Vulnerable. That is the best way to describe how I feel right now. I am being forced to completely open myself up, to this process, to what the doctors say is best, to allowing others in to help. It's incredibly hard for me. I am frustrated. I want to go home. I want Landon to be healthy. I want to take his place do he doesn't have to endure this anymore. I want to cry. I am crying. Everyone keeps telling me how strong I am and all I feel at this moment is sad and weak. I feel totally helpless. I just want to fix this. Maybe if it wasn't Christmas I would feel better. I doubt it though. This just totally and completely sucks.
Landon's hemoglobin is down to 7 today. He will receive a transfusion within the next couple of hours. I hope this helps his spirits. He seems tired and a bit cranky today. I am seriously irritable. I know he's getting tired of this place. We talked with our doctors and they gave us the ok to take him outside for a little bit. I hope the sunshine, blue sky and fresh air helps give him a little boost. I know it will be good for me.
Friday, December 16, 2011
Monday, December 12, 2011
Small Victories!
Warning: This may be TMI for some. Read at your own risk.
LANDON JUST HAD HIS FIRST SOMEWHAT FORMED POOP SINCE I CAN'T EVEN REMEMBER WHEN!!! Yes, I just shouted that! I almost took a picture because I was so excited but decided that just may be too much.
We're having a much better day and Boy Wonder is making great strides. He has been nothing but happy today. So far we haven't had any diapers containing blood and I don't think we're going to see one again. It is very clear that his little body is healing. He is also keeping Daddy very busy in the halls and playroom. He is still under what they want him to be taking in calorie wise. We're going to track that for a couple more days and see where we're at. He is totally eating like a champ! I am guessing part of his increase in appetite is due to all these junk foods he doesn't usually get. We're still holding strong on the no sugar though, for the most part. The steroids also help to increase his appetite and I know he's feeling better so that for sure makes a difference.
At this exact moment, my heart is happy.
LANDON JUST HAD HIS FIRST SOMEWHAT FORMED POOP SINCE I CAN'T EVEN REMEMBER WHEN!!! Yes, I just shouted that! I almost took a picture because I was so excited but decided that just may be too much.
We're having a much better day and Boy Wonder is making great strides. He has been nothing but happy today. So far we haven't had any diapers containing blood and I don't think we're going to see one again. It is very clear that his little body is healing. He is also keeping Daddy very busy in the halls and playroom. He is still under what they want him to be taking in calorie wise. We're going to track that for a couple more days and see where we're at. He is totally eating like a champ! I am guessing part of his increase in appetite is due to all these junk foods he doesn't usually get. We're still holding strong on the no sugar though, for the most part. The steroids also help to increase his appetite and I know he's feeling better so that for sure makes a difference.
At this exact moment, my heart is happy.
Answers. Sadness. Relief.
As we were waiting for Landon to come out of recovery, the nurse who took Landon from my arms as he was screaming and crying came to find us. She wanted to let us know that as soon as we walked away Landon stopped crying, put his head on her shoulder and fell asleep. She said she swayed and cuddled with him until it was time to lay him down for anesthesia. She said when they started the anesthesia he was already fast asleep. It made Scott and I feel so much better knowing he wasn't scared. In his little mind he was just taking a nap.
Wednesday evening was a little rough. Landon was again agitated due to the soreness from the scopes and coming down from sedation. I was an emotional mess and I couldn't figure out why. Shouldn't I be glad because we were finally given a diagnosis? I just wasn't there. I was extremely sad and feeling like I was somehow being punished for something. My thoughts were, "This isn't fair. Why Landon? Why Scott and I?" I was very confused by all of the emotions I was experiencing. I tried my hardest to find the optimism that usually comes so easily for me. It just wasn't there. Sure, I thought, "It could be worse. It could be a terminal illness." However, I was overcome with sadness and I was upset that it was even happening at all. I wanted to go back to July when Landon was totally healthy. Scott and I worked so hard to ensure Landon's optimal health and it didn't do any good anyway. That's how I felt. There were a lot of tears.
