Watching and Waiting

It's been a long day. The house is finally quiet, quite except for the rhythmic hum of Lane's new oxygen machine. As I sit in the stillness I can't help but wonder if this is a sound I will grow very accustomed to. I fear I already know the answer...

This morning began with a sense of peace, hope for a good day. The sun shone brightly and it was so warm. I sent Liam & Lane off to school, happy that Liam knew all of his spelling words. By 9:30 or so Kristi was calling me on her phone. You know this is not gonna be good. He had coughed up a lot of crap just like last night and since I forgot to send the suction machine I needed to go get him. I spent the next 11 1/2 hours suctioning, checking his sats, giving a breathing treatment, and giving him oxygen for the 1st time. I am proud to say that I successfully deep suctioned him for the 1st time today by myself! I must admit that I had a pretty smart EMT-IV ( AKA daddy) on the phone telling me what to do. He taught me how to measure so I'd know how far to go in. That made it SO much easier and took all the fear out of it. I still don't like the feeling of resistance that you have to push thru but I'm sure I'll get over that soon. It is empowering to know you now KNOW you can do one more thing to help your baby. Now if I just could confidently listen to him...

I am thankful to have the oxygen here, to be honest, I'm suprised he's gone this long without it. I'm pretty sure it's kept us out of Vandy tonight. He was just having a hard time maintaining his sats without it. I just worry that with each recurring illness his baseline is lowered. I wonder if there will come a day that he will require it all the time. It makes me sad.

There were a couple of times tonight that despite having the O2 he was clearly working to breathe. I saw the same fear in those deep blue eyes that I saw in May. It is a look that has haunted me ever since and probably always will.

So for now, just as I have every day I've been granted with him, I watch and wait. Standing guard.

I had my week all planned out. Lane changed all that. Seizures last Thursday, very low sats and heart rate on Friday, low temps and lots of secretions on Saturday. Trip to Vandy on Sunday. So I was wrong, it wasn't pneumonia or a wide spread infection or RSV. It turned out to be nothing more than a common cold/ flu virus. Easy enough for most people to shake but not my Lane. It required frequent suctioning and being on Oxygen for going on 4 days now. 3 of which were in ICU. Nothing is easy on that kid. Last night after getting to floor he had multiple seizures, which shot his HR up to 180 and required a dose of Atavan. I had to fling the door open in search of help even though the monitors can be read at the desk. Our room is right in front of said desk. He was 1 hour and 40 min. late with his seizure meds. He didn't eat at 7:00. And people wonder why I hate the floor? Oh well, at least he has a mom that knows him and how to care for him. On a positive note we are lucky enough to have Dr. Reiderer. I love him, he understands Lane. Not all of them do. We managed to avoid it for 5 years, but it now looks like we're going home with Oxygen. That's ok, it's just PRN. With the pulse ox, suction machine, nebulizer, Albuterol, Pulmicort, & oxygen maybe I can avoid a few stays, like this one. Besides its just one more thing Morgan will know all about before nursing school. = )

I would like to say that Dr. Sharpe is an awesome neurologist. Lane's Baclofen pump needs refilling. We are supposed to be there today. The NP that usually does it for me when we're in Vandy is no longer here. To avoid a resident filling it, Dr. Sharpe offered to meet us over the weekend to fill it. That says a lot about him and his concern for Lane. Very few docs would do this. I'm so grateful that he would take time out of his weekend to make sure my baby is taken care of properly.

I also want to say a huge thank you to Mandy & Kristi for coming Sunday night and letting me ride home with them. Lane Carter is so spoiled. Mandy wanted him to be her valentine so she came back last night and spent Valentine's with us. I too am spoiled, Brandon & Amy came to see their niece on Monday night and brought us food. Nobody cooks like they do. It is unbelievably delicious! More importantly I got to be with Amy & meet their daughter. These people are very special to me. I've only known them a very short while but I am just drawn to them. They're coming back tonight. Yay!

God doesn't give you the people you want, He gives you the people you need. To help you, to hurt you, to leave you, to love you and to make you the person you were meant to be. This incredible journey has brought many wonderful people into our lives, some for a reason, some for a season and some for a lifetime. Each have played their role according to His will and though I really didn't want to let some of them go, they have quietly bowed out. This makes me sad at times but then I remind myself that all of this is unfolding just as it should. I know Suzi, Mandy, Kristi and now Amy & Brandon are in my life for a reason, I can only pray that it's for a lifetime.

Vandy Valentines

For some reason my boy insists on celebrating every holiday at least once in the hospital. I guess this year we'll have a Vandy Valentines. That's ok though. In a way it's kind of fitting, after all it was in here that I learned what it was to love unconditionally. As the days faded into one another I came to accept that my baby was going to need care on the most basic of levels for the rest of his life. I finally saw this as my calling in life. Knowing that he would never be able to hug or kiss me, that I'd never hear him say thank you or I love you suddenly didn't matter. I promised him daily that I would always love him, always be there to take care of him and to NEVER give up on him. In my eyes he was Heaven's gift to me. After all God chose us to be his family for a reason. I have tried to honor God by taking good care of him. "what you do unto the weakest of these, you do unto me" maybe that's not exactly how it goes but you get the idea.

It was said many times to me that an extended NICU stay would either make a marriage stronger or destroy it. Ours is stronger for it. There is NO way I could do this without my Will. He's my security blanket, my other half. I'm proud to be his wife and the mother of his children.

I've countless docs & nurses over the past 5 years. Some have treated Lane as nothing more than a patient. Others have clearly loved that baby and it showed in the care and compassion for him and us. Those people are the ones I not only adore the most but admire. Dr. Walsh & Dr. Morgan were clearly 2 of these people. Sarah & Abby and most of the PICU crew fall into this category.

I've always told Mandy & Kristi they had to teach him but they didn't have to love him. They do both. I am honored to call them friends. They are amazing, wonderful ladies.

Liam learned at 4 what it takes some people a lifetime ; acceptance. Morgan will always know. This journey has taught me a lot about love, I've seen who's willing to walk the long road home with us no matter how hard it gets at times. I've seen who's only there for the good and I've seen who's there when it works for them. I'm not saddened by this, I'm glad I know. I just pray that I can be the kind of friend that a few of mine are. There without fail, standing by for when I need them the most.

I wish you joy and I wish you happiness, but above all this I wish you love. I love you Lane Carter, I will always love you

You will always be "my special Valentine"