All things considered, Oliver is doing well. Since coming off the NIPPV, he has made it his goal to show Mom and Dad just why the NICU nurses refer to this journey as the roller coaster of a lifetime. One minute, his oxygen needs are basically the same as what is offered by room air and his breathing is strong and steady. The next minute though, he is forgetting to breathe, his heart rate plummets, and his blood becomes desaturated of oxygen as quick as the wink of an eye. It takes him a while to recover from these spells, and it is quite painful to for us to watch.
Last night for a few minutes, his skin was completely grey, void of any real color. He looked inhuman and lifeless as he lie there in his mother's arms. My heart ached. He gets this way sometimes when he has a severe desaturation spell, but I had never seen one so serious as this. I struggle with the lack of control I have over these mini-episodes that Oliver must overcome. I want so much to be able to do something to stop them, or even better, avoid even starting them at all. I am forced to stand there and watch him suffer, a helpless child working so hard to stay alive. I hurt for him. This journey seems so difficult, and so very long.
When the roller coaster is at it's peak, we still find time to enjoy his silly moments too. He loves to work with his little hands, always grabbing at everything he can. The other day, he pulled his feeding tube out of his stomach. He managed to get it out so far that the nurse had to put in a brand new one. He also likes to help out with the oxygen mask we use when changing out his CPAP headgear. Little Mister Oliver is all about giving a helping hand. Thanks buddy!
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