Tuesday, July 31, 2012

Straight from Steve 8

OK ladies and gentlemen, I am here and ready to pass along some great new!!!

I must start out by saying that I think Tammy and I are going to have to split up, because I have a new love and his name is Dr. James Turner (pediatric dermatologist). OH MY GOD is all I can say! This is the most incredible man on this earth right now to me. He is in total agreement with EVERYTHING we have been saying and trying to do from day one. Not only is he going to be taking care of Liam he saw a spot on my arm tonight and said "You got someone looking at that?" Of course I said no, so he said “Let me give you something to take care of it and when I see Liam in my office for the first time remind me and I will make all that go away for good.” Now this is something I have been trying to get rid of for 30 years, Man, I just wanted to kiss him!

He was there the entire time Liam’s dressings were changed. He took notes, a lot of photos, and wanted to know who everyone in the room was and what they were doing there. Later on in private I told him it was all a big dog and pony show because they knew he was coming.
Amazing!!!!!!!!!!! That is all I can say about this man. My heart and soul are lifted.  I told Tammy about 30 minutes ago that my chest feels like someone lifted 200 pounds off of it. Dr. Turner and I made a partial list tonight of things he will address in the morning with Lebonheur of all of the things he expects to be done in the next 24 hours. Also, he is writing orders for every little thing we asked him for like sheepskin blankets, medications, and plastic surgeon consults. Praise the Lord there is hope after all.

Needless to say I FIRED the doctor with the God complex this evening.  The looks I got from the head of medicine in the NICU and nursing staff were priceless. I mean, my chest is so puffed out right now, I am not sure I am going to fit through the doorway tonight. I know this is not going to be the cure of all cures, but you know what? When you have someone who is going to listen to what you have to say and not prejudge, that sure makes you feel good.

This man is also putting on the seminar Thursday night in Memphis for all the regional Dermatologists and the only topic of the night is EB. He is flying in a lady from New Orleans to speak for 2 hours. And when she is done, he is putting her up in a hotel here in town and bringing her up to see Liam on Friday morning. This lady is supposedly an expert on EB and travels the country speaking. I am just amazed there are people out there like this man.  
He also informed us that on Friday afternoon he has to be in Las Vegas for a consult and had planned to stay until Monday.  However, he is going home to change his flight to come back Friday evening so he can spend time with Liam this weekend.
Well, I told Tammy that I was going to keep it short tonight, so I just want to say THANK YOU to all of you who have been donating and praying for Liam, because I truly believe this doctor was sent to us by a higher calling. Tammy and I have much love for all of you and GOD himself so thank you once again and good night from Memphis.

God Bless

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.


Monday, July 30, 2012

Straight from Steve 6

Headed to the hospital this morning, wish me luck! I am going armed with photos and an attitude in hopes that something is done. This hospital has too many good people here, to let a few bad apples spoil the bunch.

Sunday, July 29, 2012

Straight from Steve 5

Good evening everyone. I finally have a few minutes to update everyone since Tammy, Chloe and Baby Liam are all asleep in his room…it’s a precious sight. Anyway, the day started out as any other day. I headed to the hospital at 9am since the dressing changes were not planned to start until 10:30am. My goal was to get there an hour or so early to speak to the doctors about adding the Zantac that a bunch of people had mentioned giving to him before the dressing changes.  But once I got there, Liam’s nurse informed me that the PT department decided to come early today and that the dressing changes were already done. She also made the comment to me that they were able to get the changes done in record time. What normally takes 2-3 hours with my help they were able to do in 45 minutes without me. Needless to say I was a little concerned at how they pulled this off and of more of a concern was the fact that they did it without even giving us a courtesy call. 

I went into his room with the nurse, only to find my beautiful butterfly was a MESS! (I am including a picture of what I found when I arrived) His left leg was not wrapped up to his thigh as it always is and there is a good size area that was left exposed to the air and open for infection. The gauze was not even up past his knee which is just lazy and sloppy. His back and torso were really dry. Not even a drop of Aquaphor was put on him.  And when I tried to touch him my gloves were sticking to his skin. At this point I am extremely PISSED!

I called for the charge nurse, who took one look at him and turned right around and called the PT department back to his room. Can you believe the PT tech that did the work on him had the nerve to walk in the room and try and tell me that "This is not the way I left him." Now mind you, the nurse who was there said that PT had just left 10 minutes earlier. I asked her why she failed to even roll the gauze up high enough to cover the rest of the wounds and she told me she did, but LIAM must have undone it! So I asked her to show me where the gauze is in his bed that LIAM must have removed and all she could say is “I don’t know.”

So now I am supposed to believe this 9 day old baby waited for the PT to leave the room, sit up on his own, unroll his dressing, remove the adaptic dressing, wipe himself clean of Aqauphor and then find a way to make it to the garbage and hide the evidence? But it gets better…I left the room and explained to PT that I would be back shortly and I expected it to be right and I would be inspecting it once they were done. Surprise, surprise, when I got back they were gone and now Tammy was with me.  I looked at Liam and handed him to Tammy to hold, only to find out that the only thing Liam is laying on is a pillow case that had his own blood all over it! They didn’t even take the time or tell someone that all this blood was under him or tell someone that this baby was laying in all this! I AM SO UPSET right now and cannot wait until the morning to see the supervisor of the PT department.

