EEG, Early Intervention, and Prednisone

Vivian’s first EEG was done on Tuesday.

Ben is unfortunately sick with a cold/cough thing, so we thought it best he didn’t go to the hospital to make anyone sick. This meant it was just me and Vivian headed to the hospital. She cried the entire way there :( It was really rough.  She cried the entire 15 minutes I had to wait to get a parking spot. When I finally got her capusle clicked into our snap’n’go stroller system, she passed out from crying so much. Then of course, once we got into the appointment, she screamed the entire time they fitted the special cap on her.

The poor technicians were just beside themselves (and me too at that point), and started asking me if I’d tried this and that. I had to tell them that no, she wouldn’t take a bottle like this and that no, she wouldn’t be interested in her pacifier when she was screaming her head off. It took about ten minutes for me to calm her down again and then she passed right out on my shoulder, which isn’t something she normally does at all. It was definitely sleep from too much crying, not from being soothed or calmed. I hate it and it makes me feel like a bad mom when it happens :(

We won’t know the results for a few more days, when we are due back at the hospital at some point to see the neurologist again, and to get Vivian’s blood pressure checked.

We finally were contacted by our early intervention provider, The Champion Centre.

We should have been referred on to Early Intervention the week Vivian was discharged from hospital (first week of July), but due to whatever crappy reason, be it shit timing or lack of good procedures, we only got referred last week and there is a 3-week wait at all of the four providers in Christchurch. 8 weeks of no support there for us and Vivian, after all we heard about was that our early intervention provider would help with this or that.  I am angry about this. I am angry about a lot of things that have happened in hospital and things that should have happened in hospital but didn’t. It seems like a lot of times we have fallen through cracks in the health care system with Vivian and she’s not even 3 months old!

We had our initial meeting with someone from Champion Centre yesterday and will be going to a meet & greet on Monday to meet the team of specialists that will be working with Vivian in the months and years to come. These include a physiotherapist, a speech and language therapist and an early intervention teacher. It’s a lot to take in, and I’m not sure we made the right decision. We could have chosen to have a home-based provider, and I’m starting to think that might be the better way to go because Vivian is so easily thrown off of her feeding and sleeping if we have to take her anywhere. They will most likely do the first few sessions with Vivian at home due to the prednisone’s immunosuppression side effects, but after that we will need to take her in once a week.

Ben and I are running really low on energy this week and with Ben sick it’s been really hard on both of us. He’s been absolutely amazing even though he feels like death warmed over and taking extra precautions around Vivian to make sure she doesn’t catch whatever he has. Fingers crossed she doesn’t get sick! We have appointments every day next week, so I can’t afford to get sick either.

We started Vivian on the prednisone Monday evening.

It tastes sweet at first but then has a horribly bitter aftertaste. I think she’s starting to show some oral aversion now…she used to be a hardcore pacifier fan while falling asleep and now she won’t take it after having prednisone, unless she is very, very sleepy. She spits it out and grimaces, or grimaces if you even put it near her mouth.

Her poor tummy has been very sore yesterday and today- she has started spitting up (spilling as New Zealanders say) a bit and she’s never done that before. She is also crying a lot more than usual, and she is already a baby who cries *a lot*.

You can just tell it hurts. She brings her little legs up to her stomach and screams. And it’s messing with her bowel movements as well, giving her horrible gas and painful bowel movements. Not fun at all. And this is only the end of day 2. I don’t know if we can take 6-8 weeks of this and still have a child that is willing to eat on her own. :( Her intake volume has been down the last two days due to her not feeling well. I am doubtful she will gain weight this week at the rate she’s going and the amount of crying wasting her calories.

I wish we didn’t have to syringe any medicine into her mouth at all; this makes medicine number four, and we have to give it to her four times a day, with food, which isn’t going to create an awesome association with her food.  I thought we might be able to disguise the prednisone in some breast milk, but it’s got too strong of a taste, and some parents of IS kids have said their child refused to take a bottle after starting on prednisone, so my idea of putting it in a bottle is not going to happen.

Vivian is exclusively bottle fed because she refuses to latch for breastfeeding. My c-section, her month-long stay in NICU, the pacifier being introduced (without our permission) by hospital staff, and all these medications being syringed into her mouth have caused some nipple confusion. And my letdown isn’t fast enough or long enough for her, so she prefers the bottle. If she starts having a bottle aversion, we’re really screwed.

All of the above being said, we still managed to get a few smiles from her today and she had a long conversation with Ben after he discovered she likes it when he makes monkey noises at her. :) I hope we can still get at least one smile each day while she’s on the prednisone. It looks like it’s going to be a hard couple of months ahead for us. I don’t know how other parents get through it. One day at a time, I guess!

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7 Comments (+add yours?)

  1. Leah Hunter
    Aug 29, 2014 @ 06:02:02

    Gwen and Ben and Vivian
    HUGS. that’s all I have for you–so many hugs. You are doing such an awesome job. and you keep on keeping on despite the heartaches. One day at a time-forward- can’t look back except to learn and then do another step forward. You are both amazing Gwen and Ben. Hold on to each other and to Vivian. We love you. prayers and hugs. Aunt Lee. One smile a day is a great goal!

