Wednesday, December 3, 2014
Quality versus Quantity
Quality versus quantity. . . what a complex and sticky little concept. It’s so different from case to case. We’re currently faced with this issue for two of our children. It’s not the first time we’ve faced it, nor the last, but is never easy. Sergio has many things going on that constantly cause us to stop, rethink, and determine if what needs to be done is worth the degradation of his quality of life. Most times it is, sometimes, it’s not. As such, the hospital has been wonderful in coming up with new protocols never tried before just to save us from so many hospitalizations. From drawing cultures and labs at home, to starting emergency interventions and key antibiotic therapy without the need for a trip to the ER and admission to the hospital (provided he is stable and “ok”). We are also looking at Quality v. Quantity issues for Joshua as well. His port has stopped working, he needs a new one. He is developmentally not able to do it while awake. We were incredibly blessed to have our wonderful oncologist go down to interventional radiology and “make a case” for him to get his port in IR under general anesthesia. We’re just awaiting a date. With the new port, we have decided to move his IVIG infusions back home. He wants to try it. This results in some significant changes in who and how he has his port accessed. It also opens the door to trying new interventions for his neurological issues that affect his bladder. This may allow us to circumvent the need for more traditional approaches but will significantly impact quality versus quantity.
Well, we made it through the holiday without an admission. That’s not to say we made it without an infection, just that our new protocol that allows me to begin the same treatment and lab work the ER and hospital do; at home, worked. This prevented another 4 day admission when he began running a fever the day after Thanksgiving.
Sadly we’ve made several more changes to accommodate our young son’s ever changing, and failing organs. Lately it’s his kidneys. I’ve been watching his kidney numbers go up more and more. His BP likewise has begun a steady upward climb. The little boy who had low blood pressure his whole life, now has high blood pressure. We know his kidneys are at fault, but don’t know how or why. . . just like every other thing that goes wrong with him. There are no books that you can read, no websites that condenses his particular constellation of issues into a nice neat article and then delves into the treatment for those issues. Nope, not Sergio.
He is now tethered full time to both hydration and TPN, this means he’s lugging around 6 pounds of pumps, tubing and bags of life sustaining medications. We had to move him from a backpack to a rolling bag (and if you know Sergio, this is not an easy feat!). Last night he had to have repeat doses of morphine because his bottom was so sorry he wouldn’t sit down. It is a side effect of the severe diarrhea that comes with the antibiotic he has to have. So we augment his treatment with pain meds, acid reducing pastes on his poor bottom and we blow dry the skin with a blow dryer. It’s a sight to behold. It’s sad, it’s frustrating and it’s reality. Yet, my baby has NO IDEA that this is bad. He has never known anything else and when It’s over, it’s over. He returns to his potato head stealing, microwave waving, water drenching activities as if he hasn’t a care in the world. He is in the terrible “twos” or “threes” phase right now. Complete with foot stomping, evil eyes, yelling at and door slamming. It’s such a spectacle you can’t help but laugh, which makes him madder if it results in me quarantining him to his bedroom (mind you, this is the worst place in the world for him, as it’s off of the kitchen and bathrrom . . . aka, microwave, tub, sink, dog bowl heaven. And no, morphine does NOT make him sleepy and all dopey, it just makes him feel well enough to act just like himself. J
Joshua has a neurogenic bladder and bowel. This is a result of the first surgery to remove his brain tumor. It was significantly worsened by the epilepsy surgery that further disturbed the areas that have the nerves that control the neurological aspects of bladder and bowel control. As such, he feels like he HAS to go all the time. I mean 20+ times a day. Sometimes, he actually goes. Most times, he can’t. I get frustrated. He gets frustrated with me and doesn’t understand why I get upset. You see, he seizes the most in the bathroom. It’s the least safest place in the house for him, yet it’s where he has to stand the most. I has broken doors, showers, and even a faucet. He has had the shower bar fall on his head causing more issues and he has torn up his side and back up falling against the door jamb and shower door latches. There are treatments but it necessitates having to undergo invasive and very uncomfortable testing which he does not want to go through again. It hurts and it’s always very abnormal. The permanent solution is a stoma in his abdomen that he can use to catheterize himself so he empties his bladder completely, thus eliminating the never ending sense of needing to go. This is where the quality versus quantity comes in. We have opted instead to pursue adding hydration via his port each week to improve actual bladder function. Joshua is not happy about having to have his port accessed for days at a time, but he also agreed it’s better than the testing and if it works, then great. If it doesn’t, then we’ll revisit our options. His original diagnosis of brain tumor and subsequent treatments have taken a terrible toll on his body. He has unrelenting seizures, neurogenic bladder and bowel, cataracts, severe developmental delays, severe hearing loss, osteoporosis, and ADHD. Yet, he happily sits by the fire every night and watches the same re-runs of Disney shows over and over. He is Peter’s shadow and never far from daddy when he’s home. Loves having his finger and toe nails cut. Manages to make it so his hearing aids “don’t work” an awful low despite reassurances from the hearing aid store that they do, in fact, work well.
The rest are doing well. Tray blew away his transplant team when they saw how tall he had gotten. He is now 5’10”. He’s officially taller than me. He is still growing and will be in a size 13 sneaker by winters end. He has been having high blood pressure for a while now and finally the agreed It was time to address it. So he’s started a blood pressure med, though it doesn’t seem to really be a high enough dose, as his pressures are still too high. Will tweak the dose this week. Overall, he looks amazing and feels even better.
Nettie has many aches and pains. Her severe knee infection 2 years ago, set her back almost 10 years in terms of physical abilities. In an effort to lose weight and get back some of the function she has lost, she injured her elbow, causing severe tennis elbow. It’s very painful and though she had instant relief from a cortisone shot, she did not follow instructions to rest the elbow for at least 2 weeks. Instead, because it felt good, she jumped into more exercise than ever. Now she’s hurting badly again. Not sure what else there is to do to help her. L
Cody is doing great, other than taking a very hard fall down our hard wood stairs today. Pretty bad back contusions and elbow bruise, but he’s running around with my rain coat on and my hair dryer (a new and better zombie killing gun says he). He’ll live.
Marriela is in heaven as her Elf on the Shelf, Dennis has returned. For me, that means leaning heavily upon my night nurse to remember to move that dang little guy around. Today I was truly impressed, Dennis was in a hammock, hanging from my dining room light. . . such ingenuity!
Peter and I are tying up this semester of school. I am only 18 credits from my advance certificate of Ed.S (Education Specialist). Sergio is making it very hard for me to contemplate what to do with my new found skills and education, but we’ll work something out. Peter will be starting his internship with Vera House, an organization that works with abused women and children. He will be full time in the spring and upon completion will be ready to work as a Mental Health Counselor. So exciting!!
On December 16th, I will be having surgery on my rotator cuff. I have done the cortisone shots, PT, ice, and heat to no avail. I’m in pain all the time and MY quality of life is severely impacted which then impacts my children and that is not ok. As such, I will have an impingement release, tendon repair and a bone spur removal. I can’t wait!! How said is that!! So Christmas should be fun. Working hard to have the buying and wrapping well underway by that point!
Well, that’s it for now. Merry Christmas to all and a Blessed New Year.