Tuesday, July 24, 2012

Straight from Steve 1

Long update from Liam's daddy:
Ok here goes, more genetic testing was done this afternoon (7/23) for specific DNA markers however these tests require such elaborate equipment that only a handful of labs (2 that we know of) have the ability to perform them. The results may take up to 8 weeks to come back. Little Liams arterial line had shifted or was pulled back by him. Anyway, it had moved to a somewhat dangerous place and required the neonatal docs to bring in x-ray and try to get it back inside of a pumping artery. However, since he cannot have any type of tape to hold it down, it became extremely dangerous for him to leave it the way it was. A special type of monitoring equipment had to be added so that the blood pressure inside of this line could be monitored and hooked to an alarm to notify the nurses of any changes so if the line moved again or comes out he would lay there unnoticed and possibly bleed out.

We have another round table meeting set up for Wednesday Morning at 8am where the heads of each of the departments that are caring for Liam will be attending and the chief of pediatrics for Lebonheur will be collecting ideas as far as Liams ongoing care and the best facility to make that happen. There are several ideas being floated around but the best location we have found is Stanford University. I am trying to convince the NICU docs that Liams caloric and protein intakes must be raised from what he is getting now to allow for a higher absorption to the skin formations. He has started growing new skin in some areas today, however there is no way right now to tell or test if any of that skin is starting to attach.

Liam has 2 spots on his left forearm / wrist area that are of real concern right now more than the rest. These spots go deeper than just the epidermis layers which have the veins, blood vessels, and capillaries exposed to open air and are of great concern to all who have seen him because the opportunity for infection is great. I did numerous hours of research this past weekend and forwarded all my finding this morning to the NICU docs and the head of dermatology for the facility of different ways these areas could and should be addressed.

If you have not figured out by now I have a degree in Biology from the University of Maryland making a lot of the research tools available a bit easier for me to understand and one of the major things we are finding out is that doctors hate to be questioned... but we are not letting up on them. I figure if my precious "Little Lamb" is going to fight this horrific disease I am going to fight right alongside with him and lead the way.

We are in dire need of a (experienced) pediatric dermatologist who has dealt with this kind of situation. The only one in our area that the Hospital recommends has a GOD complex and is not open to any new data and research. His experience is with 3 patients over the last 30 years of his practice making him an expert in his mind.... I am searching desperately to find someone in this field that we can get to come to Memphis or allow us to come to them before during or after our stay at Lebonheur but have had no luck today.

Anyway that is the updates for today. When I left him tonight Liam was sleeping comfortable, had a drop of moms milk on his chin and was loving life... To all of you who have kept us in your prayers, sent items of need and continue to be an advocate for Liam, my family and I thank each and every one of you for joining us in Little Liam’s fight for survival. Please do not give up on him, because you can rest assured we will not! Until the last breath is out of my body Liam’s fight will go on!

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