Tinkering on Tuesday

Well, it’s been a tiring day for sure. A day of tinkering doctors and respiratory therapists (RT’s). A day of hovering. A day of trying to wean Samuel from the ventilator. A day of frustration in many regards. I won’t say that the docs, nurses, and RT’s made much progress with our little guy. In fact, we ended the day on a higher vent setting than we started with. Ugh. Samuel was a trooper through it all, and his heart endured a lot. They suctioned and suctioned Samuel’s lungs and took a record number of blood gases. (Poor kid has now had 4 blood transfusions in his first 17 days of life.) His blood gases were pretty poor all afternoon. They took him off the nitric oxide, and they took two X-rays.

Samuel’s lungs look quite bad. They sound terrible too. One doctor said they were “dismal.” I could even hear the junk in them without a stethoscope. His lungs are full of fluid and gook. Yesterday his left lung was collapsed, and his right lung looked ok. Today, after yesterday’s bronchoscopy, his left lung looks better – some air in it – and the top of his right one is now collapsed. So all the tinkering was in an effort to open up his lungs and get him breathing better. Alas, I don’t think it did much or any good.

They took Samuel off the paralytic this morning, which I was really excited about. However, you would never know he was off it. After 10 hours without it in his system, he was just as asleep and still as when he was on it. I kept hoping he’d open his eyes and let us see him, but he was utterly uncooperative. Maybe tomorrow we’ll get to see those eyes of his.

Samuel is now very swollen and puffy. The nurses and doctors assure me this is normal and is part of having heart problems and being on the ventilator, but I hate to see it. Honestly, I wouldn’t believe he was the same child I gave birth to if I hadn’t seen him everyday and seen the gradual progression of it. He looks totally different. I kind of wonder if he could open those puffy eyes if he wanted to. From days of lying on the bed, he has a pretty funny shaped head too, and Bryan and I sort of jokingly wonder if his nostrils will be permanently flared from the tubes down them. What a rough start to life our little guy has endured!

Despite all of these things, we feel like he’s been pretty stable for the last 4 or 5 days, and that’s been encouraging to us. We are hopeful that his lungs will start to cooperate. The docs are hoping once he wakes up more and starts to add his own breaths to the ventilator, he will be able to open his lungs more and get some of the junk out of them. We are praying this is so.

We’re becoming the “regulars” at the hospital. One nurse said to us today, “I don’t remember giving you guys a season pass.” And the RT’s now say, “See you tomorrow, guys!” as though we’re old friends. The ladies at the CICU front desk know us well, and I think even the check out ladies at the cafeteria know our names! Our ped. cardiologist called today to check on us and told Bryan, “I have been afraid to talk to you. You’re such a nice couple, and no one ever has any good news for you.” All that to say we are known and noticed here in the hospital, and we have a chance to show the staff and doctors God’s love and grace. Somedays that seems really hard to do as we get so focused on our story and our son, and we get worn out. But we want to love these people too, and we want to be a light wherever we are. You can pray that we shine Christ’s light brightly and faithfully in this unique opportunity to be His hands and feet.

You can also pray that Samuel’s lungs get cleared of all the mucus in them, that he wakes up more and cooperates with the ventilator, that he can get off the ventilator soon, that his blood vessels to his lungs relax and let blood flow through them, that his nurses and RT’s are conscientious, gentle, and attentive, that the doctors know how to proceed, that his heart can function as it ought, and that the LORD DOES A MIRACLE AND HEALS OUR SON!

It has been a really long day for us – the hour and 40 minute drive home in bumper-to-bumper traffic didn’t help. But we came home to a meal from friends, a thoroughly cleaned house thanks to some generous friends and coworkers, gas gift cards in our mailbox, and some yummy cookies. Thank you, friends, for serving us, loving us, and praying for us. We are blessed again and again by you. And now, to bed we go!