Long Needed Update (may be long)...

I have started to post many times, but I got overwhelmed with all the information that I felt like I needed to share and stopped.  So, I'm going to try to make it through this post, even if it requires me to leave out some details.  If you have any questions, please feel free to email me or comment on the blog post and I will try to get back to you.  

So, let me try to start where details are necessary and move from there.  On March 28, I talked about her having the tonsillectomy scheduled, but as I discussed on March 27, the biopsy had a little snag and she ended up with an injured tricuspid valve.  Well, between the time of the biopsy and the time of the tonsillectomy, she had some health issues.  I got a case of the flu and I kind of thought she had caught it from me.  She didn't really run a fever much, but she was worn out, throwing up, seemed to be dragging.  But, she is three and can't explain how she is feeling much and she was still up and around like a toddler for the most part, so we didn't think much of it.  BUT...when we went in for the pre-surgery (tonsillectomy) check-up with the cardiology team, they did an echo and found that she had a significant amount of fluid around her lungs.  Not in her lungs, but around her lungs - its called a pleural effusion and they admitted her immediately.  She had to have a chest tube placed, she was put on lasix (a diuretic) to keep fluid from building up again and we were in the hospital for five days.  At that point, they spoke to me about the possibility of having to do surgery to repair the valve, but they weren't sure and when we got released they were going to "shop it around" to see what surgeons had to say about possible success, the likelihood of being able to do biopsies after the repair without ruining the repair, etc.  So, we went home without a tonsillectomy and on another medication (she was going home on Lasix).  The next week was frustrating for me because they wanted us to "watch for fluid build up" and I was worried we were going to miss it and constantly looking for signs of problems, etc. feeling like I should have noticed before we went for the pre-surgery check the first time.  But, the Lasix seemed to work and she seemingly was doing well.

We went on like that for a few weeks, and then we got a call in early May that the surgeons had decided the surgery should be done.  I was deflated to say the least.  Another open heart surgery...this time on a toddler instead of an infant.  Needless to say, I was not looking forward to it.  We were lucky enough to have the surgery scheduled for after both Jason (husband) and I were off work for the summer, but we were less than thrilled.  So, in late May, we decided to do something fun before the surgery and we went with my sister to Monterey Bay Aquarium for a couple of days prior to the scheduled surgery.  It was a great trip, but the impending doom hung in the air...at least for me.

We got back just in time for the pre-op appointment, which was less than pleasant.  Bean threw a HUGE fit about the EKG and I think she could probably feel my anxiety, which made it all worse.  I felt like I was putting her through torture and had a bit of a breakdown.  Luckily, my in-laws came into town for the event and were there for moral support.  The doctor who came in to speak with us about the surgery was less than optimistic about the surgery.  He said that she may need a valve replacement instead of a valve repair, which would mean getting replacements every 3-5 years.  Sigh...We somehow got through the day, found a hotel room in the area so we could be at the hospital bright and early the next day and tried to settle down for the evening.

The next morning was actually much better than the pre-op day.  The lead surgeon seemed to be more optimistic than the assistant who spoke to us the day before and was pretty resolved that he would not do a valve replacement unless it was absolutely necessary.  So, we handed her off to the surgical nursing team and went to wait...and wait...we got a visit from the nurse liaison about four hours after handing her off that she had successfully been placed on bypass (it takes a while to get in when they have previous surgery scars to deal with and from the looks of it, they had some issues getting enough access for IVs, IJ lines and an arterial lines) and they had started the actual repair.  It was another couple of hours before the surgeon came in and said they were closing her up.  He said the surgery had taken longer because they had tried a number of repairs that did not work before they finally were able to get the "last chance" one to work.  This repair was not optimal, and post-surgery he was afraid it may have tightened up the valve too much, making it "stenotic" and told us they would have to watch pressures for a couple of days to see if it would require them going back in to change it with a Glenn surgery.  All I could think was that they may have to do another open heart surgery in a couple of days?!?!  How is that even possible?!?!  But, I nodded my head as if I understood and listened to the rest of what he had to say.  A while later, we were called up to the CVICU to see her  It was hard to see her on the vent again, but she was able to weaned off of it in about 24 hours and this is what she looked like after that:

Luckily, the pressures were fine and actually reversed direction within a couple of days, meaning that her valve is continuing to leak.  Not as bad as before (before it was measuring Moderate to Severe and was well on the Severe end of things - now it is measuring in the Mild to Moderate and is on the Moderate end of things), but still there.  Her recovery in the hospital went relatively smoothly.  One of the nurses in the CVICU (where they are one-on-one with nurses most of the time) noticed her coughing after she drank liquids and suggested we get a swallow study done.  So, that was performed and we discovered that she, in fact, does have a problem with swallowing liquids.  She aspirated extremely badly in the swallow study.  We have always noticed her coughing after drinking, but I just thought she was in a rush...but, turns out, she has a swallowing issue.  So, we now have to thicken her liquids other than Pediasure (which she still drinks with a bottle nipple so flow is controlled).  It has made a huge difference, and I must admit that I felt terrible when I found out that we had basically been waterboarding her with every glass of water or juice we had given her in the last two years.  :(  But, at least it was caught (thank goodness for an aware nurse willing to ask for the swallow study) and we can fix the problem now.

We were in the hospital for eight days, which was actually not bad at all.  Since we've been home, Bean has really yet to become herself.  She is moody, often angry (which is not like her at all), not eating well, and often complains of pain and "being sick".  She has not been running a fever or vomiting, so I don't think anything is seriously wrong, but I do believe she has a lot of pain from coughing (she came home with some "junk" still in her lungs and she has been coughing ever since trying to get rid of it).  But, she is also a bit manipulative.  She uses the pain and feeling sick as an excuse to not do things she does not want to do or to try to guilt us into doing what she wants done.  Its an easy sell.  She's been through a lot.  Her bruises and incisions still are healing.  And I'm exhausted most of the time, so its easy to give in rather than fight the battles.

But, today, I have initiated a bit of a battle.  I told her that from now on if she complains of feeling sick, I will make her lay down.  And that we are back on our schedule for bottles, meaning she gets Pediasure at 10 a.m., 2 p.m. and 8 p.m. and must eat and/or drink water or juice in between.  This morning I told her if she did not eat because she didn't "feel good" than she could not go out and play in the sprinklers or drink a bottle or have a bottle because if she was too sick to eat, she needed to just lay down and rest.  I mostly did this because I figured it would snap her out of her not "feeling good" if she really felt okay and a little bit because I think she really does need to lay down and rest more often as she totally goes until she is completely worn out which adds to the moodiness.  And, you know what?  It worked.  She ate a great lunch of BBQ chicken, broccoli and a bread stick today!  First real meal she has had since the surgery.

So, after a long post, the short of it is that we are on the mend.  The summer has started off a little rough, but I am looking forward to making up for that with lots of activities and fun stuff as we find our new normal once again!

Thanks to everyone out there who kept us in their thoughts and prayers during this time.  I'm so glad its over and I'm glad she is doing better.  Fingers crossed the repair holds for a long, long time and we can go many, many more years without another open heart surgery!