Thursday, June 18, 2015

June 18 - Dear Nicholas Sparks (Guest Blogger Lisa Thibeau)

Dear Nicholas Sparks,

I want to tell you a story of a young boy who is now 13. He’s a survivor, a blessing, and a cherished son. He is patient, kind and loving.

Adam was born on August 14, 2002. No one knew how special he was going to be, not just health wise but how special he is in our hearts. Adam is one of 2,500 kids born every year with Congenital Diaphragmatic Hernia (CDH). He was undiagnosed so his poor parents were clueless. He was born at the wrong place, in Hammond, La, and the closest we could get him to the care he needed was almost 80 miles away. Transport by ambulance was to slow and to dangerous. He had to be life-flighted to Oschner Hospital in New Orleans, La and the transport team was very nervous about it. You see they know that babies that are as critical as Adam was at that time do not tolerate changes in altitude very well. I will never forget seeing him the first time when they brought him to my room and told me the plan. They were going to place him in the helicopter and fly just over the trees, water, and buildings until they got to the hospital and land on the roof. Thank God for talented pilots and well trained transport teams, they arrived safely and brought him one floor down to the NICU unit.

The next day, they let him rest until so that he could gather his strength for the coming weeks of his battle for life. My husband and mother in law were already there and had been overnight. When I was released it was a mad dash to be near him. I couldn’t be there right away there were things to do. Adam was not my first child, my oldest was 4 and in the care of her aunt for what was to be overnight. Until I could go home with my supposed to be healthy son. We had to figure out long term care for my iguanas who needed daily feeding, and my mother was dealing with some very serious personal business that I was at that time clueless of (her youngest son had been arrested the same day under some very serious charges).

When we finally arrived at the hospital my mother put me in a wheel chair, by the end of the day I was glad for it. We arrived on the 11th floor to the NICU to see him and they allowed me a few minutes to just sit there before the nurses and doctor came to talk to us and tell us the plan. Now sir, remember we were expecting a healthy child, we were expecting to be released and go home with a new baby, we were expecting to put him in the cradle in our room, this was not the case. I was in shock; it took a week for me to start mentally processing everything that was happening. The first thing I am told is, “DON’T TOUCH HIM!! He’s too unstable.” So they arrive with paperwork and sign this, and we need you to sign that, and sign here, here and here. I know what I am signing is for his care but I don’t know specifically what it says (I read EVERYTHING on a normal basis but I can’t comprehend what they are putting in front of me, it might as well have been Old English, like what Beowulf is written in) I could have signed over custody of him and not known. Dr. Vincent Adolph is his surgeon and he is planning the repair tomorrow, if all goes well tonight. We spend a good part of the rest of the day discussing plans and trying to figure out what to do. I can’t drive back and forth, we live too far away, my transmission is going out, my husband is unemployed and I have been on leave since I fell on July 3rd at work. My mom decides that we are staying at the hotel that is part of the hospital tonight and we will look into the Ronald McDonald house for the next few days.

Day 3: Surgery, Every thing went as planned the night before, he is stable enough for surgery. We visit him early and the doctor comes and tells us his plan. He is not stable enough to move to the surgical unit (on the second floor) but we do this all the time. They close the NICU for all visitors and do his surgery right there. By the time surgery is scheduled everyone is there our moms, our pastor, an aunt I haven’t seen since I was very young, and my youth pastor who has a CDH survivor. Dr. Adolph steps out to tell us his specific plan and prays with us. He tells us that he has seen miracles and believes in the power of prayer.

It’s hard to wait for him to come back out. So we sit and wait. My husband insists that I sit in the waiting room where there are padded chairs but there are other moms there waiting to see their precious children (theirs are every bit as precious as mine). Then I hear the worst thing I could imagine coming from another mom in the room. She’s on her cell phone talking to someone and she’s impatient, she tells her friend or whoever that she can’t get in to see her baby because, ”some brat is getting surgery!” I couldn’t believe that someone could be so cold, an infant is in surgery (my infant is in surgery) she had to know mom would be nearby if her baby was being sliced open. I got up and walked out. I’m tired, I’m sore from delivery, and I sat on the floor waiting until it was over.

