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October 30, 2007
By Margot | October 30, 2007
Alert: long post today
Yesterday was the MRI and it was the day from hell. Poor Sam. We got up early and he had to be NPO because he was being put to sleep for the scan. The first thing he said was “I’m hungry.” Usually, music to my ears but of course not yesterday. He didn’t want any jello, which he could have had until 7:30 am. Then just as we were about to leave at 8:30am, he wanted the jello which of course he couldn’t have (or so I thought) by then. Ugh. We got to the hospital at 9 for a special TGF beta blood draw that we drew from Sam and Max Mikulak and fed-exed both samples to Dr. Belanger’s lab. Then we went to check in for the scan. It took a long time for them to call us (we got through almost five chapters of the new Magic Treehouse book) and I was wondering why they were so lax about the timing w(hen the scan was at 11:00.  They checked us in at about 10:45, weighed Sam, did blood pressure and I filled out all the paperwork and then the nurse said, Ok. Come back in about an hour and 15 minutes. What!? “Oh yes, says the nurse, the scan is at 12:30, check in time was at 11:00. I still don’t how who screwed that one up -me or the nurse that called me about it but I could swear we had the scan down for 11. Ugh another hour of no eating. So Sam and I decided we’d better make a plan of exactly what he was going to have when he woke up and he said he wanted to go with me to Soup Plantation. It was a date. In the meantime, we zipped over to Toys R Us to kill some time and picked up a few new small transformers for the boys. They were all out of the medium sized Bumblebee (Sam’s favorite guy) but we found a little guy. Tangent - A quick Sam story about the Transformer movie: Neil rented it for the boys who absolutely loved it -  Funny that a literary agent who is currently trying to sell a book called The Sex Violence and Junk Food Diet: What the Media is Feeding Your Kids and What you Can Do About It is actually feeding the diet to her own children.  Anyway, age appropirateness aside, I put Charlie to bed before the movie was over and then when Sam came upstairs I asked him what happened in the end to Sam, the main guy in the movie. Sam said, “Uh, (sigh) he kissed.” as if that ruined the whole movie. It cracked me up. Sam and Joe were watching the movie together a week later (Colleen’s feeding her kids the same diet ;-)) and they said “I like this movie but not the end.” “Yeah, the end is the scary part.” “Yeah, the scary part is the kissing.” and then they cracked up.
Ok. Back to our day from hell story. So, we got back to the hospital in good timing, the guy came to pick us up for the scan about one chapter after we got there. The MRI spot is all the way across the hospital from the waiting room. We then sat down to wait in the MRI waiting room. Two more chapters -we are close to finishing the book at this point and Sam says, “Boy we’ve sure been waiting a lot today in a lot of different places.” Yes, yes we have, buddy.  They finally called Sam for the scan and I held his hand as they put the propofol (sp?) in his line. Just as Sam was closing his eyes the MRI tech said, “Is there any particular spot we are looking at in the leg Mrs. Hutchison?” “The left distal femur.” I answered, “And his ankles.” Then I gave sleeping Sam a kiss and went back out to the waiting room. I picked up the coffee pot in the waiting room and drained the last of the coffee that had probably been sitting there for many many hours into a cup and then into my body. When Sam is NPO Neil and I are NPO and a certain one year old had woken me up at 12am, 2am, 3am, watched two Baby Einstiens at 3am and then walked outside to try and get back to sleep until 5am.  I tried to read some proposals I had brought and ditched those because I couldn’t concentrate. I tried to read some of the Oprah Magazine that I had thinking there would be some uplifting stories in there and then gave up and sat and obsessed about why I told the guy to look at the left distal femur. “Now, would they look particularly closely at that spot and write up some tiny teeny thing that they would have casually glanced at and thought fine had I not alerted them?” Were we going to be given heart failure because they were paying particularly close attention to that spot? Had I jinxed it by saying we had something to look at there?” Of course these are all totally irrational thoughts. You don’t need to tell me that.
A woman came out after about 15 minutes and asked how much Sam weighed. “About 47 to 48 lbs” I answered. “Huh,” she said, “We were right.” Then she walked back into the scan room. So then I sat and obsessed about what was going on back there.
