Part 1...
Where to begin? I should start with praise and thanksgiving that we are home and Max looks healthy and is back to his happy self. Thank God!
We checked in to Texas Children's, Monday March 5th at 8:00am. This was a really long day. Max was examined by the surgical team of nurses and nurse practitioners. We met with anesthesia and he had blood work done. The only bump was we were sent to the lab to have his blood drawn and they had a very difficult time of finding a good vein. After one very poor and ill trained attempt, I told them I was done and we would talk with the Heart clinic about other options to do his blood type and screen. I'm usually not one to raise hell and complain, but I wasn't going to subject Max to multiple pokes and lots of tears. We did that the first time around and now I'm wiser. When we were finally admitted to the hospital, the vascular access team came and gave Max local anesthesia to numb the pain and proceeded with collecting the blood they needed. Beautiful!
Tuesday morning began early. We were woken up around 5:45am and we were heading to the 20th floor to prepare for surgery by 6:15am. We met with anesthesia again. They gave Max a dose of Versed which is a medicine that essentially makes Max drunk and eases the separation when they take him back. It might have been inappropriate to laugh in such a serious situation, but Max was hilarious. He was pointing at all the nurses and people that were going by and telling them all kinds of things in baby babble. Apparently he's very talkative when he's under the influence. Interesting. He was very animated and had lots of smiles. Edgar and I prayed over him and by 7:00am he was heading back for his second open heart surgery in 10 months. Heavy. It's not easy to hand your kid over to strangers, even when the strangers are very intelligent, caring, and qualified. Neither one of us cried and we felt an immense amount of peace. Again, the power of prayer absolutely carried us through such a seemingly tough situation.
Throughout surgery we were given updates every hour. The updates are like a roller coaster. Because we were not sure what exactly Dr. Heinle (pediatric heart surgeon) was going to do for Max, we were very hopeful with each update to find out what was in store for our boy. We have prayed and will continue to pray that Max's heart will be fully repaired and healed, but with this surgery it was not the case. It's still not out of the realm of possibility because Dr. Heinle left the option open to make a full repair in another surgery when Max is 3 or 4 years old. He received what is called a pulsatile Glenn. In my very basic understanding, they connected the superior vena cava to the pulmonary artery which diverts half of the blue blood directly to the lungs without using his ventricle. His procedure was somewhat unique because they left the option open for superior vena cava (I think) to be reattached if in a third surgery they felt like they could give Max full function of his heart. In other words they didn't want to fully commit to the Glenn and future Fontan route because after these procedures the only thing left for him would be a transplant. We are so hopeful and we will continue to pray that they can give Max full function of his heart!
By 4:00pm, Max was in recovery and we were able to see him. It wasn't quite as intense to see him this time because we were in awe of how big he was. In his first surgery at 6 weeks old, he was tiny and the cords, wires, and tubes consumed his entire precious body. This time he seemed big and strong and honestly I was a proud momma. There's not much I can do to help heal my boy besides loving him and feeding him. I was proud that I had fed him well! I mean, have you seen his double knees and his chunky cheeks? Awesome.
They extubated him later on that night and it was absolutely amazing to hear him cry. With the tube in his mouth, you could see him cry, but you couldn't hear it because it's placed very near or maybe on the vocal cords and it prohibited him from making a sound. One of the unbelievable blessings of all of this is how I constantly feel like I'm getting to meet my son for the first time over and over again. It's incredible. When you've carried a baby for 9 months, nothing is sweeter than hearing your precious child cry when they are first brought into the world. I have the same feeling each time they bring Max out of surgery. When I heard him cry after they extubated him I cried. It was a physical sign that he had made it. It was a loud sign of how hard his body was fighting. And it was a sign of his incredible spirit. Of course he was mad, but thank God he was. Anything different and there would have been a lot of concerns. Pain is weakness leaving the body. And he cried it out because he is incredibly strong. I'm inspired every day.
