Update on Conner: 9/9/15

as some of you know Conner was airlifted to his main hospital four hours from home. On August 11th. His pediatrician found a collection of fluid behind his pace maker (that he had placed back in December 2014). His skin around the incision site had healed but then began looking infected with a red swollen look around it. We were concerned already from the skin irritation but even more so when fluid was found. So he immediately was flown away.

After ultrasounds, X-rays and blood tests, the doctors decided to start Conner on a big treatment plan of a couple of different antibiotics via IV. He later received a PICC line because of so much use of the IV. The plan was to keep him on IV antibiotics for a 6 week course and no chance of going home. The infectious disease team have a very difficult time knowing for sure if that fluid collection is an infection, sadly there isn’t a real way to tell besides the fact that his skin was very red and irritated. Also his CRP levels were high (checks the inflammation in the body, very non specific). 

To add to everything, Conners seizures were completely out of control! He was seizing every 10-15 minutes and given his versed (seizure rescue med via nasal spray) multiple times a day. We decided since he is already in the hospital why not try the keto diet (special seizure diet, LOOK IT UP). It has worked wonders already. After weaning him on to it (over a 3 day course) we already saw improvement. He was 9 days completely seizure free. 

After a few weeks of antibiotics his irritated skin cleared up but left a scar. The repeated ultrasound showed less fluid collection. It went from 3.5mm at beginning of admission to 1mm after 3 1/2 weeks. But weirdly, after everything began looking better, Conners CRP levels (inflammation blood test) came back higher and higher and higher. 

We feel as if we are on an episode of “House”. None of this makes sense. Everything is looking better, but he is obviously inflamed somewhere inside his body. The nurses and doctors always remind me “Conner is more complicated than most kids”. Isn’t that the truth. Tuberous Sclerosis stinks! 

Conner has been on the Keto Diet now for about 2 weeks and it’s going great. He has had a few break through seizures (very small partial seizures). I’m just so grateful for this diet. Conner feels great and he can finally be himself!

Conner is admitted to one of the best hospitals on the west coast. Somehow though we still can’t figure out what is wrong. We are on day 27 of 42 for his antibiotics course but now that this inflammation thing has become a problem, Infectious Disease team won’t want to send him home with his CRP level so high. Looks like we are staying here forever… 

 

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2 thoughts on “Update on Conner: 9/9/15

  1. Oh my! My dear sister:
    I had no idea what you and Conner & your entire family have been going through. I’m sorry from the bottom of my heart!
    It is good that the new keto diet is working well to keep the seizures in control. Know you Are I in my thoughts and prayers to Jehovah. To help you cope with this difficult situation and that you make good decisions in the care of your little boy, Conner. I pray for you dear husband and little daughter too!

    Your dear sister in Hendersonville, NC
    Sharon Swanzy

    Liked by 1 person

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