Saturday, October 30, 2010

The Other Night....

The other night, I carefully tried to get into bed without disturbing my sleeping husband. He'd gone to bed early with a terrible headache and I moved quietly to avoid waking him and despite my efforts he woke anyway.

He lifted his head a little, rolled over to my side of the bed and opened his arms, motioning for me to crawl into his arms and I happily obliged.

He wrapped his arms around me and drifted back to sleep as I lay there I thought about this last year; how hard it's been, how very difficult it has been, how much uncertainty there has been. SO much uncertainty.

But there has been one thing I haven't questioned, that I am completely certain of. The love, comfort, and safety of the man lying next to me. I love my husband in ways both so very simple and so very complex. I adore this man. I completely love this man. And I know he loves me.

Of that, I am completely certain.

Thursday, October 21, 2010

Tangled and Tethered

Olivia has been battling breathing and airway issues since birth. She has always been squeaky and made a stridor noise while breathing and often turns blue when she cries. We knew very shortly after she was born that she had laryngomalacia, an issue we were told could take up to 2 years to correct itself. So we have always attributed her noises and lack of oxygen during hysterics to that.

Fast foreward to March 2010 and the whole RSV/Hospitalization debacle. Since then, she has had over 12 ear infections. Getting tubes seemed obvious. While seeing her ENT, Dr. F, to set up the tympanostomy procedure, Dr. F decided to take a look at her larynx and see how it looked, as sometimes babies with laryngomalacia have breathing problems and need to be intubated during procedures.

After he did the scope, he sat back, furrowed his brows, and "Hmmm"ed for about five minutes before finally saying, "I just don't like it. I don't like what I see in there." And off to specialist, Dr. A, we went. And a tympanostmy, laryngobronchoscopy, and MRI were set for October 11th at a hospital two hours away. We were told to expect about 6 hours from start to finish.

On the 11th, we left at 3 am and made our way through the dark or morning to the hospital. Olivia was so happy, charming the nurses, making the anesthesiologist laugh, and attacking her daddy while we waited for her appointed time. The nurse gave her some "happy juice" and my baby went from ultra-mellow to....well, more ultra-mellow, and she gave of us a funny smirk as the carried her back into the operating room.

When the procedures were over, Dr. A told us she would like to keep Olivia for a while to monitor her oxygen, see what it does, and to perform more tests and procedures to rule out other things that may be affecting her breathing. Olivia has paradoxical vocal cord motion. Basically, her vocal cords don't open and close like the are supposed to. Actually, they hardly close at all, putting her at risk for aspiration, pneumonia, speech delays, lung infections, and various other ailments. She also has severe reflux (How did I not know this?). It's likely the reflux is making the PVCM worse. The vocal cord issue is also affecting her breathing (at least they think this is what is happeneing). Olivia's O2 sats were dropping dangerously low 20-30 times a day.

Brandon and I were completley unprepared to stay. He had only taken one day off work for the procedure and would have to drive home, leaving me there. (Thank goodness for hospital hospitality and Wallskog sisters to make sure I had clean clothes and enough food to get me through the next few days.)

The next day, they did a swallow study, a gastric emptying study, and an EKG. Olivia smiled through it all (okay, most of it) and other than being a bit bored, she was completely happy.
One day turned into three days before we were finally able to go home. (Thank you Tasha and Brittney for figuring out a way to get me home and for getting up at the crack of dawn to come get me.)

We learned: 1- Olivia's vocal cords are crappy. 2- Liv's reflux is really bad. 3- Liv's tummy empty's super slow, making the refulx worse and making the breathing issues worse. 4- She is no longer allowed to have chocolate, peppermint, or fried foods (as if I gave her that stuff anyway). 5- She will now be on oxygen/aggressive meds for an undetermined amount of time. (If these things don't help, she will have to have a trachea. And please, let's not.) 6- She will have to be followed closely by her doctors for quite some time.

This has been a strange adjustment for me. Just...different. A little bit hard, and a little bit sad.

So. Olivia now comes tethered....tethered to a wall, tethered to a tank. Other kids are intrigured by her new facial accouterments, Granny Kaye calls her her tubing her new "jewelry," and it hasn't seemed to slow our little one down in the slightest bit. She is figuring out her limits and just exactly how far 25 ft of tubing can get her.

So for now, we are managing. And so long as her face continues to look like this.....

.... we are going to be just fine.