I feel like I just got punched in the gut. Brad and I were just talking on the phone discussing our plans for the weekend when he says, "Oh that is the cardiologist calling my cell phone, I will call you back." About 30 min. later he called back. Dr. Mack, called and talked for a minute about the Cath and the scare we had yesterday and then he said, "Well, Dr. Kaza wants us to go ahead and schedule his Glenn." Brad I think about fell out of his chair. He was like, wait a minute let's back up. After the Cath we were feeling pretty comfortable that the Glenn was still a ways off. After a long conversation with Dr. Mack it has come down to doctor's not agreeing on the same thing. Dr. Mack and Dr. Cowley (the doc who did the Cath) both feel like Logan has time to wait before his next surgery, but for some reason- I don't think we have all the facts yet, Dr. Kaza thinks we should do it now. We also got more bad news. The last few appointments we have seen that the position of his overriding tricuspid valve was looking more promising to be able to patch his VSD. This was GREAT news because that would mean he would have a 1 1/2 ventricle repair and not need the Fontan. Dr. Mack said today that Dr. Kaza wasn't thinking it was very likely he would be able to repair the VSD not because of the position of the valve, but because the valve is not functioning properly. This was the biggest blow. If he gets the Fontan he will most likely need a heart transplant down the road, and they have more limitations throughout their life. This was just heart breaking news for me as his mom.
Brad told Dr. Mack we weren't ready to schedule the surgery. We needed time to think about this because just minutes before we again thought we had months before surgery. After Brad told Dr. Mack this he sounded relieved. Brad told him we wanted to get some second opinions. Dr. Mack was completely on board with this. He said he would get copies of all Logan's recent Echo's and his Cath together for us to send out for more opinions. I called his pediatrician too and he gave me a name of another surgeon to contact to get a second opinion.
So here we are. This morning I just got done telling my neighbor that all was well and hopefully we wouldn't have anything going on again for a few months.... and now we are looking surgery straight in the face.
I wish I understood more, and I wish medicine didn't have to be so variable. I trust the doctors, but I also know they don't know everything. It is so hard to trust them with the life of my child. My dad keeps reminding me that we don't trust entirely in the arm of flesh, but we have to trust God. I know this, and I hope somehow we find peace with a decision. If it comes down to us needed to go out of state to give Logan the best care, that is what we will do. Some how this will all work out- It has to.
The Journey of a Sweet Little Boy and His Special Heart
Friday, October 8, 2010
Thursday, October 7, 2010
All Because of these Two Little Feet
These two little feet have caused quite an eventful day today. The picture doesn't do it justice, but if you notice the top foot is a little more pale than the bottom.
So I took Logan to Dr. Lei, his pediatrician, for his 4 month well baby visit. As the nurse put him on the table to measure his height she goes.... wow, his foot is white. She kept pinching it to see the capillary refill- there was none. So I knew I wasn't crazy the last two days thinking something was wrong. When the doctor came in, of coarse it wasn't as bad. This happens so intermittently that I really do start questioning if I am just paranoid. Dr. Lei checked things out and couldn't feel a pulse at all anywhere in his right leg. This was very concerning to him... obviously. He went right in and called up to the cardiologists at Primary's. They said come directly there, and don't make any stops.
Brad's work was on the way so we did make a tiny detour to get him, I wasn't about to do this alone. In the meantime I called a neighbor to take care of Ashlyn and Tanner, called my boss at 24 hour Fitness to get my class covered for the night, and tried not to panic. The last few days I knew something wasn't right- its not normal for your leg to change colors and not have a pulse, but I was never freaking out. I knew things were okay, but I also knew we needed to be sure and check everything out.
Two different Cardiologists checked Logan out at the Hospital. Of coarse when they were looking at him his leg never turned white. They said they could "kind of" feel a faint pulse in his leg, and they thought he would be okay. This wasn't OKAY with us, we wanted to be sure. So we insisted he have an ultra-sound. His leg did turn white for the Radiologist, but the blood flow through his femoral artery looked great. They compared his right leg to his left leg and it was significantly different, but they weren't sure why. The Radiologist talked with both Cardiologists and they agreed that although it was weird, they weren't too worried. So they said to keep giving him Aspirin to avoid any blood clots and they sent us on our way.