Friday, March 16, 2012
Friday, March 2, 2012
Let the countdown begin...
It's hard to believe we are officially so close to surgery. One thing I learned is when the doctors tell you surgery will be within a couple of months, they don't really know the exact timeline, but they are just trying to give you a ballpark. They told us initially that Max would have surgery when he was between 6-9 months. Monday he will be 10 months.
A month ago, we were hospitalized for five days because of ear infections. I took Max in to the pediatrician because he had a really bad cold. They took his pulse ox and it had dropped to 65. Normally he's around 75. We were admitted to Texas Children's after a speedy trip to their emergency room and spent 4 nights in the hospital to receive oxygen and monitoring. This was the first time I was disappointed with Texas Children's. The first night the nurse told us she didn't want to bother Max to put the pulse ox monitor on. Later we discovered that the oxygen wasn't even at the right level and was barely on. The doctors couldn't explain why his pulse ox wasn't coming up, and thanks to a respiratory tech (that no one believed initially), they finally got their explanation. The oxygen was barely on. No wonder Max was annoyed at having the cannula in his nose. Nothing was coming out! This prolonged our stay in the hospital and it really made me want to scream, "I want my money back!" As we were being discharged, we were given a surgery date and told to not take Max anywhere if we could. We were told to keep him away from sick people and to really protect him so he will be healthy going into surgery.
Sunday he developed a runny nose and a dry cough. I became pretty worried. We waited 5 weeks and hadn't gone anywhere and now I thought he was coming down with a cold. I've been in constant contact with Max's cardiologist and it seems like he just has allergies. Monday, when we check in for pre-op, they are going to do some checks for infection to be sure that he's clear for anesthesia and surgery.
I am a whole range of emotions. I'm hopeful for surgery and when I picture what needs to be done to fix his heart, I have a lot of peace. I'm praying that they will be able to do a full repair and this will be our last surgery. Of course I'm scared. I'm scared of infection. I'm scared of seeing my little boy laid out after surgery. It's different this time. He's bigger. He's more mobile. He's talking. He has a personality and I know him. He's so joyful and I'm scared to see him in any other way. I'm scared to see my son suffer. When I think about him suffering, my heart is so heavy. I know he will be comfortable with medicine, but it's still more than anything I have ever endured or could even imagine. When your kids go through things like shots or a finger prick, I've felt that. I know what it's like. I can confidently tell them it's going to be ok. The pain is only temporary. I don't have that confidence with open heart surgery. And then I'm brought to my knees because I inevitably think of the Blessed Mother. She watched her son suffer and was supernaturally strong.
A month ago, we were hospitalized for five days because of ear infections. I took Max in to the pediatrician because he had a really bad cold. They took his pulse ox and it had dropped to 65. Normally he's around 75. We were admitted to Texas Children's after a speedy trip to their emergency room and spent 4 nights in the hospital to receive oxygen and monitoring. This was the first time I was disappointed with Texas Children's. The first night the nurse told us she didn't want to bother Max to put the pulse ox monitor on. Later we discovered that the oxygen wasn't even at the right level and was barely on. The doctors couldn't explain why his pulse ox wasn't coming up, and thanks to a respiratory tech (that no one believed initially), they finally got their explanation. The oxygen was barely on. No wonder Max was annoyed at having the cannula in his nose. Nothing was coming out! This prolonged our stay in the hospital and it really made me want to scream, "I want my money back!" As we were being discharged, we were given a surgery date and told to not take Max anywhere if we could. We were told to keep him away from sick people and to really protect him so he will be healthy going into surgery.
Sunday he developed a runny nose and a dry cough. I became pretty worried. We waited 5 weeks and hadn't gone anywhere and now I thought he was coming down with a cold. I've been in constant contact with Max's cardiologist and it seems like he just has allergies. Monday, when we check in for pre-op, they are going to do some checks for infection to be sure that he's clear for anesthesia and surgery.
