It always surprises me how much things can change in such a short amount of time. Take this pregnancy (or any pregnancy!) for example. In 9 short months, another living human being is grown, with 10 fingers and 10 toes, a heart and all major organs.....it always just blows me away. And of course how quickly the mother's body changes in those 9 months is a mystery to me. Between all the stretching and the hormone craze, its amazing that the mother ever gets back to normal once the baby is born! Despite all the difficulties I have had with this pregnancy though, it seems to have really gone by fast. I'm sure it has something to do with not having time to focus and think about this pregnancy. With Mateo's medical issues and milestones, I haven't given much thought to what's been going on with myself. And he has had many milestones in just a few months!
Sunday night, he slept in his own REAL big boy bed. He was in a crib-converted-to-a-toddler-bed, which we had called a big boy bed when he graduated from the crib part. But now, since we will be needing the crib again soon, Mateo has his own twin size bed. I had ordered it online and it is one of those pieces of furniture you get to put together yourself, but its definitely a bigger bed. And I was a little sad putting it together. Every time Mateo graduates to another phase, I feel sad. I just can't help it. I just miss my little, little boy. He is growing SO FAST and I cannot do a thing to slow it down. I have always been the kind of person that realizes how fast time flies and it always makes me sad to see it slipping away. I truely believe in making every moment matter.
Another big milestone for Mateo is that he started preschool last week. I thought I would have the worst time with dropping him off. I thought he'd be a little scared or insecure and cry and not want me to leave.....boy, was I wrong! He walked into the classroom with me and as soon as he saw all the things to play with and touch, I was barely even noticed walking out of the room. When I came to pick him up, he talked non-stop and was as dirty as can be, but grinning from ear to ear. I KNOW he loved it. On Friday, I took him to school to attend his Thanksgiving Feast (normally, he only attends Tuesday/Thursdays). We walked through the door into the hallway to go to his classroom and he took off at a good run, down the hall and disappeared into his room....leaving me to waddle down the hall by myself. The Thanksgiving Feast was so fun. Mateo walked into the eating hall with his classmates, all dressed up as pilgrims. Cutest. Things. Ever. I am having so much fun with this parenting stuff. I'm excited to attend all his little programs (Christmas Pageant is only a few weeks away!) and take pictures and videos. I'm excited to pack him lunch for Lunch Bunch on Thursdays. I'm excited to fill out all his registration forms and see what kind of craft he brings home each day. I'm excited to bring snack once a month! What a blessing children are to their parents!
As sad as I am that Mateo is growing up so fast, I am SO happy we started him in preschool. This gives him a chance to get a weekly schedule established. So much will be changing at the start of 2012, and I wanted him to have something he can count on. His little world is about to be rocked! I have my c-section scheduled for January 5th at noon. I have a feeling this baby is going to be wild. Despite Mateo's scary start in this world, he was an easy baby. His temperament and personality were so easy to handle. I don't suppose I can get THAT lucky two times in a row. Then a month after the baby is born, Mel leaves for Korea for an extended (VERY extended!) amount of time. I'm not sure how Mateo will handle that. My mom will be here for quite a while after Mel leaves, so I'm very grateful for that. I just pray Mateo adjusts well.
We are looking forward to all the holidays here. Thanksgiving is this week...and we have so much to be grateful for. I suppose we have much to give thanks for EVERY year, but this year seems special in particular. For one, Mateo made it through his heart surgery and recovery very well. We had some rough days, but looking at the overall picture, I know it could have been much worse. He has had all the opportunities that a 3 year old should have.....such as starting school and sleeping in a big boy bed :) We are grateful that this 2nd baby we're about to have is, by all appearances, healthy and heart-healthy....a big deal! I am especially thankful to be done with the 1st and 2nd trimester "morning" sickness. We are grateful for all the friends and spiritual family we have here in FL, who have helped us and been there for us when we've needed a hand. And I know I could list much more....but those are the bigger things that have happened this year.
Christmas is not far away now. I get to decorate the house this week. I'm always excited to blast Christmas music from the TV, drink hot chocolate and put up all the Christmas decorations. Everyone on the block is out putting up Christmas lights and its a little easier to get into the holiday spirit, even when its still 80+ degrees and humid outside. However, I really am wishing for some cooler temperatures! While I don't miss Wisconsin winters, I DO miss that little chill in the air that lets you know Santa is on his way!