    Reply

  2. mundens
    Aug 29, 2014 @ 09:00:32

    Patricia Champion’s Early Intervention center was just starting up in Christchurch when my youngest son Ben was born (he has trisomy 21, probably better known as Down Syndrome), It was one of the first such centres in the country and they had great staff, and lots of useful equipment, most of which was funded by donations from commercial organizations as they weren’t part of “official” pediatric care back then.
    They had a lot of very useful stuff, and I ended up helping them out with computer hardware, basically building large, rugged, switch panels for some of their machines, so that kids who had no fine motor control and could only flail with their arms, or had no arms and used their foreheads, etc, could interact with the learning programs.
    I think the concept has been heavily validated now, but at the time people were saying why are you wasting so much time and energy on kids who might not live very long?
    At the time Ben also had a massive hole in his heart, such that he effectively only had two chambers out of four and the de-oxygenated blood was mixing with the oxygenated stuff and his heart was growing larger and distending his rib cage and chest as it tried to work hard enough to keep the blood flow going even in the face of the massive flaw. His life expectancy was low if we couldn’t get reconstructive surgery in time, and his growth and energy were restricted as well. We had people tell us it was cruel to make him go to EI when he probably wouldn’t live past five, though there was nothing but support from the people at the EI centre, who taught us how to massage and move his body to assist the blood flow and stuff
    Ben got his surgery, and is now 26, has a girl friend, and like many younger people these days, knows more about using his laptop and cellphone than his mother, and enjoys cos-playing superheroes.
    Anyway just wanted to say that Patricia Champion’s pioneering of early intervention twenty-odd years ago was one of the things responsible for Ben being able to actually attend school, and the like, so I’m glad it’s more mainstream now.
    I don’t think we even found out about EI existing until Ben was over six months old, so the fact that they’re now expecting it to get scheduled automatically after birth is a good thing. I guess EI’s funding is tight even now they’re part of the “establishment”, but I hope you get some good people working with Vivian.

    Reply

    • Gwen
      Aug 30, 2014 @ 21:11:22

      I’m glad that you stood strong with what you wanted for Ben. I can’t imagine having people ask me straight out why we are bothering with Vivian.

      Champion Centre’s funding does sound to still be tight- they have fundraisers and such being advertised on their Facebook page right now: https://www.facebook.com/TheChampionCentre

      Hoping the team of specialists are awesome!

      Reply

  3. mrsstaceydodd
    Aug 29, 2014 @ 20:30:11

    Oh Gwen :-( Prednisone is horrible stuff aye. It’s real rough on their tummies. Thomas had to be put on a tougher reflux med to help protect his tummy. Giving the pred was tricky I remember syringing in the tiniest amounts so that I knew he would swallow it. This just meant it took ages to give him his meds!!! EEG’s are not a pretty experience. I really dread them. Thomas always has a nasty rash from all the glue they use not to mention trying to clean it out of the hair when it dries!! How is Vivian sleeping? Has the pred caused any disturbances there?
    Interesting to read about the intervention team. We never got a choice, it was just CDC through the hospital with a team that visits in the home. They should really make it a priority to visit you at home with such a young bubba. Hugs.

    Reply

    • Gwen
      Sep 04, 2014 @ 01:57:54

      Viv’s sleepy can be patchy sometimes now, but she seems to be getting back to sleeping better at night, or at least in the early evening for a bit. There were a good few days where she would only catnap, which drove us crazy.

      It’s still early days, though. Her sleep could go out the window again!

      Reply

  4. Sheila
    Sep 02, 2014 @ 21:10:57

    Hi Gwen – my daughter still attends the Champion Centre and they have been amazing. Also the support of the other mums is fantastic. If I had had a choice initially I would have chosen home based care but now am really glad I didn’t get that choice because the support from the Champion Centre has been great. They only see the child not the disability. Also not sure if this helps but I used to give foul tasting meds to my daughter mixed with maple syrup (pure kind). She had an oral aversion but could sometimes get meds into her as maple syrup seemed to disguise taste. One last thing!!! Have you thought of cranio osteopathy? All of the children in my daughters group at Champion Centre see Emma Fairs at Helios House – she was a god send to us. Sending you strength as you navigate this unexpected road with its twists and turns and unexpected bumps. As parents we want the best for our precious babies and sometimes that is harder to achieve than we could ever have imagined x

    Reply

    • Gwen
      Sep 02, 2014 @ 22:24:08

      Hi Sheila, I think I have your contact details! I have been meaning to get in touch with you, but this week has gotten away from me and I’ve come down with whatever virus my husband had.

      Thank you for your story about the Champion Centre. It’s so hard to know what is going to be best and I am afraid of making bad choices for Vivian.

      We definitely would like to get Vivian to an osteopath- I have looked at the Helios House previously and we just don’t have the money yet. Once we are able to access the funds people have donated through Givealittle later on this month we plan on getting Vivian in there ASAP.

      Thank you so much for reading, commenting, and sending your support <3 We appreciate it so much!

      Reply

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