Last Meal (Project 365/2010)

When I got to the hospital this morning I was told Cameron would have to stay another day. As all the doctors made their rounds, we were told Cameron could come home. It was EXACTLY what he wanted to hear. He was ready to leave the day before, and the night he was admitted (he IS his Mama's son). His discharge came right at lunch time, and the nurse asked him if he wanted to eat lunch at the hospital or home. He jumped at the chance to eat one last hospital meal, as I must admit, LLUCH's food really is like no other hospital's food I've ever had. It's pretty darn good. We're home now and adjusting to a strict week ahead. It looks like we have to wait a month before restarting the insulin pump. Devastating news for both Cameron and I.

Sara (Project 365/2010)

Cameron going into DKA happened at THE absolute worst time. My cousin Sara, Mandelyn's Mommia, is here on a visit. We haven't seen her in almost 2 years. She moved right after Cameron turned 9, and before his diabetes diagnosis, and she missed Peyton's first birthday. Fortunately, Cameron and I went over to my Aunt and Uncle's Friday night, after pump training, and she got to see Cameron then. However, we had tonight set up for a big family dinner at my house, and I had a few surprises set up for her (like her favorite foods and my BFF and family as a surprise). As soon as Cameron was admitted into the hospital, all I could think about was how was Sara going to see Dylan and Peyton. Cameron assured me that he was fine, I could leave early, and spend the evening with Sara. So I did. I left the hospital around 5, home by 6, and my Aunt (PatPam) and Sara came over. I NEEDED the laughs, I NEEDED the relaxation, and I NEEDED that time with Sara. I absolutely LOVED watching Sara and Peyton playing, but as always, it was bittersweet because we were missing a girl. This time of year is always the hardest (Mandelyn would be turning 7 in a couple of days), and I always envision Mande showing Peyton the ropes.

Cameron called to tell us they moved him to the regular Peds floor, and that his nurse ROCKED. She better had, otherwise I was getting in my car and heading to the hospital. We passed the phone around and he got to talk to everyone. Then we put him on speaker phone and he told us he loved us and goodnight. Sara and PatPam (nicknamed so by Cameron, who couldn't say Auntie Pam, so he called her PatPam, which always cracked me up because it sounded like Batman!) stayed until almost 11, and even though I was emotionally drained, my body kept going like that darn energizer bunny. So I'm off to pick up my niece, Allie, and see if we can catch the midnight showing of Eclipse. hehehe

Mama Bear

I originally was going to title this Toe to Toe, or No. She. Didn't. LOL Alas, Mama Bear seemed only appropriate.

Cameron was moved right before shift change. Our (day) nurse came in, got Cameron all hooked up, and took his blood sugar (which is to be checked every hour on the hour). She said goodbye and off she went. Then Cameron's doctor came in and I saw the 2 (night) nurses at the nurse station directly outside of Cameron's door. After the doctor left I waited for Cameron's night nurse to come in, introduce her/himself (because there was one female and one male nurse at the station), and then I would get ready to come home. Alas, no nurse.

Cameron was beginning to feel pukey again and have some abdominal pain, so I went to the nurses station to see about getting him some more medicine. Cherry introduced herself as Cameron's nurse. You know those senses that take over? They were already tingling. She was sitting there, just sitting there, doing nothing. Cherry told me he couldn't have more medicine for another 3 hours, but would talk to the doctor about maybe giving him something else. Just then Cameron's heart monitor alarm went off. She came in, checked it, punched in whatever needed to be punched and went back out. No, Hi Cameron, I'm Cherry. NOTHING.

A few minutes later Cameron's IV alarm went off saying he had an occulusion. She came back in, from where she was sitting, checked his IV, punched in whagtever needed to be punched in, and told Cameron to keep his hand a certain way so the occlusion wouldn't happen again.

The heart monitor sounded again 10 minutes later. She came in and silenced it. REALLY? What if it WAS an issue? I didn't say anything, and she went back out to sit where she was sitting.

No joke, just a few minutes later Cameron's IV alarm went off again saying he had an occlusion. She came back in, checked his IV, punched in whatever needed to be punched in, and told Cameron to keep his hand a certain way so the occlusion wouldn't happen again. Not another few minutes later the same alarm went off again and Cameron hadn't moved his hand. Cherry came in, grabbed Cameron's hand and arm, angled it at the most awkward of angles and said, "Cameron if you can't keep your hand like this, I have a board that will do it for you!" DANGER! DANGER! Spidey senses were on overdrive.