Tuesday, November 22, 2011
Saturday, October 22, 2011
Bye Bye Baby
Tonight is the 3rd night that Mateo has slept without his pacifier. This is a HUGE milestone for us. Mel and I have wanted to get rid of those horrid pacifiers for the last couple of years. We held onto them and let Mateo continue to use them because it was his "comfort thing" and we wanted him to have it during his Fontan heart surgery. We had originally thought the surgery would be two years ago, but it kept getting pushed back, so getting rid of the pacifier had also gotten pushed back.
So while we had good intentions of breaking this pacifier habit long ago, it just never happened. And I KNEW the longer we held onto it, the harder it would be to break Mateo of it. He was a pacifier addict. About a year and a half ago, I started noticing his two front teeth were a little.....well, crooked....so we finally weaned him off the pacifier during the day and he only got to use it when he was in bed. He's a sneaky little thing though and would find opportunity to sneak it into his daily routine at different times. He seemed to be very attached to it.
Mel and I hated that pacifier. Mateo used to have 7 pacifiers that he would sleep with in his crib. Yes....I said SEVEN. They would be all arranged in his crib so that if the one in his mouth fell out, he would have plenty to find in the middle of the night, saving me and Mel a trip to his room to "feel around" for a paci. But by the time Mateo graduated from his crib to his bed, he was down to ONE pacifier. He had chewed holes in all of his other pacifiers and I was refusing to buy him any more. However, that often meant that either Mel or I had to get up at 2am because some little 3 year old was yelling, "My PACI!, My PACI!" because it had fallen out of his mouth while sleeping and he couldn't find it. Yes....gotta love being on the floor in his room at 2am blindly feeling all over the floor, looking for that stupid piece of plastic.....only to realize 10 minutes later it was still lying on my son's chest where it had fallen after slipping out of his mouth. *sigh*
So, imagine my surprise when I came home from grocery shopping one night to have Mel tell me that the pacifier was gone. Now imagine my anxiety and out-right fear that we weren't going to get any sleep because my preschooler is going to go bonkers when he realizes its lost. Only....it wasn't lost. Mel said it was all Mateo's idea. Wait. WHAT?! HOW did that happen?
Mateo was getting ready for bed. Part of his night-time ritual is to feed his fish. Mel was trying to pick out a bedtime story for Mateo while Mateo stood watching his fish eat and chewing on his pacifier. All of a sudden, Mel heard a "CLUNK" in the trash can. He turned around and asked Mateo what he had just thrown away. Mateo answered, in a very unconcerned way, "My paci. I bite it." and then walked to the bathroom to brush his teeth. Apparently, Mateo had chewed a hole in his last pacifier, rendering it useless, and then thrown it away like it was no big deal. Say What?!
At first, I couldn't believe our luck. Mateo is always surprising me. The things that people said would be difficult were turning out to be very easy. Potty-training a boy? Ha. Mateo potty-trained himself....seriously. Breaking a preschooler of using a pacifier that he has been attached to since birth? Apparently, piece of cake. Mateo has always done these "difficult" milestones all on his own. And to know that he had just dumped his beloved pacifier all by himself with no prodding from either myself or Mel was....awesome!
But that night, I hardly slept at all. Sure, Mateo woke up a couple times to use the potty, but that wasn't what kept me awake. That stupid pacifier kept me awake. Seriously. I could not believe that my son had just carelessly tossed away something that was supposed to have meant so much to him. How was he going to survive? He had treated it like it was yesterday's news....like it was worthless! Didn't he know how much that pacifier had seen him through? How could he just toss it and never look back? As these thoughts kept me awake, I realized that Mateo hadn't been the only pacifier addict. I was too! But in a different way. That pacifier is the last thing that Mateo still used that symbolized his "babyhood". I know, I know. Mateo hasn't been a "baby" in the last 2 years, but still.....it kind of kept him MY baby. The fact that he just threw it away without thinking anything of it was significant to me...because my "baby" was all grown up. I missed my baby!
I was disappointed because I had planned a big "getting rid of pacifier" celebration. Yes folks, a celebration. We were going to designate a day (in November) as get-rid-of-pacifier day and then cross off the days together until we got to that day. Then we were going to take Mateo to Build-A-Bear and help him say goodbye by putting the pacifier into one of the bears of his choosing....so he'd always have it but not be able to use it. I looked forward to this entire event because I was helping him move out of babyhood and into preschooler-hood (is that a word?). But he had done it all by himself. And it made me a little sad. I had thought this whole celebration was for Mateo and to help him transition. But Mateo's decision to dump this babyhood friend showed me that this celebration was really for myself and getting ready to say goodbye to my "baby". Apparently, I needed more closure with the pacifier than Mateo did! And once again, this is an example of my son teaching me important life lessons that could not have been learned anywhere else.