There you have it.... just another day in the life of the Gunnell's.
Brad and I were calm through the whole thing. My mom on the other hand was SO worried. She was just leaving out of town when she heard we were on our way to the hospital. She decided she wasn't going anymore because she was so worried about Logan- I insisted she go. I knew he was going to be okay. There were so many prayers said for him, and I KNOW they always help. We have so much support. My neighbor not only took care of Ashlyn and Tanner she also cleaned my house, and had dinner made for us when we got home.
SO BLESSED ARE WE.
So I took Logan to Dr. Lei, his pediatrician, for his 4 month well baby visit. As the nurse put him on the table to measure his height she goes.... wow, his foot is white. She kept pinching it to see the capillary refill- there was none. So I knew I wasn't crazy the last two days thinking something was wrong. When the doctor came in, of coarse it wasn't as bad. This happens so intermittently that I really do start questioning if I am just paranoid. Dr. Lei checked things out and couldn't feel a pulse at all anywhere in his right leg. This was very concerning to him... obviously. He went right in and called up to the cardiologists at Primary's. They said come directly there, and don't make any stops.
Brad's work was on the way so we did make a tiny detour to get him, I wasn't about to do this alone. In the meantime I called a neighbor to take care of Ashlyn and Tanner, called my boss at 24 hour Fitness to get my class covered for the night, and tried not to panic. The last few days I knew something wasn't right- its not normal for your leg to change colors and not have a pulse, but I was never freaking out. I knew things were okay, but I also knew we needed to be sure and check everything out.
Two different Cardiologists checked Logan out at the Hospital. Of coarse when they were looking at him his leg never turned white. They said they could "kind of" feel a faint pulse in his leg, and they thought he would be okay. This wasn't OKAY with us, we wanted to be sure. So we insisted he have an ultra-sound. His leg did turn white for the Radiologist, but the blood flow through his femoral artery looked great. They compared his right leg to his left leg and it was significantly different, but they weren't sure why. The Radiologist talked with both Cardiologists and they agreed that although it was weird, they weren't too worried. So they said to keep giving him Aspirin to avoid any blood clots and they sent us on our way.
There you have it.... just another day in the life of the Gunnell's.
Brad and I were calm through the whole thing. My mom on the other hand was SO worried. She was just leaving out of town when she heard we were on our way to the hospital. She decided she wasn't going anymore because she was so worried about Logan- I insisted she go. I knew he was going to be okay. There were so many prayers said for him, and I KNOW they always help. We have so much support. My neighbor not only took care of Ashlyn and Tanner she also cleaned my house, and had dinner made for us when we got home.
SO BLESSED ARE WE.
Wednesday, October 6, 2010
Concerns
Today Logan looks PERFECT.... except when you lay him down. Everytime I lay him down his right foot goes completely white and there is no capillary refill in it. We called the Cardiologist who did his Cath and he said it sounded like there could be a blood clot so to give him Aspirin. We already have an appointment scheduled with his Pediatrician tomorrow so we are suppose to have him check things out. Hopefully that goes well.
These are just some pictures we snapped of him today.
He is getting so big!
This is what I look forward to EVERY night. He is a snuggler and I hope that never changes. I could sit and hold him like this for hours. This kid melts my heart.
Tuesday, October 5, 2010
Cardiac Cath Photos
I snapped this picture of Logan on the way to the hospital. I sat next to him in the backseat the whole drive up. I always feel so guilty that he has NO idea what is about to happen to him.
Logan sporting his hospital "get-up"
Logan sampling his clothes... if I wasn't going to feed him he decided he would find his own nourishment!
Have you ever seen a sweeter picture? We waited in the OR waiting room forever. This was 5 1/2 hours since he had last eaten, and he still didn't cry. He thought he would give sucking his thumb a try!
Can you see his red hair? I am in LOVE! And so were all of the nurses. I just can't get enough of those big eyes and red hair.
Loves his Daddy!
Post-Op
They finally took him into surgery around 11:30 and we were back with him by 3:00. He was pretty sleepy the rest of the time at the hospital.