Thursday morning I woke up feeling a little more positive. I was able to get on line and read a bit more about ulcerative colitis and what it would mean for Landon. I was also able to talk more with Dr. Hattar and ask a few pointed questions. She was once again, wonderfully compassionate and patient with me.
Late in the morning we noticed that Landon's IV was causing him pain when the nurses tried to flush it. We decided to take it out, give him a break for a few hours then insert a new IV. We were so happy to have him free of it for a few hours! He seemed relieved too. He was happy and smiling. We were able to give him a really good bath, which he needed! It was a nice little break.
Then the time came to insert a new IV. We went in to the procedure room, which is located across the hall from our room. We had no idea what we were about to go through. The nurses got everything ready and we held him still while they tried to insert a line in to his left hand. The vein blew. They looked around and decided to try the right hand again. The vein blew. They tried his right arm. The vein blew. They tried his right foot. The vein blew. They tried his left foot. The vein blew. He was crying, we were crying, the nurses were extremely sad for us. It was awful. These nurses were the best of the best, trying to get a good vein, but it just wasn't happening. In total they brought in 3 different teams of people. His low hemoglobin levels made the job very difficult. We talked about the possibility of putting in a central line. They put a call in to our doctor and we decided to start him on oral steroids and reassess in the morning. Thursday evening Landon was still having some blood loss but was doing ok. The hemoglobin levels were up and down but not down enough to warrant another transfusion, thank God.
Friday morning Landon woke up happy, which was absolutely amazing considering all he had been through the night prior. We had a good day with him, however by that evening he had started to backslide on his progress. The blood loss picked up again and it was apparent that he wasn't responding well to the oral steroids. He needed to go back to an IV. Typically they like a person to get in at least 4-6 doses of IV before going to oral. He only got 2 before we had to pull the IV that went bad. I guess I was just hoping he would be the miracle child and 2 doses would have been enough. Unfortunately this wasn't the case.
Saturday afternoon we made the walk across the hall to the procedure room. I had talked to a friend who advised me to picture a warm white blanket of love surrounding Landon during this process. When we walked in, there was a white sheet draped over the exam table. It was great because it helped me with my visualization. I did my best to remain calm this time. I talked to Landon a lot, I told him how brave he was, how proud I was of him, how strong he was, how much I loved him, how much everyone loved him. I was able to stay a little more calm. I still cried though. Holding your baby down while they continuously poke and stick him is just heartbreaking. They tried to get an IV in 3 different sites and each time the vein blew. They discussed trying to put one in his head. Scott and I said no way. I couldn't stand the thought of putting him through that to only have another vein blow. We requested having a central line put in. Within moments of leaving the procedure room Landon was smiling and playing. That kid is just awesome.
Sunday morning we got Landon all gowned up. Scott walked around the halls with him laying on his shoulder for at least 30 minutes. At 10:00, they came to get Landon for the surgical procedure to insert the central line. Scott, Landon and I were all very calm and peaceful all morning. We got down to the surgical area where we met the anesthesiologist and surgeon. While we were speaking with them Landon wanted to come to me. I held him until it was time to go. The surgeon said she would carry him to the operating room. I looked at Landon and said, "You're going to go with Dr. Molik now and she is going to help you feel better." He went right in to her arms, no hesitation, totally trusting. They walked away and Landon didn't even look back at us. It was amazingly peaceful. Scott and I both cried. I know for a fact there were many people and entire churches praying for Landon at that exact time. In those moments I felt God's presence on the deepest level I've ever known. I have never felt His presence like I did that morning. It changed something in my heart. I have always heard of people who talk about how they feel God. I have a very strong belief and faith but I had never had the wonderful experience of feeling His presence. It was beautiful.
About 45 minutes later the surgeon came out to tell us she was finished. Landon did GREAT and would be out very soon. After he came out I held him for a good 2 hours. He slept on me, occasionally opening his eyes to see where he was. Then, all of a sudden, he perked up and was ready to play! He acted like he didn't even know the line was there. It has been in for 24 hours now and Landon is making some really good progress. Instead of us carrying him around the halls he is now running, yes you read this right, RUNNING around all over the place. We are certain that this is the turning point for him. It sure is good to see our joyful child returning.