So while we had good intentions of breaking this pacifier habit long ago, it just never happened. And I KNEW the longer we held onto it, the harder it would be to break Mateo of it. He was a pacifier addict. About a year and a half ago, I started noticing his two front teeth were a little.....well, crooked....so we finally weaned him off the pacifier during the day and he only got to use it when he was in bed. He's a sneaky little thing though and would find opportunity to sneak it into his daily routine at different times. He seemed to be very attached to it.
Mel and I hated that pacifier. Mateo used to have 7 pacifiers that he would sleep with in his crib. Yes....I said SEVEN. They would be all arranged in his crib so that if the one in his mouth fell out, he would have plenty to find in the middle of the night, saving me and Mel a trip to his room to "feel around" for a paci. But by the time Mateo graduated from his crib to his bed, he was down to ONE pacifier. He had chewed holes in all of his other pacifiers and I was refusing to buy him any more. However, that often meant that either Mel or I had to get up at 2am because some little 3 year old was yelling, "My PACI!, My PACI!" because it had fallen out of his mouth while sleeping and he couldn't find it. Yes....gotta love being on the floor in his room at 2am blindly feeling all over the floor, looking for that stupid piece of plastic.....only to realize 10 minutes later it was still lying on my son's chest where it had fallen after slipping out of his mouth. *sigh*
So, imagine my surprise when I came home from grocery shopping one night to have Mel tell me that the pacifier was gone. Now imagine my anxiety and out-right fear that we weren't going to get any sleep because my preschooler is going to go bonkers when he realizes its lost. Only....it wasn't lost. Mel said it was all Mateo's idea. Wait. WHAT?! HOW did that happen?
Mateo was getting ready for bed. Part of his night-time ritual is to feed his fish. Mel was trying to pick out a bedtime story for Mateo while Mateo stood watching his fish eat and chewing on his pacifier. All of a sudden, Mel heard a "CLUNK" in the trash can. He turned around and asked Mateo what he had just thrown away. Mateo answered, in a very unconcerned way, "My paci. I bite it." and then walked to the bathroom to brush his teeth. Apparently, Mateo had chewed a hole in his last pacifier, rendering it useless, and then thrown it away like it was no big deal. Say What?!
At first, I couldn't believe our luck. Mateo is always surprising me. The things that people said would be difficult were turning out to be very easy. Potty-training a boy? Ha. Mateo potty-trained himself....seriously. Breaking a preschooler of using a pacifier that he has been attached to since birth? Apparently, piece of cake. Mateo has always done these "difficult" milestones all on his own. And to know that he had just dumped his beloved pacifier all by himself with no prodding from either myself or Mel was....awesome!
But that night, I hardly slept at all. Sure, Mateo woke up a couple times to use the potty, but that wasn't what kept me awake. That stupid pacifier kept me awake. Seriously. I could not believe that my son had just carelessly tossed away something that was supposed to have meant so much to him. How was he going to survive? He had treated it like it was yesterday's news....like it was worthless! Didn't he know how much that pacifier had seen him through? How could he just toss it and never look back? As these thoughts kept me awake, I realized that Mateo hadn't been the only pacifier addict. I was too! But in a different way. That pacifier is the last thing that Mateo still used that symbolized his "babyhood". I know, I know. Mateo hasn't been a "baby" in the last 2 years, but still.....it kind of kept him MY baby. The fact that he just threw it away without thinking anything of it was significant to me...because my "baby" was all grown up. I missed my baby!
I was disappointed because I had planned a big "getting rid of pacifier" celebration. Yes folks, a celebration. We were going to designate a day (in November) as get-rid-of-pacifier day and then cross off the days together until we got to that day. Then we were going to take Mateo to Build-A-Bear and help him say goodbye by putting the pacifier into one of the bears of his choosing....so he'd always have it but not be able to use it. I looked forward to this entire event because I was helping him move out of babyhood and into preschooler-hood (is that a word?). But he had done it all by himself. And it made me a little sad. I had thought this whole celebration was for Mateo and to help him transition. But Mateo's decision to dump this babyhood friend showed me that this celebration was really for myself and getting ready to say goodbye to my "baby". Apparently, I needed more closure with the pacifier than Mateo did! And once again, this is an example of my son teaching me important life lessons that could not have been learned anywhere else.
