Our night nurse called in sick, so we are going it alone tonight. No biggie, it happens and we are trained in caring for Dakin, thank goodness. I am a little nervous, though, as he is on oxygen tonight. Dakin is NEVER on O2, and his oxygen saturation is typically 98-100 all night, every night. Tonight, though, we're having a hard time staying at 97. Not sure why...we did agressive chest percussions with his breathing treatment, and even did an extra treatment 2 hours later. He's just tired, I guess. It happens.
Anyhoo, one of Dakin's SMA buddies had a year in review posted on her website, and I thought it was a good idea (hope you don't mind, Kim!). 2008 was, in all honesty, the worst year of our lives, and not just with Dakin's problems. I won't go into the other stuff, though, and stick to the D. Let's see...at the beginning of January Dakin began eating less and less, and started gagging profusely. 1/7 he was taken to the doctor and put on Reglan for "reflux." Reglan didn't help, back to the doc where he was put on Prevacid. Two days before Dakin's crash, he cried all day and when he wasn't crying he was sleeping. Thinking it was his formula upsetting his tummy, I switched him that night and he seemed better the next day. Then came January 24th. We woke up that morning, and Dakin was very lethargic. He wouldn't smile and was retracting in his breathing (which I didn't recognize at the time). I thought the lethargy was due to him not eating enough, so I got in to see the doctor that day. My dear friend Heather drove us there, and when we got there they put Dakin on a pulse oximeter (I had no idea what that was at the time.) The doctor gently wrapped Dakin up and told me we needed to go to the Emergency Room. His nurse drove us there. Dakin was intubated in the ER and we were lifeflighted by helicopter to Medical City Dallas. We were in isolation for the first 72 hours or so, thinking it was RSV or something of that nature. Dakin had the "million dollar workup" with every test they could think of short of an EMG (that came later). All they could find was that his diaphragm was not moving as much as it should. They tried and tried to extubate him, but he just couldn't keep his sats up, so they trached him around the 10th or so of February.
Finally the 16th of February we got to leave and go to Baylor Our Children's House. We spent 7 weeks there, learning to care for Dakin on our own. Time definitely well spent. March came and towards the end Dakin's pulmonologist recommended that we see Dr. Iannaccone, a world-renowned neurologist. We were transferred to Children's Medical Center Dallas and she saw him there. We also had more CT scans and an EMG/Nerve Conduction study. She recommended that we test him for SMARD-1.
Then on April 9th, we were FINALLY released from the hospital! We spent April, May and June getting accustomed to having 24 hour nursing in our home, as well as the rigors of caring for a ventilator dependent child. We also worked hard to help Dakin to eat normally.
In July we got to go to Daddy's family reunion, which was a wonderful experience. In July we also got the test results from England saying there was in fact a mutation on one of his genes, supporting the diagnosis for SMARD. We spent August and September thinking he would not be with us for very long.
October, and NaNa (Mommy's mommy) came. 10/1 we saw Dr. Iannaccone, and she confirmed the diagnosis. Thankfully, she said that he should be with us for a long time unless he gets a respiratory infection. We spent October preparing for his birthday.
At the beginning of November, Dakin woke up with a hole on the side of his neck, which turned out to be an abcess with MRSA staph. Nice. So we were hospitalized, since everyone is afraid of a vent kid...lol...We were out soon, though. All better a few days later. We had Thanksgiving and Dakin got to sit at the table with everyone else.
December passed peacefully with lots of holiday celebration. Dakin's second Christmas was perfect.
Whew. Long read, sorry! We are hoping for a better year in 2009. Hope the same for everyone else!!!