Monday, January 21, 2013

Monday, January 21, 2013

Last night and today have been good, again the goal is to still keep Ian comfortable and calm. He has slept on and off most of the day....I would think that is from the infection...yes he does have another it's a good thing they started him on the other antibiotics the other day. The x-ray from this morning shows and completely different left lung then the one from yesterday morning. It was much clearer and only appears to have a small section which is still collapsed. So being on the vent seems to be helping as the doctors were hoping. At this point, they are talking about keeping Ian intubated for at least another day or two. This is a risk for Ian, as his lungs are weak and the longer her is intubated the harder it will/may be to get him extubated. With this in mind, we are planning on having a meeting with all the necessary players....PICU, Pulmonology and ENT, to discuss our options and for us to learn more about the prospect of a trach. Ian has gotten good at communicating with his eyes to let us and the nurses know what he needs; as well as we have been showing them all of his likes and dislikes....they are getting good and remembering them. Ian is as comfortable as he can be, they do have him lightly sedated to help with any discomfort he may be having from the intubation tube. 

As for the rest of us....we are taking it day by day, we have been keeping Becca her language and terms on any major changes. She does know that he has a tube helping him to breath. When I was talking with her tonight, she asked me if it was in his neck...I told her no but that lead into the trach and that he may have to have one. So we talked a little bit about that, looked up on the internet pictures of people intubated and people with trachs. Then she said she needed to see a picture of Ian, so Daddy took one and sent it our way. She was very happy to see him but said she wants to see him in person not just in pictures....told her I know and gave her a long hug....then like any 9 year old...she wanted to know if she could play on the computer. So as I sit here and update the blog on my precious little boy, my precious little girl is sitting next to me playing a monster high dress up game.

XO to all.


Anonymous said...

thinking of all of you. love Ian's newly decorated spidey room and lego masterpiece! Saw becca this am - with the big announcement of how much longer with braces. :) Shannon A

Anonymous said...

Kendra Bober Just thinking about you...hugs from us.

MJ Queen-Purk Continued well wishes! I was trached almost 6 years ago and it was the right decision for me. If you or Becca have any questions that I can help answer, please don't hesitate to write to me anytime

Marci Weinberg Scher Thanks I know you's just hard...a lot to take in when you are not expecting it.

MJ Queen-Purk Absolutely! I was more prepared than my father was but he now asks why we didn't do it sooner. I know that Ian's form of SMA is different but it is extremely important that he not be sedated 24 hours prior to extubation. It will greatly hinder his ability to breathe on his own. I don't know if you have access to the protocols for SMA and extubation but if you want them, just let me know.

Marci Weinberg Scher I am not sure I knew that...the 1st time with all this he was only intubated for 10 hours. The 2nd time it was for a little bit over 24 hours and I think he was slightly sedated both times...I will have to check on the drugs....too much information in my brain to remember the names...

Jay Weiner Hugs and love to all of you

Elena Lucini French XO to you too. Conrad and Logan are waiting for baited breath for the blog updates. They are ROOTING for Little Man! And we're so glad to hear that Becca is taking it all in stride. PLEASE call if you need anything.

Emily Michelson Levin Thoughts and prayers for continued progress. :)

Stacy Berman Lunenfeld Always thinking of all of you. We wish the best for your little superman!

Jill Gerber Katz We are sending our thoughts and prayers Ian's way for his continued progress and comfortable days ahead. Shannen is glad to hear Ian is holding his own and looks forward to seeing Becca at school tomorrow and says she hopes Ian can return to school sometime soon.

Melissa Klawans Cohen Just thinking about you. Xo

Carol Zika So sweet. Hugs to you.

Charles R Hentz At least Brian isn't playing the Monster dress up game right? Love to you all from us all. XOXO.

Lois Fleischman Shurkin I ask about you everyday. My thoughts and prayers are with you and your entire family. Love to you.