Wednesday evening was a little rough. Landon was again agitated due to the soreness from the scopes and coming down from sedation. I was an emotional mess and I couldn't figure out why. Shouldn't I be glad because we were finally given a diagnosis? I just wasn't there. I was extremely sad and feeling like I was somehow being punished for something. My thoughts were, "This isn't fair. Why Landon? Why Scott and I?" I was very confused by all of the emotions I was experiencing. I tried my hardest to find the optimism that usually comes so easily for me. It just wasn't there. Sure, I thought, "It could be worse. It could be a terminal illness." However, I was overcome with sadness and I was upset that it was even happening at all. I wanted to go back to July when Landon was totally healthy. Scott and I worked so hard to ensure Landon's optimal health and it didn't do any good anyway. That's how I felt. There were a lot of tears.
Thursday morning I woke up feeling a little more positive. I was able to get on line and read a bit more about ulcerative colitis and what it would mean for Landon. I was also able to talk more with Dr. Hattar and ask a few pointed questions. She was once again, wonderfully compassionate and patient with me.
Late in the morning we noticed that Landon's IV was causing him pain when the nurses tried to flush it. We decided to take it out, give him a break for a few hours then insert a new IV. We were so happy to have him free of it for a few hours! He seemed relieved too. He was happy and smiling. We were able to give him a really good bath, which he needed! It was a nice little break.
Then the time came to insert a new IV. We went in to the procedure room, which is located across the hall from our room. We had no idea what we were about to go through. The nurses got everything ready and we held him still while they tried to insert a line in to his left hand. The vein blew. They looked around and decided to try the right hand again. The vein blew. They tried his right arm. The vein blew. They tried his right foot. The vein blew. They tried his left foot. The vein blew. He was crying, we were crying, the nurses were extremely sad for us. It was awful. These nurses were the best of the best, trying to get a good vein, but it just wasn't happening. In total they brought in 3 different teams of people. His low hemoglobin levels made the job very difficult. We talked about the possibility of putting in a central line. They put a call in to our doctor and we decided to start him on oral steroids and reassess in the morning. Thursday evening Landon was still having some blood loss but was doing ok. The hemoglobin levels were up and down but not down enough to warrant another transfusion, thank God.
Friday morning Landon woke up happy, which was absolutely amazing considering all he had been through the night prior. We had a good day with him, however by that evening he had started to backslide on his progress. The blood loss picked up again and it was apparent that he wasn't responding well to the oral steroids. He needed to go back to an IV. Typically they like a person to get in at least 4-6 doses of IV before going to oral. He only got 2 before we had to pull the IV that went bad. I guess I was just hoping he would be the miracle child and 2 doses would have been enough. Unfortunately this wasn't the case.
Saturday afternoon we made the walk across the hall to the procedure room. I had talked to a friend who advised me to picture a warm white blanket of love surrounding Landon during this process. When we walked in, there was a white sheet draped over the exam table. It was great because it helped me with my visualization. I did my best to remain calm this time. I talked to Landon a lot, I told him how brave he was, how proud I was of him, how strong he was, how much I loved him, how much everyone loved him. I was able to stay a little more calm. I still cried though. Holding your baby down while they continuously poke and stick him is just heartbreaking. They tried to get an IV in 3 different sites and each time the vein blew. They discussed trying to put one in his head. Scott and I said no way. I couldn't stand the thought of putting him through that to only have another vein blow. We requested having a central line put in. Within moments of leaving the procedure room Landon was smiling and playing. That kid is just awesome.
Sunday morning we got Landon all gowned up. Scott walked around the halls with him laying on his shoulder for at least 30 minutes. At 10:00, they came to get Landon for the surgical procedure to insert the central line. Scott, Landon and I were all very calm and peaceful all morning. We got down to the surgical area where we met the anesthesiologist and surgeon. While we were speaking with them Landon wanted to come to me. I held him until it was time to go. The surgeon said she would carry him to the operating room. I looked at Landon and said, "You're going to go with Dr. Molik now and she is going to help you feel better." He went right in to her arms, no hesitation, totally trusting. They walked away and Landon didn't even look back at us. It was amazingly peaceful. Scott and I both cried. I know for a fact there were many people and entire churches praying for Landon at that exact time. In those moments I felt God's presence on the deepest level I've ever known. I have never felt His presence like I did that morning. It changed something in my heart. I have always heard of people who talk about how they feel God. I have a very strong belief and faith but I had never had the wonderful experience of feeling His presence. It was beautiful.