Sunday, October 9, 2011
There's no place like Home
Mel and I are beyond frustrated at the moment. We had been home from the hospital for 2 weeks and we thought things were going so well! Mateo was back to his usual happy-go-lucky self, being and doing things that 3 year old boys should be doing. We went to Disney World two nights ago and had a great time as a family. We thought we were pretty much in the clear. We were scheduled to see Mateo's cardiologist on Monday morning to have his effusion checked again. I expected it to be the same as it was a week ago (as in...gone) or possibly have a little fluid back, but not a lot.
But then yesterday, Mateo started breathing a little shallow and grunting, like he couldn't get in a full breath. He was also coughing and holding his chest, like it was uncomfortable. So I worried and called the on-call cardiologist. How these things ALWAYS manage to happen on a weekend or when his regular doctors are on vacation, I have no idea. But that seems to always be the case. The on-call cardiologist told us to give him another dose of his diuretic and if he didn't improve on it, then to bring him into the ER.
Well, 10:30pm found us sitting in the ER at St. Joe's, waiting to have a chest x-ray done. Apparently, the effusion was back and was big and the doctors all wanted us to be admitted to get Mateo started on IV diuretics, which tend to be much stronger than the ones taken by mouth.
They had to place an IV, which of course is never pleasant. We finally arrived in our room at 2:30am. I have to say, that after being at All Children's Hospital in St. Pete (the whole facility is only a year old, so brand-spanking new!), St. Joe's seems really dumpy, old and outdated. Once we got settled into our extremely uncomfortable recliners, we were really wishing we had driven out to St. Pete instead.
Mateo had another chest xray after being given a strong diuretic and it looks as though the effusion is not flushing out. So the next step is a chest tube. The cardiologist wants to put in a pigtail chest tube to drain the fluid off Mateo's lung. He said he thinks its important to move quickly on this because Mateo has the Fontan anatomy now. This means that there is no heart chamber that pumps blood to the lungs. All his blood flows through his lungs by gravity and if this fluid on/around the lung is causing restrictions on that blood flow, it could cause some real complications. So that's the plan. We are having a chest tube put in sometime this morning. Mateo is on a no food/no drink restriction because they will need to give him some strong meds for pain.
We are frustrated because this feels like big steps in the wrong direction. I know its usually 2 steps forward, 1 step back.....but this feels like we're going back to the beginning and my heart hurts for Mateo. I want so badly for him to not have to endure anymore of this. I know he feels so out of control of everything in his little world and it is very hard on him. We are disappointed because we thought we were in the clear and able to move on with life. We had so many fun things planned for Mateo this month, and now I have no idea if we'll be able to do any of it. The doctor said we will be here for 3 days, at the VERY least. The tube needs to be for 3 days, even if it stops draining the first day. They want to try and wean him off IV diuretics and change him to oral diuretics while the tube is still in so they can see if the oral ones will be able to maintain the fluid. So, we are supposed to be here 3-5 days...maybe more. BBBLLLLLAAAAAHHHHH!!!
I am super frustrated because I feel like no one is listening to me. It seems like his card is ALWAYS on vacation when we really need her. I did not want any big decisions made without her because I want it to be HER plan....not a doctor that we don't know. But I agree with the cardiologist that IS here. We talked about it a lot and he got a lot of my uncertainty ironed out. I just wish his regular card was here to second this doctor's opinion!
I have had to start logging and writing down everything that the nurse/doctors/staff do because they apparently cannot be trusted to record it correctly. I left for a couple hours early this morning to get a few things from the house for Mateo. When I got back, it was 5am and Mel said Mateo had had an xray around 4am. That was only 1/2 an hour after being given the stronger diuretic, and I didn't feel they allowed enough time for it to work before making the decision to put in a chest tube. The doctor said the xray was done at 6am...which was a BIG mistake because I was here, at the hospital, IN Mateo's room and NO ONE came and did an xray after I got back from the house. I told him it had been done earlier and Mel told him around 4am. The nurse sat and argued with me that the computer says 6am....I told her I didn't care what the computer said, I KNEW I was in Mateo's room and what did NOT happen while I was there. She brushed me off and told the doctor the xray was done at 6am. I, of course, got upset and angry and had to get "Mama Bear Serious" on her. She's been nicer since then. I am not putting up with any of that anymore. I know my son better than anyone here, I know what I'm talking about and what we're willing to do/not do and I WILL make sure the staff listens. I will not be brushed off or ignored or argued with. WILL NOT. That has happened before in the past and I let it go. Not anymore. Anytime I have had a gut feeling or "mommy instinct" about something, I was right and the doctor was wrong....so I'm taking the reigns!
Will try to keep an updated log of some kind....probably on facebook....just to let everyone know what's happening. For now, we're hanging in there.
But then yesterday, Mateo started breathing a little shallow and grunting, like he couldn't get in a full breath. He was also coughing and holding his chest, like it was uncomfortable. So I worried and called the on-call cardiologist. How these things ALWAYS manage to happen on a weekend or when his regular doctors are on vacation, I have no idea. But that seems to always be the case. The on-call cardiologist told us to give him another dose of his diuretic and if he didn't improve on it, then to bring him into the ER.
Well, 10:30pm found us sitting in the ER at St. Joe's, waiting to have a chest x-ray done. Apparently, the effusion was back and was big and the doctors all wanted us to be admitted to get Mateo started on IV diuretics, which tend to be much stronger than the ones taken by mouth.
They had to place an IV, which of course is never pleasant. We finally arrived in our room at 2:30am. I have to say, that after being at All Children's Hospital in St. Pete (the whole facility is only a year old, so brand-spanking new!), St. Joe's seems really dumpy, old and outdated. Once we got settled into our extremely uncomfortable recliners, we were really wishing we had driven out to St. Pete instead.
Mateo had another chest xray after being given a strong diuretic and it looks as though the effusion is not flushing out. So the next step is a chest tube. The cardiologist wants to put in a pigtail chest tube to drain the fluid off Mateo's lung. He said he thinks its important to move quickly on this because Mateo has the Fontan anatomy now. This means that there is no heart chamber that pumps blood to the lungs. All his blood flows through his lungs by gravity and if this fluid on/around the lung is causing restrictions on that blood flow, it could cause some real complications. So that's the plan. We are having a chest tube put in sometime this morning. Mateo is on a no food/no drink restriction because they will need to give him some strong meds for pain.
We are frustrated because this feels like big steps in the wrong direction. I know its usually 2 steps forward, 1 step back.....but this feels like we're going back to the beginning and my heart hurts for Mateo. I want so badly for him to not have to endure anymore of this. I know he feels so out of control of everything in his little world and it is very hard on him. We are disappointed because we thought we were in the clear and able to move on with life. We had so many fun things planned for Mateo this month, and now I have no idea if we'll be able to do any of it. The doctor said we will be here for 3 days, at the VERY least. The tube needs to be for 3 days, even if it stops draining the first day. They want to try and wean him off IV diuretics and change him to oral diuretics while the tube is still in so they can see if the oral ones will be able to maintain the fluid. So, we are supposed to be here 3-5 days...maybe more. BBBLLLLLAAAAAHHHHH!!!
I am super frustrated because I feel like no one is listening to me. It seems like his card is ALWAYS on vacation when we really need her. I did not want any big decisions made without her because I want it to be HER plan....not a doctor that we don't know. But I agree with the cardiologist that IS here. We talked about it a lot and he got a lot of my uncertainty ironed out. I just wish his regular card was here to second this doctor's opinion!
I have had to start logging and writing down everything that the nurse/doctors/staff do because they apparently cannot be trusted to record it correctly. I left for a couple hours early this morning to get a few things from the house for Mateo. When I got back, it was 5am and Mel said Mateo had had an xray around 4am. That was only 1/2 an hour after being given the stronger diuretic, and I didn't feel they allowed enough time for it to work before making the decision to put in a chest tube. The doctor said the xray was done at 6am...which was a BIG mistake because I was here, at the hospital, IN Mateo's room and NO ONE came and did an xray after I got back from the house. I told him it had been done earlier and Mel told him around 4am. The nurse sat and argued with me that the computer says 6am....I told her I didn't care what the computer said, I KNEW I was in Mateo's room and what did NOT happen while I was there. She brushed me off and told the doctor the xray was done at 6am. I, of course, got upset and angry and had to get "Mama Bear Serious" on her. She's been nicer since then. I am not putting up with any of that anymore. I know my son better than anyone here, I know what I'm talking about and what we're willing to do/not do and I WILL make sure the staff listens. I will not be brushed off or ignored or argued with. WILL NOT. That has happened before in the past and I let it go. Not anymore. Anytime I have had a gut feeling or "mommy instinct" about something, I was right and the doctor was wrong....so I'm taking the reigns!
Will try to keep an updated log of some kind....probably on facebook....just to let everyone know what's happening. For now, we're hanging in there.
Tuesday, September 20, 2011
Late night thoughts
Its after midnight but I'm wide awake. I took the night shift with Mateo while Mel went home to sleep. There is no sleeping in a hospital, folks. It just doesn't happen. So my mind is racing with one thought after another and I thought I'd get it down on "paper".
