Monday, January 28, 2013
Medically the past few days have been the same for Ian. They continue to do his pulmonary treatments every 2 hours and get lots of good gunk out of his lungs. He is tolerating all of them well, his eyes are moving and watching everyone and everything that is going on in the room. A machine beeps and the eyes start to move to figure out which one it is and if "he" did something. Most of the time he has not done anything, it is just an IV finishing or the machines like to beep when he is getting his treatments. They continue to get Ian into his wheelchair at least once a day, it still stirs up lots of gunk but he remains stable when transferred back into bed. The past few days they have been running a NIF (negative inspiratory force) which reflects the strength of the diaphragm and other inspiratory muscles. They are looking for his to be around a -20 and he has been ranging from a -7 to a -10. His chest x-ray from this morning was clear, you could see both lungs; here is to hoping it continues to stay that way and we can work on strength. In addition, they have started doing Ian on sprints, this is when they lower some of the ventilator settings so he has to work more. The hope is the more sprints the stronger his lungs will get. We are still working and hoping for extubation but as each day passes... the potential of not being able to extubate and a trach become more of a reality.
For me last night was a difficult one, the pain in my heart was huge, finding a way to ease it is something I have struggled with over the years, especially when he is sick. Watching your child in pain; struggling to do things he used to be able to do; seeing the loneliness in his eyes; the fear on his face when something is happening, he does not know what is going on and you can't explain to him (because you don't know what is going on yourself as well as you just can't explain it). Listening to him scream in pain, saying it's all the way down to his bones; having him as questions and not being able to answer them or if I can answer them, not being able to answer in a way he is going to understand and not frustrate him more then he already is. Over the years, we have tried to do what we feel is in Ian's best interest with the information we have at hand...sometimes the lack of information we have at hand...we are potentially at that crossroad again; making another decision for Ian with the information we have at hand....
Thank you to all who have continued to offer support...we still have a long road ahead of us with this bout...
I think you met my husband at a birthday party for one of the kids from school, but not me, which is why I've been hesitant to comment on any of your posts. Ian might know me as the person who is always running around the school, taking pictures for the yearbook :) Anyway, I want to tell you how reading this post brought back such a flood of memories from when our son was younger. There are always so many overwhelmingly huge choices that have to be made when your child has health issues. I don't know if it will help to know this or not, but, while making the decision to have a trach is incredibly difficult, breathing can be so much easier for the child. Our son had one for over a year and it was so much simpler to keep him comfortable. There is so much heartache in having to make those decisions, I know all too well. Even if I didn't know it firsthand, it pours out of your post. Please know that I am thinking of your family and hoping that things become easier for you soon. If you would ever like to talk, I am more than happy to listen. I, too, have lived in hospitals for months on end, made frighteningly difficult decisions for my child, and dealt with relatives and other people who just don't get it. We have plenty of friends in common and they can help you get in touch with me. Take care, Leslie Toll
ReplyDeleteTamara Jayne Flax One day at a time. One hour at a time. One second at a time.
ReplyDeleteSandra Huller wow....yes- one day at a time....thoughts, prayers, and LOVE to all of you!
Mary Fab Your little love is teaching each of us that know and love him many lessons each and every day. I hope you feel the strength we send to Ian, Becca, you, Brian and everyone in Ian's precious care. XO
Julie Goldman Egleston Marci! Please know you have so much love and support here in our home. Our hearts go out to all of you!!!! <3
Carye George Everett We continue to pray for you and understand how you feel.
Marci Weinberg Scher Carye George Everett I know you do....what time is your appointment tomorrow?
Helen Weisman Dagilis My heart goes out to you, Brian, Becca & Ian. Thinking of you all the time and wishing i could help ease the pain.
Donna Millman Marci, Ian, Becca and Brian....Dean and I have been following your blogs and praying that you all can somehow find the strength to continue to hang in there for that "Good Day". The day questions start getting answered and measures can be taken to move forward. We know how difficult it can be with the "Hurry Up and Wait" on medical answers. We will continue to send prayers and hope your way.
Rachel Schreiber Levitan Know that all of us who follow your blog appreciate how incredibly difficult it must be to share this challenging time. I hope that the pain I feel in my heart when I read them helps lessen the pain in your heart.
Sara Alima Ostrow Keeping you all in my thoughts and prayers.
Carye George Everett Tori's appointment is at 8:30. I emailed Dr Ahn today and told him that he needs to really think about admitting her. Last night was so bad, she ended up on every pain med I could give her and there was no relief.
Julie Onnembo Lots of love and good vibes sent to you all!
Alexandra Kaplan Pratz <3
Melissa Klawans Cohen Thinking about you everyday. We are all here for you and your family. Xo
Laurie Fox Schimmel Thinking of your amazing family! I am here if you need anything!! Xoxo
Kelli Maples Bethel Know that we are praying for all of you.
Lori Kaplan We continue to keep all of you in our prayers and want you to know that we are thinking about you every day.