About 45 minutes later the surgeon came out to tell us she was finished. Landon did GREAT and would be out very soon. After he came out I held him for a good 2 hours. He slept on me, occasionally opening his eyes to see where he was. Then, all of a sudden, he perked up and was ready to play! He acted like he didn't even know the line was there. It has been in for 24 hours now and Landon is making some really good progress. Instead of us carrying him around the halls he is now running, yes you read this right, RUNNING around all over the place. We are certain that this is the turning point for him. It sure is good to see our joyful child returning.
Friday, December 9, 2011
Finding Answers
First, here's a little history to help you all understand.
August 25th we noticed loose stools with Landon. He was otherwise totally fine so we chalked it up to some type of food intolerance. By Labor Day weekend we began to notice what we thought may be blood in his diapers. We showed one to a friend who has been an RN for many years and she confirmed that for us. We rushed off to the ER, scared and looking for answers. After 4 hours, they sent us home with essentially no answers except that it was definitely blood. We followed up with our pediatrician (Dr. Harrington), ran all sorts of tests and everything came back totally normal. They checked his hemoglobin levels and he was still in the range of normal at a 10 (12 is ideal). We did a lot of elimination diets and Landon would get better but then the blood would return. Last Friday I changed a diaper that was essentially all blood. It was by far the worst one he had ever had and it freaked me out! I called Dr. Harrington, to get a referral to a GI specialist.
Jump forward to Monday morning. I received a call back from the nurse at Dr. Harrington's office. The first opening at the GI specialist would be nearly 2 weeks away. I decided to go ahead and take Landon in to see Dr. Harrington for a check up, because he was losing interest in eating and drinking, and they were able to work us in right away. We saw her associate, Dr. O., because she was out on jury duty. I explained the situation we had been going through with Landon and she suggested taking a bit of blood to check his levels again. Landon very bravely and calmly gave up some drops of blood and we were on our way. I was to receive a call back from the nurse in about 30 minutes with our results. Within 15 minutes of leaving the office I got a call from the doctor. Landon's levels were at a 5! She said we were to go immediately to the hospital.
We arrived at Wesley Medical Center and got all checked in on the Pediatric floor. Then came the interrogationby the residents by ONE resident in particular. She kept questioning me about stuff that had happened back in September and October. Asking me to recall tiny little details and aggressively asking questions which made me feel like I was somehow responsible for what Landon was going through. She wanted to know whey we were currently following a gluten free/dairy free diet with him. She made me feel like I was doing something wrong by feeding him those foods. One stupid question she asked was why I was in the hospital for 3 days instead of 2 when Landon was born. "Uh, because he was born late Monday night, you idiot! Besides, what does that possibly have to do with what we're dealing with right now". That's what I thought to myself anyway. She then decided that we needed to stick with the gluten free/dairy free foods. So that was a good thing I was doing? Get out of my room, Lady!
The whole first day was awful. People in and out constantly, wanting to look at or poke around on Landon. Scott and I were beyond worried and scared out of our minds. We had to hold our baby boy down while they inserted an IV in to his tiny little hand. He cried. We cried and cried and cried. The attending physician decided not to do a blood transfusion at that time because they didn't feel it was necessary. None of us slept well. Scott went home to take care of business there while I stayed with Landon. For me, leaving him was not an option. We were told the GI specialist, Dr. Hattar, would be in to talk with us about getting a plan in action but that she wouldn't be in until Tuesday afternoon.