His face is red from a drug they give him beforehand to dry him out, and he is a little "puffy" from all the IV's, but he still looks great. He ate like a champ (this was about the only time he took a bottle from me). The only concern was they had a hard time finding a pulse in his right leg- the leg they entered for the cath. The nurses could never really find the pulse, but when the doc came in he found it right away.
We were discharged around 7:00pm and came home for a very LONG night. He had slept the day away and hadn't eaten all day, so naturally he wanted to be awake and eat ALL night!
Monday, October 4, 2010
Cardiac Cath
I am sitting in the recovery room of Primary Children’s Hospital watching my son’s chest rise and fall, rise and fall. It is steady, the monitors aren’t beeping at the moment, and he is sleeping peacefully. We came in this morning for a Cardiac Cath. Dr. Mack, Logan’s Cardiologist was concerned at his last appointment that the pressure moving across his PA Band was too high, and wanted to make sure things were okay. This procedure has alleviated a lot of anxiety Brad and I have had over the last month. The Cath went really well. The doctors and nurses here LOVE Logan, he is always such a mellow baby and so well behaved. They found the pressure across the band was a lot lower than they had originally thought and that even with the large hole (his VSD) between his ventricles his blood is moving into the right places more efficiently than they have really seen in others with this same problem. Logan is bound and determined to ALWAYS beat the odds- I am okay with that. They are having a hard time finding a pulse in his right leg right now (that is the leg they entered the artery in to get to his heart), but other than that he is looking good and sleeping a lot. The best news is that they don't forsee him needing his next surgery for at least 2 months- possibly even up to 6 months. That gives him more time to grow and gain strength.
I had to be done feeding him at 5:30 this morning, and they didn’t take him back for surgery until 11:00am. And the only time he cried was when they put the IV in. He was AMAZING, and relished in the fact that he was held for 3 hours straight! He loves to be held, and I love to hold him so it works out well for the both of us!
I did everything I could to prepare for this surgery. I didn’t allow the kids friends over this past week to avoid any sickness or germs. And of all the nights for Ashlyn to get the flu- it had to be last night. She started throwing up around 1:00 am, and well the rest of the night was history. I am functioning on 2 ½ hours of sleep at the moment. I feel completely drained, but relieved to have this over at the same time.
It is looking like we will go home tonight. The only question is the pulse in his right leg, so hopefully that gets a little stronger and we can get some rest at home.
Sunday, October 3, 2010
The Start to Logan's Heart Journey
When Logan was born he appeared to be an extremely healthy baby (scoring a 9 on the APGAR test). We had a perfect hospital stay with absolutely no problems, so we were discharged after 2 days with a big thumbs up! The only concern was he was borderline jaundice so his pediatrician asked us to bring him in to have that checked out when he was 4 days old (I am thankful EVERY day for a cautious pediatrician). It was at that check that we first heard the words, "Your baby has a heart murmur."
We left that appointment concerned, but not freaking out because after all up to 50% of babies are born with mild heart murmurs. We just assumed Logan would be one of those. It was 2 days before we could get an appointment for an Echo so Dr. Lei (his pediatrician) asked to see us back the next day. It was at that appointment I think we all realized it was more than just a mild heart murmur. I could see the concern written across the doctor's face. The murmur was even louder than it was the day before and he could hear it in the right side of his body and in his back. I cried, Brad stayed composed... we didn't have all the facts yet- that is for sure. I don't think anything could have prepared us for what was to come.
The next day we spend 7 long, emotional hours at Primary Children's Medical Center. The Echo itself was 2 hours of unbearable silence. We had NO idea what was about to hit us. I think Dr. Mack tried to soften the blow when he explained what they found in the Echo. He asked a million questions about symptoms Logan might be showing- the answer was "No" to everything- he was a perfectly healthy baby, so I was feeling pretty confident that things were okay. Then he drew a picture and started explaining what was wrong with my baby's heart. This is where our world as we knew it was tipped upside down and we entered into the reality of Congenital Heart Defects. Life hasn't been the same since.
Logan was diagnosed with Hypoplastic Right Heart Syndrome, VSD, and an Overriding Tricuspid Valve with an enlarged Left Heart.
