Bear with me. I’m feeling spicy this morning. I can manage tired. I think I’ve been tired for 19 years- since I gave birth. I’m trying to manage watching that sweet boy I gave birth to, go through hell. Again. And I am missing my other sweet boy, Mason, so much. This continues to be so difficult for him as well.

We hit the world record during the night of the most unnecessary BEEPS. All BEEPs due to line occlusions. Not beeps from Lukes vitals or end of an infusion be it meds, chemo, blood, platelets, nada. I was up and on BEEP duty and had to call the nurse back in at least 9 times. That I remember. Lots of finger flicks to the line, lots of rehanging the line, switching the line pumps (AND DROPPING THEM ON THE FLOOR). They are now doing manual blood pressures for Luke. The machine blood pressures are not as accurate as manual ones but I would argue when the CNA has to be reminded how to do a manual blood pressure, the machine BP seems more accurate to me! Bless his heart, he was trying so hard, but is clearly quite new. I do hope he learned some things last night and got some good experience. After all, this is a teaching hospital. They are also doing temperature strips on Luke instead of the quick head/cheek/neck one. Why? Because his face is shiny from the chemo and may not get a good enough reading. This requires them to dig under his blankets, lift his shirt, lift his lines, stick the strip under his armpit. Wait. And go back and find it two minutes later. It’s just a lot more fussin’ with my boy and it pisses me off, even though I know they are doing as they are told and taking care of him. My rock star sister in law is now a CNA, on her way to becoming a certified nurse. She has worked her tale off achieving this all while managing an extremely busy household with 3 kids, volunteering ALL THE TIME, and well, to be honest, managing her fourth child known as my brother, Uncle Matt. Matt would agree. I kept thinking if only that was Aunt Kimberly taking care of Luke! I am so very proud of her following her dreams and gifts. She has the softest most giving heart. I won the lottery with her. I remind my brother often, even though he doesn’t need reminding.

Luke spiked a fever again yesterday late afternoon. We got him to sit up and he held the ibuprofen pills and water in his hands for a long time. Puke bag close by. I kept gently encouraging him to go for it. One little sip of water and 4 pills and he will feel much better. He turned his head, eyes closed, and said “I’m trying to find some courage.” He took the pills and it broke his fever.

During BEEP citytime last night Luke spiked another fever. That was at 4:39 am this morning. Blood cultures are running, again (they take 36 hours) and once again trying to get more ibuprofen down him. He has Tylenol for break-through if needed. He still has platelets so he can take ibuprofen but in a couple of days he will only be able to have tylenol. I look at his little table and there are 4 little ibuprofen for him to take and then 2 tylenol pills. I ask the nurse if the Tylenol is still for break through. Yes, yes it is. I kindly ask if they are for break through then why are you asking him to take them all together? I also hand her the Tylenol back and say, “when he does Tylenol he does IV Tylenol. It is more effective for him. We get push back every single time because IV Tylenol is so expensive, but I do not care what it cost.” She agrees but now we have to wait for doc to prescribe IV form and wait on pharmacy. In the meantime Luke does try to take the ibuprofen pills but is unable to without throwing up. I walk my discombobulated self to the nurses station (45 minutes after having the IV Tylenol discussion) and tell his nurse ibuprofen isn’t going down right now, we need the IV asap. Luke is still burning up at this point. I grab my blanket and hop in the reclining chair I have situated by his bed. The chair is turned around so if Luke opens his eyes, he sees his stalker mama right there. I hold his ankle because when I recline my chair, I can’t reach his hand. Even his ankle is HOT. Once the IV Tylenol arrives and finishes going into him, I crawl back in bed. His fever is starting to go down. I sleep HARD from 6-9 am when I wake up to a BEEP.

I went to bed with wet hair. Good news is I washed my hair last night. Upon washing my hands this morning I look into the mirror and I look like Cyndi Lauper on crack. I don’t think Cyndi Lauper ever took crack but perhaps I should. I’m joking.

If you have read all of this, I’m sorry. It’s more of a rant than anything. Writing helps me process. I have discovered it is a therapy for me. Today is a new day and it will be a good day because I will make the choice to have a good day. Together, we will get through this.

Morgan is coming today! YAY! Morgan medicine is the best medicine! Even if Luke opens his eyes once and sees her, it will help him tremendously. It helps me too! I also know it is excruciating for those that love Luke so much, to be away from him during this time. It is a helpless feeling. I know it will help Morgan to see our boy. She is a rock. Please remember, your constant love, support, prayers, and uplifting cards, quotes, etc. help in a MASSIVE way. Keep ’em comin!

Buckets of BEEPS,

Suxanne