I'm feeling a bit blah about blogging. More people are communicating via
Facebook than reading my blog. Which is good. I started this thing hoping that my friends in GA would be able to keep up with us.
FB sure makes that easy. It's one-stop shopping, the
Wal-Mart Super Center of communication. The dismantling of my blog is under consideration. I'm going to give it some time and thought and see what I want to do. In the meantime . . . a long overdue blog post . . .
We've taken a few trips since I last posted.
PNW was gorgeous. I can definitely understand the "pull" people feel toward the area. Mike would never survive the cold, the rain and the liberals, though. :) I would love the cold and the rain. And I'm much more tolerant of liberalism than my husband. :)
Our last trip was to the Midwest again. Visiting family and going to Cincinnati Children's for Thomas's medical stuff. Thomas got to spend Halloween with his cousins and trick-or-treated in the neighborhood I grew up in. Talk about a trip down memory lane. I even ran into a childhood pal roving through the old 'hood. Good times.
Remember
Thomas's 'flowchart' for his Halloween costume last year? I couldn't talk him into being anything really new this year. I swear the kid is 8 going on 38. The *only* thing he mentioned other than re-vamping last year's costume was wearing all black and being a spy. So I jumped online and started the search for a
trenchcoat and maybe a fedora. He saw me and said "
Nooooooooo. I just want to wear REGULAR black clothes and be a spy." I nixed the idea for safety reasons. I knew he'd have a
hissy about using reflective tape or something so he'd be able to be seen. So, no spy. In the end, we used last year's
jetpack (glad I saved that!), and changed the front. Last year he fell down and could not get up because his 'armor' would not let him bend at the waist. So we found a catcher's chest guard and spray painted it silver. Added some
starburst glitter Christmas ornaments to be "gravity grenades", some duct tape and the letters S.P. and voila -- Space Police costume.
The trip to Cincinnati Children's was more eventful than usual. Long story. We've been taking Thomas there for over 4 years now and feel like old pros when it comes to routine
endoscopies there. We don't really feel anxious about it now. Thomas doesn't get nervous or upset. We've really become comfortable with the whole thing and have come to trust the staff there. So I have to say, we were utterly shocked when something did not go well. It is minor in the grand scheme of things and no lasting harm was done. Here's the e-mail I felt compelled to send to the hospital's Patient Advocates after the incident. I did take the Dr's names out. I don't want my blog coming up if someone
googles them.
Yesterday (Tuesday, October 27, 2009) my son, Thomas, was seen by Dr. "X" for an upper endoscopy in Same Day Surgery and Dr. "Y" was the anesthesiologist. After going over Thomas's history with us, an anesthesia assistant or student (I’m not sure which) named Sean (?) asked Thomas if he would rather be induced by mask or IV and Thomas chose IV. As I discussed with Dr. "Y" in the PACU, if I had been in earshot of the conversation, that would not have happened. From prior experience I know that Thomas's veins are difficult, and prone to "blowing out." I had stepped away from the bedside momentarily (to the section of the room right outside of where the endoscopy takes place, but still inside the doors of the endoscopy room) to get a consent form for research that had accidentally been left in the pre-op room. Though my husband was standing nearby, he could not hear this conversation and did not realize Thomas was being asked this question, or that any decision had been made to do things differently than usual. (Thomas has undergone numerous upper endoscopies at Cincinnati Children's, all with a relatively smooth induction of anesthesia and without incident.) Neither his nor my opinion/input/permission was sought. By the time I returned to the bedside, the IV was being started. It did not go well. Thomas got upset and felt pain when the IV was inserted. It was difficult to get it inserted, but Thomas was "talked through it", being told that it would only hurt for a minute and that it was like "just a bee sting." I regret that I did not stop the induction via IV at this point, but felt torn, thinking that it would be over soon and that Thomas would be "out" in just a moment. The vein blew. Dr. "Y" told the student that the vein had blown, but the student insisted, "No, he's getting it." The propofol was causing him pain and a new IV had to be started after anesthesia was partially induced. At some point, I said "I'm going