Mateo is one week post-surgery today. I thought I would have written something in this blog prior to his surgery but the words seemed to escape me. Plus, I was refusing to deal with any emotions tied to the surgery. I was good at seperating my emotions from it. I had three years to practice it.
Basically, I just stuck to the facts. Fact: Mateo has a serious heart condition that requires him to have multiple surgeries. Fact: This third surgery was necessary. Fact: This surgery would not "fix" or "cure" his heart condition but simply treat it the best way medicine knew how at this point. Fact: Surgery date was set for September 14th. Just facts, no emotion.
Sometimes the emotion would find me at 2am when I couldn't sleep and all I could do was wrestle with thoughts. And wrestle I did. I wrestled all those thoughts and emotions back into the box in the back of my mind, telling myself I'd deal with them at another time. And thats where they have sat for 3 years.
Even when surgery day caught up to me, I kept the emotion seperate from the facts. I remember Mateo's first two surgeries. I was a ball of nerves. I was shaking and trembling through the entire ordeal, tears right on the surface just waiting to be wept at any moment. I cried and felt sick to my stomach almost the entire day during those first two surgeries. One of the doctors had even offered me anxiety medication for the day. But this time I around, I felt pretty calm and ready. No shaking. No trembling. Just knowing my facts.
But emotion has a way of catching up to you, especially when you are sleep deprived. This last week has been very trying. Mateo has done remarkably well and his recovery is going great. All the facts look great. Fact: Good heart function. Fact: Chest tubes draining well and like they should. Fact: Able to get rid of each med, one by one.
But the emotional part has been very, very hard. Walking in and seeing my son "out of it" because of morphine isn't "cute". Yes, he was sweet and blowing kisses and doing "cute" things, but it made me sad that he had to even be like that. Having IVs coming out of his arms and neck isn't pretty. Seeing him hooked up to 10 different meds isn't easy. Seeing his beautiful zipper scar cut open again and glued back together into some ugly red line doesn't feel like progress. Having pacer wires and chest tubes coming out of holes in his chest is not "okay". How can I tell him that this is all okay and convince him this is all okay? The "facts" say its okay because its necessary, but 3 year olds don't understand facts. And they certainly don't understand what they feel half the time. How do I explain that I AM protecting him by putting him through all of this? How do I explain that through all of this pain and torture his life has been spared?
The worst day was a few days ago. He had to have an IV placed. Not one of those little IVs a person gets in his hand for a few short days. This was a long IV that gets put in his arm and is supposed to last weeks if not months. It goes deeper and much farther up the arm. Thankfully, Mel was there at that time to stay in the room with Mateo. I had to walk out the door. But I could still hear him screaming down the hall and it hit my heart like a ton of bricks. I went back in to help console Mateo after the whole ordeal and could tell that even my rock-strong husband was shaken up over it.
A few hours later, they had to take one of Mateo's IVs out. It was the IV in his neck that went down through his artery to his central circulation. It has been stitched into his neck and taped down so there was no possible way it would move around. Unfortunately, Mel had left by that time to get some sleep. I had walked out of the room again, thinking the nurses could handle it. I knew I couldn't. But again, I could hear Mateo screaming and I could not just leave him there. So I went back into the room. It was a horrible sight. One nurse had her hands on his head, holding it down to keep it to the side and the other nurse was ripping tape off his neck with one hand and holding scissors to cut the stitches with the other hand. I wanted to yank them out by their hair, pick up my son and run. But it was up to me. Up to me to assure Mateo during the torture that it was for his own good and that we were doing this because we loved him.
It felt like the "procedure" took forever. I was sweating when it was finally all over. Sweating and about as traumitized as Mateo was. The nurses left the room and I took Mateo's hand and sobbed into his lap, begging him to forgive me. I felt like I was supposed to be protecting him and I couldn't. And worse, I felt like HE thought I was supposed to be protecting him, and wasn't.
He finally fell asleep and I went into the bathroom to clean up when another wave of emotion hit and all I could do was sink to the floor and let it all out. Once you've had a good cry and all the tears have been wept, there is a cleaness of the soul that seems to follow. I still felt terrible and like a horrible mom but somehow, all that weight of emotion was a little lighter, and I was left with a little more strength. Just enough to pick myself up off the bathroom floor and walk back into Mateo's room with a smile. Because for a three year old, a smile is a fact. A fact that everything will eventually be alright.
Mateo is one week post-surgery today. I thought I would have written something in this blog prior to his surgery but the words seemed to escape me. Plus, I was refusing to deal with any emotions tied to the surgery. I was good at seperating my emotions from it. I had three years to practice it.
