Timelines, timelines, timelines!

Timelines....I'm soooooooo over timelines.  Cason has surpassed all the normal timelines.  Apparently, he follows his own timeline...and I wish it weren't so S...L....O.......W.....!!!  My littlest prince will be six weeks old on Friday.  This has been a rough time for him and for us.  Although this roller coaster ride will forever be etched into our minds, we are comforted that Cason will not remember ANY of what he has been through during his first 6 weeks of life. 

During this time, I haven't been good at keeping up with this blog.  Thankfully, most people are able to learn the news by reading my facebook page.  Below is a recap of everything Cason aka My Little Caseface has been through.  Please click on the links if you don't understand the terms.

On January 11th, my little guy had the Sano Norwood procedure which is the first of his 3 expected open heart surgeries. As his surgeon says, "Cason made the Norwood look easy."  Following the surgery, he remained on the breathing tube, had an expected chest tube, and had his chest left open to allow the swelling in his heart to subside before closing the sternum.  The next day, the cardiologist said Cason is doing "fantastic", and the nurse said "I can't express how well this little guy is doing."


For several days, he was smooth sailing.  His chest was closed up 5 days following the surgery.  We were warned that there are many ups & downs on the road to recovery for these babies, and BOY were they telling the truth!!!!  They attempted to extubate (remove breathing tube) on the 18th, but he just wasn't ready.  By the 20th, Cason had to receive a chest tube because he had fluid building up (pleural effusion) around his left lungs.  Two days later, the doctors place another chest tube on the right side. Another 2 days later, we received a letter from the Texas Department of Health stating that Cason may have a metabolic condition where he can't digest some fats. We were wondering if this little guy was going to catch a break.  This test hasn't been repeated for accuracy , and it may be inaccurate due to some treatments Cason has been receiving.  Let's hope so!!

Finally, things seemed to be going in the right direction. A special monitor in his heart was removed on January 26th, and I got to hold him for the first time since the surgery.  Then a few days later his breathing tube was removed, followed by his chest tubes.  Formula feeds were started as well.  We seemed to be smooth sailing at this point. BUT, Cason came down with some serious infections.  He was diagnosed with pneumonia & sepsis (blood infection).  We were devastated.  Next, we noticed he having seizures, and our worst fears were confirmed by a lumbar puncture (spinal tap)....He has meningitis!  Basically, Cason has a full body infection and the only part of him that was doing good is his heart (the part of him broken in the first place).  An MRI discovered that he had some bleeding in his brain and infarcts.  So far, he doesn't appear to have any complications from this.


On Friday February 10th, Cason went back into surgery to have several procedures.  He had the Nissen Fundoplication to fix his reflux, a G-tube  inserted to help him take in food, a Broviac catheter (long-term use IV line) to get his weeks of antibiotic therapy, a circumcision, and another lumbar puncture.  Thankfully, his lumbar puncture came back negative meaning the antibiotics are working.  Now, he has 4 weeks of antibiotic therapy starting from the 10th.  He seems to be recovering pretty well from the surgeries, but he did have to get another chest tube due to another pleural effusion.  Today, he is looking great & sitting up in a bouncy chair. We hoping are hoping to get his breathing tube out this week.  As for when he will go home.....I don't know for sure.  They are working on it because they're setting up home health care, feeding pumps, etc.


The rest of the Howey clan are doing pretty well....aside from a few little sicknesses.  We closed & moved into our new house on the 27th of January.  Thankfully, my parents and several AMAZING friends came by to help with some of the unpacking.  There's still some to do since I spend much of my time up at the hospital, but all the major stuff is done, done, done!!  Pictures of the new house will come at a later time since I am soooo preoccupied with my little men.  Coyt has been doing great at using the potty to pee, but #2 is still an issue.  Hopefully, he won't digress once Cason comes home.  He really enjoyed his Valentine's party at daycare yesterday and is looking forward to his birthday party over the weekend.  Again, thank you to some amazing friends that have done all the party planning for me! Here's a picture of my little Valentine, Coytman: