Our litte fighter, Lucas, was born on February 20, 2008 by c-section at 35 weeks and 5 days. He was beautiful and perfect. My husband and I found out we were having our second baby boy and were over joyed. Everything went great, the c-section was not a problem, Lucas was perfect and healthy, and they let us go home on Friday Morning.
Once we got home everything was awesome. Our 2 year old, Jacob, was estatic to have a little brother. Jacob couldn't stop kissing and loving on his little brother. The first night home was a breeze, this being our second child, we knew exactly what we were in for. But Lucas was full of surprises! The first night home he slept for almost 5 hours. I on the other hand was up every 20 minutes to make sure he was breathing. He was full of life, lifting his head, really alert, and was able to recognize voices. When he heard Jacob, he would try and look around to follow his voice. When my husband came home, lucas would do the same thing. When my husband, Joel, would hold him, he would nestle right up and snuggle as close a possible. Jacob would lean in and it was if Lucas was reaching back for a kiss. Sometimes I would bring lucas in our bed after my husband left for work and i would wake up to Jacob, waking both Lucas and I up by rubbing our noses.
This all changed on March 9, 2008. This morning he woke up at 8 am and I knew something was not right. I felt his forward and he was warm. Being an experienced mom, I took his temp and because he was running a low grade fever 100.5, I gave him Tylonel. You see lucas had a circumcision and they said if he runs a small fever just give him .04. So I did that and called my Aunt Vic and told her to still come and visit. Lucas drank a bottle when he woke up, was a little out of it, but I did not think anything of it. At noon, Lucas woke up but his whine was weaker than normal and he was not that hungry. Still I did not think much of it because he was still in the normal routine. By two oclock I was getting a little worried but he was still doing ok. By 4 pm, my aunt was leaving and my husband's sister stopped by. I asked her if Lucas felt warm and she said no, he is fine and looks fine. Well at 4:25 everyone left, but I knew something was wrong. Lucas was out of it, seemed to be not himself anymore. I got on the phone and called the hospital. It was Sunday and my doctor was not on call. I waited for a phone call back from the pediatric on call doctor. She returned my call at 4:45, she told me to immediatly bring Lucas to the ER, anytime an infant under 2 months of age runs a fever it is not normal and something is wrong. Now it is 4:50 AND I immediatly started getting Lucas bundled up, Wisconsin winters are cold. 4:55 My husband comes in and asks what is wrong and what is going on. Lucas is now lethargic and pastey white. I explain what the doctor said and go to the hospital by myself, Leaving Jacob the two year old with him, stating it is probably nothing and I will call you. 5:10 I arrive at the ER in Elkhorn WI. There is a room full of people and the ER is really busy. I wait for 5 minutes and then Lucas is taken into a room ahead of all these people waiting.
Now at this point you would think, I would get it, but not yet. They bring us in a birthing room, because it is the only one left. They have me strip Lucas down and all of a sudden the room fills with nurses, taking blood pressure, check all sorts of stuff. Things now start to blur, it is around 6 pm. I am being moved into another room. I am not allowed to get Lucas dressed. We wait, no word no doctor yet, I cover him with a blanket and continue to wait. At 7 Pm the doctor comes in and says We are being transported to Children's Hospital of Wisconsin. I ask do really have to and he says, Yes we dont take children under 2 years of age. Ok, i call my husband and tell him. I am still not worried at this point.
Then the doctor tells me they have to do a spinal tap to see what is wrong. Now it starts to hit me, someting is seriously wrong. He just said they dont treat infants and now is telling me he had to do a spinal tap. I choose to leave the room, I cant watch Lucas go through the spinal tap. I am frantically trying to get ahold of Joel. Finally, we connect and I tell him to drop Jacob off at my moms and get here quickly.
