Today I am at a crossroad. OK, let’s be honest, I’ve been here a while, set up a bench, planted flowers and watched them grow. I have a couple of ways to progress from here, but none will be easy.
I can continue to sit here, playing the wait and see approach. The problem with that is that it doesn’t help anyone and all I am watching is my son fall further into an abyss of sickness that we have very few answers to. We know he has liver disease. We know that he has extreme, chronic pain. But not much more We’ll be relying on doctors that I have lost faith in many times over. But it is the known. We’re waiting to see when he’ll progress to needing a liver transplant. Of course, it also means we are watching his life go by.
I’ve probably beaten this dead horse to death, but shortly after Jamey’s gallbladder surgery, after the incisions had closed and the medical strips had come off, we took him to the ER for gauze coming out of one of the incisions. It was about an inch long and an off white in color. We literally were able to see the weave in the fabric.
At the ER, two of the emergency room doctors also agreed that it looked like gauze. They called for a surgery consult. The surgeons came down, looked at it, cut it off and called it a foreign body removal. They claimed it was fuzz from his shirt or something.
- I have two boys, I don’t buy white shirts because they will be destroyed.
- Our towels were black at the time.
- His bedding was his favorite color (and that includes sheets and blankets) were red.
- The incisions were closed, we no longer dressed it.
- We saw the loose weave of gauze. I spent 2 years cutting fabric, I know what gauze looks like.
I’ve been fighting this road since. We were actually switched out of Children’s of Pittsburgh GI because I wouldn’t drop it. His Pain team has asked me several times over the course of the years, if something (tissue) could have been left in there. My gut says that there is gauze in there, and I now have had two doctors tell me that it would now be encased in scar tissue. (No, I am not afraid of libel action because I am telling the truth as I see it.)
I suppose that was to comfort me, BUT I’m not the average mother of a child who’s had surgery. I know what scar tissue can do. Scar tissue can build up like a tumor, or it can choke and squeeze the life out of surrounding tissues.
- I have brought it up to every GI doctor as well as the hepatologist and his PCP. Even though most of them looked at me like I grew 2 heads right in front of them.
- I have been trying to contact media outlets. It hasn’t worked. They like cute, sweet little babies who are dying or parents who are dying. Not teenagers who are in extreme pain with major attitudes.
- I have filed a grievance over the surgery, which didn’t help me at all. People just now know that I am completely serious about what I think happened. And possibly think that I am completely insane.
- I have talked to lawyers who told me that we don’t have a case because they can’t force the doctors to do surgery and without the surgery, we have no proof.
- Before he turned 18, infact 2 years ago this week, I had GI and pain on board for an exploratory surgery that the surgeons denied. Two lost years of his life and the incredible amount of pain he is suffering wasn’t worth the risks of surgery.
Another option we have is to contact another GI doctor for a third or fourth opinion as it stands. The risks of that are them once again thinking I am a total loon. Nothing has been showing on imaging and according to our hepatologist, it won’t until it abscesses. An abscess could be life threatening especially with liver disease.
To do this, I would need to contact the patient representatives office at Children’s again. The last time, I was given to the head of the department after the patient representative put the grievance against the above mentioned ER visit instead of on the surgery. I might have thrown a bit of a tizzy in my exasperation. (I still wonder if it wasn’t intentional.) I was also sent BACK to a DRG doctor who won’t even speak to me. DRG stands for Diagnostic Referral Group, or Service. I quite imagine that when my name comes across his desk, this doctor bangs his head wondering when I will ever go away. I seriously was NOT rude although I may have raised my voice especially when I was forced to leave a message. Ok, I did.
With this one, we run the risk of being right where we are right now with no results because he IS a surgical risk. He has cirrhosis of the liver, he has an enlarged spleen.
Our third option is to continue to treat the pain as CRPS and go speak to another pain specialist about spinal cord stimulator. He may find some relief from the pain there, but it’s not guaranteed. The risks include the normal for two procedures with infection and blood loss coupled with the threat of paralyzation because they’ll be implanting it into his spine. The leads could slip and cause it not to work, or it could just not work for him at all. He had no luck with the TENS unit. I actually have an $800 piece of equipment that insurance refused to cover that my children used to shock their faces. Not it’s intended usage at all. We still risk a massive life threatening infection in all of this if I am correct. And if we wait until transplant, if I am right, the surgeons will be walking into a huge mess that they are not expecting.
Add in that at the moment, he is dead set against the implant. He is 19 and legally an adult, and despite the side effects from his medication, he is of sound mind. He may hallucinate a little bit, but thank God he knows it’s not real. Any of this has to meet his approval. If I make the GI appointment, he’ll go along with it to shut me up. He knows we have to at least explore the option of the implant. He’s not happy about it though. And honestly, I can’t blame him. His experience with doctors has been worse than my own. He’s tired of being poked and prodded with absolutely no relief. It’s been 4 years. Countless tests. Countless needles. So much imaging that he should be glowing. They have enough of his DNA to clone an army of giant, bad tempered sick kids with attitude problems. A few of them actually.
The last option could be contacting another GI and investigating the possibility of a bile duct injury. You see, after his surgery we found out that he had a fairly rare birth defect that caused his gall bladder to be duplicated. The diagnosis is actually a congenital deformity of the liver, gall bladder and bile ducts. In Jamey’s case he had two sets of cystic ducts according to the pathology report. The surgical report and what the surgeons told me do not match. The surgeons found no issues other than sludge in the gall bladder (a sonogram had shown stones) the surgical report showed that his cystic ducts were rather short. With laparoscopic surgery, the risk of bile duct injury is a known one even when the biliary system of the patient is normal. Jamey’s was not normal. A bile duct injury is usually found fairly early on though and we’re going on four years post surgery. Of course in those four years, he has developed cirrhosis of the liver with what is normally a slowly progressive disease.
This post could be titled, Why I am insane… It’s all so frustrating. Life is hard when you know your kid is sick, I honestly feel it’s harder knowing he’s so sick yet not knowing what is actually wrong. i would rather have something we could fight. Something that we could make goals to beat. I know I am not alone, there are plenty of others that feel like walking talking guinea pigs. That’s why medicine is a practice. But as the parent of one of those guinea pigs who doesn’t feel everything that could be done has been done, it’s frustrating and disheartening. I feel stuck. I can see all the paths, but each has very similar and very difficult obstacles. And I really feel this bench has been built on quick sand.
Graphics on this post were made using a scrapbooking kit from Pixel Scrapper. The link is on the sidebar.
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Have a wonderful week!