Sunday, February 14, 2016

Happy Hearts!

We had a fun Valentine's weekend! Perfect theme heading into surgery this week! All about hearts! The girls were willing to take some pictures for me - so I took advantage of that! Also - Lucy wanted to wear her old hearts heros cape and run around. I asked her if she was tough and well - those are the pictures I got. :)

Thank you to all the grandparents for sending cards. The girls are excited to go toy shopping! Big week for us - but we are ready!

Sunday, February 7, 2016

Lucy's Heart & Art!

We went to Lucy's heart check up and was able to do the echo cardiogram we have been needing. Lucy was so good - like unbelievably good at the doctor. She actually laid there - still - for over an hour while they scanned and scanned. They had to scan so much as they found she had a few problems. Instead of her heart getting better, new problems have surfaced and it looks like we will be a heart patient for a long time.

Now - I'm not a doctor - obviously - but let me explain what I understand.

1. Her coarctation repair (what was completed at 2 weeks old) looks great and no further action there - doubt in the future even.

2. Her pulmonary value has always been a "squeaky door". Well its still a squeaky door, but now also is narrowing.

3. New problem: pulmonary artery has decided it wants to look like an hour glass and has narrowing as well.

4. Both problems 2 & 3 are causing uneven pressure in her right side of her heart. Think of it like a garden hose, if you squeeze it or block it, it builds up pressure and sprays out at the end. Because her artery is narrowing, it's causing the other side of it to begin ballooning. This can be problematic for several reasons, but the main one is right now there is more pressure at the beginning of the value versus what is on the other side in the artery. This can cause thickening of the right chamber. She does not have thickening right now, which is why we need surgery now. If we can get in that value and artery and try to "pop" it open through a catheter/ballooning procedure, we are hoping to even out the pressure which will save any thickening. Her right side IS having to work harder, which would solve that too. The cardiologist did say thought that even though he is confident it will help the value, he isn't so sure it will solve and permanently solve the artery narrowing/ballooning issue.

5. If the pulmonary artery is not solved by the catheter/balloon procedure, we will discuss other surgery options, which involve surgery into the heart. Honestly, we did not discuss in any great detail with the doctor yet. One thing at a time.

6. Old problem #I don't know - slight thickening of the aortic value. This remains the same and is still very minor, if not any problem at all. This value is like a peace sign and only one side is slightly thicken.

7. New problem #2: Even though her aortic value is only slightly thickened and it is not causing any pressure differences, her aortic artery is becoming misshaped. Not quite hour glass, no narrowing, but we have ballooning. Very slight right now, but definitely something we will have to watch. He had no real reason why it would start to be misshaped. Right now, nothing should be done. in the future, we will have to do something. What that is, don't know. He did tell us, just to warn us, right side of the heart, tends to be better to work with (pulmonary) the left side, can be more difficult. Don't understand why, but we will just wait and see. His only conclusion at this time was she might have an overall elasticity abnormalities. Which leads us back to genetics.

8. Genetics: My favorite (that's sarcastic) department. We already did a full genetics work up back in the beginning. Which they ruled out all the major ones and could not find a connection between her heart and our genetics. I say they aren't my favorite as they are an interesting group to work with, they aren't fast and they get excited when something is wrong, because they can dig even deeper to try to connect the dots. I kind of get it. Its like a puzzle to them and they want to figure it out. Their bed side manor - sucks. Maybe our experience this time will be different. Ok enough complaining. The cardiologist says it very rare that someone has defects on both sides of their heart and there isn't an underlying issue. He thinks she might have a very slight and mild case of Noonan Syndrome which would not have been one they would look at, he believes. He wants a full work up to either rule it in or rule it out. All it would mean if she would have this syndrome or another one, is how they would treat her. She might be more likely to get this or need to check for that etc etc. It would help the team of doctors make sure she is getting all the care she needs. Yes - I googled it. I have to admit there are several things that connects the dots. Some stuff, no not at all. We will have to wait to see. We will be lucky if we figure anything out by summer. We can't even meet with genetics until May.

Right now - we are waiting for the surgery place to call (which will be this week) to schedule the surgery (which will be within the next month). She has no restrictions, no meds or anything right now. The surgery should be a one day recovery. We spoke with the doctor yesterday and he did say they should keep her overnight since she is so little, but that should be it.  Once I know the surgery day, I will feel better so I can plan around it. I love having plans! We are in for an interesting roller coaster but we all know how much of a character and fighter Lucy is.

Now on another note - Heidi is processing all the Lucy stuff right now. She is definitely more sensitive and can understand more than Lucy. We had Family Fun night at St Jude and lucky for us - we actually won a raffle basket. AND it was the art raffle basket! A basket filled with TONS of art stuff. What a perfect basket for Heidi. She is in heaven. I'm glad this happened, gives some focus and attention to Heidi!

Never a dull moment in this household. Looks like 2016 will be an interesting year!