to step in here and say let's use the mask." The student put a mask on Thomas and said "It's only oxygen." Though Thomas was "out", I could clearly see that he was in physical pain and clearly not completely anesthetized. He moaned, grimaced, pulled his arm away, his entire body stiffened and he lifted his body off of the table as the second IV was started. I understand that "things happen" and I appreciate Dr. "Y" taking the time to come speak with us in the PACU. Upon further reflection on yesterday's events, I find myself still angry about Thomas being caused needless pain. I am also frustrated that I did not get a chance to speak with the student who made the decision to induce via IV. I simply cannot believe that it is Cincinnati Childrens' procedure to ask an 8 year-old, without any parental involvement, to make the decision as to how anesthesia will be induced. Thomas has, thankfully, forgotten the experiences he has had with IV placement prior to yesterday and had no idea what that decision would involve. I know that he does not like the mask and would likely have chosen any alternative offered to that. On previous occasions, I have helped hold him still so that the mask could be held in place. Many times, with great success, the mask has been forgone in favor of holding the anesthesia tube close to his face. What I am getting at is this: though I know that he may not "like" the mask, I know that it causes him no physical pain. Based upon prior experience, I would not have opted for an IV induction. I would have guided Thomas toward choosing to be induced via gas. I feel as though my opportunity to advocate for my child was taken away in yesterday's situation. What I would like to see happen is that today's incident be used as a teaching point to the student (Sean??) in regards to what age it is /is not appropriate for a child to make healthcare decisions without parental input and about making sure parents are at least aware of healthcare decisions their child is being asked to make. So, what say you, people of the
internet? Am I asking too much to think that my 8 year-old should not get to make that kind of a decision without my input?? I was just stunned. And downright pissed!
OTHERWISE, everything went really smoothly as far as the endoscopy goes. Though Thomas did fail his wheat trial rather spectacularly. Dr. X's first words to us in the conference room were "NO MORE WHEAT!" Well, that's pretty emphatic. His esophagus was in bad shape with
exudates & furrowing showing up again. It was so bad that Dr. X said "I'm not even going to call you with the biopsy results. Unless, of course, they are not what I expect. If you don't hear from me by the end of Thursday, just go ahead with our plan." Honestly, it is easier if he fails, that it is a clear failure. No having to continue trials to see what happens. No notion that his next few trials may be colored by continuing a food that is "iffy". So now we wait 6 weeks for his esophagus to have time to heal and then we move on to new food trials. That means that our next trip to Cincinnati will be a ways out. Maybe that will prove to be some
incentive for my parents to come visit.
Dr. X did lay out a plan for the next several food trials. If Thomas passes foods on the next 3 or 4
endoscopies, he should have a pretty healthy dietary variety. And then we'll start moving toward getting rid of his feeding tube. Which is a good thing. But it is also slightly unnerving. Thomas started out life below 3rd percentile in size (preemie). He moved up to around 25
th %
ile in his first year. Then in his 2
nd year, he dropped back to 3rd %
ile because he was so sick with (what turned out to be)
eosinophilic esophagitis. Since he got his feeding tube and we've been able to get him nutrition even when he can't or won't eat well, he's moved up to 50
th %
ile. Possibly that's still below where his genes would take him without a medical condition, since Mike is 6'5" and no small fry and I'm *not* a petite flower myself. But, plain old average is GOOD. He's healthy because he is getting proper and adequate nutrition. I'm just concerned about what his growth might do when we drop the tube. I'm sure it will be a gradual thing. I'm sure we'll keep it in for a time even if we don't use it just to keep an eye on his growth. But it is still something that gives me a case of the "what ifs".
In other news . . . my best friend has set a wedding date!!
WooHoo! I am so excited for her and her future hubs. Congratulations, Carrie!
Every party has a pooper . . .
. . . and Tommy G is it.
Whyyyyyyy do I have to do this?
photo taken by surprise - Look! He IS having a good time!
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