On the Mend

I have never seen Todd sick like he was on Friday. He looked frail and small. He is stoic. He never gets sick. After eight days of being sick, he agreed to go to the ER, and when he agreed to go, my heart sank. For him to agree, it had to be bad. Todd was in the ER for seven hours Friday before being admitted to a room.

The doctor in the ER seemed nice but after running tests he came in and said Todd’s liver enzymes were elevated and casually called it “Hepatitis.” Later he would mention that hepatitis is just a technical name for inflammation of the liver and could be for any number of reasons, but it was kind of a jackass thing to say because to most people Hepatitis means something entirely different and super scary. It’s not a term to throw around lightly. Todd’s grandfather died of liver cancer and I saw fear in Todd’s eyes as soon as his liver was mentioned.

They hung one bag of IV fluid in the ER but not another one for the next six hours. He’d had near constant diarrhea for over a week and had been vomiting too. He needed fluids.

At home, I’d left Riley in charge, and I ended up being gone for four hours. When I got back I found  she had sequestered herself in her bedroom and obsessively worked on her animation films, so Seth was basically alone for four hours by himself. She came out of her room bleary eyed, since no one had forced her to take a break. She hadn’t even checked on her brother. Later I would learn she’d been coping the best she could, diving into her area of interest, but it appeared she was just oblivious.

I fed them dinner, and my friend Kirsten took the kids for a couple of hours so I could go back to the hospital.

When Todd finally got admitted to his room (seven hours in) the nurse rolled in her computer. Asked a bunch of questions and typed in his responses. She took his pulse for ten seconds. Listened to his heart for maybe ten seconds. Sent an aide in to do his vitals. The RN did not spend any time actually looking at him. Her focus was on her computer. She didn’t note his pallor. She wasn’t present. Todd never complains. How could I trust him to be cared for there? But I needed to get home.

The next day, Saturday, I could not go see Todd in the hospital because Seth had fallen ill. I feared he had come down with the same thing Todd had, and it scared me because he is so vulnerable with his PANDAS/autoimmune deficiency and he’s just 60 pounds. He can’t afford to lose fluid like Todd was losing it. By Saturday evening Seth was throwing up and had liquid diarrhea. Todd was in the hospital and no one was giving us any explanation as to what was wrong with him. I was near panic. I ran to CVS to get some supplies for Seth and was in tears in the check out line because it was going slow and my baby was sick, and the kids were home by themselves. It took less than ten minutes, but it wasn’t right. I felt so very scared and alone.

Later that night, I went into the basement to put some of Seth’s soiled clothes in the laundry and heard Riley crying. Where was she? Surely not down there, in the dank spider filled cellar that is only for laundry and kitty litter boxes and storage?

She was sitting in the dark, hands in her face, sobbing. I didn’t have time for this, Seth was two stories up, puking.

“I’m so scared! What if you get sick next and I have to take care of everyone? I don’t know what to do! I don’t know what to do! Dad’s in the hospital and Seth is so sick! I don’t know what to do!”

I could hear Seth retching, sound traveling down the laundry shoot.

I dragged her by the hand with me up the flights of stairs, reassuring her I wasn’t going to get sick(I hoped). Daddy was fine, he was being well taken care of(even though I questioned that). She was too far gone to wash her face and I had to do that and brush her teeth for her. I popped a melatonin in her mouth, stuck her in her bed, shut her door and faced the night with Seth. I got teary on the phone with Todd, and then kicked myself for it. He felt helpless enough as it was. Last thing he needed was to worry about us at home.

Seth slept in my bed and pooped himself twice in his sleep before he could make it to the bathroom. We were up all night. I had the bag packed and hourly weighed the decision to take him to the ER too. My only solace was if this was a stomach bug, it wasn’t something like liver cancer for Todd. Liver cancer isn’t contagious.

Riley woke fresh as a daisy at 7AM Sunday and allowed the dogs to tramp into the bedroom waking us up, when we’d had about two hours of sleep. She didn’t mean to wake us, but didn’t mean not to. She didn’t think to make them come downstairs with her. It’s never malicious with her.

