Monday, Tuesday...more good news day!

Monday: I slept here on my own next to Oakley, Trevor went to our Ronald McDonald room to sleep on a big bed. I woke up for rounds; Oakley slept through the night-which I didn't expect, since he still wasn't allowed to eat. At rounds, I asked when I would be allowed to feed him, and the doctor said that he wanted to give it another 24 hours (even though he had met the requirements that the doc had set the day before). Neurology came to visit to give us their opinion on the seizures and apnea spells. They told us they weren't sure that the apnea spells were caused by the sub-clinical seizures that showed up on the EEG. They said that he may have had these seizures for a long time, and that they were an incidental finding. They wanted to have another EEG to see if the sub-clinical seizures were still occurring, now that he's been on Keppra for a week.
Still no apnea spells since coming off the CPAP and the nasal cannula, so he's doing great in that department. His blood sugars had an eventful night though. He had been pretty stable for the day, and then, out of nowhere, his blood sugar jumped from 184 to 555. We actually tested three times, the hospital meter said 564, 566, and Trevor's meter read the 555. That's super high, and dangerous. When your blood sugar gets too high, you start spilling ketones, or going into DKA (diabetic keto-acidosis), which means your body starts to break down tissues because your body is so acidic. We started checking his lines, and couldn't find anything that was clamped or leaking. The resident doctor came in and after confirming we hadn't been feeding him maple syrup, wrote an order for a blood test in the lab for his blood sugar.
While waiting for the lab, we noticed the D10 (10% Dextrose) bag that is hung and clamped, so that it's available for a quick bolus if he's low, was getting a little low...but we hadn't needed it for a day or two. The nurse looked at the clamps, and the one closest to Oakley's body was unclamped-probably from him being moved and active- and that the clamp on the top of the line was unclamped too. He had been getting high-sugar content water for an unknown amount of time, and got nearly 1/3 of his bag. The nurse called the resident and let her know, and she ordered for a bolus on his insulin and close supervision and blood sugar checks.
Since this incident, they have taken the D10 bag down, and just have it nearby...not hanging on his tree and not connected to his lines. Good news: It was Bactrim day, but no emesis (puking)!
Tuesday: Oakley was up until 3, and then was awake but quiet from 8 on. His nurse came in to give him his meds at 9, but since Trevor and I were sleeping, she held his meds until we woke up (weird...and not okay). We ended up waking up around 10, and when his nurse came in and told us, we were on guard because she had started off on a bad foot with holding his meds. We talked the doctor into approving feeds for Oakley, but they want to have his zenpep delivered in the beads instead of him swallowing the whole capsule. They had to write an order for it, so we didn't get to feed him until about 5:30 pm. They decided we needed to be educated on how to administer his zenpep (since we've only been doing it for 3 1/2 months), so they called in a nutritionist that works with the kids with CF (cystic fibrosis). That nutritionist is very lucky that I was at my PT/INR (my blood clot test) and wasn't there to give her a piece of my mind. She wanted us to give it to him with applesauce (I want his first food to not be a medical procedure...call me crazy), and told Trevor that we weren't feeding him, it was a procedure to get his zenpep down.

...and Aside...

Trevor here. Now, I rarely get in the way of what and how medical personnel approach their specialty, but this broad was off her rocker. First off, she came in to the room without introducing herself and just started explaining that she was a nutritionist who usually works with the "CF" kids. Oakley doesn't have CF. Never did. She begins to run through her CF pancreatic lipase spiel by stating that all her CF kids love taking their meds with applesauce and even though its not hospital policy, this is what she found has worked for again, her CF kids. (and again, Oakley doesn't have CF.) I stop her here and explain Sam's afore mentioned apprehensive approach to the medical applications of applesauce. This apparently hits her ear like an ice pick. She looks at me like I just punched her in the titty. "Well, your wife is going to have to learn that some things work better than the ways they've been done in the past." Again, I explain the sentimental approach Sam has towards the applesauce in this case. She then decides to pull out the scientific approach and the ugly, dark, brutal side of pancreatic lipase. "First, you should know that if those beads don't get washed down they can..." I finish her sentence..."ulcerate? We know. That's why we always wash them down with atleast 5-10mls of sterile water. We've done it that way ever since he was on Creon before his Zenpep."
"Oh, well then you know the importance of these beads getting to the duodenum for them to start breaking down properly?"
"Right. The GI specialists that prescribed them for him back in Boise said that they actually start to break down in his small intestine, but we always make sure they're washed down well before we even feed him."
"Well, I guess I won't argue it, but please have your wife call me if he has trouble with the beads."
She then handed me the instructions for placing applesauce on the end of a spoon, twirling it to acquire all the beads on the end of the spoon in a med cup, then place in childs mouth. That was her revolutionary procedure, no, the ONLY procedure for giving beads of medicine. I politely accepted it, thanked her for coming and before I was finished wishing her goodbye, she was already out the door. I then immediately sent Sam a text stating, and I quote, "You are so lucky. You would have murdered this lady."

And indeed, she was lucky. I texted her all the above, and it wasn't pretty when she got back. That woman had long since left, but the nurse got the ear full of it. I don't think that woman will be coming back to our room. Ever.

Back to Sam; I finally got to feed Oakley at 5 pm, and I tried without the nipple shield...It worked! For the first time ever, Oakley breastfed directly, and seemed to really like it once he got the hang of it.

Another first, and the best: Oakley laughed today! He was cooing, and smiling, and then he giggled. I was so excited, and Trevor was skeptical that it counted. Later, he laughed again, for a longer amount of time...and he's been laughing all night. Once, he even laughed so much that it scared him and he started to cry.

I'm going to cry, because I am so happy to hear his laugh. I am so lucky that despite the chaos and the pain he is constantly exposed to, he can still find joy.

This shirt he's wearing is so very appropriate to me. It says "Little guy, Big potential." I think of how small he started out, and how far he has come, and how many lives he's already touched. To think he's 5 months old (it's 1:15 am on the 19th up here) now, and to remember back on all he's already accomplished is so astonishing. I thought that I'd have a normal life, and now I realize that even though I haven't gotten the picture perfect life I had imagined, I have been given so much more.



added so you can see how much he's grown.
This pic was taken 07/28, look how big
his hat looks!



I am thankful for every day that I wake up, that Oakley smiles at me, and that Trevor bonds with our son. We have been able to bond with him in a way that we just wouldn't have been able to, because we can devote every waking (and some sleeping) moment to our son. I miss my job. I miss our house and our dog, and our fireplace, but I am blessed to get the opportunity to be there for the first giggle, and many more.