To our surprise, Dr. Hattar showed up Tuesday morning and we were very happy to see her. Within the first minute of meeting her I felt a connection and her compassion was instant and outward. While she was speaking with us Landon had a diaper I needed to change. She took a look at that diaper, full of blood, and I felt something change. She looked me right in the eye and said, "We can't have him bleeding like that. His numbers are at a critical level and we need to transfuse right away. I am going to talk with his team of doctors here and make this happen for you." As soon as I heard the word "critical" I began to tear up. Dr. Hattar put her hand on my leg and reassured me that we were not alone and that she would make sure Landon was well cared for. I looked up at her and she also had tears in her eyes. In that moment I felt safe with her, knowing she really cared and wanted to help Landon get well. Not only did she want him well, she also wanted to reassure me that all would be ok. I have never in my entire life had an encounter like that with a doctor. She was sent to me for a reason. One point of interest; we were originally scheduled to see her associate but she was out of town. It's no coincidence that we got Dr. Hattar instead. We were SUPPOSED to get her.
Landon went in for a Meckel's scan, which would check for Meckel's diverticulum. I would go in to more detail about that but there's no need because it came back negative. He was sedated for this scan, which concerned me because of his extremely low hemoglobin. I was a worried wreck for that hour! Landon got to have his very first popsicle while in recovery from sedation and he thought that was pretty awesome. He also began his first blood transfusion. We got to see two familiar faces while in recovery, Landon's friend Krystal who works in the nursery at our church and our friend Amy who works on the Pediatric floor. Familiar faces are always comforting. It was especially great for Landon to see someone he knew who had cared for him in a different setting.
Tuesday afternoon and evening were somewhat difficult, as we still had no answers. Landon was also very agitated as he was coming down from the sedation. They set him up for another scan Wednesday morning and if that was negative as well they would set him up for upper and lower GI scopes Thursday. Dr. Hattar decided not to wait and booked an operating room for his scopes Wednesday at 12:00. Did I mention that we had to keep him without food or drink during most of this time? Yeah, that was rough too! Try telling a 19 month old he can't have milk or even water. Not fun.
He received another transfusion Wednesday morning. Dr. Hattar wouldn't perform the scope unless his levels were at a 7 or above because the risk was just too high. We went down to the surgical area Wednesday at 12:00. Handing over my baby while he cried and screamed, "Mama, Mama!" was one of the hardest things ever! The procedure took about 30 minutes and when Dr. Hattar came out to talk with us we were very anxious to hear what she had to say. She came out with some pictures and described to us what we were seeing. Then she said it. Ulcerative Colitis. The words I had been hoping and praying we would not hear. All I could think was, "NO, not the autoimmune disorder. This is for life!" Dr. Hattar reassured us that we would not be alone, that she would be there with us every step of the way and that we WOULD make sure Landon received the necessary treatment to get well. She told us he would begin treatment immediately and that she would be back in the morning to answer all of our questions after we had some time to think and process everything. Although I was relieved to finally have an answer, I was overcome with a deep sadness. In that moment I went from simply being a Mama to being a Mama to a child with a chronic illness. It was quite a blow.
To be continued.......
August 25th we noticed loose stools with Landon. He was otherwise totally fine so we chalked it up to some type of food intolerance. By Labor Day weekend we began to notice what we thought may be blood in his diapers. We showed one to a friend who has been an RN for many years and she confirmed that for us. We rushed off to the ER, scared and looking for answers. After 4 hours, they sent us home with essentially no answers except that it was definitely blood. We followed up with our pediatrician (Dr. Harrington), ran all sorts of tests and everything came back totally normal. They checked his hemoglobin levels and he was still in the range of normal at a 10 (12 is ideal). We did a lot of elimination diets and Landon would get better but then the blood would return. Last Friday I changed a diaper that was essentially all blood. It was by far the worst one he had ever had and it freaked me out! I called Dr. Harrington, to get a referral to a GI specialist.
Jump forward to Monday morning. I received a call back from the nurse at Dr. Harrington's office. The first opening at the GI specialist would be nearly 2 weeks away. I decided to go ahead and take Landon in to see Dr. Harrington for a check up, because he was losing interest in eating and drinking, and they were able to work us in right away. We saw her associate, Dr. O., because she was out on jury duty. I explained the situation we had been going through with Landon and she suggested taking a bit of blood to check his levels again. Landon very bravely and calmly gave up some drops of blood and we were on our way. I was to receive a call back from the nurse in about 30 minutes with our results. Within 15 minutes of leaving the office I got a call from the doctor. Landon's levels were at a 5! She said we were to go immediately to the hospital.