Cherry was up anyway, so she decided to do Cameron's 8 pm blood sugar check. She gathered her supplies, cotton ball, blood glucose meter, strips and when she went to scan his ID bravelet, he wasn't wearing it because SHE hadn't retreived it from his file to put it on him. (Note the day nurse just punched in his ID number, which, honestly, super big hassle because that number is huge.) Cherry scanned the bracelt, but didn't put it on Camerno, and threw it on the table. Cameron asked Cherry if he could poke his finger and she said, "Sure. Just don't move that hand." as she pointed to the arm that kept sounding occlusion. Hmmmmmm...Cameron, did you pick that up? He didn't.

She lays all her supplies out on Cameron's bed and Cameron says, "I need an alcohol wipe."

Cherry responds, "We don't use alcohol wipes."

WHAT? Okay, so when Cameron was first diagnosed, we were taught to use antibacterial soap. I could buy stock in it we have so much. We religiously use it, and Cameron washes his hands before taking his blood sugar. HOWEVER ...

I said, "What? You don't use alcohol wipes? We've been here since 2 pm, he's had his blood drawn every hour, and every nurse has wiped his finger with an alcohol wipe. Clearly you can't expect him to get out of this bed, all tied up, and wash his hands at the sink?"

Cherry reached for an alcohol wipe from her scrub top and threw it on the bed. I. Stood. Straight. Up. and behind her. She was shorter than me, which is saying a lot because I'm pretty short, so I could see over her shoulder very clearly.

Cherry opened the alcohol wipe and handed it to Cameron. He proceeds to take said alcohol wipe and rub it inbetween 2 fingers, not ever using his hand that kept sounding the occlusion. Are you with me so far? He used his fingers to rub the alcohol wipe between them. Cherry then hands him the lancet (the device that pokes his finger) and Cameron says, "I can't do this one handed." DING DING DING!

Cherry says, "I'll have to do it then." and takes the lancet from Cameron.

Cherry asks, "Which finger?" Cameron shows her which finger to use and Cherry proceeds to put the lancet in the middle of his finger.

Lesson #2 when Cameron was first diagnosed. You NEVER poke your finger in the middle where all your nerves are. You poke on the sides of your finger.

Cameron hollers, "NOT THERE!" Cherry huffs. Cameron explained calmly, "You can't poke in the middle of the finger that is where my nerves are and it hurts."

Side note: Cameron had already been poked in the middle of the finger today from another nurse, while Cameron wasn't paying attention and dry heaving.

Cherry stomped her foot sideways, huffed, and began to berate my son about how she knows where to poke for a blood draw. I interveined.

Composed, more composed than I expected, I explained, "Look, he's frustrated. I'm frustrated. YOU don't get to be frustrated. (I pointed to Cameron) This child is 1 of 3 and my entire world. He is 10 years old, with a disease no child should have to endure, and the last thing he wants to do is spend the night in a hospital, hooked up to a bunch of monitors, poked and prodded. He didn't ask to get sick. Where is your compassion? This is a PICU floor."

Cherry turned her ENTIRE body and moved toe to toe with me. My ENTIRE body tightened and ...

I. Lost. My. Mind. (a little of my religion too)

I screamed, at a decible I had NEVER imagined my voice could reach, "GET OUT OF THIS ROOM RIGHT NOW." I was like a banchee, and it scared the crap out of me, because that voice was my mother'segg donor's.

Cherry leaned in to me, almost nose to nose. I don't know why she didn't say anything, but Thank. God. She. Didn't. I would have been arrested.

Feeling like I was back in control of myself, I opened my mouth, and scared the crap out of myself for a second time, as my voice was even higher, when I said, "NOW!"

Cherry paused, I am sure she wanted so badly to say something, but then exited the room. I became a puddle of tears. Cameron had seen me at my absolute worse, and don't think I hadn't seen the reaction on his face to my screaming.

Just moments after Cherry exited Cameron's room, the male nurse came running and asked, "Is there anything I can help you with?"

I was shaking, crying, heart palpiatting, and said, "You can keep her out of this room."

The charge nurse came in shortly after. I apologized for my behavior. Let's fcace it, I was on a PICU floor, and the very last thing I would want to do was disturb another patient. I told them EVERYTHING that had happened in the last 75 minutes. The male nurse took a look at Cameron's heart monitor, and fixed it. In less than 15 minutes, Cameron's occlusion was fixed as well. Cherry would have just needed to take out 15 minutes of her sitting on my butt time to fix everything that was putting her in a bad mood that night. I told the charge nurse that I could not leave Cameron in Cherry's care, and that I understood this was a PICU floor with nurse patient ratios, but I wanted Cameron moved. They moved him just a few minutes later.