I am a whole range of emotions. I'm hopeful for surgery and when I picture what needs to be done to fix his heart, I have a lot of peace. I'm praying that they will be able to do a full repair and this will be our last surgery. Of course I'm scared. I'm scared of infection. I'm scared of seeing my little boy laid out after surgery. It's different this time. He's bigger. He's more mobile. He's talking. He has a personality and I know him. He's so joyful and I'm scared to see him in any other way. I'm scared to see my son suffer. When I think about him suffering, my heart is so heavy. I know he will be comfortable with medicine, but it's still more than anything I have ever endured or could even imagine. When your kids go through things like shots or a finger prick, I've felt that. I know what it's like. I can confidently tell them it's going to be ok. The pain is only temporary. I don't have that confidence with open heart surgery. And then I'm brought to my knees because I inevitably think of the Blessed Mother. She watched her son suffer and was supernaturally strong.
Hail Mary, full of grace...
Lord, grant me the grace to get through this.
Wednesday, January 25, 2012
Heart Catheter
This last weekend and this week have been pretty long. Friday, my uncle passed away unexpectedly. He was doing his routine work out at a local pool and he drowned. The cause of death is still pending, and I'm not sure we'll ever find out what exactly happened. I don't even know that I've come to terms with his death. It still seems like it's not real. Sunday we traveled to San Antonio to be with my cousins and my aunt. It was a really hard and long day. I got to experience the business of funeral homes, and I'm not sure I care for it. We could only stay Sunday because we needed to get back to prepare for Max's procedure Tuesday. The funeral was on Tuesday and it was very difficult to not be there.
We arrived at Texas Children's at 6:00am. We woke up around 4:30 and were out the door around 5:30. Max woke up almost every hour the night before. He could probably sense my stress. He was not allowed to eat after midnight Monday. I woke and fed him at 11:30. They called us back pretty quickly. We caught the nurses and doctors up with everything that was going on with Max. He had ear infections the week prior, so we discussed his medication and I told them that his ears were clear as of Friday. Around 6:30 they gave him a dose of versed that was described to us as something that would make him a little "drunk" and would ease the separation. (Where was my dose?) Admittedly, he was really cute. He waved to everyone that walked by and became very smiley. We prayed over him and we handed him off to his anesthesiologist. Watching your baby walk through double doors with doctors is not a great sight, but we held it together.
They call you every hour to update you with the progress of the procedure. They said everything really got started around 7:30 and by 10:30 he was finished. They buzz you on a pager when everything is done and you meet with the doctor in a private conference room to discuss everything. Overall, everything was pretty routine and they collected all the necessary information to prepare for surgery. We went up to the recovery room and Max was awake and flirting with a nurse. He blew me a huge kiss when he saw me and that's when the tears came to my eyes. After 6 hours of surgery and a slight scare that we would have to stay over night, we were discharged and went home.
Today we met with the surgeon and it was a deja vu moment. Edgar and I both agreed that our meeting, in regards to information, was the same as the very first time we met with Dr. Heinle. All the options presented to us required opening Max's heart. Most babies that go through the Glenn operation do not have their heart opened mostly because they don't have all four chambers of their heart. The operation reroutes the blood from his head directly to his lungs. It is a set-up for the Fontan in which Max would only use half of his heart. All the information that the doctors have collected shows that there still is a possibility for a full repair and that's what they are going for in this next surgery. It seems unlikely, but if Max can have full function of his heart, they are going to do anything to make it happen. Dr. Heinle said that a full repair would be very complicated. Not words a momma wants to hear, but it's not the first time we've heard this.
This whole process is an emotional roller coaster. The hardest part is trying to keep a level head and not get too excited when they tell us that they are trying for a full repair. I'm always hopeful, and we have been praying for a full repair, but I also have to wrestle with reality. It's hard. Reality is, they can't tell us with certainty what they are going to do until they open his heart. It's hard to prepare yourself mentally when the game plan is not certain. We just have to continue to pray.