We arrived at Wesley Medical Center and got all checked in on the Pediatric floor. Then came the interrogation
The whole first day was awful. People in and out constantly, wanting to look at or poke around on Landon. Scott and I were beyond worried and scared out of our minds. We had to hold our baby boy down while they inserted an IV in to his tiny little hand. He cried. We cried and cried and cried. The attending physician decided not to do a blood transfusion at that time because they didn't feel it was necessary. None of us slept well. Scott went home to take care of business there while I stayed with Landon. For me, leaving him was not an option. We were told the GI specialist, Dr. Hattar, would be in to talk with us about getting a plan in action but that she wouldn't be in until Tuesday afternoon.
To our surprise, Dr. Hattar showed up Tuesday morning and we were very happy to see her. Within the first minute of meeting her I felt a connection and her compassion was instant and outward. While she was speaking with us Landon had a diaper I needed to change. She took a look at that diaper, full of blood, and I felt something change. She looked me right in the eye and said, "We can't have him bleeding like that. His numbers are at a critical level and we need to transfuse right away. I am going to talk with his team of doctors here and make this happen for you." As soon as I heard the word "critical" I began to tear up. Dr. Hattar put her hand on my leg and reassured me that we were not alone and that she would make sure Landon was well cared for. I looked up at her and she also had tears in her eyes. In that moment I felt safe with her, knowing she really cared and wanted to help Landon get well. Not only did she want him well, she also wanted to reassure me that all would be ok. I have never in my entire life had an encounter like that with a doctor. She was sent to me for a reason. One point of interest; we were originally scheduled to see her associate but she was out of town. It's no coincidence that we got Dr. Hattar instead. We were SUPPOSED to get her.
Landon went in for a Meckel's scan, which would check for Meckel's diverticulum. I would go in to more detail about that but there's no need because it came back negative. He was sedated for this scan, which concerned me because of his extremely low hemoglobin. I was a worried wreck for that hour! Landon got to have his very first popsicle while in recovery from sedation and he thought that was pretty awesome. He also began his first blood transfusion. We got to see two familiar faces while in recovery, Landon's friend Krystal who works in the nursery at our church and our friend Amy who works on the Pediatric floor. Familiar faces are always comforting. It was especially great for Landon to see someone he knew who had cared for him in a different setting.
Tuesday afternoon and evening were somewhat difficult, as we still had no answers. Landon was also very agitated as he was coming down from the sedation. They set him up for another scan Wednesday morning and if that was negative as well they would set him up for upper and lower GI scopes Thursday. Dr. Hattar decided not to wait and booked an operating room for his scopes Wednesday at 12:00. Did I mention that we had to keep him without food or drink during most of this time? Yeah, that was rough too! Try telling a 19 month old he can't have milk or even water. Not fun.
He received another transfusion Wednesday morning. Dr. Hattar wouldn't perform the scope unless his levels were at a 7 or above because the risk was just too high. We went down to the surgical area Wednesday at 12:00. Handing over my baby while he cried and screamed, "Mama, Mama!" was one of the hardest things ever! The procedure took about 30 minutes and when Dr. Hattar came out to talk with us we were very anxious to hear what she had to say. She came out with some pictures and described to us what we were seeing. Then she said it. Ulcerative Colitis. The words I had been hoping and praying we would not hear. All I could think was, "NO, not the autoimmune disorder. This is for life!" Dr. Hattar reassured us that we would not be alone, that she would be there with us every step of the way and that we WOULD make sure Landon received the necessary treatment to get well. She told us he would begin treatment immediately and that she would be back in the morning to answer all of our questions after we had some time to think and process everything. Although I was relieved to finally have an answer, I was overcome with a deep sadness. In that moment I went from simply being a Mama to being a Mama to a child with a chronic illness. It was quite a blow.
To be continued.......
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