Feel free to chime in and tell me what everyone thoughts are as to what I should do.

Friday, July 27, 2012

Mommy Spotlight 2

I am truly a blessed woman. I have a beautiful family. My friends are amazing! And their family and friends are amazing as well. I never thought that one little tiny 7 pound baby boy could make the world come together like they have. I am just in awe at the kindness and generosity of people I have never met.

Mommy Spotlight

I am so blessed to be this little boy's mommy. I see strength and love and so many other powerful things every time I look at him. He somehow has turned in to my rock at this point instead of the other way around. He looks at me and seems to know what I need from him and gives it to me. He is so loved and I am so very thankful to each and every one of you for your continued support. It means everything to me anmy family. This little boy was put on this Earth with a purpose and no matter what he grows up to be, he will always be my hero for showing me what true compassion is by bringing all of you into my family. Thank you all and most of all Thank you God for blessing me with this beautiful child.

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.

Straight From Steve 3

Good evening everyone, I have finally had a chance to get to a computer and update all of you on today’s events.  I am sorry, but I think it might be a long update tonight as it has been a trying date for Liam and all involved.  As you already know, this morning at 8am we had a meeting with all of the powers to be here at Lebonheur and as I explained to the group before we parted ways, an hour and 45 minutes, later I am more confused, pissed off and disappointed in all of them than I was before the meeting started.

The meeting started out with the genetics group trying to explain to me the basics of DNA and how it works.  I allowed them to speak for 15 minutes, before I had to interrupt them and school them on a few things and when that conversation was done between them and I, the head of the Genetics made the comment that she had no idea that I was as versed in the situation as I am and that she was amazed at all of the research we have been doing.

I then diverted all of my attention to the Dermatology group (or GOD as he likes to be called). They started out their presentation with the fact of how dire it is that Liam have this expensive skin biopsy done right away today so that they can test his one good spot on his right arm to make a half uneducated guess as to whether or not that one spot is EB or Cutis Aplacia. The thoughts and ideas of the Dermatology group was passed around for what seemed to have felt like forever and I have never in all my life seen so many doctors in one room who are supposed to be working together, not be able to agree on an approach of action going forward. This is about a little over an hour into the meeting and I LOST IT!!!

I threw my notebook into the middle of the floor and yelled “ENOUGH!”. I explained to all of them that I was going to write on a piece of paper the word “YES” and the word “NO” really big and that I wanted to go around the room and ask each one of them to answer one simple question and that question was “Can a child of my sons age have EB and Cutis Aplicia at the same time, on different parts of his body?”.  Simple enough question so I thought. HOWEVER, after polling all of the doctors in the room, to my amazement the room was evenly split.  So, at this point I realized that I am now dealing with a group of doctors who cannot even tell me if we are about to biopsy for the right thing or not in a few hours not to mention what we are looking for. 

This post I am typing cannot even express the frustration I am feeling right now!  My emotions are still raging even as I type this to all of you. I had several come to me after the meeting and tell me they understand my frustration... but how can they? It’s not their son lying there looking up at them saying "Help me dad" and I feel like I am failing him. I can’t even compile a group of doctors who agree on what to do for him. So anyway, let me move on so I can stop crying right now.

There was a secondary meeting, after the original meeting, with myself and the head of pediatrics who just happens to be Liam’s doctor and he went on to explain to me that it was in Liam’s best interest to have a biopsy so that the genetics of his disease could be tracked going forward.  After a long bout of discussions I gave in and around 11am Liam had his biopsy done.

He was given a good amount of Morphine and Darvocet, and all of the area they punch biopsied was given a local, so I think it was relatively painless.  But because of the drugs, Liam spent the entire rest of the day in a drug induced kind of coma and did not eat hardly anything. Liam also had another dressing change on his arms and legs that I did take several pictures of since he was so calm and still lying there in his "little coma".  (see below-warning as they are graphic in their nature)

There are 6 pictures from today.  Some are better than others. Any opinions out there would be greatly appreciated and if my wife or I do not get back to you right away it’s that we are being bombarded with emails, texts, and Facebook inquiries, not to mention trying to do what’s best for the big man here.  So please bear with us.  We will be getting back to each of you shortly and thanks again.  As always the help and prayers mean a lot to me and my family.

Wednesday, July 25, 2012

Straight from Steve 2

I met with the head of genetics this afternoon (Tuesday) only to find out that the DNA markers have not been isolated as of yet, which means the biopsy's being done tomorrow will take longer to compare.

I am very pleased though that we are having a massive meeting with NICU docs, dermatology, genetics, Hope for Humanity, and many others involved in Liam’s care at 8am central time to discuss the future of Liam’s care and to determine if California is where we are headed next with him.

I can also tell you the preliminary results are in from yesterday’s culture of some material removed from one of his wounds that was thought to possibly be infection starting...but turned to be nothing! That is great news because right now infection is the enemy.

When I left him a few minutes ago he just ate, had a clean dry bed, and was comfortable, Oh and smiling...probably gas :). Today's photo of the day is of the happy prince getting a kiss from his two favorite women before bedtime.

Once again I want to thank everyone for their hard efforts and all of the prayers that are coming in from all of you for all of us. Love and hugs from the Stearns Family and forever indebted to all of you.

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!