Sunday, November 15, 2009

This is a long one!

Well, it was interesting to say the least.  I'm going to ramble on and on.  I apologize but I think it's important to document all of this journey.  I want to be able to have some leverage when Noah is older and doesn't want to clean his room or unload the dishwasher.  "Well your other choice is to read the blog and see what your mom went through to make sure you were okay..."  :)  I figure he'll go clean his room.  

The Queen of Keto was amazing.  She was caring, empathetic, knowledgeable, and very experienced with the whole process.  I couldn't have stayed sane without her.  She offered words of encouragement, listened to all of my concerns, made me feel better every time she came in our room, and even brought me a sandwich she made from home.   I cannot say enough good about her.  

I was extremely high maintenance and I'm sure they were ready to get rid of me.  

Throughout this process they have education classes which happen twice a day for 1 1/2 to 2 hours each.  I requested a one-on-one "sitter" for Noah since he has so many seizures and often they make him spit up and someone needs to watch him all the time.  They (the nurses) thought they would just take him to the playroom with the other kids once I left the room.  

I don't think so!  

If you know me at all you know I keep Noah very isolated from germs with arms and legs.  We don't go in public and we definitely don't go around other children.  Queen of Keto understood this and gave me private classes in her off time so I could stay with Noah and he could stay in the room.  (I told you she was amazing and I was high maintenance!)

Noah took to the formula pretty well and his spit-ups weren't nearly as bad as they are at home.  That was SO nice.  

He did have some blood acid/base balancing issues.  He was becoming more on the acidic side which concerned the docs and extended our stay for an additional night.  Thankfully we got it somewhat worked out and they let us leave.  I think they just wanted me outta there!  

There was a negotiation between me and the doctors about meds that went on for about 24 hours.  I found out what a "Yes" person I am NOT.  If they had it their way Noah would have a tube in his nose going directly to his stomach and would be getting 40 mLs of extra fluid volume a day which he CANNOT tolerate and in the end he would be spitting up ALL the time.  

Geez!  What's a girl gotta do to get someone to listen?  

The poor nurse said she felt like a middle man since she kept coming to me telling me what the docs wanted and I would refuse and send her back with a counteroffer.  It was awful and very frustrating.  Again, thanks to the Queen of Keto for listening to me and finding other meds which Noah tolerates just fine.  
Then there was the discussion I got into with a resident who admittedly said she wasn't sure what was going on since she was just covering.  Noah's acid levels weren't getting any better and she wanted to decrease his diet ratio to fix it (I had talked to the Attending Physician and already knew what the plan should be if his levels didn't get better and this wasn't it).  The ratio is important to get the full therapeutic effects of the diet.  Going lower may not yield the same results as a higher ratio.  This obviously worried me since we are so desperate for seizure control  She wouldn't listen to me or even negotiate.  So I asked to talk to someone else (ie: someone above her in the "doctor food chain").  It was late on Friday night and no one else was available.  I was on the phone to Todd crying and hollering to him about how frustrated I was getting.  Thankfully the nutrition people who make the formula messed up and didn't make the adjustment so we ended up staying on the same ratio.  Divine intervention.  The next morning the whole mess was cleared up by the keto team doctors (they did exactly what I told the other doctor they were going to do).  

Sometimes I just wish they would listen to the parents!  But I don't have cool initials after my name like MD so my opinion goes in one ear and out the other.  

Good times, Good times...NOT!

Overall, Noah hung in there, once again, like a true champ.  He complained very little and he was such an easy baby to care for (he always is).  Very mellow and laid back (although it's drug induced).  He has to get his blood sugar tested twice a day (yes, I have to prick his little toes with a needle) but he tolerates it very well.  We carefully measure all of his formula and water and patiently wait for the diet to kick in and erase the seizures from his cute little brain.  Too soon to tell if it's working but our hopes are high.  

That's it!  We're home and hopeful!  


  1. Stick to your guns! You know more about the whole picture than any of the docs. They may know more about this or that but YOU know Noah. Good job! Praying that the diet works out for you all. Love, Jodi

  2. Noah is so lucky to have a mom who is smart, strong and willing to fight for him. Good luck on the diet!!! So glad you are home and get get back into a steady routine again.
    Love you,

  3. So glad that I can read your blog and know what is going on with Noah! It sounds like you made a giant step for Noah with the diet 9even though it sounds like you had to get out the big guns and fight!) that is what we do! Best of luck with the diet. iknow this will help! Amy Groh (McKenna's mom)

  4. Tricia, no one knows their child like their momma's!! I'm so glad you stuck to your guns!! I hope the diet helps Noah!! Hang in there!!

    Brendy ;0)

  5. Fight Fight Fight! Way to go girl. Sounds like it was busy by thankgoodness for that wonderful queen of keto. Fingers crossed this diet is going to work.