Day 2 of Hospitalization

Well, here we are at the end of day 2 at the hospital. Tyler has been on some sedative medications all day today. It’s the same medicine he takes to sleep at night at home, but twice the dosage. It’s made him much calmer today, and that is a very, very good thing. He’s actually calmed down enough to watch some favorite shows on Netflix —something he hasn’t done in a couple weeks. He also took some good naps. Yes, he’s pretty doped out, but as a temporary help, it’s great. His little body just needs a break, so we are glad this med is giving it to him. He still has occasional episodes of loud shouting, flailing around, and agitation, but it’s not constant like it was before we came to the hospital.

They also (finally!) started the IVIG treatment tonight. There was quite a bit of hold up because of the controversy surrounding this type of treatment for tics. To really simplify the dilemma, some doctors think there exists such thing as a yet-unproven auto-immune disorder called PANDAS. Others think PANDAS is hocus-pocus that has no scientific credibility. Those who believe in PANDAS say that a strep-A infection can cause tic disorders and/or OCD, and it can be treated with antibiotics (which is why Dr. Chrusciel put Tyler on antibiotics during our hospitalization last month). If PANDAS doesn’t respond to routine antibiotics, then IVIG infusion therapy can knock out whatever strep infection persists, thereby completely eliminating the tic disorder within a matter of days. On the other hand, many doctors don’t believe that PANDAS is even real and that any anecdotal evidence for recovery from tic disorders after treating with antibiotics or IVIG is purely coincidental. So, in other words, the IVIG infusion for Tyler is intended to treat PANDAS, which Tyler may or may not have, and which many doctors do not even believe is real. The infectious disease doctor, whose authorization was needed for Tyler to receive the IVIG treatment, is of the camp that PANDAS isn’t real. She didn’t want to put Tyler at risk of harmful side effects for something she doesn’t believe is even real, which is a very valid argument. However, she was content to authorize it if we first did a test on Tyler’s blood to see if it reacted negatively to the IVIG, which would indicate that Tyler was at risk for an anaphylactic reaction to the treatment, which could be very serious. This evening, we were finally able to jump through all the hoops to make all the doctors involved come to a happy agreement, and Tyler had the blood test done. It came back good, so Tyler was cleared for IVIG infusion. Again, this may not do anything to help him, and in the meantime it can cause flu-like symptoms. But, wouldn’t it be amazing if Tyler does have PANDAS, and he walked away totally normal in a couple days? We just really appreciate that the doctors were willing to work together to find a possible solution for Tyler’s problem.

Also, we still plan on having a spinal tap for Tyler. We originally hoped to have that done today, but because of the timetable the lab needs to run the tests on the spinal fluid and the fact that it is right before a weekend while they will be closed, we had to reschedule it for Monday. The spinal tap will test for rare forms of encephalitis and some other things that could also be other explanations for Tyler’s condition. Again, Tyler may be dealing with an extremely severe form of Tourette Syndrome, but during this hospitalization we are hoping to check for every other imaginable explanation.

So here’s how you can be praying.

• Pray that Tyler is totally healed of this affliction and that he can enjoy his life again and not be tormented as he has been. Whether healing comes through doctors and medicines or through a spontaneous divine touch, all healing comes from God. We are happy with however God chooses to heal Tyler.
• As far as immediate needs go, please pray for Tyler to get good sleep tonight. He’s sleeping now, but because he’s on the IVIG, they have to check his vitals every hour. We are hoping that doesn’t mean he will wake every hour with crazy tics and difficulty returning back to sleep. We all need to get rest.
• Pray there are no side effects from the IVIG.
• Please pray that if we are not dealing with Tourette’s, the proper diagnosis presents itself so we can know how to treat it. If it is PANDAS, pray the IVIG works quickly.
• Pray for Tyler’s emotional state. He becomes very upset (I would, too!) and cries out of frustration. He needs to experience God’s peace and rest. Such a sweet boy!
• Pray for Brian, me, our other 5 kids, and our extended family who are all pulling double-duty while Tyler is sick. Life continues while Tyler is in the hospital. The 4 younger kids are spending the weekend in Tulsa with my parents, and Annalisa is spending the weekend with cousins. My parents both have to return to work Monday, so Brian and I will be juggling home and hospital, family and work, until this hospitalization ends. The triplets' 6th birthday is on Tuesday, and we haven’t even had a moment to plan a party. So please pray that all our kids feel loved and cared for during this process. Also, pray for refreshing for Brian and me and my parents and all who are filling in the gaps.