Thursday, July 26, 2012

Straight from Steve 4

Another eventful day for all involved. Liam had several visitors today from the outside including Erica Meeks and family as well as Claire Livingston and family.  We truly appreciate all of the support for our big man.

The morning meeting started out with the nutritionist telling us that if Liam does not start eating more than 40 cc's at a feeding by tomorrow, they are going to have to put a feeding tube in him (which is not going to be fun).  The second thing was Liam’s skin is now a midgrade shade of yellow and after lunch a Bilirubin test was ordered.  The results came back as expected and his Bilirubin is too high.  He is now under the ultraviolet lights for the next 24 hours and another blood test will need to be done to check for progress.

Now on to the dressing change for the day. Liam was given Tylenol with codeine, sweet water and formula all while they tried to perform the painful dressing changes on his bandages on his arms and legs.  Needless to say, about 30 minutes into the dressing change, all of the formula he drank came back up like a scene from a scary movie. Which means then he took in even less than the 40 cc's they want him to keep down. I foresee a feeding tube coming either tomorrow or Saturday.  They have been trying to decide amongst themselves whether or not to give my prince a bath tomorrow. However, the literature I have read says not to bath him until all of the lesions on his body have completely healed over to prevent a painful experience.  So to all of you EB moms out there and nurses this is where i could use a little advise on this one......

Mr. Liam did drink a formula/moms milk mix this evening and took 60 cc's without issue so all we can do is keep trying new things and hoping and praying for the best. If there ever was a child that GOD needs to put his hands on it is my precious Liam. It seems so hopeless on days like today, when all I can do is pray that his little body will make it through all of the stuff the doctors are putting him through. Anyway here is the pic from tonight just before I left and rest assured he is not happy with the mask over his eyes since now not only is he going through all of this crap but now he has to do it with blinders on.

And before I forget there are two beautiful women that are trying to orchestrate a large fund raising event in the New Albany, MS area for Liam, around Aug 11th I believe they told me tonight.  However, they can use a bunch of help even if it is in the way of supporting them getting the word out there.  So I am going to include their names and phone numbers in this post in hopes all of you reading this may know someone who can help them with ideas and suggestions. It sounds like a really big party with food, drinks, live music, farm animals and pony rides.  Oh, and face painting and stuff like that for the kids.  So please anyone able to call or text, or send an IM I know they would appreciate it. 

Anyway that’s all for tonight unless anyone has a question I need to answer before starting additional research, returning emails, IM's and texts from all of you generous folks that have touched our lives and that of Liam to the point that we can never repay you except to genuinely say we are blessed beyond all belief to have friends and family and a new community to reach out to like all of you. God bless and good night from Memphis.

No comments:

Post a Comment