Thursday, September 22, 2005


Yesterday was our care conference...and we had some disappointing news. Without going into too much detail, basically Max's lungs are still suffering from chronic lung disease because of his prematurity and time on the ventilator. There are some options the team is considering and several are not fun. Well none are "fun"...but some are less favorable than others in my opinion.

I am very, very frustrated right now with the medical team and I let them know it yesterday and meeting officially with a coordinator today to make my concerns heard loud and clear. Until I organized the care conference yesterday, there was little coordination among the different specialists...why did I have to be the one to focus everyone together? Some days I just want to be his momma...and not be worried that we are missing something medically. And there have been several instances recently that this has happened...I know I am his "best advocate" as everyone likes to say, but hey, aren't others watching out for him too? It is very frustrating because his attending doctors rotate so consistency is a big issue.

Additionally, Max had another one of his "spells" last my frustration is compounded with a lack of sleep. Eeks. I went and bought several books yesterday "Baby Whisperer", etc. to see if we can do something differently to appease him. I am hoping these spells are not medically related...but they are definitely quite confusing.

I have a special and very important prayer request today for everyone. First, please continue to pray for Max's nose (it is so cute without the stents). Second, please also pray...lots and lots... for the healing of his lungs. This is incredibly important. We are trying several treatments starting day...and the lungs must respond really well...or the docs will want to pursue some other more serious options. Thank you everyone for your love and support of us...Max really needs your prayers....and quite frankly, so do I. Love, Amy and Max


Meredith said...

Amy - The situation at the hospital sounds frustrating to say the least. Thank goodness you are so persistent in pursuing the best care for your angel.
Max - Davey and I are sending big hugs and kisses to you. We love you and will pray for your lungs and the rest of your cute self today and everyday.

Love, Meredith and Davey

Ruthie said...

Amy I am so amazed by you. You are the toughest woman I know. And it sounds like Max is just as tough. Between the two of you, I am sure that you can keep those docs in line and find something that will calm little Max's spirit. And thanks for telling us the specifics we need to ask for in our prayers. I know that it makes a difference. Take care, Ruthie

Anara said...

I also believe that positive thinking is powerfull too. I know that Max's lunges will react to the easier treatment..He just needs more time to grow inside and out. Each and every day is his body's chance to get stronger and his spirit to get sweeter. Heavenly Father is with you and Max. We will keep making sure to ask him for the most important areas that Max needs and that he continue to give you the strength to make it through each night and day. I just wish you didn't have the difficulty of dealing with the doctor's on top of everything else.
Give our little angel and hug and kiss for me, I love you two!!

Steph said...

Amy -- I can't imagine how frustrating this day was for you. On top of being Maxwell's wonderful momma, you're also his care coordinator...wish that weren't the case for your sake.

Hopefully they're listening to your concerns and will figure out a better way to coordinate themselves.

Thinking of you both each and every day...hoping and praying that good news lay ahead.

xoxo Steph