The next week was a blur. It was hard to grasp the reality that my prefect looking baby had so much going on inside his little body. He had his first surgery, Pulmonary Artery Banding, when he was 2 1/2 weeks old. We look at this surgery as a kind of "band aid" to give his body time to grow and get strong enough for the surgeries he will need down the road. (To read about our experience with this surgery click here.) The next surgery will be the Glenn (in the next few months).
5/2/11
It is time to update Logan's story as much has happened in the last 6 months. At Logan's routine cardiologist appointment in Sept. Dr. Mack was concerned the pressure going across his PA band was too high and he needed to have a heart cath to measure the real pressures. He had a heart cath in October and this is where life got a little crazy. We had a lot of doctors with difference's of opinion after the cath. Some said he had months before needing the next surgery while others said he needed surgery immediately. Brad and I were so confused and frustrated. We aren't doctors and won't ever claim to be, but we needed to feel confident in Logan's care and we weren't getting that. His doctor suggested maybe we start asking for a second opinion. We sent his records out to CHOP (Children's Hospital of Philadelphia), Stanford, and a cardiologist at John Hopkins. After getting back all the information they all agreed that Logan was a candidate for a 1 1/2 ventricle repair, possibly a full repair.
We traveled to Philadelphia in December 2010 for Logan's 2nd surgery. Dr. Spray operated on him and did a complete 2 ventricle repair. He felt fairly confident in the surgery- he said Logan did great, but he was concerned that his Tricuspid Valve was deformed and a lot smaller than they had anticipated. Logan seemed to be doing great at first, but 3 days post-op Brad and I noticed something was not right. Logan was refusing to eat, seemed extremely agitated and uncomfortable, and looked miserable. Logan had gone into acute, severe heart failure. The right side of his heart was backing up so much with blood that the atrium wall was bending the wrong direction and he had major pleural effusions (fluid) on his lungs. We were moved back to the ICU to get him stabilized and they worked to get the fluid off his lungs. After a few days another heart cath was done to determine the next step. During the cath they popped open the atrium to try to alleviate the pressure building up in his heart, but it still wasn't enough. Just 10 days after having a major open heart surgery Logan was going back for another major open heart surgery. Dr. Spray tried every possible repair to at least make him a 1 1/2 ventricle heart, but his tricuspid valve was so unreliable and small that he had to patch over the valve and take him to a single ventricle. We were devastated at the outcome, but realized that we tried EVERYTHING we could. We traveled across the country to the best surgeon in the U.S. and Logan was given the best care possible so we have to trust that this is God's will and His plan for Logan.
Logan had a rough recovery from these 2 surgeries back to back and we ended up being in Philadelphia for 4 weeks before we finally said we needed to bring him home for him to recover. We had been away from home too long. After returning home his recovery went so much better. He loved being back with his sister and brother, and so did Brad and I. He came home on oxygen and was on oxygen full time until April 1st where we have been able to just have him on oxygen at night now. He is doing so well now. He is growing and developing like a healthy kid. So the plan is to watch him carefully, and again let him grow until he is at least 30 lbs where he will then need another surgery to complete the single ventricle anatomy called the Fontann.
He is our little Superman and a true warrior. He is such a blessing in our lives and has taught us so much. Through his heart journey we as his family have found strength we didn't know we had, faith beyond anything we have known, and a love that grows exponentially every day. This is definitely not the journey any parent would have chosen for their child to have to endure, but we will continue taking this journey with him every step of the way.
We left that appointment concerned, but not freaking out because after all up to 50% of babies are born with mild heart murmurs. We just assumed Logan would be one of those. It was 2 days before we could get an appointment for an Echo so Dr. Lei (his pediatrician) asked to see us back the next day. It was at that appointment I think we all realized it was more than just a mild heart murmur. I could see the concern written across the doctor's face. The murmur was even louder than it was the day before and he could hear it in the right side of his body and in his back. I cried, Brad stayed composed... we didn't have all the facts yet- that is for sure. I don't think anything could have prepared us for what was to come.
