Monday, May 28, 2012


This was the happy sight I walked into today:

(Trach collar instead of vent and a free arm and leg! Little man is hap-py to have his arm free again. )

Which is by far better than this 

(Where we started.)

Thankfully they were able to get another IV in his hand about 20 minutes before the head one gave up two days ago. Talk about good timing. And this is what we found on the IV board

Quite an appropriate quote from John J Rambo. Thanks to the one and only Jibrii who got the IV and also took the time to look up a situation/child-appropriate quote from Rambo. He said it took longer to find the quote than to get the line. This I believe. 

Here is where Ben and I have been spending our time

The new Children's Center is quite nice. There are certainly its ups and downs. For example: the couch and chair are ups. Standing in the hallway for 3 minutes looking for someone to suction him is a down. I'm torn. 

Today because Rambo was off the vent I got to do this

Which I haven't been able to do in 6 days. 

So, why the hesitation when I say progress? Because I still can't really say that there is any. He is at the moment no longer vent dependent, but the issue is that his lungs haven't improved. So although he is much more comfortable with the trach collar, the question is how long should we leave him like this? Will he inevitably wear himself out and end up in the same position he was a week ago? All these are questions that can't be answered, we just have to feel our way through. The plan (until someone decides to change it- which will most likely happen) is to keep him on the collar for today, if he can handle it, and give him some vent support at night. I like this plan. That's how I know it won't happen. Generally, if it makes sense to me someone changes it. Plus, there is a new team that starts rounding tonight so that's another reason I'm not convinced the plan will remain the same. We'll just have to wait and see.

It's weird seeing him back on a vent. He hasn't been on one in over a year so this feels like a huge step backwards. In reality, it wasn't... I suppose. He just needed the extra support to get over this virus. (Which unfortunately hasn't gone away yet.) But it's hard to not think that it's going to slow him up. I hope that he gets out of here soon and still can and still wants to roll and almost crawl and play. He's a resilient little boy for sure. And on a good note, because I can now hold him and he is free to somewhat move, his mood has improved and he fell asleep in just over an hour today as opposed to it taking him 2-4 hours.

Please pray the doctors know what is best. That they don't get ahead of themselves. And that Theodore's lungs start showing improvement. 

All in all, it's been a much better day. And I may even ever so quietly whisper that there was some improvement :) Nobody say it too loudly though.


  1. Amanda.....

    Once again I am in awe of not only your endurance but also your all consuming patience!! You amaze me in every post. We just found out that our youngest has pneumonia as well but they sent us home with a shot in the leg and antibiotics. I will continue to pray for you guys and an supporting you from tennessee.

    Love, leah smith (jenkins)

  2. So weird that they added a Ben to the new children's center. Who would need one of those???

    Awesome quote. Glad to know that things have gotten better. Miss you!!