Todd came home late Sunday afternoon. The antibiotics worked. His liver enzymes are down. He does not have hepatitis. It appears to have been some sort of bacterial intestinal bug. Seth seems to be clearing whatever it was, aided by my own vigilant application of non-FDA approved bug fighting remedies at home.

Monday by coincidence the kids had physicals with a new pediatrician. Riley needed the forms for school. I dreaded the appt. because I dreaded the vaccine interrogation. This doctor started in about them, warning me that if a measles outbreak happened the school could kick Riley out for a whole year, but otherwise backed off respectfully. He also shared an anecdote about one of his patients with PANDAS who was getting IVIG at another practice. A lot of immunologists use vaccines to determine whether the IVIG is working. They give IVIG, then give the pneumovax vaccine and measure the body’s response to it. And this doc said one PANDAS patient he knows personally had a severe reaction to the vaccine they gave to measure the IVIG effectiveness and has regressed and never recovered. He actually admitted that to me. Which speaks to an open mind at least.

We would never agree to that kind of vaccine/response experiment with Seth, we know too much, but it is standard practice for most immunologists. They just truly believe that vaccines are 100% benign. They can’t even use common sense to fathom how injecting something into an already weak immune system might wreak havoc on it.

The thought of this patient with PANDAS, getting that vaccine and having a reaction to it, which he never recovered from, made me ill. That poor child. Those poor parents. Heap it onto the last two weeks I’ve had and I was done for. I feel PTSD hyper-viligance about the health of my family. I’m feeling angry at mainstream medicine. I’m questioning how a society can be so asleep and keep allowing its children to be hurt. I’m kind of reaching around for it but appear to have misplaced my faith.

Sunday, after picking Todd up at the hospital, I took a nap with Seth for over two hours. It’s the first snuggled-up nap we’ve had together since he was a toddler. He doesn’t usually slow down enough for that kind of thing. I ran my fingers through his thick blond hair. I studied his hands, still so small, his fingernails. His cheeks. I laid my head on his back and listened to him breathe. I thanked God for him, and hoped, hoped, hoped he was over this illness.

Monday except for the doctor appt. we all just laid around, except for Riley who worked on her films in her room.

Today it appears whatever hit my boys is on its way out. Seth is still weak and nauseous and nothing tastes good, but no vomiting or diarrhea today. Same for Todd. They appear to be on the mend.

I am exhausted.

Thank you to friends Betsy, Anna, Kirsten, Ruth, my mom, my sister, Todd’s parents, his brother, who checked in with us to see how we were doing. Thanks to all the people who emailed and or/left comments here and on FB and to all the people who didn’t leave comments but who wished us well or sent out a prayer for us. One woman I barely know has taken me under her angel wing. I’ll introduce you to her in another post. Carrie Link talked me straight off the ledge lighting candles left and right all the way in Portland, Oregon. Just the fact that she was “worried sick” kind of took some of the burden from me, let me breathe a bit.

Right now my little family is okay.

Sorry this post is so disjointed. It’s going to have to do.

Thank you for your thoughts and prayers.

Love.

This entry was posted in appreciation, Asperger's, IVIG, PANDAS, Uncategorized, vaccines. Bookmark the permalink.

18 Responses to On the Mend

  1. Dee Ready says:

    Dear Michelle, this posting left me–literally–breathless. I forgot to breathe while reading it because of the whole trauma that was playing out on the blog page. I am so relieved to know that Todd and Seth and you and Riley are okay. What a nightmare all those days were. You have every right to be angry at the medical profession in our country. This is righteous anger. I applaud you loud and long in your efforts to effect change. Peace.

  2. naomi says:

    Oh Sweetie, What a brutal experience. Sending you so much love and praying for strength for all of you.