The charge nurse asked to see our ID bracelets, and ... we weren't wearing them because Cherry hadn't given them to us. I apologized over and over and I apologized again to Amber, his new night nurse. Do you know what Amber told me? "I wish more parents stood up for their patient rights like you." WHAT? WOW!

Do you know what Cameron asked Amber? "She won't come in here and harm me tonight will she?" OMG! My son, the least of his worries, should be of some renegade nurse messing with him. Amber and I calmed him down and explained how that couldn't happen. After Amber left I told Cameron if Cherry darkened his door with anything other than an apology, to scream just like I did. :)

Cameron told me I scared him. I told Cameron I scared myself, but that is what a Mother's love is like. I told him I was a Mama Bear protecting her cub.

When I left the hospital there was road constuction on I-15 and I was all kinds of backwards. I was on the phone with Hubby and the events of the night were still with me, that I was screaming in the phone because I was lost. Finally, when I hit the bed, I laid down to rest my eyes, and my heart beat was irregular. My body was still tight, and I praised God for using on my voice and not my hands.

When I woke up ... I felt good. I felt right. I am ashamed for my actions, but in my heart and soul believe I was right in my response to Cherry the nurse. I believe that if I had seen her acting that way to another patient, I would have interviened by reporting it. Cherry has absolutely no business working on a Peds floor, especially PICU. I reported her.

DKA (Project 365/2010)

I knew what it was this time, but it was even scarier to watch. I knew it could happen quickly (in as little as 4 hours), but I had no idea just how quick it was. Cameron got up this morning and looked terrible. In hindsight he was already in DKA, short for Diabetic Ketoacidosis. Hindsight is a pain, isn't it. His numbers were in the 400-500's. He was dropping ketones, but honestly, we thought it was because he hadn't taken his full dose of Lantus (slow-acting insulin) the night before he started insulin in his pump. We did the protocol, gave correction insulin doses, drank water, checked every hour, and by 11 am I knew he was going to the hospital. I called his endocrinologist, but our nurse wasn't there. The one on the phone was a terrible stand-in. She told me to take Cameron to the nearest hospital. I took him to St. Mary's, where the triage nurses got pissy at me about how I knew he was in DKA. They took his blood (467) and took us straight back...where we sat for 2 hours without seeing a soul. My son was in such pain, abdominal pain is a symptom of DKA. He was crying and NOTHING was being done. NO IV! Then. I. Heard. It. A nurse told another nurse, "It's not like we can do anything for a DKA kid anyway." WTH? Are you freaking kidding me? You can't? You can't put an IV in him and start flushing his system? You can't put him in an ambulance and send him down to Loma Linda where they CAN treat him? Ah, hell no. I told Cameron to get up and we walked out (15 minutes later a doctor from St. Mary's ER called my house to see where Cameron was).

I put Cameron in the car and we drove down the hill to Loma Linda. During our drive, another symptom of DKA reared it's ugly head, vomiting. I was ill prepared for this, and thus, my backseat floorboard caught it all (and in June heat it baked while we were in the hospital). We walked into the hospital and he went straight for the trash can. I asked the triage nurse if she had a bucket. I ran to Cameron, sat him down, bucket in hand and signed Cameron in. Within 5 minutes (NO EXAGGERATION) he was tagged and being wheeled back into the Peds ER. Within 15 minutes an IV was started, his blood was drawn, and they gave him something to stop the vomiting. About 45 minutes after that we got word he was in DKA. NO SHOCK THERE! We were told he was being admitted, and originally they thought he would go to the regular floor. The nurses hooked him up with a video game system, and a Star Wars game ... and all was right in Cameron's world.

When the second IV came into play, Cameron wasn't happy about it, but Mr. Independent took it like I knew he would. He was frustrated. Seriously, 10 years old and 2 hospitalizations in less than 2 years, I'd be frustrated too. Cheryl, our nurse, drew more blood, and took an arterial blood gas. These results proved his acid and bicarbonate levels were serious enough that they would need to send him to the PICU. Exactly where I didn't want him to go.

I left the room to make some phone calls after the second IV was in and when I returned Cameron said he saw one of the doctor's from diabetic camp. A little while later he came back in and I instantly recognized him. When he introduced himself, Vance, I told him I had a picture of him, but no name. Vance asked if Cameron was going to camp this year, and I told him we were still lacking funding. He is a SUPER great guy and continued to check on us until we were moved.

