Having second thoughts

What a busy week Luke had his appointment last week with Dr. Sand Loud his developmental pediatrician. (Very sad appointment cause we really like her and we found out she is leaving). It was weird I really really wanted to tell her I didn't think his catapress patch (med for hyperactivity and behaviors) what working during the day anymore. I mean I have seen it work on the highchair or the shower stall when it falls off him and sticks to a surface it's amazing the shower stall or highchair don't move all day. However, when it's on him that's a different story. The decision to even put him on one of these meds was difficult enough. It took alot of tweaking the dose and changing things before we even settled into a right dose. It has done great for night sleep, before he was only making it 4-5 hrs and not even in a row, now he is going much longer. Most kids on his patch change it every 7 days we tried that but by day 3-4 it was wearing off so we were instructed to do every 5 days. Then after our big care conference with all the doctors we talked some more about how he slept so well the first couple of nights that the doctors agreed we could change it every 3 days. Another prime example of how he doesn't metabolize his meds correctly. Well so back to the appointment Dr. Sand Loud saw him for our 40 minutes appointment (another reason I love her cause she spends so much time with him) but she brought up the fact he seemed very hyper and active and that we were already at the highest dose of catapress per his weight and changing the patch so early that she thought it was time for a new med. I wanted to say something about this so bad so I was so relived it was her idea! Now for the reason for this blog the drug choice Risperdal! As a special education teachers I had many kids on this that tried it some it worked others not so well. It seems such a strong choice for him at only 3. The drug is in a completely different class than Catapress and works very different and I am so worried about the change. Terrified that we will go back to the days of no sleep for days on end. But than I think about the fact we are becoming more and more homebound and his behaviors are really starting to affect us as a family. We can't really take him anywhere, he is climbing on everything, never still. Neuro chalks it all up to the microcephaly, just like everything else, "Kids with microcephaly don't require alot of sleep" "Kids with microcephaly can be very active!" Ugh yes I know, kids with his type of neurological conditions are alot of things I just want to scream because I don't need you to keep telling me. Really I get it I live it you don't! My biggest fear is that Risperdal lowers the threshold for seizures (something we have a little more control of lately). So he is sleeping and hasn't had a seizure in 6 weeks and you want me to change his meds. I want so badly to have a child I can take out in public and enjoy time with my family but will that ever happen. I mean I keep hearing the "kids with microcephaly etc. etc." and then I think is a med change even worth it! I know I have already heard the opinions from many parents who have tried it and there is no way to know if it will be "our magic pill" or not. All I am left with is the hope that it may make things better. The fears though they are there as well what if the seizures come back with a vengeance. I love our fireman but I don't miss seeing them at all hours of the night. As I sit here and realize how I am rambling on and on I can't help but think about how I wish the decisions in life were more about what type of cereal to buy the kids and less about what if I make the wrong decision and a seizure God forbid takes his life! I hate having his life in my hands everyday. I know I don't control that but its such a hard concept to accept. So much easier being Daddy his thoughts on all of this is, "you do what you think is best?" Well my answer to him is easy for you to say, I could make a decision that could hurt him! Well the med change won't happen til after his G- Tube surgery next week anyways which was a start move by my favorite doctor. At least we'll know if the behaviors are from the med and not the surgery! His surgery is scheduled for August 9th, another hard decision that I have been trying hard not to regret but he had another very tired day today and didn't want to eat so on these days I don't regret that decision. But I am a little nervous anytime they have to but him under, terrifying actually. He has recently had the malignant hypothermia precaution due to the possible mito disease lifted so at least it shall make recovery time easier. Although after discussion with other drs. this week about the 2 weeks that he won't wake up period I am being urged to seek a second opinion about the mito stuff. Just this week I learned about some other mito kids who also have Factor V Leiden, which is the clotting condition I was diagnosed when i was pregnancy with Lily. So I have spent alot of time on my favorite medical sites reading up the connection it could have with Luke. Although i have been told over and over they don't test kids whose parents have it. I have decided to argue this at our next mito appointment with Dr. Cohen. I have been rightbefore and if I'm not I can live with sticking him one more time for the chance that we find his mito or a Factor V problem. With him not being verbal it makes it so hard for me to know how he is feeling. Perhaps I am missing some signs. But the constant sleep and low energy are a big mito sign one that I just can't ignore. Okay enough about me but for all of you who read this today can I ask you to say a special prayer for a dad that got on the elevator last week at ACH with me. Through his tears and in speaking to the hospital Chaplain I overheard him tell her, "that he is has said all the prayers in the world and that they are not working, and something to the affect of she will probably not make it through the week" I wanted so much to ask her name or tell him I would pray for her, but the lump in my throat was there and I tried to hold my tears in until he exited the elevators. These are the moments the decisions in our lives that make parenting a child with special needs so difficult, the emotions are something I won't wish on my worst enemy. So strong! So pray for his that little girl today as Heather told me God knows her name!