(I know that this is way past due...I wrote this for Luke right after his 1st year birthday party, but never got around to posting it. Thought you ought to read this one before the next one that I'm about to post. --Rachael)
May 27, 2010
Dear Friends and Family –
Look who just turned one year old! Wow, what an adventure this first year has been for me and my parents! The last time I wrote you a letter, I had just come home from the hospital for the first time, and I was four and a half months old. A lot has happened since then.
Once I finally got home in October, I got to stay home for about three and a half months. When I was eight months old, my heart doctor, Dr. Kao, told my Mamma and Daddy that it was time to start thinking about my second heart surgery. She had me go in to the hospital to make another movie of my heart. The night after I made my heart movie, I got very sick with a virus called CMV. Even though I was only supposed to spend one night in the hospital, I had to stay a couple of weeks.
Finally, my Mom and Dad got to take me home, but not for very long. Before even a day had passed, they decided that I was still too sick to be home, so they took me back to the hospital. That was a very scary trip, because my oxygen got really low, and I had another seizure. I stayed in the hospital for about another week before I went home again. This time I got to stay home for awhile, but my heart and lungs never worked as well as they did before I got CMV. My mom and dad were tired and scared because I had to work really hard to breathe and get the oxygen that I needed. Before I went into the hospital to make my heart movie, I was just about ready to breathe on my own all the time without the ventilator. After I got CMV, I had to use the ventilator again almost all the time.
About two and a half weeks after I got out of the hospital, my Mom, Dad, and Dr. Kao decided it was time to do my next heart surgery, even though they would have rather waited until I had gotten all the way well from having CMV. So I went back to the hospital, and they scheduled my surgery for about five days later. God took very good care of my family during this time. Just a few days before my surgery was scheduled, God revealed to the doctors that I had another infection. The doctors told my parents that if they had done my surgery while I had an infection, I probably would have died. I ended up having pneumonia, and I had to wait about four weeks before I had my surgery. During that time, my lungs got very, very sick. The doctors had to hook me up to a machine that gave me a gas called Nitric Oxide that helped my lungs get more oxygen in them. They had to make it so I was asleep and extremely still all the time.
Finally I got better from pneumonia, and I got to have my second heart surgery. Since the recovery from my first surgery was so difficult, my parents were very scared that this time might be the same. When my Mom left me to wait for my surgery to be over, she kissed me and told me not to do any funny business. I didn’t! God took such good care of me! My surgery went very smoothly, and I got to go straight back up to my room. I didn’t have to go on ECMO or anything! All the doctors (and my Mamma and Daddy) were amazed at how well I did through my surgery and recovery. Part of that day was sad though, because I had to say goodbye to my neighbor in the next-door hospital room. She went up to heaven about an hour after I got back from my surgery. My parents were very sad for that baby girl’s family, but also very relieved that I didn’t go to heaven too.
I got to go home only 10 days after my surgery this time. But only a week later, my parents had to take me back to the hospital because I was acting very strangely. The doctors discovered that the sodium in my body was very low. It was so low that I would have died if they didn’t get sodium back in my body very quickly. I had to stay in the hospital for almost two more weeks after that. Even though the doctors ran tests and didn’t see that my brain had been damaged, I took some steps back in my development, especially in how I eat. Before my sodium dropped, I could eat a whole jar of baby food every day. But now, after two months of hard work, I can only swallow a little bit of cereal.
Just about a week ago, I had to go back to the hospital to have a whole bunch of tissue removed from my throat. The doctor took it all out so that I can breathe out of my nose and mouth instead of using my trach to breathe out. The doctor says that my airway is really small, and I might need to have another surgery on my throat to make it bigger so I can breathe without my trach someday. I hope everybody prays that God will make my airway bigger so I don’t have to have another surgery.
Right now, I’m doing really well and having a lot of fun. I weigh 22 pounds! I still get almost all of my food from my feeding tube, but I’m working really hard on learning to eat solid food again. I only use my ventilator when I’m sleeping at night, and I’m about to get rid of my ventilator completely. I can sit up by myself for just a little while without falling over, and I love sitting and playing in my Jumper or my Exersaucer. My Mamma says she thinks I’ll crawl before too long. Even though I hate to be on my tummy, I’m getting really good at pushing my head up. I used to have to be in my crib all the time, but now I spend almost all day up and about. I even get to go to church every Sunday now. I’ll be leaving soon to go on my first trip out of Dallas. I’m going to my Aunt Hannah’s wedding in Albuquerque. I can’t wait to meet all my friends and family that have been praying for me over there.
A lot of very hard and very amazing things have happened this year. My parents hope that a lot of very good and very amazing things happen this coming year. I want you to know that my doctors have been working really hard to make me well, but even fantastic doctors like mine can’t do everything. God is really the person who is making me well. I want him to have all the credit. God has helped my family through so much. We have learned to rely upon him and take each day one at a time. We are so thankful to be a family at home all together.
Thank you for praying for me and my family. I get better and better every day, but I still like it that you pray for me. My parents still need a lot of encouragement because I need extra special care. Thank you everybody! I hope that God blesses you like he has blessed us!
