Today is Friday, and it's been more than 48 hours since our baby boy came out of surgery. I'm too exhausted to rehash everything that has happened since then, but suffice it to say that it's been up and down, and I pray that we're finally at the more-up-than-down point, maybe beginning the long uphill climb. Mason ended up needing the patch instead of the repair, so he'll need to have this patch replaced someday when he outgrows it (hopefully after puberty), but Chris and I are encouraged because a new, less invasive procedure is in the trial stage and will be commonplace by next year. The new procedure allows doctors to go in and "upgrade" an old patch without open heart surgery (they go in through the femoral artery). Dr. Kaushik says they are doing that on adults now and should be doing it for babies by 2010. So who knows what technology will allow them to do by the time Mason needs a new patch?
The first 24 hours were especially rough, and every one of the more than 2 dozen doctors he's seen in the Pediatric Cardiac Intensive Care Unit at Vanderbilt seemed to have a different idea of what he needed. I understand that there is no single magical treatment, but a little more consensus would be comforting to Chris and me. Just after one doctor came in and said things were going well, another would pop in and say that things weren't progressing well. Admittedly, today has been better, and everyone seems to be more on the same page.
All in all, Mason's nurses have been awesome, and we really appreciate the skills of his surgeon, Dr. Christian. Surprisingly, Mason's incision is the least disturbing to me. The breathing tube and tube in his nose are a lot harder to see. Even though we saw pictures of other babies who've had this procedure, nothing prepares you for the sight of your own tiny son hooked up to ventilators and a pacemaker and all kinds of monitors. That first time we saw him after surgery was heartbreaking, and I only say that because there are no words to adequately describe how I felt in that moment. I'm not going to post pictures because they're pretty raw, and Chris has decided that he doesn't want people to see baby Mason like this.
I am so thankful that my mom and sisters were there for me. Having Mary there to talk to was especially comforting; she can understand some of what Chris and I are going through because she and Jason have been through the NICU and PICU with Jase back home. We were talking about how we felt when they took Mason and Jase away as babies to be transported to the NICU, and Mary said what I said to Chris on that day: "Nobody should ever have to leave the hospital without their baby." And no parents should ever have to see their baby the way Chris and I are seeing Mason now. I know Chris would tell you that handing him to the anesthesiologist who took him off to the operating room on Wednesday was the hardest thing he ever had to do.
So here we are now, though. I'm sitting in the chair just a few feet from his bed, which is crowded with stuffed animals that people have bought him. The end of his crib bears a sign decorated with his name (Mary made one for each day, so we change it every morning), and I surrounded that with pictures of him with Chris and me. One of the stuffed frogs wears a whistle around his neck, a gift from Jase to his cousin--just in case Mason needs to call for help. Haha! Mary also made a big poster that says "We Love Mason" and has all the names of his grandparents, aunts, uncles, and cousins (and Pastor Tony, who drove all the way from Maryville to sit with us through the surgery). I laughed and told her that nobody would believe that was just his immediate family! I hung that poster on the glass door to his room and put more pictures around that, as well as a sign Haylee made for him while she was visiting and one that my 6th period class made for him. Mary also tied a giant dump truck balloon to the front of his crib; Jase would be so proud of his mom's good taste. Aunt Mary read "Llama Llama Red Pajama" to him, and it became a joke because the scared llama in the book bears a remarkable resemblance to our big-eyed boy. Nanny found a llama in the gift shop and bought it for him. So cute!
So all day we talk to him and massage his arms and legs and wait for the precious moments when he opens his eyes (which is amazing because the attending doctor said that Chris or I would be asleep if we were on as much medication as he is). He opened his eyes this morning and turned them toward me when I called his name, so I know he's aware that we're here. Today he has been stable, and they put in a feeding tube and started giving him a little milk so that his bowels can get back on track. It was hard to see another tube go in, but we knew that meant progress. They also put in another chest tube to drain excess fluid from around his right lung, hoping that that would improve his oxygen saturation and make it easier to wean him off the nitric oxide and oxygen they've been giving him. Already we're seeing some improvement. If he keeps this up, his drains may come out tomorrow and (hopefully) the breathing tube will follow on Sunday.
Most amazingly of all, he's trying to smile! How he can smile through all the sedation is beyond me. I don't know which is harder to believe...that he is able to smile or that he even wants to! We are so blessed to be Mason's mom and dad! What a miraculous kid to be smiling around a breathing tube, under massive sedation, and with tubes and wires coming out everywhere. He constantly amazes me.
Thanks to everyone who has sent good wishes and prayers. I can't believe how many people across the country are praying for him and how many people have told me that they've put him on their churches' prayer lists. Mason is definitely being lifted up! That means so much to us and makes this whole ordeal easier to tolerate.
No comments:
Post a Comment