Waiting to Exhale! (Long Post...Sorry!!)

Sorry ahead of time for the long post but I have told myself I will write this down....

For about the last year, our lives and especially Matt's have been in limbo. Waiting for answers, waiting to exhale and enjoy life with no uncertainties, no specialists, no therapists.

As some of you know, almost exactly a year ago, I sat in the Kaiser PICU (pediatric ICU) in Oakland watching and waiting as Matt was in the hospital for the third time in his short little life of 6 weeks. Matt had pneumonia for the 2nd time, a staph infection and was fighting for his life. A myriad of doctors and specialists were trying to figure out why he kept getting sick. Every morning, while at the PICU, I would make sure to arrive before 9am so that I could participate in doctor's rounds at Matt's bedside. For some of you, you know that 1) I am not a great morning person and 2) I am never (and I mean never) on time. But in this case I was always there, anxious to hear what the latest theories were and always ready with my questions.

One morning, the theory was cystic fibrosis. I was taken aback when the pulmonologist just flippantly suggested that Matt had cystic fibrosis. I was in tears. Not only is it hard to hear your child has a lifelong disease but being in the circumstances that we were in, plus hearing that kind of news without your spouse is a bit overwhelming. And don't we get tested for CF during pregnancy - I know not all tests are accurate but I swore I was not a carrier. Couldn't the pulmonologist check my records before suggesting such a thing. Anyways, I was traumatized but the next morning, CF was off the list of possibilities. RELIEF!!

After the specialist had eliminated most genetic disease and such, the only focus was anatomy issues. However, no tests could be performed until Matt was basically breathing on his own. So we waited and waited for 2 weeks for Matt to get off the respirator, then the CPAP, then the cannulas, etc. Probably the longest and hardest two weeks of my life thus far. Finally, at the beginning of Feb. 2007, the tests were performed - a swallow study, a barium swallow test, a pH balance study, xrays, ultrasounds, CT scans, neurological studies, etc. A lot of tests and studies for our little guy.

One day, during all the tests, Dr. Hayward, Matt's neurologist, came to examine Matt. After a 5-10 minute examination, she gave me her thoughts. "Matt possibly has Cerebral Palsy from not breathing but we won't know for sure for 6 months!" she said. And then just as quickly as she said it, she left his room for a meeting. WHAT! You are going to launch this on me (again, I am alone at the hospital because Alan was at work) and then not stay to discuss it with me or make sure I was okay. I was understandably beyond devastated. How do you deal with this? What is going to happen to our lives and to Matt and to Kate? I just got over the CF diagnosis and now CP. I knew nothing about CP except the picture in my head of a child in a wheelchair that is very tense. Needless to say, Dr. Hayward was not my favorite doctor.

Immediately, I called Alan. He did some research and then got to the hospital as quickly as possible. Come to find out, CP is an injury to the brain and the results can differ from mild to severe. And according to Dr. Hayward (a day later), most likely Matt's would either be mild or nothing. So I thought maybe I could handle this! I mean I had no choice at that point - Matt is my baby boy and we will do what is necessary to help him. But first we had to deal with his pneumonia issues.

After a million (it seemed) tests, Matt was finally diagnosed with severe acid reflux. So severe that his esophagus had stomach acid in it constantly and no medicine was going to help the problem. Our only option was surgery ASAP - like found out late Tuesday night and surgery was scheduled for Thursday. Surgery went well and Matt had a feeding port in his stomach to vent the gas (he can't really burp or throw up now because of the surgery). BTW, the feeding port was taken out in April after being in for 8 weeks. Hurray!!

Back to the CP thing, so off to specialists and therapists and such. At one time, we were seeing 2 speech therapists, an occupational therapist and a physical therapist plus the surgeon, a pulmonologist, a gastroenterologist, and the neurologist. Some in Oakland, one in Fremont, some in Vallejo, and some in Fairfield. We waited and watched to see how Matt would respond. Things we thought were cute, like the ability to hold his head up early, were signs of rigidness and possible CP per the specialists. It was very exhausting, both emotionally and physically.

However, the light at the end of the tunnel, in our minds, was 6 months and it was getting closer. At that time, we were actually getting rid of specialists (done with the surgeon, the gastro dr., and 1 speech therapist). So when our June appointment came with Dr. Hayward. I remember being anxious and scared, thinking this could be it, but also hopeful because things were going well. At that appointment, though, we found out that we would have to wait to see if Matt would miss any milestones or not walk in order to do the MRI that would diagnose him. WHAT!!!! More time to wait, more therapists. I couldn't believe it. There was no way I could sit in limbo for another 6 months but again, I had no choice!

So after months of therapists and working with Matt to catch up (oh and a 12 month appointment with Dr. Hayward that continually got changed), Matt and I were to meet with her on February 12th at a NICU follow-up appointment. Matt had started walking and his therapists were very pleased with his progress (but no one would rule out CP still). So February 12th was here....

And just as swiftly as Dr. Hayward announced that Matt may have CP, she swooped into the exam room and determined he did NOT have CP (in a matter of minutes) and we were released from her care. So that's when I....
Exhaled...and Breathed a SIGH of relief!!

Now Matt can be a normal little toddler but with an extra little belly button. A scar to remind us and him how precious life is and what we have been through in the last year.