The next day we spend 7 long, emotional hours at Primary Children's Medical Center. The Echo itself was 2 hours of unbearable silence. We had NO idea what was about to hit us. I think Dr. Mack tried to soften the blow when he explained what they found in the Echo. He asked a million questions about symptoms Logan might be showing- the answer was "No" to everything- he was a perfectly healthy baby, so I was feeling pretty confident that things were okay. Then he drew a picture and started explaining what was wrong with my baby's heart. This is where our world as we knew it was tipped upside down and we entered into the reality of Congenital Heart Defects. Life hasn't been the same since.
Logan was diagnosed with Hypoplastic Right Heart Syndrome, VSD, and an Overriding Tricuspid Valve with an enlarged Left Heart.
The next week was a blur. It was hard to grasp the reality that my prefect looking baby had so much going on inside his little body. He had his first surgery, Pulmonary Artery Banding, when he was 2 1/2 weeks old. We look at this surgery as a kind of "band aid" to give his body time to grow and get strong enough for the surgeries he will need down the road. (To read about our experience with this surgery click here.) The next surgery will be the Glenn (in the next few months).
5/2/11
It is time to update Logan's story as much has happened in the last 6 months. At Logan's routine cardiologist appointment in Sept. Dr. Mack was concerned the pressure going across his PA band was too high and he needed to have a heart cath to measure the real pressures. He had a heart cath in October and this is where life got a little crazy. We had a lot of doctors with difference's of opinion after the cath. Some said he had months before needing the next surgery while others said he needed surgery immediately. Brad and I were so confused and frustrated. We aren't doctors and won't ever claim to be, but we needed to feel confident in Logan's care and we weren't getting that. His doctor suggested maybe we start asking for a second opinion. We sent his records out to CHOP (Children's Hospital of Philadelphia), Stanford, and a cardiologist at John Hopkins. After getting back all the information they all agreed that Logan was a candidate for a 1 1/2 ventricle repair, possibly a full repair.
We traveled to Philadelphia in December 2010 for Logan's 2nd surgery. Dr. Spray operated on him and did a complete 2 ventricle repair. He felt fairly confident in the surgery- he said Logan did great, but he was concerned that his Tricuspid Valve was deformed and a lot smaller than they had anticipated. Logan seemed to be doing great at first, but 3 days post-op Brad and I noticed something was not right. Logan was refusing to eat, seemed extremely agitated and uncomfortable, and looked miserable. Logan had gone into acute, severe heart failure. The right side of his heart was backing up so much with blood that the atrium wall was bending the wrong direction and he had major pleural effusions (fluid) on his lungs. We were moved back to the ICU to get him stabilized and they worked to get the fluid off his lungs. After a few days another heart cath was done to determine the next step. During the cath they popped open the atrium to try to alleviate the pressure building up in his heart, but it still wasn't enough. Just 10 days after having a major open heart surgery Logan was going back for another major open heart surgery. Dr. Spray tried every possible repair to at least make him a 1 1/2 ventricle heart, but his tricuspid valve was so unreliable and small that he had to patch over the valve and take him to a single ventricle. We were devastated at the outcome, but realized that we tried EVERYTHING we could. We traveled across the country to the best surgeon in the U.S. and Logan was given the best care possible so we have to trust that this is God's will and His plan for Logan.
Logan had a rough recovery from these 2 surgeries back to back and we ended up being in Philadelphia for 4 weeks before we finally said we needed to bring him home for him to recover. We had been away from home too long. After returning home his recovery went so much better. He loved being back with his sister and brother, and so did Brad and I. He came home on oxygen and was on oxygen full time until April 1st where we have been able to just have him on oxygen at night now. He is doing so well now. He is growing and developing like a healthy kid. So the plan is to watch him carefully, and again let him grow until he is at least 30 lbs where he will then need another surgery to complete the single ventricle anatomy called the Fontann.
He is our little Superman and a true warrior. He is such a blessing in our lives and has taught us so much. Through his heart journey we as his family have found strength we didn't know we had, faith beyond anything we have known, and a love that grows exponentially every day. This is definitely not the journey any parent would have chosen for their child to have to endure, but we will continue taking this journey with him every step of the way.
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