Lily – the (Ng) Tubeless Wonder!

I have had a really great week.  I was worried about saying that because it seems that I sometimes manage to jinx myself and say that things are going well and then something happens and then I’m stuck telling you about something crappy.  But so far this week is pretty good – I mean it is only Tuesday, but we take the good things as they come.

I had my heart catheter last week to try and patch up my tiny pulmonary vein.  In the end, the surgeon was not able to put a stent in because it’s made of metal and it would have blocked another vessel (which kind of defeats the point of putting the stent in).  That was not ideal because the stent really was the best option for my last left vein.  In the end, they were able to open a tiny little bit of my vein and it’s helping because my oxygen levels are sitting much higher but it wasn’t really a lot.  Now my left lung is only doing about 2% of the work, and my right lung is doing 98%.  It’s a lot of pressure on that one lung but hopefully this catheter. procedure will help to keep the pressures in my lungs lower than they were before I went to the catheter lab.  Now we just have to hope that it works for way longer than 6 weeks this time.  I get to see my cardiologist in 6 weeks and we’ll have a better idea then on how we move forward from here: how they’re going to monitor my veins and what other treatment options there are if my right lung decides that it doesn’t want to do as much work as we’re asking it to do.  My cardiologist did say that as long as my heart is good, she has kids who are 6 and 7 years old who just have one working lung so that’s what I’m aiming for!

The doctor’s were so impressed with how I was doing that they decided that I could come off of the ECG monitors completely and off of the oxygen monitor while the mom’s were awake (it goes back on when they’re sleeping so the nurses can track me).  I think that’s what made it the best week ever.  On Sunday, I had lots of visitors because it was Grandma’s birthday, so she and Grandpa and Uncle Jeff and Auntie Marina came to have something called birthday cake.  I got to try a little bit of this icing stuff and I really liked it.  But mostly, I liked being able to cuddle with Grandma – she’s so comfy that I went right to sleep.  I would have slept for Uncle Jeff but he kept sticking his tongue out at me and trying to make me laugh.  I decided then that I like Auntie Marina better.

Then on Monday, I got to eat from my bottle and I did really well.  Just as Mama C was attaching my Ng tube to top off my dinner, Auntie CC, Uncle Rico and my Thor came to have their dinner with me!! (And bring Mama C some dinner too).  I had so much fun! Mama C put the mat down on the floor for me and my Thor and we hung out and played for so long.  He cuddled me and called me his “sweet sweet baby”, and he patted my tummy, sang me songs and then tried to teach me how to hold my feet in the air.  I’m not quite strong enough to do it, but if Thor just waits a little bit I bet that I’ll catch up soon.

Then today was G-tube day! Finally, after all of these months of having this stinking Ng tube in my nose, the doctor’s took me to the operating room this morning and put in my Gtube.  I still have a temporary Ng tube in, just in case we run into any problems and they need to feed me or give me medicine, but later tonight (12 hours later), the nurse will give me some clear fluids and I’ll start using my new tube! The mom’s are really happy that they’re going to be able to see my gorgeous face all of the time now but they were a little sad when they had to go to the Specialty Food Shop and buy my new G-tube pump, feeding bags, extenders, clamps, clips and doo dads.  I don’t know what any of this stuff means, but if it means that I get to eat without throwing up, then I’m all for it.  Plus it did come with a cool backpack that made Mama C happy – she says that it’s the perfect size to throw on my stroller.

So, I’m in some pain tonight, because the G-tube does hurt a little bit at first.  They gave me some morphine earlier but now I seem to be doing okay just on Tylenol.  Mama C asked the nurse to give me a little more morphine around midnight so that I sleep really well and the pain doesn’t wake me up, but hopefully tomorrow it will be even less and I can go back to being the happy, smiley girl that I usually am.  Then the doctor’s say that if everything heals well from my G-tube, I could possibly be home before the weekend! I’m not counting on it, but a girl can dream….