When Sam came out after about an hour and twenty minutes he was still sleeping and Dr. Flynn, the awesome anesthesiologist, told me that they had to put in a lot of propofol (sp?) in him. So much so that Dr. Flynn thought his port wasn’t working. He explained to me that when kids have had a lot of chemo, they tend to metabolize the meds much faster and it takes a lot more to put and/or keep them asleep. So then we went back to the recovery waiting room where I sat outside and Sam was inside and they said they’d call me when he woke up. So, I sat and obsessed until they called me in. Sam was very very woozy but, as he usually does, he kept trying to get up. And, he kept saying that his eye hurt.  They’d taped his eyes closed for the scan. So the nurse and I put some saline in his eye and kept trying to get him to lay back down. “I’m hungry” he kept saying “Let’s go to Soup Plantation.” After he’d had some gatorade and had lay there for about twenty minutes trying to get up, the nurse said we could go. I put our books and papers in a “belongings bag,” picked woozy Sam up and started the long trek accross the hospital back to our car. I finally got to our car, put the books in, settled Sam in, who was still saying that his eye was really hurting, and put some more drops in his eye. As I was about to start the car my cell phone rang. It was the nurse, who was very upset and said that there was a miscommunication between her and Dr. Flynn and that no one had put heparin in Sam’s line. He was de-accessed by now and the nurse said I was going to have to bring him back, put another needle in and put some heparin in his line. “He doesn’t even have any cream on,” I said. “I can get some cream for him, she said.”  “I have LMX in my glove compartment and Press and Seal on my front seat.” I said. I looked at Sam still trying to shake himself awake after having been given enough propofol to put a horse to sleep and he was crankily saying, “Why did you put me to sleep and why does my eye hurt so much?” I wasn’t sure how to break it to him that we had to go back and get another pokey. He was so done. I got out the LMX and opened the back door and Sam looked at it and said, “What?” What are you doing?” “Well, buddy, we have to go back in because the nurse forgot to put heparin in your line.” Sam said no way. He wasn’t going to do it. He wasn’t going back in. He was not going to get another pokey. He was starving and he wanted to go the The Soup Plantation. He started to cry, took the LMX out of my hand and threw it in my face. Frankly, I’d have thrown it in my face too. So, while it’s perfectly acceptable for a seven-year old whose eye hurts a lot, feels like he’s spinning and is facing a second needle in his port to hysterically cry, it’s not really acceptable for his 37 year-old mother to do the same. I was so frustrated. I tearily took some deep breaths told myself to pull it together and find a solution. I called Neil, who didn’t really have a solution and then I called the Hem-onc. clinic which I was actually much closer to than the recovery room and asked if I could take Sam to The Soup Plantation and then come back and have someone at the clinic put heparin in his line. They said as long as we weren’t gone for too long it should be fine. I called back the nurse in the recovery room who was in tears herself by this time, jumped in the car, zoomed down the 163 Freeway, got on the 8 Freeway and got to the restaurant in record time. Sam said he was ok with the solution but his eye was still killing him. I carried Sam to a booth and went through the line to get all the things he liked. Half way down the line I turn to see Sam with one eye closed weaving through the restaurant. I drop the salad tongs and race over to him. “Buddy, what are you doing?” “You’re still woozy.” “I have to go to the bathroom,” he said. We made it through what was breakfast and lunch at 4pm -Sam ate a ton which was great.  I don’t know what the people in Soup Plantation thought of us. We got back to the clinic at about 5pm and our nurses who we love took care of us. Sam had put the LMX on in the car and we had the freezy spray ready. Cat was waiting for us with all the stuff and I breathed a sigh of relief. Chris took one look at his eye and turned off the lights and said he has a cornial abrasion which she gets all the time and that they are extrememly painful. She called the doctor on call who said she couldn’t call anything in without looking at him but that we should go to the emergency room. I thought I might have a heart attack. Chris said that I could get some over-the-counter oinment for it and that the cells in the eye regenerate very quickly and that he sould be better in a couple of hours if he could keep his eye closed.  Have I said enough how much I love our nurses? I think hem/onc. nurses are about the best there are.
We went home and saw Charlie and Andy. I ran and got the ointment, Sam had eye pain for about three hours and then it was much better.  This morning was the first day back to school for San Diego. I was a bit worried but Sam popped right up. He asked me if tomorrow is Halloween. When I said yes, he pumped is fist and said, “Oh Yeah!” He is at school today. His ankles are much worse and I can see that it hurts to walk. They were getting better and then he went ice-skating and they back-slid. I think from all my google searches and Sam’s description of where the pain is, and when it happens that he has achilles tendonitis. It says on the Internet that it causes extreme pain when walking is brought about from activity and gets worse after activity -exactly what Sam says. I’ve gone an bought more in-soles this morning and Kelly, our resident physcial therapist, is going to take a look at him this afternoon. Ortho appt. is next week.
Andy has his Halloween parade today. We just painted his nails black and I’m about to go downstairs and get him ready. He’s so excited. I’ll be sure to put some pics up of all the kids. Sam’s carnival is tomorrow. We carved our pumpkins and Charlie likes to pull the tops off.
Sorry for the long post. I’ll try to edit later. I had to get all this off my chest. Sammy is amazing. I’m not ever going to put him to sleep for another scan again. In tyring to save him some discomfort, I caused much much more. Argh. The nurse called this morning to apologize again. She felt really awful about it and had left a teddy-bear for Sam at the clinic last night. She said she couldn’t believe I have LMX in my glove-compartment. Of course we do.  One more Sam story. We were watching a football movie three weeks ago and they guy in the movie had practially broken his shoulder and wanted to keep playing. The coach made him sit out and said he’d done enough for his team. Sam was outraged. He said. “Why doesn’t the coach let him play? If your body hurts, but you can still play, you play.” I can’t stop thinking about that. Cancer sucks.
I’ll post the MRI report as soon as we get it.
Margot
Topics: Progress Reports | Comments Off on October 30, 2007
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