Tuesday, June 26, 2012

In the movie Happy Feet Two, Bill Krill tells his buddy Will Krill that he fears the worst. Will replies, “I do too, Bill, because fearing the best is a waste of time.” While I was away at college, my parents and sister had a car accident. My dad suffered a bloody hand from bracing on the steering wheel and then punching through the glass. My sister had some bruising and pain in her back from flying into the floorboard of the backseat. My mother broke her ring finger on her right hand where she braced herself on the dashboard and had the finger curled up underneath her hand. It crunched it up. She had a couple of surgeries, and therapy, but all to no avail. That finger didn’t work anymore. Not only is it crooked from the hack-job hick surgeon, but it does not bend, and she has no feeling in it at least on the most immediate layers of skin. I remember, before she was use to it, sometimes when she held the handle of a skillet that finger would stick out and even rest on the hot skillet or eye of the stove. She wouldn’t notice until a tough blister lit it up. Until she felt the pain, she didn’t know to change her position or change how she was doing something, she didn’t even know she was being hurt until she finally felt the pain burn through the first few layers of skin. Pain is an essential part of a healthy life. Without pain, we wouldn’t know when we were hurt and needed help, or we wouldn’t know when to move away from harmful stimuli. God created pain as our own personal alarm system. Pain also makes an impression in one’s memory. Some kids only learn from pain, like when something is hot. It wasn’t enough for me to tell a one-year-old Hannah Grace that "this water is hot." She had to touch it to know, first, what the word “hot” means, and, secondly, to believe me when I told her something. We learn from pain, and it helps direct or detour our actions. It teaches us a lesson. Eli is doing fair, that’s about the best way I can describe it, I guess. We are out of the ICU, but he screamed and cried all day yesterday, which is not an exaggeration. He has a low heart rate today and they can’t get his potassium count stabilized, plus his electrolytes are all screwy. Those things separately are no red flag, but together could mean that he has pressure in his brain = shunt. So, they did a CAT and sure enough that shunt is the bane of our brain. It is overshunting again and he has fluid built up, but with his programmable shunt valve that was installed at his last surgery, they have dialed it back using a magnet tool. So, we will stay another night to see if it affects his heart rate and potassium and electrolytes. Then we will see the neurosurgeon on Thursday and go from there. In the mean time, he had some sudden stomach cramps for which the nurse and I decided to give him nausea meds, after he had Benadryl in prep for the transplant. Then he just dropped asleep. Well, his vitals started skirting the edge of low, and he had two doctors, a nurse practitioner, and four nurses standing over him watching his numbers. It was a little unsettling, and then they hung out while he had the transplant. He slept for a while, getting up once, and he really, really needed some sleep. He hasn’t had any for any significant length of time for days. They did an EKG which just showed them that, yes, his heart rate was low, so they plan an echocardiogram, tomorrow. They just can’t seem to get his potassium to go up, and they have given him straight potassium over and over, and the number just doesn’t seem to budge. Potassium controls our muscles and the ability of our muscles to work. The heart is a muscle, and is not working so well with the low level of potassium. And, then somehow the pressure on the brain figures into that as well, but I can only follow so much without a degree in nursing. They were trying to “train” me on giving meds via his line at the same time all of this is going on. “Really, right now, we have to do this?” So, a little bit of an overload. In review:  First, Eli came in for chemo, which happened with the usual side effects and horrors that go with it of vomiting, diarrhea, etc. Secondly, he developed a fever, which they treat immediately like an infection. They believe now that the sample may have been tainted and the fevers were just normal reactions to the chemo, but I am not sure if we will ever know any of that for sure. They might be able to determine the exact bug then they will know. Does it matter? I’m not sure it does. They will continue to treat it like it was an infection and he will receive antibiotics for two weeks. Although they have told me he is so far no longer in danger of going septic. (Praise, the Lord, and thank him for the doctors and nurses that are proactive.) Thirdly, he had severe allergic reactions to the antibiotics for the suspected infection. Fourth, it has been discovered that his shunt is putting pressure on his brain, dropping his blood pressure, screwing up his system in general and possible giving him extreme mood swings. Fifthly, his potassium level is not responding to efforts to raise it and stabilize his heart rate. So, that is where we are at tonight. I will stay with him tonight and Vic will keep the other three at our new cabin home. Even though Eli’s ANC count is great right now, my highest paid helper stayed yesterday to help me clean the Target House apartment after we had stayed there so it would be ready for Eli to come back. Hanging out is great, those of you that know me, know that I can chat it up with the best, but this is no vacation and Melissa was here to work and put my mind at ease concerning all things not Eli. So, Vic will have his first cabin experience with the bullfrogs at the bedroom window and the airplanes taking off all night. Plus, the three little piggies could only be described as wild last night up in their little loft. The mattresses are on the ground, and they wrestled and laughed for about two hours past bedtime. And, yes, I let them even though I have stressed to them over and over that we are not on vacation. Back to my thoughts on pain: There is actually a rare disease called Congenital Insensitivity to Pain (CIP), also known as congenital analgesia. This is not from an acute injury, like my mom had, but a disease with which one is born. People with it can feel incidental touch and temperature, but can’t feel the pain associated with for example biting their tongue, or jumping off a roof and fracturing their legs. I think sometimes we kind of develop CIP figuratively living with such an abundance of earthly blessings. It’s hard to recognize when we are hurting spiritually, or when we are weak, or when we need help. We have access to anything we want on this earth, we may have to work for it, nevertheless we may have it. We are comfortable in our earthly lives and don’t realize that our spiritual lives are hurting or need help. Until we have felt “pain”, as in a struggle, tension, tragedy or deprivation in our lives, it is tough to see what we really need or need to change to make the “pain” go away or heal that which is broken. The picture I’m sharing tonight is of Eli today. He has been incredibly fussy, but stopped to play Super Mario on the Wii. He looks better, and he does feel better even though he is fussy. He has walked around, even taken two very small nibbles of a pizza. I’m sorry that I was so long getting out an update. I was too tired to finish it last night and thought I'd do it this morning. Then Vic called me about 630 hours to ask that we swap because the night was rough. So, I thought I'd write it when I got to the hospital, and you can imagine how smoothly that went. I need to learn to just hit the bullets, but I know that I'm so long-worded. Plus, things kept changing. I would write something, then a nurse or doctor would come in and I would need to change it. Then someone else, or Eli would need something. But, I check the Eli sites constantly through the day because your comments are encouraging and I appreciate so much your interest and effort in lifting Eli in prayer. Persistence and consistence. Thank you.


  1. Praying....every day and every time......using your posts and words to be even more specific in our prayers......wish we could do more. P.S. All of us here in "Praying for Eli" check the site several times a day too......

  2. Every morning when I get up I check for an update on Eli. I am so sorry he is having complications. I am encouraged in many ways from reading your posts . It reminds me of the time not so long ago when we were in the midst of the battle with my niece . She to was allergic to some of the antibiotics, spiked fevers & other scary complications but she endured & today is a force to be reckoned with. I hope & pray for strength for Eli and all of you.


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