Another Week End, Another Surgical Adventure Begins…

The general consensus seems to be that I look really really good for someone who has so many things wrong with me.  I’ve been eating like a champ this week and more importantly, eating like a champ from a bottle.  My OT Lisa, says that it’s safe for me to try 3 meals a day from a bottle and at each of them I’m getting more and more confident about how I eat and I’m taking around 60mL each time.  Impressive, if I do say so myself, for a girl who couldn’t even suck a few weeks ago.

The rest of my OT exercise is coming along really well too! Lisa is very impressed with how strong my neck muscles are getting again and how strong my right arm is now, especially since it was just last week that it was laying limp beside me.  It seems that at some point this week, I not only remembered that it was there, I decided to start using it all of the time! I’m sucking my thumb again and grasping things (like the mom’s hands) and I’m even holding on to a set of jingle bells and moving them all around so they make beautiful music.  We won’t talk about how I often hit myself in the face with the jingle bells because, well, that’s just embarrassing.  My legs still need some work – I move them a lot when I’m angry or frustrated, but they don’t move around a lot more than that.  I also need to work more on my tummy time, because I really really hate it, but it seems that no one is doing anything to really make me cry these days.

On Monday, I had another Echo done so that the doctors could look at my heart and see how the blood clot was doing.  About an hour after I got back to my room, my cardiologist came upstairs to “see me with her own eyes” (her wording, not mine).  It seems that after all of that worrying we had done since Friday, the Echo showed that my blood clot was gone.  They didn’t know for sure where it seemed to be – either it had been broken down by the Heparin that they started or it had dislodged and passed into my lungs but in small enough pieces that it didn’t cause any problems.  My cardiologist was shocked and said that while this was the absolute best case scenario, she wasn’t expecting it at all because the clot was quite big in the pictures and they were pretty certain that it was going to cause way more problems.  She told the mom’s that they were still going to do the MRI that they had scheduled for Tuesday, just so they could see if it was in my lungs and to look at my brain to make sure there wasn’t any bleeding (because of my brain injury, Heparin can make bleeding in my brain more likely).

I had the MRI on Tuesday and that was a long day.  After it was all done, I really didn’t want to sleep and so I stayed up really late and even pulled out my Ng tube (I told you my hands were getting better!) just so that I could stay up late with Mama C.  The mom’s didn’t hear anything about the MRI results though until Wednesday morning.  That’s when my cardiologist came upstairs very quickly to let the mom’s know that they had decided to move me back down to the cardiac floor (my home!).  During the MRI, they were able to see my pulmonary veins (the one’s I talk about here…. https://giggleandhugs.wordpress.com/2011/06/18/you-take-the-good-you-take-the-bad/).  It turns out that my surgeon tried to open up the veins a bit during my AVSD repair and they were hoping that this would buy me 6 months of time before it became an issue again.  In the end, that work only bought them 6 weeks of time.  On my left side, the lower pulmonary vein is completely dead and the upper one only has a tiny bit of blood flowing through it (about 10% of all the blood – my right side is filtering through the other 90%!  This isn’t fair to ask my right lung, especially without a lot of notice, so the hope is that they can fix my veins for a long enough time to allow my right lung to learn how to deal with all of that blood working it’s way through.

So, tomorrow morning at 9am, they’re going to come and take me to the catheter lab, where they will insert a catheter which will snake it’s way down to my vein and use a balloon and a stent to open it back up.  They don’t know how long this will last and they can’t even say what they would do for a “typical” child – because apparently this is incredibly incredibly rare (2 in every 10 thousand!) and so they take each case at with their own set of challenges.  The plan is to avoid a heart-lung transplant, which could be an option but only in a worst-case scenario.  Apparently the survival rate for infants/babies and transplants is pretty low, so we want to make sure, that if we get to the point where the doctor’s think a heart-lung transplant is my only option, I’m as big and strong and healthy as I can possibly be!