So...

...this is me writing from the 4th floor. Every once in a great while I'm actually wrong about something. And this just happened to be one of those rare occasions. (And anyone who can't see the sarcasm dripping from these words just doesn't know me very well. You should give me a chance. I can be very nice...when I'm not being so sarcastic. Ha!) This was an unusual day, but productive in several ways.

Here's our interesting, activity-filled day in review (with a couple highlights from last night):

- Judah and I got bored last night, so I took him into the hall by the nurses' station to explore. He spent the next hour crawling and exploring as far as his little hands and legs would carry him. He was so stinkin' cute!

- IV #3 went in last night. #2 made his hand puffy so it was time to go. He's sporting the new one in his foot; a first for him. We hate IVs.

-This morning I went to the coffee shop as usual. I always get a white hot chocolate (love, love, love it!) and a muffin, but decided on a regular cup of coffee instead. The woman at the counter gave me my coffee for free! She said since she gave one to my husband yesterday (another story) she thought I should get one, too. She also gave me a frequent buyer card to put in one of the 3x5 card holders on the counter where all the medical staff/personnel & other "frequent buyers" keep theirs. I'm not sure if I should be sad, or feel honored in some twisted sort of way, or what; but regardless, after I buy 7 more cups, I get another free.

- I got to spend the day with Lydia today. That girl is pure sunshine! She delighted everyone that was in and out of the room today, and helped me take care of Judah all day...naturally. We took a walk this morning - and late this afternoon - and had fun playing beauty parlor, reading, playing in the playroom, and exploring a little, too. Family lunch at 11:30, family dinner & a movie this evening. I really miss Jared and my kids. Judah does, too. It's time to go home.

- This afternoon a volunteer brought the book cart around. It's a small cart with 3 shelves full of books! Lydia got to pick one for herself (Victoria Kann's "Goldilicious", a no-brainer for her) and one for Judah. She spent a good 5 minutes trying to find just the right one for him. She landed on an adorable board book about a little Siamese cat that apparently thinks it is, or wants to be a Chihuahua. Good stuff.

- Got to spend an hour of the afternoon with my dear friend who has won my lifelong devotion by bringing me caramel frappes. OK, so she's won me over for so many amazing reasons far beyond that. The frappes are just the icing on the cake! We also had dinner brought to us by another dear friend. It was a huge blessing to not only eat a fabulous meal, but also spend time with her. I've missed you, Mama!

**On that note, I just want to say that it's really hard to ask for help sometimes. Especially when it seems like you're asking for or needing help more than...well, everyone else. It's humbling and it's so contrary to my nature; but I can't get away from the truth that God keeps bringing me back to lately. We really need each other, and He made it that way on purpose. We're better together! (Especially when we're in the midst of hardship producing faith!)

- Judah spiked another fever this afternoon. Not high, but a fever nonetheless. Tylenol kicked it, but he got another one as soon as that wore off. I often marvel at the resiliency of my other kids, and take that for granted. Judah's body is not able to fight off infection the way a normal person's body can. He has so many things medically and anatomically going on besides a serious infection. It scares me a little. The Hospitalist (a pediatrician that only works in the hospital and acts as the primary dr.) said she'd still send him home with a fever, though, because she knows that I know how to handle that. That makes me feel good.

- When Judah has a fever the steroid that replaces his stress hormone actually has to be stress dosed. He needs triple the amount of his normal dose. He went back down to his normal dose this afternoon before his temp. went up, so tonight he needed that dose to go back up. The resident who's on ordered a dose that was 2 1/4 times more. Huh? Since I was still in my mama-bear-advocate role (more on that in a minute) I said to his nurse, "That's not right." I had a good talk with her about it - also a mom of a special needs kiddo that she regularly advocates for and watches like a hawk - and she went back to the resident. A little while later the dose came back right:) I know that resident is smart, has far more training than I ever will, and had her reasons; but I do not mess around with his endocrinology meds. Especially the one that prevents him from becoming dizzy, nauseated, etc., lethargic, comatose, and dead. Thank you very much.

- So, the new plan for Judah is as follows: Tomorrow morning a nurse will insert a picc line into his arm. It's a small catheter (but bigger than an IV) that will run up a larger vein in his arm and stop over his heart. This way he can go home on IV meds, kill the infection, and be covered until surgery. Lord willing. He'll have labs tomorrow, and once all that comes back and they're sure the dosing is still perfect for him, they'll send us home. There was some "confusion" today when Infectious Disease gave their recommendation for treatment, since they'll be the ones managing the outpatient medicating. They gave a recommendation that shocked the urologist and the hospitalist; and the "compromise" that the 3 parties came to in Judah's best interest was not at all satisfactory to Jared or me. Things get sticky and frustrating when you have multiple specialists giving recommendations to a hospitalist team responsible for making the final call, and they all have differing ideas of what might be the best thing for Judah. Somehow they have to take those differing ideas and opinions, and work together for the ultimate goal of making Judah well. And sometimes this mama has to step in and voice her concerns and frustrations about the process and where all those recommendations take them. That's what happened late this afternoon. We had ourselves a heart-to-heart with the hospitalist (read: I got a little emotional as I somewhat passionately, but respectfully, voiced said concerns and frustrations about some changes to the plan while Jared quietly stood by my side and lent moral support), and were able to come to an agreeable resolution to the whole thing. Meaning we went back to the original plan, we can go home tomorrow, and Infectious Disease can just deal with it. [OK, I'm sensing that I'm not quite over this whole thing yet. Deep breaths, Bethany.] I feel like everything I've learned about being assertive and advocating for Judah sort of came to the rescue today, and I'm so thankful for how God has equipped me. I'm not the advocate I want to be yet, but God is at work. Actually, I should really say that God came to the rescue today, but He decided to let me in on it.

Some things to pray about...if you actually made it this far into the post:)

- Judah's fevers are somewhat disconcerting, and this whole scenario would look a little different if he could get past them. Overall, pray for God's healing.

- That the picc line insertion would go smoothly in the morning.

- One of the meds Judah is on comes with some decent risk if it's not dosed just right. They will have to monitor him closely while he's on it. That makes me nervous. Pray for protection and perfect dosing for him. And pray for me as I learn how to give it to him and then do it at home.

- The surgery on the 12th and the subsequent recovery will be trickier since he'll only be a couple weeks from infection. Pray for a safe operation with no complications, and a smooth recovery.

- Pray for my heart. I am scared. There is a lot involved in this, and many of the elements are...scary. I can do my absolute best to take care of Judah and give him everything he needs; but the outcomes are completely outside of my control. I can't make him well. I can't prevent infection. I can't control what the medicine might do to his body. The picc line is new to me. I know I can do it, and I will; but it's a new element in his care, and that's kinda scary, too. Surgery is coming, but it seems like it's still too far away; and I'm fearful that even after the obstruction is removed he'll still get infections because of his renal anatomy...even though he hasn't had any in the last 2 years. I just worry.

I know God's promises to me and to Judah. I know Who He is. But this is just where I'm at right now. Thanks for praying.