Thursday, March 28, 2013

Cath is Done

So Tuesday was the day.  The day that I have been dreading since January.  We took C to Tampa on Monday night so we could be at the hospital bright and early Tuesday morning for her cath.  Thank goodness she really was the first case and her cath started right at 8:30am as scheduled.  There is absolutely nothing worse than having the whole day drag on and on with a very thirsty, very hungry and very bored toddler. 

C of course was a champ. 

The nurse was unable to get an iv in prior to going into the cath lab so the anesthesiologist said he would place the iv once she was under (this happens at least 85% of the time with C).  Even though I do hate to have C stuck multiple times I am glad when they cannot get the iv because then I can go all the way into the cath lab with her and stay with her until she goes to sleep.  I know she feels better having me there with her and there is so much less drama.  Much better for mama too.

This cath was to measure all of C's pressures and test close her fenestration.  The prevailing thought on why C is still so blue from her Fontan last April is that she is shunting too much blood through the fenestration.  This hole that is made during surgery has shown to help kids recover faster after the Fontan and usually closes all on its own eventually.  Of course C has to be one of the few with a wide open fenestration and too much blue blood still mixing in her heart. The cath doctor explained all he would do, etc and she was off to the lab. 

We waited and waited.  C did fine during the cath but she did have some atrial tachycardia during her trans-esophageal echo.  This is a special echo the cardiologist does before all heart surgeries.  These are even more accurate then the normal surface echos.  Fortunately the tach was short lived and she converted back to sinus all on her own.  Still scary for me though because this is the first time I have heard that she went into tach during a cath.  Ugh.  But, the doctors did not need to intervene to get her out so that is good.  Her meds are still working.  I keep hoping and praying that as she gets bigger and her heart gets bigger that some of these issues with the tach will go away, which they can.

The good news from the cath is that with her fenestration closed, C sats at 92.  Holy wow!  92.  92 is a good 20 points higher than where she sats during the day now.  We were suitably impressed.  And grateful to know that with the fenestration closed C will be in the 90's with her sats.  And knowing that the cardiogist is correct in thinking that this is the reason she is blue, and not some other horrible reason why, is such a relief.

Now the not so good news.  Although C's pressures are still perfect and she tolerated the test closing of the fenestration very well, the doctor did not actually close her fenestration.  He is concerned about her pulmonary veins.  So not good.  All heterotaxy kids have issues with the pulmonary veins (these bring the blue blood back to the lungs to be oxygenated).  In fact, two of C's heart surgeries dealt with repairing these veins.  I say repairing very loosely as these veins are not able to be operated on and if these veins are shot, then there is currently nothing else that can be done to save them.  The only option is lung transplant.  We have talked extensively about C's pulmonary veins and the consensus has always been that her veins look good.  They are big and open.  Not narrowed or stenosed.  However, during C's TEE the cath doctor and other cardiologist noticed abnormalities with the veins.  The way it was explained to me is that the veins look to be thicker than they should be, more like the outside of an artery (more muscle) than a vein.  The blood that is supposed to flow through the veins back to the lungs is all passive flow (per the Fontan circulation).  However, because the veins appear to be thick, the blood flow is actually being restricted as the veins are pulsing (like an artery would).  So, the cath doctor and cardiologist doing the TEE, decided in the abundance of caution that they would not close her fenestration.  The thought being is that if the fenestration is closed then the lungs have no relief (or pop off) to reduce the pressure in the lungs.  If that happens and the veins are bad (and are getting worse) then C would go into heart failure.  With the fenestration open, should the veins be going bad, then the pressure can be released through the hole and C would just get more blue and instead of going into failure it would buy the doctors some more time.  The cath doctor is not positive this is an issue that is getting worse. He pulled up older echos from previous visits and he said he could see these abnormalities on those echos as well.  He said, in hindsight, it certainly explains why she limped along so badly and had so much fluid collection after the Fontan.  So now we just have to wait.  The doctor wants to monitor C for the next year to see if the veins are changing (getting worse) versus always being this way and now they are seeing this more clearly because she is so much bigger. 

So the news was pretty neutral.  She continues to need the oxygen at night when she is sleeping but since it really does not help during the day she can be off of it as much as she wants.  We will still keep all her stuff though because there are times now when she will be huffing and puffing after running or playing to hard or is too cold from swimming and needs the oxygen boost.  She also will not be starting sildenafil (viagra) as previously discussed because sildenafil will not help this issue at all.

Other than that not so great news, C was fine with the rest of the cath.  This time we had a practitioner with Healing Touch come in and do healing touch with C after the cath.  I really think this was helpful in keeping C nice and calm while she was coming out of anesthesia and getting her back to her normal self.

One of our very good family friends insisted that we needed to have this done with C.  I have been reading more and more about touch healing and I am all for trying anything that will help C.  In the picture above you can just see the ladies hand on C's chest.  I really appreciate Mrs. V telling us about this being available at the hospital.

Even though the cath doctor did not actually do anything interventionally, he wanted her to stay in the cardiac icu overnight because of the tach he saw during the cath.  We had already planned to be there overnight so was not a big deal.  Would have loved to come home but glad we got to see just about all of our very favorite nurses and PA's.  Everyone was so impressed and amazed with how well she is doing and how awesome she looks.  The last time they all saw her she was still very, very sick.  So, getting to see her doing so well, I am glad they could do so.

I am not sure where our journey will go from here.  Only time will tell us if C's pulmonary veins are shot and we are heading towards double transplant or if they veins are just the way they are and we can close her fenestration when she is older, bigger and even stronger than now.  In a way, we are getting a year's reprieve and right now, I will take it.