The truth is, we have thought Boo has been doing very well. Our last cardiology appointment (beginning of April) did not go so well though. The tech who checked all his vital signs did not do a good job at all (it didn't help that Boo was screaming and thrashing the whole time, but you don't write down THOSE numbers!) and then our doctor said that he just isn't sure why Boo isn't getting better (ie. why he still needs diuretics and oxygen). He also said that Boo looked the best he'd ever seen him. Contradictory? I think so. Anyway, I called him on it and he said that things don't look good with him, but Boo looks good for Boo, essentially. We decided to do an MRI to look at his heart better and I decided to mess with his oxygen when we got home to see if he really needed it (I had been waiting for our cardiology appointment, naively supposing their measurements would be better than ours). When we got home, we were thrilled to discover that in fact Boo did not need oxygen (at least during his waking hours)! He has not needed it for over a month during the day, and while we were in AZ he did not need it at all (thank you low altitude).
The MRI was this past Thursday, and it was scheduled with a brain MRI as well that the neurologist wanted to get. (The brain scan showed nothing of note.) That morning, Boo woke up with a runny nose. That is strange for him. Sometimes he is congested in the morning, but never runny... But, after his pre-sedation assessment, they determined he was fine and we went ahead with the sedation and MRIs. He took quite awhile to wake up afterwards, but once I held him and started singing a lullaby, he started clapping (even while asleep) to the beat and I knew he would wake up soon. :) It was super cute. He didn't fully come out of the drugged state until the next afternoon though. And he had to come home on quite a bit more oxygen than he usually needs, supposedly since the sedatives decrease respiratory drive. While this is true, it is not the only reason he needed oxygen. Friday morning he woke up with a fever (100.3) and throughout the night he was requiring much MORE oxygen (not what you would expect when the drugs are wearing off...). After a visit to the pediatrician, it was determined that he has a cold. A common cold. He was checked out again on Monday and his lungs have stayed clear throughout this whole thing (thank goodness!) so we are no longer worried about pneumonia or other yucky things that would mean hospitalization.
Since Monday, Boo has been feeling a lot better. I give him tylenol once or twice a day. He really doesn't do a lot to express that he doesn't feel well, so sometimes it is difficult for me to know. On Monday afternoon, the cardiologist called with his MRI results. Understand that S and I have thought that Boo is doing great, off oxygen, just had a cold, slowly getting bigger and not requiring more diuretics than before, etc. He has been making great developmental strides and has a ton of energy. So the news from the cardiologist was a HUGE blow: Boo needs surgery very soon. It doesn't look good.
For interested parties, here is what is going on, as I understand it. Boo has lived without a pulmonary valve since his last heart surgery. We always knew it would need to be replaced (or placed, as it were), but the hope has been that he would be very big by that time. As in about 20 years old. Most children and even teenagers are able to live just fine without this valve, although it eventually needs to be replaced. And once it is replaced, it will need to be replaced time and time again throughout life, because they only last about 5-7 years, and less if the patient is small. In Boo's case, his lung disease has probably made things worse and that is why he would need the surgery so soon. Thankfully, his lung disease has gotten a lot better, which is why he has been able to be off oxygen. But, not having a pulmonary valve has increase the dilation of his right ventricle and caused greater leakage across his tricuspid valve. A normal right ventricle is size 80-100, surgery is needed when it gets to 140, and Boo's is around 200! Because his ventricle is so much bigger than we thought, he may actually need more than a pulmonary valve replacement. He may need a smaller patch over his pulmonary artery (part of his last surgery) and some reconstruction of his tricuspid valve as well. This is not good. It means more time on the heart-lung machine, which means more fluid retention and more "risk". I don't ever ask what "risk" means. The hope in all of this is that we are not too late - the cardiologist still believes the surgery can be done (if the right ventricle gets too big, it cannot be done anymore and the condition must just be lived with and controlled with heart function meds). So within the next week or two, we will have a surgery date.
So what is going through my head? Here is a list, not in any particular order:
1. I can't stand the thought of losing my little Boo. He is my best little buddy and we do everything together. He loves me so unconditionally and is so happy and teaches me so much. Is it Heavenly Father's will that Boo meet his baby sister? I hope so. The thought just eats at me, even though I know this surgery is not a death sentence. I just know how close we have come to that with past surgeries and I fear for his life this time - heart surgery #3, all the complications, all the scar tissue from past surgeries...maybe I don't need to elaborate. Fear is the opposite of faith though, and I am determined to be a woman of faith. I need it.
2. Assuming we make it past #1, I am so worried about how much ground we will lose. Boo has come such a long way and learned so many things with so much difficulty that other children learn quickly and with ease. He doesn't eat at all, so I don't think that can get any worse. :) But will he be able to sit up and dance and walk along the furniture, and make his baby sounds, and climb up the stairs? Will he have an even flatter head? (Post-helmet therapy his head has gone a little bit flat again, since he still spends a great deal of time on his back). Will his super-bad anxiety come back with a vengeance, as it did with his last surgery when he wouldn't even look at or play with us (his parents!) for a week afterwards? All of this depends on the recovery time and difficulty. It could be short (Boo's little friend made it through and home in four days!) or long (Boo's last surgery resulted in a month and a half long hospital stay with many ups and downs).
3. I have to keep Boo healthy now, big time. His life could very well depend on it, since if he gets sick, we have to wait another six weeks for surgery and that could be too late. My paranoia is in overdrive now.
4. I HATE to see Boo get hurt! I would hate even more to see him slowly pass away, but I seriously wonder how much MY heart can take, watching my little boy go through so much and not understanding why. I can't know all that he feels, but I feel like his pain must be magnified in mine. And just when we were starting to make a little headway with his anxiety problems... Incidentally, this thought has strengthened my faith in Heavenly Father and how His thoughts (and understanding) are higher than our thoughts and how He, even the Almighty, feels pain when we feel pain and why He allows bad things to happen even to good people. He understands infinitely more than we do and His only object is for us to return to Him having done everything we can to become like Him. Brigham Young once said that "Every trial and experience you have passed through is necessary for your salvation."(See article by James E. Faust). In this sense, I am grateful for my trials, but that does not mean they are not difficult and heart-wrenching at times.
5. If you look to the right, you will see that this surgery is cutting it close as far as interfering with the grand entrance of our baby girl. I would be lying if I said this does not worry me. Of course, if I go into labor while sitting at Boo's bedside, I will not be far from our chosen delivery hospital. :) But I don't want that. I want to be there for Boo when he needs me and I want to be there/have to be there for our baby when she is born. I know this will all work out, but it is a bit troubling. And how can I control my stress level so the baby isn't harmed by it? Any ideas?
OK, now that I have unloaded all that onto my public blog...! It feels really good to write though. Honestly, the whole reason this blog is public is so that other people in similar situations might be able to find it, hopefully find comfort in it, and at least know that someone else has been there and felt the same way. It is usually remarkably easy for me to put aside my true feelings and put on a happy face and all (I do have tons of happy things happening in my life to write about too!), but I do not think that is always the right thing to do. Right now, it is not. I feel stressed, nervous, scared, worried, and sad. But I also feel hope, love for my family, and love for my Father in heaven who knows exactly what will happen and that somehow it will all be for our ultimate benefit, even if it is hard now.