance of input versus output.

Unfortunately, her chest x-ray this morning did not show any change from yesterday, but I guess the good news is that it was not worse either!  The only situation that became worse over the day is her sodium levels have continued to drop.  I wasn’t terribly concerned about that until they told us that if they got too low that she could have seizures.  They now have her on sodium supplements, which we hope will greatly improve her levels.

Our CarePages updates throughout the past several days have generated so many wonderful, uplifting messages from our friends and family.  If you don’t know about CarePages or a similar site, I have to tell you it is a terrific way to keep everyone you know updated on your child’s progress by posting one message and not having to make numerous phone calls to repeat the same information over and over again.

Our ICU nurse tonight insisted we take our time coming back after dinner.  So, we went over to Ronald McDonald House and had time to go through a package of mail from home before dinner.  After eating dinner, I took the opportunity to work out on the treadmill for a little while and then took a long shower.   You can never underestimate the power of a little exercise and a nice hot shower to make you feel like a different person!

I’m hopeful that Alexandra will still sleep through the night so I can get a little more sleep and that tomorrow is a good day with lots of progress!

May 31, 2009 – Over Alexandra’s first two surgeries, we always came across people whose children had set-backs, and we always felt sorry for them.  Well, today we were those people.  Alexandra seemed to be doing fine last night until around 1:30 a.m., and then she became very agitated, screaming and crying, and just couldn’t get comfortable.  She alternately wanted to be held and then not touched.  Her nurse checked some vital signs, and we both become concerned enough to call in the doctors. 

After hours of poking and proding, chest x-rays and echocardiograms, I was told that she had a significant amount of fluid around both lungs (pleural effusions) and some around the heart.  They said that she would need to have an IV put back in and moved back to the CICU.  Further, they felt fairly confident that she would need to have a chest tube inserted to drain the fluid.

I have to admit, I broke down a bit and had to walk away to get myself together again.  It was something I repeated several times throughout what was a very emotionally and physically draining day.  While we were told from the beginning that pleural effusions were a very common complication from this surgery, she seemed to be doing so well last night that I thought she was avoiding it.  Also, in her previous two surgeries, she never took a step backward.  

From around 1:30 a.m. until late this afternoon, she was absolutely miserable, as they didn’t want to give her anything for pain, thinking they may decide to insert the chest tubes.  Also, they switched back and forth from letting her have fluids to not having fluids for the same reason.  It was so hard to watch her in obvious distress and not being able to comfort her even with water when she asked.  Finally, they determined that they would give it a day on the increased IV diuretics, so she has been able to have pain medication and drink fluids since then.  Between the increased medicine and some oxygen, she has been resting somewhat comfortably the rest of the evening, and we are hopeful to have a relatively peaceful night since I’ve basically been up since right before 1:30 a.m., and it’s going on 10:30 p.m.

I had one very scary moment this afternoon when she laid in my arms and became about as lifeless feeling as I want to feel her ever again!  She turned as white as could be, melted into my arms and would not respond.  We got her back on her bed, and, while the nurse tried not to show she was concerned, she started loudly calling Alexandra’s name, trying to get her to sit up and pulling up her eyelids to check her pupils.  After a minute (it felt like five, but I’m sure it was actually less than a minute), she screamed at us to “Stop it!”  Then, I knew she was okay.  Our feisty little one was back!