Tuesday, July 31, 2012

Straight from Steve 7

Wow! What a day, is all I can say. It started out going so wrong and ended up turning out to be filled with such hope and promise for the next couple of days. Let’s see…so I was really upset when I headed over in the morning and demanded to speak with someone from administration. And the first person they sent to me was the head of the PT department. She seemed (forgive my expression) like tits on a bull...useless. She gave me just the most politically correct answer she could. But she knew I wasn’t buying it.

The next monkey they sent in the room was a 75 year old man who literally pulled up to my sons room on some form of motorized vehicle, walks in, and says he is the Patient Advocate. I felt like I needed to help him into the chair before he collapsed. The first question he asked was "I hear there’s been a mistake?"  So, being in the loving and caring mood I was in I told him your “Damn right there’s been a mistake and I think it was coming to Lebonheur!” His next question to me was "So you don’t want to be at Lebonheur?" And I told him “If this is the type of care you guys give” showing him the pictures from the day prior “no, not at all.” He said “OK” and thanked me for my time and walked out the room. I was floored! This is the Patient Advocate??? So now I feel like I am 0 for 2.

Now it’s time for rounds, and all of the people who are caring for Liam are in the room and lining the hallway, I estimate the number to be 15 to 20 of them. I am thinking to myself “If you have any hope of getting something done, here’s your shot.” The neonatologist starts asking about how the weekend went. SO, I let him and everyone standing around have it. I told them what had transpired and I passed the pictures around for all to see. I guess my thought process was that maybe just one of these people would see the devastation in the pictures and help. So in order to keep things flowing, the head doctor said we would be having a private meeting after rounds were done.

At 2pm we met with the whole group and about 10 others from various departments in the hospital.  Most of them apologized for what had happened to Liam and promised it would not happen again and that the staff here has been in contact with Stanford University and that STANFORD IS WILLING TO TAKE LIAM AS THIER PATIENT, but that Lebonheur is not ready for him to leave yet. The doctors here have certain criteria they want met before letting him go. So anyway, this meeting lasted for another hour or so. OH, and I almost forgot the only person not to show up all day was the Pediatric Dermatologist (or GOD as he likes to think of himself).

After the meeting ended I felt a pulling on my arm and it was the clinical Director of the NICU telling me to follow her to her office, so I did. Once the door was closed she told me that we really need to find a new Dermatologist and that she has the name of the doctor that St. Judes Children’s hospital next door uses. I thought “HALLELUJAH!” And for those of you who have not been following Liams story from the beginning, we were told that there was no other Dermatologist in this whole region able to see Liam.  Now there was this shimmer of hope. I immediately thanked and told this lady “God bless you!” and rushed out to find this man’s number.  I called his office, and was told if we wanted Dr. James Turner to come and visit Liam, that he would be tickled to death to do so ONLY the NICU docs had to call his office first and give the referral. Hmmmm…now what do I do? How do I explain this one to the NICU docs and how do I tell them I got the name and number of this man? AND the Clinical Director asked me not to tell anyone she gave me this info, so please let’s keep this between me and all 19,000 of you reading this...lol.

For the first time since arriving at Lebonheur the Chief of Medicine came here to Liam’s room and spent at least 3o minutes one-on-one with us and apologized for misleading us all this time about there not being another dermatologist in the area to see Liam. He has been in contact with Dr. Turner and all that Dr. Turner would say to him was that he only wanted to talk to us, as Liam’s parents, and no one else.

At 5pm I received a call on my cell phone from Dr. Turner who spent a good 45 minutes with us.  After talking, he has committed to coming and seeing Liam this evening between 5 and 6 pm and is willing to take on his case. We are so excited that there’s new hope.  And not only is he coming tonight, but Dr. Turner said it was very ironic we called him, because on Thursday night he is putting on a seminar for all of the dermatologists in the region with the topic being EB.  In fact, he is personally flying in a specialist out of New Orleans to give a 2 hour speech on the topic. He also said he is going to get this person to stay overnight here in Memphis and come visit Liam Friday morning. I am so excited to say the least. 

Anyway I got to go for now as it is time to go check on the Prince, but please keep praying as there is hope Liam will find his way through all of this madness.


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