Tuesday, July 31, 2012


After 2 blown veins in his arms, 4 different nurses and 1.5 hours of crying they finally got Oliver's IV in and drew blood for lab work. It took us a half hour to calm him down and they came back and told us that the blood they drew had clotted and they needed to draw it again! Thankfully they could just use the IV port, or so we thought, but it didn't work! So they then had to stick him again and draw from his other hand. He's going to be bruised for weeks.
We're not sure what's happening next but they're doing a surgical consult for the Gtube but it looks like the OR schedule is booked solid and they won't be able to fit Ollie in. One Dr is really trying to convince us (in a not so friendly way) about different things that "need to be tried" first. Like an NG tube(through the nose for nutrition) No, I'm sorry, but that's unnecessary. I am my child's advocate, and during the past 3 months I have learned A LOT about this disease and NG tubes are not the path for Ollie. We don't need to put him through the trauma and pain of an NG placement, we know he needs a Gtube. The trouble with MLD is that it's so rare, that we usually find that we know much more about the disease than most of the Drs he sees(other than his neurologist) We may only consider an NG if they really can't get his surgery done for a week and he doesn't do well on his swallow study and upper GI series he'll do tomorrow. (more about that tomorrow) But not with a "hey let's try this" medically invasive procedure attitude. Geez, he's 2 and very sick, let's not put him through anything we don't have to.

I'm sorry if this post sounds angry, but I really am angry, at one point today there were 6 Drs in the room and it was just too much, we were like a freak show and the one Dr. wasn't asking direct questions, she was saying "Tell us about why you're here." well, where do we start... We have repeated the same case history over and over and over during our 6 visits here over the past 3 months. I'm not joking, over 20 times. Read his history for goodness sake! It's very painful for us emotionally to have to retell how he slowly lost his ability to walk, crawl, sit up, talk and eat to different people every time we're here and multiple times per visit too. To retell about his seizures, previous MRIs, and medicines. Today when the fourth person asked me "what medicine is he currently taking? in the span of 30 minutes I actually laughed out loud! I said "I'm sorry, I didn't mean to laugh, but you're the fourth person to ask us that, it's a little crazy." She was very nice and I felt bad for laughing, but really, too much. I have definitely found my voice though, anyone that knows me personally knows that I'm usually pretty timid about talking to people I don't know or worse, asking people for things, I hate talking on the phone(I don't even like to call for pizza) but when it comes to taking care of Ollie I don't mess around. For example, the nurses usually come in every 4 hours to check vitals(heart rate, blood pressure etc), including 10pm, 2am and 6am. He was dehydrated, and he's doing much better now, we don't need his vitals every 4 hours and waking him up at 2am and taking 2 hours to fall back asleep only to have more vitals 2 hours later. So I told them not to come in while he's sleeping, just like that, and the nurse said "Okay, no problem." I didn't know I could do that! Haha, I wish I had asked at our 2 other overnight stays. So they checked him at 8pm and they aren't checking him again until he wakes up. Now I'm going to sleep. I apologize for the grammar and angry Katie that has run amuck through out this post. It's been a tough day.


  1. Don't mess with Mama Bear! Katie - I don't know you (my son Matt had Chris this past year and I teach 5th grade in Bethel) - but you are in my thoughts and prayers daily. There is nothing you will do in your lifetime that is more important than the work you are doing now for Ollie - I admire you so much for your strength and courage. Never apologize for being his advocate - and saying "no" and meaning it. God bless...

  2. Katie,
    Thinking of you guys. You and your husband are inspiration to us all! I hope Oliver has a good night's rest. I'm sure he is thinking "My mom is bad a**" !!! Keep your voice ;)

  3. Katie...(sorry in advance for the long post)

    Don't you dare ever feel sorry or wrong for putting your foot down. Doctors, though they can do amazing work, can sometimes become desensitized and they forget that over and above anything else, this is your baby and emotion plays a big part no matter what they may think. This is your baby and nobody, and I mean nobody knows him better than you. You always have the right to tell everyone to get out and give you and your family a minute. It is wrong that you have to repeat things over and over again and just from having a long hospital stay when Ashley was little (granted no where near as invasive as Ollie's) you need to go to the higher ups and tell them its not acceptable. He is a baby and telling you guys that they can't fit him in is just not cutting it. I know its hard for you to be loud and voice your opinion but you are going to have to be Ollie's voice. You can do this! You are so much stronger than you know. I am so proud of you for putting your foot down this first time. You have no idea how much stronger you can be. I wish you could feel what it is like when I read your posts, they are so strong and clear that there is no question of how you are feeling or what you want to say even when you don't know you are saying it. We are all hear for you, sometimes just in the background sending support and prayers your way. My Ashley was repeating a motto from finding Nemo the other day when she was learning to swim, "Just keep swimming, just keep swimming." And with the murky waters you are treading is probably the one good piece of advice I can give you. Just keep swimming! Don't let anyone get in your way!!

    Love always!

  4. Katie, I'm so sorry to hear about your experience at CT Children's. We, too, had a horrible experience there and although it took some work, we moved our child to Mt. Sinai in NYC. I can't say enough how superior care is in the city compared to Hartford. New York is one of the world's top medical centers and trust me, it's worth the drive.

  5. Katie,
    I only know you through Allie Franco and her prayer requests for your family. Do not apologize for anger, it will be the catalyst joe you to get Ollie the care he needs and deserves. I had a thought as we have recently had some medical issues and were asked 4 times in one hour the same questions....our story never changed but even so the doctors failed to get some very specific meds right. You may want to keep a notebook with copies of your story and current meds. It will keep you from having to rely on your memory and repeating yourselves. If Childrens is a teaching hospital and you are annoyed (as we were in Danbury), you have every right to refuse being a case study for interns.
    I will keep you and your family in my thoughts and prayers.

  6. Still thinking of you daily. My heart breaks that anyone should have to go through this with their child. May you find comfort and peace in one another.

    Lynette Rigdon