I have a great desire to get back into writing. It’s been a challenge. Ever since our winter admit, Gregory has acquired my circadian rhythms. I’m lucky if he’s asleep by 12:00. I’ve lost those few hours, while he’s sleeping, to bleed into the interwebs. I’ve also been trying to grab sleep, restore. It’s still interrupted, night time fluids through his G Tube, diaper changes. I’m also relishing this time that we have together. I know that once we get HomeHome, we will have several weeks of chaos and adjustment. I’ve been spending a great deal of my time reading, catching up on movies and KNITTING! I’ve finished more projects since the middle of February than the entire 12 months before. I have a little room in my brain for new projects and skills. I’m terribly addicted to the craft. A girlfriend of mine has a blog entitled “Itchy Fingers”. That is exactly what it’s like. My fingers itch for the sticks ‘n string. I’ve also discovered the absolute divinity of hand knit socks.Since the beginning of 2010, I’ve also been working through some physical and mental stuff. In March, it all came to a climax. (Ha, ha, you’ll get it in a minute.) I’ve been living so long on stress and anxiety. FEAR. Frustration, exhaustion and isolation. The physical side effects have been increasing. I’ve slept, tried to sleep, napped, restlessly turned on more sleep surfaces than I’d like to recount. I carry my stress in my shoulders, neck and the base of my scalp. Lots of tension pain, migraines, dull continuous headaches. Then…….. (Potential “Too Much Information” ahead. If sex talk makes you uncomfortable, please skip ahead.) In March I started having brain exploding, head splitting, instant migraines at the time of orgasm. I’m talking the worst headache pain I have ever experienced. So fast. They remain with me for 24 hours, too. It took three occurrences for me to figure out that something needed to be done. I figured they were tension, stress and anxiety induced. I surrendered my pride and headed to the doc for some mental health. Or as a good friend calls it, “Better living through chemistry.” I started Zoloft the middle of April. I noticed relief, almost immediately. The only draw back is that I felt dull, vacant and blah. For the short term, it’s worth it. The last few weeks, I have begun to feel like I’m coming out of it. Starting to feel a little better. I expect to remain taking it until we have returned HomeHome and had several weeks to acclimate. I’m grateful for not having to consume so much Tylenol and Excedrin. I can’t take ibuprofen or Aleve. It’s nice to not be in constant pain. It’s also nice to not have Coital Celphalgia! Now. About Gregory. We were discharged, back to the Water Retreat, on Monday. May 17. His blood cultures have remained negative for the Gram Negative blood infection. We left with IV antibiotics. Levaquin, an hour long infusion, twice a day. Totally manageable. Little did I realize, at the time, that last a week ago Wednesday, Gregory was experiencing Septic Shock. I knew it was serious, I just didn’t realize how serious. I also think it was a bit of “Eh, what’s a little septic shock compared to everything else he’s been through.” This experience has certainly altered my perspective. After returning to the Oncology Unit on Thursday, the pain set in. I don’t know it it’s Gregory’s GVH or the fragility of his body or the fact that this bacteria is really bad, but the headaches, belly aches and butt pain set in. Hard and fast. We had to use IV Fentanyl for pain relief. It does a great job, but doesn’t last for very long. He received two doses Thursday night and one Friday morning. As I’ve mentioned before, Gregory has not sat’d (Oxygen Saturation) over 92 for several weeks. Thursday he dropped to 88. He started blow-by oxygen. They turn on the oxygen and set the tube near his face and the oxygen “blows by”. It brought it back up to his “normal” 92 range. Occasionally hitting a 95. (normal is 99-100) Thursday night, Friday night and Saturday night he did the same thing. Sat’ing in the high 80’s, blow-by oxygen. He did have his chest CT on Wednesday morning and the only thing it revealed was pulmonary edema. Fluid in his lungs. Mild. There were no signs of Lung GVH, but I’m not ruling that out as a culprit, yet. We aren’t sure of the cause of the fluid in his lungs. It very well could be related to his blood infection. During the height of his infection, his body quit producing urine. He was retaining fluids. We used Lasix to flush his system. Still no help for his oxygen. This infection to a real number to his marrow. His platelets and red cells took a hit. His white count soared. Sunday his hematocrit hit 22. (number of red cells in his blood, these cells carry oxygen.) It was decided that Gregory could use some help. It would take too long for his cells to come back on his own and the extra red cells would help with the oxygen desaturation. He received a red cell transfusion on Sunday. (he also received Lasix, after the blood, to flush fluids) Sure enough, it did the trick. He did not desat Sunday night and his spirits were better. Monday we got the all clear to check out. He still is in the low 90’s range, though. We will do a repeat CT in a few weeks, unless he gets one when we go for his one year follow up. We leave in just over two weeks. So exciting. Something else that’s strangely exciting. I haven’t mentioned it much, but Gregory’s central line has been an absolute pain in the neck. We cannot use it to draw blood without using TPA, which breaks up the clots/sheaths that form at the entrance of his line. We got the go ahead to have a subcutaneous port placed, after we get back from Seattle. It’s scheduled for Thursday, July 1. Why is this exciting? Gregory’s Hickman is covered with a dressing. The lumens (the ends of the line) and his dressing cannot get wet. Bathing is a chore and a half. Gregory has not had a real bath since February of 2009. He has not had the pleasure of splashing water, bubbles and tub toys. Bath time is quick, down and dirty. “Get ‘er done.” I’m looking forward to leisurely bathing and no more weekly dressing changes. It does mean that his blood draws will require a poke, but with the use of skin numbing cream, I’ve been reassured that it’s fairly painless and quick. The benefits far outweigh the brief pain. This last month has also been filled with really crappy news.
