Day +9: Smelling fishy and Shedding Like a Cat

Last night was somewhat more restful. He seemed like he was sleeping more peacefully, which was a big help. He didn't even need any oxygen last night. But then there were those moments where I would wake up to the sounds of him gagging and choking on mucous. I would have to jump up really fast and turn him on his side so he could get some of the junk out. The nurse helped by sucking out some of the junk in his mouth one time (around 2 a.m.) when Kal was having a hard time getting it out. He woke up again a little before 4 doing the same thing, and had to throw up a few times to feel better. His mucous has started to be streaked with blood now, which is normal, because of all the sores in his mouth and throat that are just so raw.

Sleepy little boy...

During the morning, he was actually a little bit more awake, but still a little glassy-eyed. I think the benefits of the lower dose, yet more constant dose of morphine with the PCA pump really set in by then and was helping keep most of the pain at bay, unless he would have a coughing/puking spree. A weird side note: I don't know what it is about him, maybe because of his medicines, but this little guy's breath and mucous smells like fish. Not like the smell of fish from the supermarket or after it's cooked, but more like caught straight from the lake and sitting on the dock before it's cleaned. It smells super gross- like, makes my stomach turn sometimes and gives me shivers down my spine.

It's hard to see him when he is coughing/puking, because the mucous is getting thicker and therefore harder to get out on his own. I can feel his whole body tense up and heave so hard, yet hardly anything would come out most of the time. I mean, as hard as it is to see him like this, though, I know it's all part of the process. I know it's still going to get much worse, and will stay that way for a good little while, until it gets better.

Kal has still been having issues with fluid retention, so they put him on some more doses of diuretics to help flush some of it from his system. He is also still having issues with his face itching as a side affect from the morphine, but I've found that using a cool baby wipe on his face helps with both the discomfort of his swelling and with the itchiness.

Ahh, my eyes and nose are so itchy!

Kal's platelet count was down, so he had to get a platelet transfusion. After that, it seemed to give him a little boost of temporary energy and helped him perk up a little to have a sponge bath and get a little session in with the physical therapist. (They physical therapist helps with pretty much all the longer-term patients, since they are laying in bed for so long and want to make sure their muscles get a little work and don't atrophy.)

Apparently, Kal is trying to start a collection of pumps on his IV stand! We keep getting more and more: maintenance fluid (TPN), lipids, 2 syringe pumps for medicine/flushes, PCA pump, and a temporary pump added for the platelet transfusion.

Our sweet friends came by tonight to visit. They brought some yummy doughnuts and Asian food. Mmm. (; Kal perked up a little when they were holding and talking to him. They just love that kiddo so much. It was so great to see them and chat, as I haven't been able to for quite some time.

Sooo, the day has come. I brushed through Kal's hair with my fingers today, as I do every day, and this time a little hair came out. Yup, Kal's hair is finally starting to fall out. Every day I have been running my fingers through his hair, partially to enjoy it while it's there and partially to check if it was starting to fall out or not. Today when I did my little hair check, a piece of hair came out easily in my fingers. My heart sank a little, I'm not going to lie. In my head, all I could think was, "Ohhh..." I tried it again, for good measure, and another piece came out. Sigh... When I gave him his sponge bath and scrubbed his head, a few more pieces were left on the sponge. Then later, there were some hair collecting on his sheets. When I held him tonight, my shirt started looking like I had held a cat that was shedding. Little hairs everywhere. I did my little hair brushing test with my fingers again, and a little cluster of hair came with it. Yeah. This is really happening. I was holding out hope that since he hadn't lost his hair already, just mayyyyybe he would be one of the rare ones that just wouldn't lose their hair. Well, oh well. It is what it is. It's just a good thing he's only 9 months old. He doesn't really care if he has hair or not right now.

A little bit of hair here...

And a little bit more hair here...

Sigh...

The nurse said pretty soon, it would start to come out in big clumps.

I'm actually surprised how well I am taking this whole situation and journey in the hospital with Kal. I don't want to sound haughty, but I feel like I'm still keeping (most) of my sanity so far and just taking things as they come. I mean, I can't do much of anything about how Kal is feeling or what he is going through. We're here. It's happening, and there's no progress to be made if I'm sitting here distraught over it. We just survive, one day at a time, and count each day as a blessing to be alive and be "normal" and "right on schedule." I really am surprised at myself that I am still going strong. There is no doubt in my mind and soul that Heavenly Father has given me the strength I am having right now. I honestly know I couldn't be able to handle this all by myself. In addition, I know He has placed wonderful family and friends in our lives that strengthen me and my family. They have made this trial so much lighter to bear. This is such a hard situation to see our child like this, don't get me wrong, but I feel at peace that everything will work out in the end, and that it will be so worth it. God has brought me that peace, and I am ever grateful He continues to bless me with that peace every day on this journey.