The doctor comes out after it’s over and tells us it was worse than they thought. Adam was missing the entire right side of his diaphragm. There was no muscle tissue on the inside of his ribs to work with. They had to use a patch and sew it directly to his ribs, all the way around. He has a bad kidney; we don’t know if it has blood flow but we can wait to find out more later his other one is fine. His appendix was not in the right place so we removed it to keep him from being misdiagnosed if he ever developed appendicitis. We spend some more time with him and the councilor helps us get a room at the Ronald McDonald House.

Day 4-13: We got a call at 7 am. Adam had a very rough night. His oscillating respirator broke down and his saturations fell. They tried all they could to bring them back up but his pulmonary hypertension was too high and he was struggling to much. He needs ECMO. We are going to do the surgery right away. Dana (my amazing husband) and I fly out the door to go be with him by the time we get there they have finished and he is stabilizing. I am shocked by what I see, the only emotion that I have truly felt since he was born. There is a 1 inch tube coming from the main artery in his neck to a machine that is pumping his blood out, putting oxygen into it and pumping it back in. We again stay in the hotel (this time as hospital guests whose child is too critical to leave). My mom brings me my 4 year-old and makes sure we have food and necessities. For 10 days we let him rest while under constant care of a nurse and respitory therapist.

Day 14: They tried him off ECMO and he did amazing. They took him off and left him on just his respirator. He was doing well.

Day 15-20 We are letting him rest, letting him get stronger. We go home for the first time in 2 weeks

Day 21: Let’s try him off his respirator, he goes 12 hours before they have to put him back on.

Day 22: Lets try again, We make it!! Adam is breathing on his own. He is maintaining his saturations. They aren’t wonderful but he’s doing it.

Day 23: For the first time Adam is placed in my arms. For the first time I am holding this precious young man. Try feeding him they say. He needs to learn to eat. He will not attach to my breast. He’s throwing a fit. All his life he has had a respirator and tubes shoved down his throat. He wants nothing to do with it.

Day 26 – 60: Adam will not eat, he has to be tube fed and a therapist will come visit him until he does. He is still on oxygen but is transferred to the stepdown nursery. Let him get stronger and he will be able to come home. We are not sure when but he’s getting stronger. He does need another 3 surgeries during this time but they are not the dangerous repair, or the life threatening ECMO. They give him a fundoplication (they wrap his upper stomach around his esophagus to help him keep what he eats down) and place a g tube for feeding because it looks more and more like he will not eat for a long time and he is almost ready to go home. They discover a double inguinal hernia and repair it (he’s a holey kid).

Day 61: We get a call that he will be ready to come home soon, you need to come take your CPR course because we can’t let him go until you are certified.

Day 62: Adam can come home but you have to room in tonight so we can make sure all will be well.

Day 63: Adam is finally released and we go home for the first time, he is in his own bed (he’s to big for that cradle), for the first time I am completely responsible for this little life. My baby boy is finally home.

Since Adam left Ochsner we have been back only for check ups and one surgery. Praise God, his patch has held. He started eating when he was 11 months old, his g tube was pulled out at 13 months. He had almost 7 years of Speech Therapy. When he was 9 years-old we had to have a PDA repair. A valve in his heart did not close at birth like it should have. We were home that night, the repair was outpatient.

It’s been a great time watching him grow to the young man he is becoming. I am truly blessed to be his mom. I guess I’m really lucky as I love my teenagers (Skylar and Adam), watching them become adults is a pleasure. There is a little sister (Katelyn) that came when Adam was 3 (3 months before he turned 4). They are homeschooled because I believe that the education of a child should to a degree be self-directed. I believe that when you study what you are passionate about you will develop a better understanding of it. They are typical kids, video games, bike riding, and friends are what is important.

Thank You for listening to us,

Lisa Thibeau

Mom to a miracle!


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