Two week update

Bear with me, this may be all over the place. Its been two weeks since Logan took dipped in his oxygen, causing him to turn grey and lethargic.

We have made great strides since then. He is still sleeping more, but when he is awake, he is very alert!  He will look at you when you say his name. Our baby boy is back ❤ He isn’t 100% though. He still on .5 liter oxygen and is having a harder time with bowel movements. We aren’t using morphine as much which is awesome! But when we do have a pain emergency, the dose we have works quickly to calm him down. But he is making eye contact and smiling!!!

The only super downside is he isn’t tolerating his feeds right now. We started him on amoxiciliian (sp) last week around the same time we changed formulas :/ We think it might be exacerbating his reflux issues. Probiotics were started about the same time and help a little. He also stopped tolerating his continuous over night flow, so we switched to bolus. I wake every 3 hours to start the feed.

We are concerned about him dehydrating if we can’t figure this out soon. Our nurse is looking into Reglan to help empty his stomach and get things moving. Its been frustrating figuring out what we should do. A friend asked today what the plan was since he isn’t even tolerating Pedialyte right now, and I had to say I don’t know. For those who know me, I am a planner. Not knowing what to do is killing me.

I ran on adrenaline the week he wasn’t doing well. This past week has been awesome although tough mentally on me. We were able to get out on Sunday and also on Tuesday evening for Lucas’ first play! Lucas did so great too! He had a speaking part and looked awesome in his green shirt 🙂 Logan did great both times.

Through all this, I was reminded we don’t know how much time we have with him. He is on so many meds it seems like, but when we go through the list and see what they do, they are all for comfort. He has managed to take his cannula off a few times. I felt it off once when he did this, to see how he was doing. His oxygen went down to 66 and he lost a lot of color. He didn’t panic though. He was trying to put the cannula back up to his face and started to panic when it wouldn’t stay. A few seconds after I taped it back on him, he was fine and carried on like usual.

He has been super chatty the past few days. I will stop whatever I am doing to talk with him and ask what he thinks. I love hearing his voice. He only says vowels, “eh” ah” and such, but he lets you know what he is thinking through his eyes. He has been doing great at eye contact once again. His new favorite toy is a penguin we got a St Louis Zoo. It is very soft. He likes to grab its wing and stroke it.

I’m finding it harder to stay in the moment. Brett says I have officially hit the stress limit for myself. Well…its been almost exactly six months since diagnosis so I think I have done a pretty good job lasting as long as I have. My headaches are back and I feel drained if I’m not occupied by something for Logan. His smile helps bring me back though. Sleep doesn’t seem to help, or else my body isn’t allowing me to sleep deeply. I have been so drained the past week, I barely replied to any texts. I have read everything though. I feel this down period will soon pass as well though. I will become accustomed to a “new normal”. Or at least I hope so. I need to go back through the bucket list and find easy/simple things we can accomplish. I don’t want to forget any moment with my baby boy ❤

Good morning!

Good morning!

2013-04-21 11.44.30

9 thoughts on “Two week update

  1. So glad to see your post tonite and hear that you and Logan are hanging in there. I’ve missed you on Scramble with Friends, and was concerned when nothing had been posted here on your site. You are constantly in my thoughts and prayers–as well as Logan and the rest of your family.

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  2. Just wanted to let you know that someone asked me about SMA today while I was in Target wearing my Logan shirt. I felt so good being able to tell someone about it.

    I wake up every morning and pray for my three kids and then for Logan. Your story has impacted my life in ways you will never know. I’m so glad to hear that Logan has been more alert. I can only imagine how wonderful that must feel for you.

    And let Lucas know that I’m really proud of how well he did in his first play!

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  3. You’re doing so well with Logan and Lucas! I’m glad to hear he is back to his smiley self…I love to see his happy face in your pictures. You are a brave, strong woman! Love those babies up for us …..

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  4. Thank you for the update. I have been thinking of you guys every day. I think you are doing an amazing job!! He looks so happy in his pictures.

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  5. what a truly amazing little man.
    Just wondering if you guys had twitter as i run a page raising awareness of SMA and would love to follow and support .
    Twitter: @Tinkers_Army1

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