Maybe I'm not really facing and digesting all of this because I can't handle it. And maybe I'm just floating along. I sometimes feel guilty about being so happy in spite of everything. Because that's the truth. I am so happy. I am so grateful. And I couldn't ask for anything different. A friend of mine is facing tougher challenges with a pregnancy. In her journey, they had to meet with a cardiologist for her sweet boy in utero. The cardiologist told them that a lot of times people discover their baby has a heart anomaly and they choose to abort. That is something I truly cannot digest. I think about that a lot.
We arrived at Texas Children's at 6:00am. We woke up around 4:30 and were out the door around 5:30. Max woke up almost every hour the night before. He could probably sense my stress. He was not allowed to eat after midnight Monday. I woke and fed him at 11:30. They called us back pretty quickly. We caught the nurses and doctors up with everything that was going on with Max. He had ear infections the week prior, so we discussed his medication and I told them that his ears were clear as of Friday. Around 6:30 they gave him a dose of versed that was described to us as something that would make him a little "drunk" and would ease the separation. (Where was my dose?) Admittedly, he was really cute. He waved to everyone that walked by and became very smiley. We prayed over him and we handed him off to his anesthesiologist. Watching your baby walk through double doors with doctors is not a great sight, but we held it together.
They call you every hour to update you with the progress of the procedure. They said everything really got started around 7:30 and by 10:30 he was finished. They buzz you on a pager when everything is done and you meet with the doctor in a private conference room to discuss everything. Overall, everything was pretty routine and they collected all the necessary information to prepare for surgery. We went up to the recovery room and Max was awake and flirting with a nurse. He blew me a huge kiss when he saw me and that's when the tears came to my eyes. After 6 hours of surgery and a slight scare that we would have to stay over night, we were discharged and went home.
Today we met with the surgeon and it was a deja vu moment. Edgar and I both agreed that our meeting, in regards to information, was the same as the very first time we met with Dr. Heinle. All the options presented to us required opening Max's heart. Most babies that go through the Glenn operation do not have their heart opened mostly because they don't have all four chambers of their heart. The operation reroutes the blood from his head directly to his lungs. It is a set-up for the Fontan in which Max would only use half of his heart. All the information that the doctors have collected shows that there still is a possibility for a full repair and that's what they are going for in this next surgery. It seems unlikely, but if Max can have full function of his heart, they are going to do anything to make it happen. Dr. Heinle said that a full repair would be very complicated. Not words a momma wants to hear, but it's not the first time we've heard this.
This whole process is an emotional roller coaster. The hardest part is trying to keep a level head and not get too excited when they tell us that they are trying for a full repair. I'm always hopeful, and we have been praying for a full repair, but I also have to wrestle with reality. It's hard. Reality is, they can't tell us with certainty what they are going to do until they open his heart. It's hard to prepare yourself mentally when the game plan is not certain. We just have to continue to pray.
Maybe I'm not really facing and digesting all of this because I can't handle it. And maybe I'm just floating along. I sometimes feel guilty about being so happy in spite of everything. Because that's the truth. I am so happy. I am so grateful. And I couldn't ask for anything different. A friend of mine is facing tougher challenges with a pregnancy. In her journey, they had to meet with a cardiologist for her sweet boy in utero. The cardiologist told them that a lot of times people discover their baby has a heart anomaly and they choose to abort. That is something I truly cannot digest. I think about that a lot.
Saturday, December 31, 2011
Surgery set for January
Dr. Kyle called yesterday and told us surgery will definitely be in January. Max has to first have a heart catheter before he undergoes surgery. The heart catheter will check the pressures in his heart, measure the hole in his heart, and check the flow of blood in his pulmonary artery (and probably other things that I can't remember right now). They will go up through his thigh to preform all these tests. The risk of this procedure is relatively low, but there are still risks associated with sedation. Before his first open heart surgery, they did a heart catheter in which they actually made the hole in his heart larger so his blood could mix better. This time they are only collecting data for his surgery. He will have the catheter procedure done and then he will have surgery a couple of weeks after. I have to take him to the pediatrician for a pulse oxygen check next week and then we should be moving forward very quickly.