Basically, I just stuck to the facts. Fact: Mateo has a serious heart condition that requires him to have multiple surgeries. Fact: This third surgery was necessary. Fact: This surgery would not "fix" or "cure" his heart condition but simply treat it the best way medicine knew how at this point. Fact: Surgery date was set for September 14th. Just facts, no emotion.
Sometimes the emotion would find me at 2am when I couldn't sleep and all I could do was wrestle with thoughts. And wrestle I did. I wrestled all those thoughts and emotions back into the box in the back of my mind, telling myself I'd deal with them at another time. And thats where they have sat for 3 years.
Even when surgery day caught up to me, I kept the emotion seperate from the facts. I remember Mateo's first two surgeries. I was a ball of nerves. I was shaking and trembling through the entire ordeal, tears right on the surface just waiting to be wept at any moment. I cried and felt sick to my stomach almost the entire day during those first two surgeries. One of the doctors had even offered me anxiety medication for the day. But this time I around, I felt pretty calm and ready. No shaking. No trembling. Just knowing my facts.
But emotion has a way of catching up to you, especially when you are sleep deprived. This last week has been very trying. Mateo has done remarkably well and his recovery is going great. All the facts look great. Fact: Good heart function. Fact: Chest tubes draining well and like they should. Fact: Able to get rid of each med, one by one.
But the emotional part has been very, very hard. Walking in and seeing my son "out of it" because of morphine isn't "cute". Yes, he was sweet and blowing kisses and doing "cute" things, but it made me sad that he had to even be like that. Having IVs coming out of his arms and neck isn't pretty. Seeing him hooked up to 10 different meds isn't easy. Seeing his beautiful zipper scar cut open again and glued back together into some ugly red line doesn't feel like progress. Having pacer wires and chest tubes coming out of holes in his chest is not "okay". How can I tell him that this is all okay and convince him this is all okay? The "facts" say its okay because its necessary, but 3 year olds don't understand facts. And they certainly don't understand what they feel half the time. How do I explain that I AM protecting him by putting him through all of this? How do I explain that through all of this pain and torture his life has been spared?
The worst day was a few days ago. He had to have an IV placed. Not one of those little IVs a person gets in his hand for a few short days. This was a long IV that gets put in his arm and is supposed to last weeks if not months. It goes deeper and much farther up the arm. Thankfully, Mel was there at that time to stay in the room with Mateo. I had to walk out the door. But I could still hear him screaming down the hall and it hit my heart like a ton of bricks. I went back in to help console Mateo after the whole ordeal and could tell that even my rock-strong husband was shaken up over it.
A few hours later, they had to take one of Mateo's IVs out. It was the IV in his neck that went down through his artery to his central circulation. It has been stitched into his neck and taped down so there was no possible way it would move around. Unfortunately, Mel had left by that time to get some sleep. I had walked out of the room again, thinking the nurses could handle it. I knew I couldn't. But again, I could hear Mateo screaming and I could not just leave him there. So I went back into the room. It was a horrible sight. One nurse had her hands on his head, holding it down to keep it to the side and the other nurse was ripping tape off his neck with one hand and holding scissors to cut the stitches with the other hand. I wanted to yank them out by their hair, pick up my son and run. But it was up to me. Up to me to assure Mateo during the torture that it was for his own good and that we were doing this because we loved him.
It felt like the "procedure" took forever. I was sweating when it was finally all over. Sweating and about as traumitized as Mateo was. The nurses left the room and I took Mateo's hand and sobbed into his lap, begging him to forgive me. I felt like I was supposed to be protecting him and I couldn't. And worse, I felt like HE thought I was supposed to be protecting him, and wasn't.
He finally fell asleep and I went into the bathroom to clean up when another wave of emotion hit and all I could do was sink to the floor and let it all out. Once you've had a good cry and all the tears have been wept, there is a cleaness of the soul that seems to follow. I still felt terrible and like a horrible mom but somehow, all that weight of emotion was a little lighter, and I was left with a little more strength. Just enough to pick myself up off the bathroom floor and walk back into Mateo's room with a smile. Because for a three year old, a smile is a fact. A fact that everything will eventually be alright.
Wednesday, August 10, 2011
They finally came!
I enrolled Mateo in a program a few months ago called Beads of Courage. The purpose of this program is to support kids that are going through tough illnesses. It also gives them something tangible to show others the rough, and often, dangerous road they have travelled. Basics of the program are this: each procedure or "milestone" throughout each child's journey is represented by a certain bead. There is something special about each bead, whether its the color, the shape or how it was made...one even glows in the dark! A bead is presented to the child after each milestone. These milestones can be anything from an overnight stay in the hospital, a blood draw, tests or scans, admission to the hospital, clinic visits or even "bigger" procedures like caths or surgeries.
