Okay, this is probably the first controversial topic we'll address, and so I proceed with... delicacy.
Here's what I mean:
 | If your son isn't getting enough fluids and gets dehydrated, you'll go to the ER and they will install an IV for fluids. |
| If your son needs certain medications and the IV is at risk of collapsing, then someone might suggest a PIC-Line. |
| If you need a longer term solution than a PIC-Line, then one might consider general surgery for a port access. |
| If your son develops trouble eating, swallowing, or aspirating, then one might consider an NG-tube (through the nose to the stomach) or a G-tube (through the abdomen to the stomach). |
| If your son develops trouble breathing, then one might consider installing a semi-permanent trach tube via a tracheostomy. |
These are all extremely difficult decisions and are generally done in a context of emergency and an over-abundance of opinions from everyone and his/her neighbors. Especially knowing this, we do not want to add any more grief or difficulty to anyone's life.
If you have already made these decisions and chosen to install any or all of the above, then know that we are not here to judge you and we trust that you have made the best decisions in your circumstances. We would appreciate the same from you.
We, however, based on our own circumstances, have chosen to not use any of the above tubing again. I know that we do not have to justify anything, but we thought that someone might benefit from knowing why we do what we do. Here are our personal reasons:
| In agreement with our health care team, we do not feel that our son is healthy or strong enough to live through a general surgery. Therefore, we will not install either a port access or a G-tube. And, even if he were strong enough, we still would not based on the below. |
| Both of us, as parents, have an over-sensitive gag reflex. Anthony even bit down on and broke his dentist's mirror as a child (when they used to use glass). Based on Jack's trouble with the bottle, we know that Jack shares in our gag reflex. We will not install an NG-tube. |
| Both Katherine and Jack are "hard sticks," meaning that it is very difficult to draw blood or insert tubes into their veins. When we were in the hospital, it took over an hour to insert Jack's PIC-line. When he went in for his last MRI, it took three different anesthesiologists to try twenty-five different locations before they gave up on an IV (once we found out, we were livid that they poked him so many different times and in so many different parts of his body--he still has some of the scars). |
| The last three times we rushed Jack off to the Emergency Room, it was because of dehydration. Jack chose to stop drinking or eating for about 48 hours. We did okay with 24 hours, but by the time we got to hour 40, we panicked and ran to the hospital. After three visits, we realized that since we now have our oxygen tanks, SVN (small volume nebulizer) machine and suction machine at home, the only thing the ER can offer us is an IV for fluids. Mind you, Jack was not unhappy about not eating. In fact, he was quite content to just hang out and fast. We were the ones who were unhappy about him not eating. But, after the nurses and IV-specialist team spent an hour poking him, Jack was now screaming in pain and doing everything he could to pull away. Eventually, he just decide to take the bottle on his own time. In fact, the third time we went to ER, the IV team was so busy we waited three or four hours for them to get to us and Jack decided to start eating just two minutes before they arrived (thank God) and we went home. After that third visit we just said that we didn't feel the ER could offer us anything any more. Since then, Jack has had a couple more periods when he didn't want to eat, but we stayed home (despite our loved ones' protests) and Jack eventually decided to start eating again on his own. We have been a lot less stressed out and Jack's been a lot happier. Okay, truth be told, we still get stressed out, but we don't panic. |
| We definitely want our son to be alive with us as long as possible, but a greater priority for our family has always been on quality of life. We want to do anything possible to keep Jack happy, content, loved, loving, happy, etc. Subjectively, we believe that the above "tubing" options will increase the quantity of Jack's life but--because of Jack's traits (as listed above) and because of Jack's condition--are questionable when it comes to the betterment of the quality of Jack's life. (We acknowledge that this may not be the case for your son.) For example, Jack isn't upset when he chooses not to eat, he just doesn't want to eat. Therefore, we choose to not force him to eat, although we really want him to. |
| Jack's remaining life span will probably be measured in months and not years. If we were to consider some of the above options, we could probably double or triple his life span, which is a monumental change. However, as religious people, we believe that Jack's life is eternal, which means that one, two or three years is inconsequential when compared to eternity. The question comes down to the meaning of life. We believe that Jack's purpose in our lives is to teach us how to love him more and for Jack to learn how to love us more. Our job, therefore, is to learn how to love him more fully. We will do everything we can to keep him healthy and to learn our lesson, but not to keep him alive for the sake of time. Therefore--knowing that he has a terminal disease with no cure--we entrust the length of his life to God and him. No matter how long that is, we will be with him. |
Finally, we make the choices that we do because we believe that after Jack is gone, we want to have no guilt or remorse and to say to ourselves that we did everything we could to be faithful to him, his care and his happiness. In order to do this, we made the above decisions. However, in order for others to do and say this, we acknowledge that they may have to even make the opposite choices. It's never easy, is it?
Again, we do not suggest or insist that anyone believe what we believe or do what we have chosen to do. We simply present our perspective with the hopes that someone might benefit from understanding our choices when they have to make their own. If you choose to do some or all of the above procedure or if you have already, just know that we acknowledge how difficult these decisions are and we wish you all of the best for you and yours.
NOTE: We are not health care professionals and consider the above comments to be personal reflections on choices we made/make. We accept NO liability for your choices. Talk to your own doctors before making a decision or a change to your son's treatments or care.