The power of prayer has been unbelievable to us throughout all of this and has strengthened our marriage and our family. Starting January 1st, we are asking that you please join us in praying a novena to the Sacred Heart of Jesus. A novena is a powerful prayer that is said nine days in a row for special intentions. We are going to use the following novena:
http://www.prayerbook.com/Devotions/Sacred%20Heart/shojnove.htm#ONE
If the novena is not for you, please be united with us in prayer for Max in any way that is comfortable to you. My original intention was to start the prayer nine days before his surgery, but they could call anytime and I want to make sure that we are prepared.
In our time of struggle, 2011 was an unbelievable year for us. We are so grateful and thankful for the gift of life. We are grateful for how God has revealed himself to us in so many ways. We pray that we can continue to open our hearts to Him. Love is the ultimate healer. It can heal all things. Pray for love. Pray for healing.
The power of prayer has been unbelievable to us throughout all of this and has strengthened our marriage and our family. Starting January 1st, we are asking that you please join us in praying a novena to the Sacred Heart of Jesus. A novena is a powerful prayer that is said nine days in a row for special intentions. We are going to use the following novena:
http://www.prayerbook.com/Devotions/Sacred%20Heart/shojnove.htm#ONE
If the novena is not for you, please be united with us in prayer for Max in any way that is comfortable to you. My original intention was to start the prayer nine days before his surgery, but they could call anytime and I want to make sure that we are prepared.
In our time of struggle, 2011 was an unbelievable year for us. We are so grateful and thankful for the gift of life. We are grateful for how God has revealed himself to us in so many ways. We pray that we can continue to open our hearts to Him. Love is the ultimate healer. It can heal all things. Pray for love. Pray for healing.
Wednesday, December 21, 2011
Surgery within 4-8 weeks
Today was another long day at Texas Children's. Overall Max is doing everything that he is supposed to be doing. His heart has fully grown into his PA band and it's time for the next surgery. Our cardiologist is going to speak with our surgeon and they are going to come up with a date and call us. They mentioned 4-8 weeks, but in reality, it will depend on scheduling.
Funny/Weird moments at Texas Children's:
1) Max was perfectly still during his echo cardiogram. We usually hold off on feeding him a bottle until it's time for the echo to start and then we feed him while the echo tech collects all the necessary data. Most kids are sedated and we have never sedated Max. Our philosophy is to try everything on our end before we have to give him any unnecessary medicine. With 5 minutes left in the echo, and Max is completely still, the tech says, "We usually don't do this, but here's a lollypop to keep him still while I finish." I'm sorry...a what? My kid has just started to eat food and you want to give him candy? HE'S 7 MONTHS OLD! Why don't people ask before doing these things? Crazy. (No, Max did not eat the candy. Yes, I am that mom.)
2) Texas Children's must have some sort of deal with Michael Buble. Every time I've been to the Milk Bank, Michael Buble is on loop while I'm trying to pump. I'm serious when I say that I start to lactate when I hear his voice. Today it was his Christmas Album. Great voice, but I'm a little worn out.
3) Signs in the waiting room and in the patient rooms read, "If you have waited for over 30 minutes, please ask for an update." I did. The update was wrong. We still waited.
4) Cardiologist pointing at Max's chubby legs, "Nice double knees." LOVE. Sorry kid. Ends up, you probably look more like me than you would like.
