Wednesday Update

It is Wednesday, right? My battery died before I could finish this post, so now it is actually Thursday. It seems that when Ivy is in the hospital it all feels like one long never ending day! This update needs to be quick because my battery is about to die. Thank heavens for a sweet friend who is on her way here with it now! Thanks Kristy!! See, I told you I typed this yesterday!
Wednesday Ivy had a great night! Comfortable and content as long as I was holding her or touching her. We did not sleep! They have been watching her so close that is seems someone is always in the room. Her x ray last night revealed wet lungs so sure enough the x ray machine arrived in our room at 4:45 AM for another picture! Man, I had finally fallen asleep and they kicked me out of sleeping beauty's bed! But we survived, and we are happy to know they watch her so close! Why the wet lungs?? Wish we knew! She is still requiring oxygen. We are trying to wean. Her heart is very enlarged and she is under a lot of stress just being here so they are thinking it is possible that is why she did not need it at home but does here. She is not stressed out at home. Also those wet lungs couldn't be helping much.


Fast forward, It is now Thursday and I am adding to the post that never got posted :)
Yesterday was a hard day. Ivy is just so sad and so scared. She remembers this place and she doesn't like being here. She keeps a stoic face at all times and suspects needles and discomfort from anyone who comes in our door. She had 2 of my sweetest friends standing on their heads last night trying to get her to smile, laugh, grin, anything but she was like a deer looking in to headlights, just so painful to watch. My heart just breaks. She keeps me very close by at all times, such a cuddle bug. She feels safe in my arms so thats where she stays! I have not left her room except to take her for wagon walks down the halls and she is with me. I want her to have one thing she can count on and trust for sure, I will be here every second. She is eating well and sleeping well now. She has caught my yucky cold and I think her throat hurts because she is not drinking water like she usually does. All very minor things..... I won't go on to tell you that she has not pooped since Monday morning, oops I just told you!
My spirit is up this morning, can you tell? I just know today is going to be an effective day. Yesterday we just sat here and did nothing but today at 1pm, Ivy is having a stress test done with nuclear medicine. Sounds fancy doesn't it. An MRI might have done the trick but she has a pacemaker so she can not have an MRI. Instead they will do an even more effective test to measure the severity of her RCA (Right Coronary Artery) occlusion. The doctors are in agreement that this has been going on since she was here last time. The occlusion has to have happened when they sewed her up 5 days after her surgery. 
Here is how the test works

A nuclear heart scan is a test that provides important information about the health of your heart.

For this test, a safe, radioactive substance called a tracer is injected into your bloodstream through a vein. The tracer travels to your heart and releases energy. Special cameras outside of your body detect the energy and use it to create pictures of your heart.

Nuclear heart scans are used for three main purposes:

• To check how blood is flowing to the heart muscle. 
• To look for damaged heart muscle. 
• To see how well your heart pumps blood to your body.

Usually, two sets of pictures are taken during a nuclear heart scan. The first set is taken right after a stress test, while your heart is beating fast.

During a stress test, you exercise to make your heart work hard and beat fast. Since Ivy can not run on a treadmill, she will be given medicine to increase your heart rate. 

The second set of pictures is taken later, while your heart is at rest and beating at a normal rate.

I was concerned by the word nuclear, but did get reassurance that the radiation is equal to the amount you would get from a regular x-ray.

The hard stuff for mama heart today. You know me by now, I crumble at the sight of my sweet girl in pain! Ivy's nose is totally  stuffy and bloody today, she has a cough. She caught my cold! She had to get poked again today, checking her electrolytes. Her IV went bad, she needs a new one. Her hand is swollen. She has to go all day without food and water again since her test this afternoon is done with full sedation. She has to get intubated again. The last one was able to come right out but we noticed she is aspirating again when she cries and when she drinks more than a sip or two at a time. Bummed about that! 

So where are we with all of this? Well they don't know yet. Obviously we need these test results to really know. But what they did say in rounds this morning is that they NEED to see the left side of her heart compensating for the deficiency on her right side. They need her heart to have adjusted to being like this right now and kind of just know how to do it. Remember how long it took her to get out of this hospital last time? Remember all the times she was up then down then up then down..... Her RCA has been in this state since her repair. Ughh arwslkddjnfdjnvjdnfenfguie how could they have missed this? Darn!!!

Any way, I'm not going to cry over it now. Truth is, the pulmonary valve (homograft) that they used was too big and it was all we had and even if they saw this earlier it wouldn't change the fact that the damage is done, it is not something to blame on someone, everything was done correctly, this is just an unfortunate result and we need to figure it out.

The reason they need to see her heart able to compensate is that she is just too small for this surgery. Her veins are just not there. She is tiny, her veins are teeny tiny. This kind of surgery is something they do on adults. Not babies, toddlers, little kids, even big kids. She might be a little kid when she ends up having it done, but right now she is the size of an infant (they poked her hand/arm 11 times to insert an IV before moving on to the next arm! (she was asleep) and the doctors say they just wouldn't be able to work with her veins. 

The correction for this problem would be to do CABG. Coronary Artery bypass grafting. 

How this works is  a healthy artery or vein from the body is connected, or grafted, to the blocked coronary artery. The grafted vein bypasses (that is, goes around) the blocked portion of the coronary artery. This creates a new path for oxygen-rich blood to flow to the heart muscle.

So we continue to pray that they find her heart to manage the stress in its own resourceful way. We pray that being on these new meds for a few days now helps too. We pray that they can then come up with a cocktail of medicines that will keep her heart healthy, or as healthy as Ivy's special heart can be until she is bigger and can get good results from this kind of surgery. I also pray for all of the amazing new treatments and corrective surgeries that will come out between now and then. I am confident that there will be other ways to correct RCA occlusion in the future. And I selfishly pray that we can go home very very soon!!!!!!!!!

I am so touched by all of you in the blogging world who have given up your time and other things to stand in the gaps and pray for our daughter during this time and some of you never having stopped from her very first surgery. You are all a part of this childs life and we are blessed to call you our friends!!! We have felt so much comfort and peace knowing that Ivy is being lifted up from all over the country and even out of the county! Thank you!!

I will try my best to post the results of this test tonight. All of Ivy's team will be having a meeting this evening to discuss the results of the scan and the plan for her future. We love you all!!!

                                    Ivy on the morning of surgery day

 Getting ready to go in, mommy and daddy made me look silly in these giant pants! We could add shoulder straps and make it a jumpsuit :)

                                                                 Last night

                                                                      Today

                               A semi smile, the first all week!

                  Ivy right now as I typed this!