So here goes nothing....
To give you a little background on who we are, we have to start from the beginning.
My name is Lindsey and I married my hubby in 2005. A few years later, we welcomed our first son, Joshua Jr. Things started off a little rocky, he was kept for "observation" for 24 hours before I could really be with him. After he got the ok, we went home and a few days later he had an ear infection and we were in the ER on Thanksgiving Day! After that, besides the constant ear infections, things went pretty smoothly. And then, before you know it, we were pregnant again!
In February of 2009, Lucas was born about a month early...after several attempts to come even earlier. I have to be honest, I was huge and miserable and glad we finally got the "go" for delivery even though it was a bit soon. The day went by pretty quickly. I started going into labor at home alone with Joshua Jr. After getting ready and dropping Joshua off at daycare, I went to my doctor where he confirmed I was ready and drove myself to the hospital. After a couple of hours, Lucas was born. Everyone was tiptoeing around me and I just knew something was wrong.
I finally got Josh to tell me that Lucas' foot was deformed and he couldn't open his hands. As the day progressed, things just seemed to keep going downhill. Although Lucas took a couple of bottles during the day, as the day came to a close, he no longer wanted to eat. By the next morning he still wasn't eating and hadn't yet made his first poop (which is a big deal if it doesn't happen by the 24 hr mark, who knew?) so the doc starting making plans to transfer him to Ochsner NICU.
On day 2, Lucas was moved to Ochsner while I stayed behind. This was one of the hardest things I ever had to do, but since I had a c-section, I had to stay behind another day. Thank God, my doctor gave me an early release the following morning and I headed straight to Ochsner.
For the next two weeks, I painfully walked the long halls to get to my baby. He still wasn't eating so he now had a feeding tube through his nose, and the doctors were talking about putting in a permanent feeding tube through his stomach. Only two people could visit him at a time, and big brother Joshua was not allowed in. I treated this time like a job. I got up and got dressed as if I was going to work, dropped Joshua off at daycare and was at the NICU for his 9:00 feeding everyday. We tried feeding every three hours until I left at 4:00 to head out to pick up Joshua. They started running tests to find out what was wrong with him, but kept coming up empty handed. They said his head was too big, his hair pattern showed signs he might have brain damage, he didn't have any toe nails, his penis was concealed, he had retained fluid in his testicles, his eyes were too small, too close together and one was almost shut, he didn't have eyebrows, he still couldn't open his hands, his hips were locked, his right foot was deformed...it was all just too much. The head doctor told me that he would never be a "normal" child, he'd never walk or even crawl and I'd be lucky if he could hold a pen. Then he told me that he didn't think I would ever be able to take him home.
I was sad, exhausted and in a lot of physical pain because I stopped taking my pain meds so I could drive myself to the hospital. I didn't want to believe my little guy was sick! How can a child who looks so perfect be so very sick? It was a very trying time for us, but with the help of a LOT of prayer and a couple of wonderful nurses, I was able to get Lucas to take a bottle, and we were finally able to take him home.
The next few weeks went by so quickly. With two little ones, there's always something to do. When Lucas was about a month old, he caught a cold. I didn't think babies were supposed to get sick then they're that young, but what did I know? I couldn't get the bulb syringe to fit in his nose to get his buggers out, and before I knew it, he got worse. My pediatrician admitted us to the hospital, and again they ran more tests, but found nothing. They were ready to send us home, but I knew something was going on. A week later, he wasn't any better. He wasn't eating well, and seemed to not have any energy. I packed my bags and told my husband in the morning, we're going back to the doctor and I'm asking her to put us back in the hospital. The next morning, I was getting the boys ready to go to the doctor and I noticed Lucas "twitching." His arms and legs were thrusting forward and his eyed started shooting off to the side. It only lasted for a few seconds, but it was scary. An hour or so later, we were at the pediatrician's office and I was explaining what was going on and he started "twitching" again. I showed the nurse and she got the doctor. At first she said it was a "baby thing" and didn't pay much notice to it. But as she continued the examination he didn't stop. She finally said she thought he might be having a seizure and she slipped out the room. Before I knew it, there were about a dozen people in a 10 sq ft room watching as they're poking and prodding and sticking him with needles. His seizure lasted 8 minutes long--which is FOREVER when you're standing there helpless watching it. They finally got an iv line in him and the ambulance arrived and we were rushed back to Ochsner. Before the seizure meds arrived he started having his third seizure--at this point, they were coming every three hours!
If I thought it was bad the first time around, I was about to realize that was smooth sailing. They told me that it was basically like he was exercising all day long just to suck, swallow and breathe. Although they couldn't tell me for certain, they thought his seizures were due to lack of oxygen from his airways being so swollen while he had been sick. They diagnosed him with Laryngomalasia. Over the next few weeks, he didn't get any better and had lost a ton of weight. He was down to just over 5 lbs (and I swear at least 2 lbs were his head). He finally had to be put on a ventilator. They performed surgery to open his airways a bit to see if that would help him to breathe on his own, but unfortunately, it did not help. They also did a muscle biopsy because they still had no idea what was wrong with him...extremely frustrating!
After surgery, his ventilator was removed and he seemed to do better, but it didn't last long. After a couple of days, the ventilator was put back in and the following week he got a trach and feeding tube. Two weeks later we were all set to go home and he got a staph infection in his trach and in several of his other incisions. I was devastated. I was literally packed and waiting to walk out the door when the doctor came back in and said we couldn't leave for another few days. Finally after a month in the hospital, we were able to go back home.
Over the next several months, we were in and out of the hospital. We got the ok to take Lucas to Disney World a few months later, and took a much needed break. Only to be flown to the nearest hospital from the rest area when his trach got plugged on the drive home. We seemed to be in the hospital for every single holiday....Until Halloween, I'd never been so excited to go trick or treating! It was never fun being in the hospital, but the hospital staff ended up becoming like a second family, and Lucas was everyone's favorite patient. I swear sometimes he would get sick just to go visit the pretty nurses!
Lucas was finally diagnosed with a mitochondrial disorder. I have come to believe that this is the disorder they tell you when they can't figure out what the hell is going on. The doctor actually told me that, "...[his protein levels are] not that low, but low enough to be considered a disease." In his case, his cells are not making the correct energy levels. He's on a "cocktail" to bring his levels back to normal. Is it working? I thought so at first, but honestly, over the long run, I'm not all that sure. He's one now, and has just started holding his head up on his own (except when he's sick), he's just been rolling over for a couple of months and he's beginning to sit up on his own for a few seconds at a time. Don't get me wrong, I am so proud of what he's accomplished, but I think it's more due to the therapy and sheer will power than the meds. It's been a crazy life this past year, I've changed more than I knew it was possible. But I'm so blessed to have a wonderful family and two PERFECT children!
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