Funny/Weird moments at Texas Children's:
1) Max was perfectly still during his echo cardiogram. We usually hold off on feeding him a bottle until it's time for the echo to start and then we feed him while the echo tech collects all the necessary data. Most kids are sedated and we have never sedated Max. Our philosophy is to try everything on our end before we have to give him any unnecessary medicine. With 5 minutes left in the echo, and Max is completely still, the tech says, "We usually don't do this, but here's a lollypop to keep him still while I finish." I'm sorry...a what? My kid has just started to eat food and you want to give him candy? HE'S 7 MONTHS OLD! Why don't people ask before doing these things? Crazy. (No, Max did not eat the candy. Yes, I am that mom.)
2) Texas Children's must have some sort of deal with Michael Buble. Every time I've been to the Milk Bank, Michael Buble is on loop while I'm trying to pump. I'm serious when I say that I start to lactate when I hear his voice. Today it was his Christmas Album. Great voice, but I'm a little worn out.
3) Signs in the waiting room and in the patient rooms read, "If you have waited for over 30 minutes, please ask for an update." I did. The update was wrong. We still waited.
4) Cardiologist pointing at Max's chubby legs, "Nice double knees." LOVE. Sorry kid. Ends up, you probably look more like me than you would like.
Monday, December 5, 2011
Friday, December 2, 2011
Physical Therapy
At Max's six month pediatric check-up, Dr. Patel recommended physical therapy for Max to help with his gross motor skills. Although Max interacts socially as a normal baby and his fine motor skills seem to be on track, he is not sitting up on his own or rolling over from his back to his stomach. After calling numerous physical therapy locations, we finally found one covered by our insurance that was able to take us quickly. Initially, I had an appointment with Early Childhood Intervention (state program), but I canceled it when they told me it was going to take at least two months to start services. By that time, Max would be in surgery and physical therapy would not have helped him at all. Our new plan is to take Max to physical therapy once a week at T.E.A.M. Approach. Yesterday was our first session.
Max did really well and only got cranky when he was hungry. We worked on rolling over tummy to back, and back to tummy, as well as sitting up and trying to maintain his balance. The therapist thought that he wasn't really delayed, and that he showed normal development for a baby that is a back sleeper. She did, however, understand our pediatrician's request to build his strength now before his next surgery so that he doesn't get too far behind post op. We were assigned homework and we'll report back next week.
Other than that Max has been amazing. He's started to eat solids. I introduced all the vegetables first and his favorite, like his sister, seemed to be carrots and squash. I started to introduce fruits this week and he absolutely loved it. He would take a bite and make little noises like "mmm." So cute. His breakfast consists of fruit mixed with cereal which puts him into a food coma coupled with a three hour morning nap!! Seriously, I put Max down at 9:30 (half-way through Sesame Street...yes this is how I assess time in my house) and it's currently 12:30. Incredible.
All in all, we are doing really well. We're enjoying the Advent season and preparing for the birth of Jesus. Clare is having fun counting down the days and she loved putting up the Christmas tree.
Max did really well and only got cranky when he was hungry. We worked on rolling over tummy to back, and back to tummy, as well as sitting up and trying to maintain his balance. The therapist thought that he wasn't really delayed, and that he showed normal development for a baby that is a back sleeper. She did, however, understand our pediatrician's request to build his strength now before his next surgery so that he doesn't get too far behind post op. We were assigned homework and we'll report back next week.
Other than that Max has been amazing. He's started to eat solids. I introduced all the vegetables first and his favorite, like his sister, seemed to be carrots and squash. I started to introduce fruits this week and he absolutely loved it. He would take a bite and make little noises like "mmm." So cute. His breakfast consists of fruit mixed with cereal which puts him into a food coma coupled with a three hour morning nap!! Seriously, I put Max down at 9:30 (half-way through Sesame Street...yes this is how I assess time in my house) and it's currently 12:30. Incredible.
All in all, we are doing really well. We're enjoying the Advent season and preparing for the birth of Jesus. Clare is having fun counting down the days and she loved putting up the Christmas tree.
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