Friday, June 1, 2012

Still Waiting to Exhale

Two and a half years ago I took a huge, deep breath. I had just found out about my tiny, unborn daughter's majorly defected heart and told I should terminate the pregnancy. After getting a second opinion, my husband and I decided there was no other alternative. We were going to have a daughter, our third child, and we would do whatever it took to give her a good, quality life. I have sat by my daughter's side through countless doctors visits with multiple specialists, numerous gi tests, hours upon hours of therapy, multiple heart caths, three major heart surgeries, endless hospital stays and several bouts of life threatening tachycardia. I have seen more pain and suffering and know far more about the pediatric heart than any parent should ever see or know. And I have continued to hold my breath. Ever fearful to let down my vigilant guard or death would creep in and take my child and she would be nothing more than a statistic. Death hovers everywhere when you have a child like C. I do my absolute best to fill her world with light and sunshine just to not see the darkness gathering around her. Two and a half years of fighting for the absolute best for my daughter and I am proverbially as blue and she actually is blue. After everything C has been through, this last surgery was suppossed to be the top of the mountain. We climb that mountain, reach the top and we were suppossed to have a much smoother climb down. I was never given any guarantees or false hope, however, the thought process is that the first two to three years are the absolute most horrific and by getting through this, then we come out on the other side of cautious optimism. There are not supposed to be any more planned procedures. We are supposed to sit back, enjoy what time we have with C and wait for the next step, many years down the road. And yet, that is not what has happened with C. I am still holidng my breath, waiting to exhale as she continues to struggle and limp along post Fontan. She was supposed to rock this surgery. Her pre Fontan cath was the best you are going to get with a kid like C. She was the A on the bell curve of heart defects. And then the Fontan came and almost knocked her off the curve completely. C continues to have lower oxygen saturations and continues to be on oxygen 24 hours a day. All the doctors are perplexed and not offering much in the way of answers. C and I got to spend all of two weeks at home before she was back in the hospital for another nine day stay due to an ever persistent pericardial effusion that just would not go away. She had to have another pigtail chest tube placed, making six total tubes/drains placed in her two year old chest since surgery. She is back on massive amounts of steroids with a much slower wean down this time. She is swollen and puffy and just miserable. She is tired all the time, lacks her usual vitality and energy and is generally more hesitant and less curious about everything around her. She is running an elevated heart rate which makes me super concerned that the ridiculously poisionous anti-arrhythmia med she is on (you know, the one that will eventually do more harm by poisioning her than good) is not working well enough to control her atrial tachycardic arrhythmias. And this drug is the best one they have. She picked up another specialist and medication when she started having seizures in the hospital. Which is all very perplexing as well since she showed signs of clinical seizues and subclinical seiures on the eeg but those were not as concerning as the big episodes she was having that looked like she was not getting enough blood flow/oxygen to the brain. Again, the doctors are not sure why and are not offering any answers. You want to know the irony in all of this...C has not only stopped throwing up but she is actually eating, by mouth. Freaking unbelieveable. All along the doctors have told us she is very unique, even more so than the standard differences you see with cardiac kids. C has always done better and looked better than her numbers and statistics. Even now, she continues the trend. However, she is still very, very sick and I just do not know where to go and what to do from here. Our goal has always been to provide the best quality of life for her. We know, unequivically, that we do not have quantity with her. The best we hope for is twenty years before transplant becomes her only option. Maybe more if C is really, really lucky. But with the way things have been trending lately, I do not count on that. I pray every day for God to heal those areas in C which he can heal. I know logically that her heart will not be healed. She is not going to all of a sudden grow another ventricle. My hope is that we can go back to where we were before. No noticeable arrhythmias that threaten her life. No lung damage or heart issue causing the lower saturations and oxygen need. No more procedures neccessary to figure out what is going on. I just want to be able to release this breath that I have been holding for two and a half years and let some of this stress and tension and worry go free so we can enjoy our time together. Summer is here and I do not want C to miss out on doing all the fun things we ususally do because she is sick or on oxygen or whatever else may be wrong. I need to be able to exhale soon or I am going to pass out.

7 comments:

Laura McCann said...

{{{hugs}}} my sweet Ashley. I cannot begin to imagine, even when you paint such a detailed, verbal picture, I cannot begin to imagine. Love you!

Sharron Johnson said...

Ashley, I know you must be tired from the inside out, physically and emotionally. There's nothing I, a stranger, can say to make you feel better, I wouldn't even try. Just know that prayers continue to rise up before our God on your behalf.

Jen said...

Ashley, I'm so sorry C is still having such a rough time. I can relate to a lot of what you're feeling...I know that in my case, having a kid on oxygen was a huge psychological burden. You can't forget for a second that your kid has a life-threatening medical condition when evidence of it is taped to their face and you have a noisy oxygen concentrator in your house or a stupid tank to shlep around everywhere.

I'm not an expert, but I have known parents of several other kids who had a really rough time with fluids and sats after the Fontan, and in every case, they all did get better after a few months. I so hope this is the case for you guys, too, and that C just needs a little more time before she's back to her old self.

Keysgal@QuietWater said...

My sweet baby girl. My heart hurts for you, C, Kevin and the boys. Today with yet another hit that seems so unfair. Although I know I can't relieve the burden or the stress you know I am here to help however I can. Little C has fought so hard and I have faith she will continue to do so. I intend to stand right there with her and all of you as she continues this journey. I love you all.

Unknown said...

So sorry that C is still having trouble. I hope what Jen said is what will happen for C and all of you. If that is so, hoping C rocks it like she has done before. Though I am happy for you all to be home and together again, especially the eating (yay! go guacamole and closet eating! steroids :))my heart breaks to hear your pain. I wish there was something more we could do to take even a fraction of it off your shoulders. Prayers and positive thoughts are for you all, always.

Unknown said...

above comment by Megan...blogger doesn't like me!

kaney said...

The danger of sinus arrhythmia is the formation of blood clots which can lead to strokes. This is why it is imperative for the doctor to prescribe medication to regulate your heartbeat or you may need to resort to a pacemaker.

Calm PRT Progonol