Wouldn't you know it, right before shift change Cameron was moved upstairs. He was in an ornery mood, when his blood sugar is elevated his mood swings are TERRIBLE. I had to keep telling him to be respectful, but it was clear my son was NOT HAPPY TO BE THERE! His nurse, who we saw for maybe 10 minutes, came in and got him all hooked up and did another blood sugar check on him, his number was going down. I knew I had to come home tonight (I'm still passing a kidney stone), but wanted to meet the night nurse and make sure Cameron was comfortable. Thank God I stayed. Our night nurse, Cherry, turned me into a person I did not recognize, as well as a Mama who scared her son (Mama Bear post).

After Cameron was MOVED from Cherry's care, I made sure he was okay with my leaving and promised to be back up first thing in the morning. He was tired, and seriously needed his rest anyway. I will call his nurse periodically in the middle of the night to check on him.

We don't know how long Cameron will be in the hospital. We don't know the status of his insulin pump (except that it's still attached and the alarm keeps sounding letting us know it's on suspend). Vance said they might restart it in the hospital to monitor it. Sounds like a plan to me.

Menu Plan Monday

Sunday ~ Crunchy Parmesan Chicken Tenders, Sweet Potato Fries, & The Lady's Coleslaw

Monday ~ TV Dinner Night (Late afternoon appointment - no time for cooking).

Tuesday ~ Tiffany's Taco Tuesday w/ Sara, PatPam, & Uncle Mike! Dessert will be Lemon Cake w/ Lemon Frosting and Brownies (I'm making all of Sara's favorites).

Wednesday ~ Spaghetti w/ Marinara, Salad, & Garlic Buns

Thursday ~ Chicken, Roasted Mashed Red Potatoes, Corn on the Cob & Cheddar Bay Biscuits

Friday ~ Leftover Night

Saturday ~ Soup & Sammie

What's on Your Nightstand ~ June

My focus this month has been on everything insulin pump. Along with reading the manual, and going through the 2 workbooks, Cameron and I have taken a pump class online. Serious studying on a serious device. One wrong move and Cameron's health is jeopardized. During my food poisoning battle, and subsequent hospital days, I got a lot of Living Dead in Dallas read. I'm looking forward to having it off my nightstand next month. Of course I put it aside when I downloaded The Short Second Life of Bree Tanner: An Eclipse Novella by Stephenie Meyer to my nook ... just in time for Eclipse next week. Squee!

Priceless (Project 365/2010)

Cameron's shipment came today! UPS delivered 2 boxes and I couldn't wait for Cameron to come home to look inside. We opted to use Medtronic, the leader in Insulin Pump therapy. I'm so very happy we did, as Cameron was afforded the luxury of getting the latest (released in April) MiniMed Paradigm Revel Pump 523 in BLUE. Couple that with the latest in Infusion sets, we chose the mio Infusion set, which is wonderful for pediatrics, and also in BLUE. PLUS, we were blessed to have been approved for the Guardian REAL-Time Continuous Glucose Monitoring System. Most first time pumpers are not approved for this expensive add-on, which I think is a complete disservice to the pediatric diabetics out there. We are so blessed, as Hubby's insurance covered ALL pump supplies 100%! No out of pocket cost for us. God is GREAT! Every 3 months we will get a new 4 box shipment of supplies (3 months of supplies, but an additional month for extras). The pump itself is under a 4 year warranty, and by legal standards set up by Medtronic (and other pump companies) with the help of insurance, Cameron will automatically receive a new, and upgraded (if there is one) pump every 4 years. The beauty of this is if his older pump is still in good shape, we keep it as a backup. Nice, right?

Our first shipment consisted of the following:

Cost of Insulin Pump: $6,195
Cost of Infusion Sets: $135/a month (x 4)
Cost of CGM Transmitter: $999
Cost of CGM Sensors: $350/a month (x 4)
Cost of Reservoirs: $34.65/a month (x 4)
OneTouch UltraLink: $89.00
CareLink: $59.99
No Out of Pocket to Us: PRICELESS

Now we wait. UGH! We wait for a Pump Trainer to call us and set up (in-home) training on how to use all of this stuff.

Minnie Mouse (Project 365/2010)

During our trip to Disneyland in May, I saw this Minnie Mouse purse. I figured since Peyton loved her Princess purse so much, I'd pick her up this one too. However, when I hit The World of Disney there were none on the shelves. While I waited for a CM to check their back inventory, temptation hit and I picked up a little ensemble to go with the purse. Now all I need to do is find some Minnie Mouse sungwasses and her outfit will be complete.