  3. Heather says:

    You have fierce strength. I applaud your tenacity. I love your little family and I am so grateful that you all are on the mend. Nothing but love and positive energies headed your way…

  4. -e- says:

    Oh my. I have missed your last few posts, and to check in and find this? Well, it just underlines how slippery and tenuous everything can be. Things can just spiral so quickly, or clump together so randomly. It sounds like this time you were really maxed out, with the three people you love most in the world all needing you intensely at the same time. You did wonderfully. You were enough. You jumped to attention and filled in the gaps, kept your cool, made the calls, did the laundry, lost the sleep, listened for the crying, soothed the brow, and made it through. You gave the maximum you could, and had friends and family to share the burden and support you all around the edges. Also, no small feat, you wisely navigated the pros and cons of traditional Western medicine.

    Everyone in your family just learned a life lesson in strength and perseverance. Now go take another one of those well deserved naps!
    hugs,
    -e-

  5. Lydia says:

    I get it– trust me, I get it. Four admissions, five procedures, a major surgery, and maybe eight ER trips in the last few months. Countless emergency doctor runs. Vomiting 30 times a day, pain, diarrhea that never ends. This is my life. No pity, nothing to pity about. But yeah, I get it, the urgency, the fear.

    Thankfully, I can also tell you what helps. Kitties. Hugs. Friends. Jokes. Naps. BREATHE. Just breathe.

  6. Amanda says:

    Just delighted to hear everyone’s on the mend. Sending love and happy thoughts for a steady peaceful recovery

  7. another mom says:

    WOW. Glad they are doing better. I was going to suggest they test Todd for Mono as the liver can be affected like this (as well as the spleen) and it can present in so many odd ways like this, but it sounds like they had a flu bug.

    Regarding the vaccine IVIG response, it still amazes me how many ways doctors are continuing to destroy kids with vaccines and how parents are buying the bullsh*t.

  8. *m* says:

    What a nightmare! So relieved to hear that the guys have turned the corner. Hoping for a restful, healthy, happy week ahead for Team O’Neil. Thinking of you all.

  9. Julie A says:

    Have said the Prayer of Protection for you all and will continue to do so….
    Julie A.

  10. Kathee says:

    It seems like something is going around. I haven’t been sick but I know of several people here in Pittsburgh that have had what you describe. I am glad everybody is okay. What an ordeal. And I understand the PTSD hyper vigilance… The health care, the food system, cosmetics, air, vaccines, bpa on receipts, chemicals in diapers…. It is all too much and making me totally nuts. Love to you and your sweet family.

  11. How, how did I miss this and your previous post? I feel terrible, out here in virtual world that I did, but I will try to make up for it by beaming as many healing thoughts and love your way onward. I can imagine how exhausted you feel after such an ordeal — your descriptions of the madness that constitutes our “healthcare” system resonate with me — it’s a panic I feel and tamp down nearly daily.

    Blessings to you and each of your beloveds — may you be well.

  12. kario says:

    Oh, Michelle. There is something about the way that we grew up that make us indispensable in a crisis, but it comes with a price. I am so sorry that this was going on for you and I hope that now that things are getting better you have support. That’s always when I fall apart – after knowing that everything will be okay again for a while. It’s like that pent-up adrenaline bleeds its way out into everything and I just start shaking.

    I hope you know that you are being surrounded by love and light, still, and all you need to do is bask in it. Take care of yourself, please.

  13. Liz says:

    Sending the best wishes out to your tired spirit (which is a pretty impressive juggler)

    :)

  14. Amber says:

    Oh sweet O’Neils!! You poor darlings, what a nightmare. I’m so happy to know they are on the mend. But do take care of yourself a bit, too. How traumatic. :(

    ((((((love))))))

    Oxox ;)

  15. Carrie Link says:

    My you never need it, but I’m here anytime you need me to be worried sick.

    Love.

  16. Monica C. says:

    Goodness, you went through a harrowing time!

    It makes us all appreciate good health. I am so thankful for my health and my family’s health and try to never take it for granted!

  17. rhemashope says:

    oh friend, thanking God your little family is ok.
    rest now. i hope you can.

  18. Deenie says:

    I’m feeling a little teary now. I’m just so happy that your guys are on the mend. I wish you didn’t have to worry so much, so often, about the health of your family. It must be exhausting. Hopefully now you can take 5 minutes for yourself.