Then the doctor comes in and says Flight for Life will be getting Lucas and transporting him to Childrens. I brake down at this point, I call Joel and tell him drop Jacob off with his brother and get here now. During this time (8 o clock), the doctor starts administering antibiotics. (8:30) Lucas is completely out of it. I havent heard him cry for 9 hours. Joel gets to the hospital and they tell us flight for life is grounded. We now have to wait for an ambulance. 9:30 transport gets there and they start loading Lucas into the Isolate thing.
I did not know anything about Meningitis. The dont tell you in the hospital if your infant is running a fever to immediatly bring them in.
10pm they have everything attached to the isolate and the doctor walks in. Notifys the team and us that the test came back and it is gram negative. I say out loud, good now we know and we can take care of it (still not getting the severity of the situation fully). They all look at me a little funny. Transport gets lucas loaded on the lift for the ambulance and it breaks. We now have to wait to get him there, cant drive him ourselves, wait another 45 minutes for another amublance. 11 PM. We are finally on our way to Childrens Hospital.
11:45 We get to Childrens, they tell us Lucas was having siezures, they take Lucas to the Pediatric ICU and all of sudden we get the intensity of what is going on. Our little boy was put on a ventilator, hooked up to 12 machines, multilple tubes, and a lot more. We are asked to go wait in the family room until they get the central venous line in his leg, the artiriall line, and pic line in and we can come back in about 10 minutes, they will find us. (We dont know what is going on.)
2 am March 10th. The doctor comes and speaks to me and Joel. We have not been allowed to see Lucas since we first arrived. The doctor sits down and says he needs to explain what is going on. He tells us that Lucas has meningitis. It is in his blood stream, Lucas needs a CT scan but he is not stable enough at this point, he is having multiple siezures, they suspect brain damage, all his organs are shutting down, and our little boy will probably not make it throught the night. We needed to prepare ourselves. We need to think about our choices. He says, if Lucas survives, he will not be the Lucas we know, he will be different.
I cant explain in that moment what was going on. My husband and I clinged to eachother. We then were allowed to see Lucas. Needless to say 12 hours later Lukey was still here. He seem to be stablizing and we were able to do a CT Scan. The test came back and showed severe damage in both sides of the brain as well as continued swelling. There were so many black dots. Lucas was hooked up to a continous eeg machine. He was given a cocktail of 12 different meds. The doctors again sat us down and said our little guy was probably not going to live through the next 24-48 hours and we need to get call our family. He tells us that Lucas is septic and has proteus mirabellis bacterial meningitis.
I call everyone, I update everyone through email, giving them periodic updates about news. 2 days go by and Lucas is stable. He is slowly showing signs of improvement. On March 16, Lucas is taken off the eeg machine. His organs are coming back and fixing themselves. They start weening back the meds. Lucas is beating the odds. The siezures are subsiding. Days go by and he starts to come back, tracks, responds to our voice, showing real improvement. The doctors are amazed.
March 19, We have not held our baby in 10 days. He is still hooked up to multiple drips, Iv's, and machines, but his siezures are subsiding still. They let us hold him. I cant tell you how it felt to hold him again. My little baby was back in my arms. He may have been hooked up to lots of stuff but i cherish every moment.
I have spent every night at the hospital and joel has been commuting back and forth between the hospital during the day and home at night to be with Jacob. I have not seen our son Jacob who is 2. Jacob cant understand why Mommy and Lukey are not home. He doesnt understand Lucas is sick. We decide to bring him to the hospital. Jacob has a hard time seeing his brother with all the stuff and still all he wants to do is pick Lucas up and snuggle him.
March 21, The siezures come back stronger than before. Lucas gets put back on continous EEG. Lucas gets put back on multiple meds. Lucas starts slipping back into the coma state, so that the doctors can get the siezures to subside. He has another CT Scan and with each siezure it is causing more damage.
