Day -3: Bumps in the Road, Par For the Course

 Today has lasted forever. I kept staring at the clock and thinking how long until this day was over with. There have been some wonderful highs, and then some typical lows.

A beautiful sunset out the window, and a handsome reflection in it. I thought it was kind of poetic how two these two worlds were separated by a simple piece of glass.

I think I jinxed myself for saying in my last blog post that I sleep better while being in the room with Kal. Last night was not the best. The nurse came in every hour to do something: administer the chemo, take off the chemo, change the IV lines, check vitals, or even to just check on him. Don't get me wrong. I love nurses, I have many friends who are nurses, and I know she has to do her job with extra monitoring ever since his chemo regimen started. I just wish at nighttime everyone would just magically not be sick so the nurses wouldn't be required to check in while we're sleeping. Is that too much to ask? (I hope you know by now I like to use sarcasm quite often.)

So, with all the middle-of-the-night wakings, Kal got up extra early, around 6ish, but fell back asleep with his pacifier until a little after 7. Ugh. Mornings. He was getting a little fussy, so I prepared his baby food concoction while the nurse administered his morning meds. Kal kept gagging on his meds, which wasn't too typical of him in recent days. Luckily, he finished all of them eventually. Then, I tried to feed him his baby food mixture, and he was refusing- like, screaming bloody murder and covering his mouth with his fist and arm, flat-out refusing to eat. Whenever I tried to sneak in a half spoon of baby food, he would gag so hard as if he were going to vomit at any moment. That wasn't like him. He was being such a rock star eater with his baby foods in the past few days, and now he suddenly hates it? After talking with the nurses and doctors, we all agreed that this was just the chemo catching up to him and showing some of its affects- nausea and loss of appetite. Boo.

Morning snuggles with Mama

We gave up on that battle to force feed him because we don't want to make him hate eating. It was just so sad, though, to see him so frustrated. I could tell he was so hungry, yet he didn't want to eat anything. That made for one fussy baby. Finally, we got him to calm down, just play, and be happy. Mama and Daddy snuggles also helped out (and us, too hehe!). There was one time he was sitting in his Bumbo and he wanted to play with the side of his crib, so I moved him closer to it. It was so cute- he wanted to grab the bars of the crib and it made him look like he was in Baby Jail. Yeah, well, he kind of is in real life anyway, but he makes being a hospital inmate look cuuuuuute!

Ahh! Let me out! I want my lawyer! (Hehehe)

 

Jonald and I were able to attend church here at the hospital today. They have a Primary Children's Hospital Branch that meets in the Auditorium here. There is only Sacrament Meeting, and it only lasts 30 minutes. I'm guessing that's so the parents (and sometimes patients) don't have to stay away from their room for too long. I even saw some doctors attend the service today. The feeling in that room was overwhelming. It was wonderful to feel in the presence of so many members of the Church whose families are going through medical trials as well. It was like we all supported each other in Spirit, but probably hadn't spoken a word to one another before. For the opening hymn, we sang, "Come, Come Ye Saints," probably in honor of the recent Pioneer Day holiday this past week. Although this song was written about the Pioneers in the past, the lyrics to this song began to have a new, beautiful meaning to me as I am here with Kal during these medical trials. I could barely keep the tears that were welling up on the brims of eyelids from falling down my cheeks. The song brought so much release of emotions, yet peace and strength to my heart. If you don't know the words of the song, here are the lyrics:

Come, come, ye Saints, no toil nor labor fear;

But with joy wend your way.
Though hard to you this journey may appear,
Grace shall be as your day.
'Tis better far for us to strive
Our useless cares from us to drive;
Do this, and joy your hearts will swell--
All is well! All is well!
 

Why should we mourn or think our lot is hard?
'Tis not so; all is right.
Why should we think to earn a great reward
If we now shun the fight?
Gird up your loins; fresh courage take.
Our God will never us forsake;
And soon we'll have this tale to tell--
All is well! All is well!
 

We'll find the place which God for us prepared,
Far away in the West,
Where none shall come to hurt or make afraid;
There the Saints will be blessed.
We'll make the air with music ring,
Shout praises to our God and King;
Above the rest these words we'll tell--
All is well! All is well!
 

And should we die before our journey's through,
Happy day! All is well!
We then are free from toil and sorrow, too;
With the just we shall dwell!
But if our lives are spared again
To see the Saints their rest obtain,
Oh, how we'll make this chorus swell--
All is well! All is well! 

"Come, Come Ye Saints"

Text: William Clayton, 1814-1879

Music: English folk song

After church, they had a table with blankets on them where you could take one for your child. Stitched on to the blanket was a sweet little tag. I love the scripture on the tag, "and he took their little children, one by one, and blessed them." That scripture brings a whole new meaning to me now, about how precious children really are in the sight of God. I can almost envision the angels coming to the hospital and kissing all the children in their sleep.

Showing off his adorable new blanket

The rest of the day just kind of dragged on: fighting for him to eat, distraction play time, and then naps, along with all of his medicines and medical what not. He did finally eat about one package of baby food throughout the day. That's it, though. Poor little buddy. He must be starving.

I saw one of Kal's previous nurses in the unit tonight, as she was assigned to different patients this shift. She asked how Kal was doing, and I explained to her about his refusal to eat much today. She sighed and said, "Well, unfortunately, that's just par for the course." It sounds like we're just getting to the tip of the beginning of Kal's rough days. Hopefully he will do well weathering out this storm. In the meantime, I will be keeping the lyrics to "Come, Come Ya Saints" in my mind and close to my heart to remind me: "But with joy wend your way. Though hard to you this journey may appear, Grace shall be as your day... Gird up your loins; fresh courage take. Our God will never us forsake; And soon we'll have this tale to tell-- All is well! All is well!"