Love,
Luke
May 27, 2010
Dear Friends and Family –
Look who just turned one year old! Wow, what an adventure this first year has been for me and my parents! The last time I wrote you a letter, I had just come home from the hospital for the first time, and I was four and a half months old. A lot has happened since then.
Once I finally got home in October, I got to stay home for about three and a half months. When I was eight months old, my heart doctor, Dr. Kao, told my Mamma and Daddy that it was time to start thinking about my second heart surgery. She had me go in to the hospital to make another movie of my heart. The night after I made my heart movie, I got very sick with a virus called CMV. Even though I was only supposed to spend one night in the hospital, I had to stay a couple of weeks.
Finally, my Mom and Dad got to take me home, but not for very long. Before even a day had passed, they decided that I was still too sick to be home, so they took me back to the hospital. That was a very scary trip, because my oxygen got really low, and I had another seizure. I stayed in the hospital for about another week before I went home again. This time I got to stay home for awhile, but my heart and lungs never worked as well as they did before I got CMV. My mom and dad were tired and scared because I had to work really hard to breathe and get the oxygen that I needed. Before I went into the hospital to make my heart movie, I was just about ready to breathe on my own all the time without the ventilator. After I got CMV, I had to use the ventilator again almost all the time.
About two and a half weeks after I got out of the hospital, my Mom, Dad, and Dr. Kao decided it was time to do my next heart surgery, even though they would have rather waited until I had gotten all the way well from having CMV. So I went back to the hospital, and they scheduled my surgery for about five days later. God took very good care of my family during this time. Just a few days before my surgery was scheduled, God revealed to the doctors that I had another infection. The doctors told my parents that if they had done my surgery while I had an infection, I probably would have died. I ended up having pneumonia, and I had to wait about four weeks before I had my surgery. During that time, my lungs got very, very sick. The doctors had to hook me up to a machine that gave me a gas called Nitric Oxide that helped my lungs get more oxygen in them. They had to make it so I was asleep and extremely still all the time.
Finally I got better from pneumonia, and I got to have my second heart surgery. Since the recovery from my first surgery was so difficult, my parents were very scared that this time might be the same. When my Mom left me to wait for my surgery to be over, she kissed me and told me not to do any funny business. I didn’t! God took such good care of me! My surgery went very smoothly, and I got to go straight back up to my room. I didn’t have to go on ECMO or anything! All the doctors (and my Mamma and Daddy) were amazed at how well I did through my surgery and recovery. Part of that day was sad though, because I had to say goodbye to my neighbor in the next-door hospital room. She went up to heaven about an hour after I got back from my surgery. My parents were very sad for that baby girl’s family, but also very relieved that I didn’t go to heaven too.
I got to go home only 10 days after my surgery this time. But only a week later, my parents had to take me back to the hospital because I was acting very strangely. The doctors discovered that the sodium in my body was very low. It was so low that I would have died if they didn’t get sodium back in my body very quickly. I had to stay in the hospital for almost two more weeks after that. Even though the doctors ran tests and didn’t see that my brain had been damaged, I took some steps back in my development, especially in how I eat. Before my sodium dropped, I could eat a whole jar of baby food every day. But now, after two months of hard work, I can only swallow a little bit of cereal.
Just about a week ago, I had to go back to the hospital to have a whole bunch of tissue removed from my throat. The doctor took it all out so that I can breathe out of my nose and mouth instead of using my trach to breathe out. The doctor says that my airway is really small, and I might need to have another surgery on my throat to make it bigger so I can breathe without my trach someday. I hope everybody prays that God will make my airway bigger so I don’t have to have another surgery.
Right now, I’m doing really well and having a lot of fun. I weigh 22 pounds! I still get almost all of my food from my feeding tube, but I’m working really hard on learning to eat solid food again. I only use my ventilator when I’m sleeping at night, and I’m about to get rid of my ventilator completely. I can sit up by myself for just a little while without falling over, and I love sitting and playing in my Jumper or my Exersaucer. My Mamma says she thinks I’ll crawl before too long. Even though I hate to be on my tummy, I’m getting really good at pushing my head up. I used to have to be in my crib all the time, but now I spend almost all day up and about. I even get to go to church every Sunday now. I’ll be leaving soon to go on my first trip out of Dallas. I’m going to my Aunt Hannah’s wedding in Albuquerque. I can’t wait to meet all my friends and family that have been praying for me over there.
A lot of very hard and very amazing things have happened this year. My parents hope that a lot of very good and very amazing things happen this coming year. I want you to know that my doctors have been working really hard to make me well, but even fantastic doctors like mine can’t do everything. God is really the person who is making me well. I want him to have all the credit. God has helped my family through so much. We have learned to rely upon him and take each day one at a time. We are so thankful to be a family at home all together.
Thank you for praying for me and my family. I get better and better every day, but I still like it that you pray for me. My parents still need a lot of encouragement because I need extra special care. Thank you everybody! I hope that God blesses you like he has blessed us!
Love,
Luke
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