Between March 21 and March 26, the doctors try more meds. Phenobarb, Fosphenatone, Topamax cocktail. These seem to work as long as the doses are high. Now Lucas is on doses higher than an adult. Lucas still shows us signs of trying to track, he is reacting to our voices, and still proving the doctors wrong. They do an xray and see Lucas's left lung has collapsed. He is put on a breathing tube again.
March 27, 2008 we have a care meeting with all the doctors, nurses, rehab specialist, social worker, chaplain, and us. At this time we are told, they cant get the siezures to stop, the doses are too high and they cant give him more. The explain he has extensive brain damage and will not be able to walk, talk, respond,communicate, think, laugh, smile or have any quality of life. I ask the rehab doctor to tell me if he has ever seen another child like Lucas thrive or have a quality of life. The doctor is very nice and explains no, the almost positive probably outcome is that Lucas's brain will not grow because of the damage and this will cause his head to cave in. Lucas will not have a quality of life. Lucas will not be lucas. We make the decision to take Lucas home, keep him on meds to take the pain away, and give him siezure meds, so that he could be surrounded by those who love him in the place he was most comfortable. They say we can probably go home Monday (today is thursday).
This is the hardest decision we have to make. I know Lucas is ok when he is in our arms. I know he know we are there. I know he is still in there, but the siezures are horrible.
March 28, 2008 the last full day in the hospital. Lucas starts crying. I havent heard him cry in 28 days. I pick him up and comfort him and he immediatly stops crying. We told the neurologist we didnt want him in pain and absolutely did not want him to suffer. She did not listen and started to wien the siezure meds causing him pain and to cry. I flip out and get the paliative care doctor, the nurse, the treating piuc doc, and have an emergency meeting with them. I tell them this is not what we wanted and they agree. The fellow neurologist explains we are taking the (head neurologist) off the case and will do whatever we can to make him comfortable. Needless to say after the meeting, everyone worked very hard to get Lucas home as soon as possible. They were wonderful. I still dont understand why if we said no pain no suffering why that neurologist would wien the meds, but in that moment when Lucas cryed I knew he was still in there.
We have Lucas baptized Catholic. He is baptized by both the Priest from our local church and Chaplain Mary Kay. It was wonderful. His godparents, grandparents, brother, and us were all there.
March 29th, Lucas is transported home. We hold him all day long, talk to him, sing to him, our parents visit him. The home health care nurse makes sure we know how to use all the equipment, checks lucas out. We ask her how long before he passes. Her answer, probably a few days to a week. My husband falls asleep with Lucas on the coach. At eleven I take Lukey and tell Joel to go to bed. I stay up and sing and hold my baby. I eventually fall alseep. I wake up and suction him every 1/2 hour or so. I continually check that he is still breathing. I wake up at 4 o'clock and just breath him in. I love him so much, how can I do this, I cant let him go.
Sunday, March 30th, 2008, Lucas last day on earth. My aunt and uncle come over, my brother comes over, and the home health nurse checks in. Lucas seems to be doing good. He knows we are all here. He loves to have Jacob hold him. Jacob keeps trying to give him toys. Lucas keeps fighting. We ask the nurse again how long. She says his breathing is weakening and it will probably be a two or three days. Lucas suddenly gets a siezure. This siezure is unlike any other, it causes him to stop breathing and turn blue. He is in my arms and my husband is half holding him. My aunt calls all of the grandparents. Lucas starts breathing again, but after seeing the pain Lucas was in we make the choice to remove the feeding, remove the oxygen, and let him rest. My parents and Joel's parents were at our house faster than i thought was even possible.
Lucas lived for 2 more hours. He gave each of us a chance to say goodbye. He continued to fight until the very end. Lucas's will to live, was greater than anyone I have ever known. He passed in our arms, surrounded by those who loved him, knowing he was loved. We will love him forever and miss him everyday. In his short little life he showed all of us what it means to love unconditionally, to not take anything for granted, and to put others first.
Lucas Thomas Wolf, Our Little Fighter, we will love you always. We will thank god and you everyday for such a great gift.