- A local family, who’s daughter completed treatment for ALL a year ago, their other daughter was just diagnosed with the same cancer. Anna & Madeline
- A fellow JMML kiddo, Cameron, had his third transplant since March of this year. I love this family to pieces.
- Another local family, who’s daughter Makiah needs a new liver. Liver cancer, you suck.
- A fellow Seattle Children’s family……… Rhema just relapsed with DSRCT.
There have been a few deaths, families struggling through treatment, families learning to live post treatment. It’s never ending.I intended to write about our PICU experience. The memories are starting to lose their clarity. The PICU is certainly another world. The Hem/Onc unit in Spokane is so small, compared to Seattle. It’s also very plush. When we returned from Seattle and had our first post-Seattle admit, the quietness of the unit was a little unnerving. Stepping into the PICU brought that Seattle feeling back. It didn’t scare me or make me uncomfortable. I’ve been living in hospitals for too long. I was able to stay with Gregory and sleep in his room. As longs as the kids are not on a ventilator, ONE parent can sleep with them. While Gregory’s blood pressure was better through the night, he was still really sick. They weaned the Dopamine that night and he spiked another “chilly” fever. Around the time that he was to receive his nighttime meds, the unit’s vibe changed. Dramatically. The rooms are set up on a perimeter around the nursing station. While patiently waiting for his meds, I glanced across the way. On the other side of the unit. This is where all the nursing staff was. I could only see the right hand third of the room. Which included the monitor for all the equipment that was attached to the child. I have not idea if it was a girl or a boy. Infant, young child, adolescent. The only thing I could see was the constant rotation of nurses, taking a turn performing chest compressions. The monitor, blinking an angry red. Turn after turn of the nurses. From the time that I noticed what was going on, somewhere between 30 and 45 minutes passed before the CPR stopped. They were not able to save this child. It was not what I had imagined in my mind. There was no loud noises. No screaming monitors. No frantic movements. It was quiet, controlled. I expected wailing from the family. There was none. It was sad, quiet. I have no words for how it made me feel or how it makes me feel, now. I feel like I “witnessed” something. With respect, awe and reverence. As this was happening, I was thinking about my ability to do that as an RN. There are three areas I’m really interested in working. Pediatric Oncology, PICU and NICU. My interest has not changed, it’s only increased. These nurses are there for some of the hardest things that life throws at us. They work through it with efficiency, competency and cooperation. It was a well choreographed dance. My desire to get my RN has not changed. Through all of this, we have had something else thrown at our family. I haven’t mentioned it yet, out of respect to my parents. I’m mentioning it now, simply because they (we) need some healing vibes. My dad has not been feeling too great. He has a family history of high cholesterol and heart attacks. He has high cholesterol. He works a physical job. The last year or so of stress has not been kind to him. He went in for a check up a few weeks ago, further testing this past Tuesday. On Monday he is have Triple Bypass Surgery. Regardless of family history, it’s come as quite a shock. Dad is in excellent physical health. It’s going to be a long recovery. He’s not one to sit quietly and heal. For anyone who is reading this and wants to be at the hospital……….. please don’t visit Monday or Tuesday. Please let Mom and Dad have their time and privacy. If you need further information, please drop me a line and I’ll get back to you. Please keep Dad and Mom in your thoughts next week. Especially Monday and Tuesday. Gregory goes back for Labs and Exam on Monday. He’s been feeling great. Very active and happy! This is an extremely LOOOOOOONG entry. Thanks for hanging with us, hanging on and hanging in. Much love to every last one of you. More later. Gotta jet. PS ~ For posterity, while Gregory was going through the worst of his infection he was receiving 30mg of hydrocortisone everyM 8 hours. He also received IVIgG on Monday the 17th. His IgG was 355.