I came across this program a few months ago and fell in love with it. Many of our heart kids go through some tremendous pain and difficult procedures. But so often, we are told that our kids don't "look sick" or "look normal". And that's a great thing. I want Mateo to look normal and to act like he's never seen the inside of a hospital. But at the same time, I want what he goes through to be important. And these beads give it meaning, validation...something tangible to show people "look what he's accomplished". These are beads that he can take to school and show his friends or teachers or ANYone to say that he fought, he survived and he continues to thrive. To LIVE. Each bead IS a bead of courage. Because truly our children are brave and many have looked in the face of death and beat the odds. And this strand of beads recognizes that.
So when that USPS box arrived on our doorstep, I was excited to open it. Mateo was too. He was dancing in place as I cut across the tape that held it shut. Once I opened it, I just let him go to town pulling out one envelope of beads after another.
Tonight we strung them together as a family. While Mateo does a lot of the hard work, we're all in this journey together. We grouped them all together by color and shape and let Mateo do the majority of the stringing. He seemed to really enjoy it and had so much fun choosing which bead to use next.
We got to the end of one strand of string and had TONS of beads left to string. That's when it dawned on me how many beads there actually were. How many things Mateo had gone through and endured. These beads only represented the first 3 years of his life and I started wondering how many more we were going to have to add.
He has surgery coming up at the end of this month and that always tallys up quite a few. And then there's the rest of his life. Cardio appointments, tests, etc etc. It made me a little sad looking at it all, but I didn't want to take away from what they really stood for....Mateo's bravery and what he fought for. And he was SO happy to be doing this! Aside from being very concentrated when he was actually putting a bead on the string, his smile was from ear to ear almost the entire time. And for me, they represent that he is still here and still fighting. We hope and pray for the best when it comes to our future, but he is here now and we are enjoying every minute.
I came across this program a few months ago and fell in love with it. Many of our heart kids go through some tremendous pain and difficult procedures. But so often, we are told that our kids don't "look sick" or "look normal". And that's a great thing. I want Mateo to look normal and to act like he's never seen the inside of a hospital. But at the same time, I want what he goes through to be important. And these beads give it meaning, validation...something tangible to show people "look what he's accomplished". These are beads that he can take to school and show his friends or teachers or ANYone to say that he fought, he survived and he continues to thrive. To LIVE. Each bead IS a bead of courage. Because truly our children are brave and many have looked in the face of death and beat the odds. And this strand of beads recognizes that.
So when that USPS box arrived on our doorstep, I was excited to open it. Mateo was too. He was dancing in place as I cut across the tape that held it shut. Once I opened it, I just let him go to town pulling out one envelope of beads after another.
Tonight we strung them together as a family. While Mateo does a lot of the hard work, we're all in this journey together. We grouped them all together by color and shape and let Mateo do the majority of the stringing. He seemed to really enjoy it and had so much fun choosing which bead to use next.
Friday, August 5, 2011
Heart Bears and Updates
I had my OB appointment today. Things went well, aside from the waiting that goes with these appointments. The doctor listened to all my concerns and addressed anything that might need to be taken care of. He listened to the baby's heartbeat. He seemed to listen to it forever and really be listening for...something....but he said everything sounded great when he was done. He is a very optimistic doctor and left me feeling good and hopeful about everything that is to come.
I am supposed to be going in for a Level II Ultrasound within the next couple weeks. That's when we'll take a closer look at the baby's heart and determine whether or not everything looks like it should. I'm having mixed emotions about this because its right before Mateo's surgery. If everything is good and healthy, then of course I want to know right away! BUT....if there are problems, I'm not sure I want to know about it right before Mateo's surgery, when I need to be focusing on him and that procedure. I guess we'll just deal with it how we always do....one step at a time.
The doctor also said not to worry about the stress that is sure to come with Mateo's surgery, that the baby would be fine. He really put my mind at ease about a lot of things, so I'm glad I went in to see him today. I almost rescheduled the appointment this morning because I was not feeling very well and just wanted to stay home.
When we got home, there was a package waiting for us at the door. I ordered Mateo a Mended Heart Bear a week or so ago and it arrived today.
Its the cutest thing and SO soft. It has a zipper on its chest (like Mateo's "zipper", which is what we call his scar from his last heart surgery). When you unzip him there is a little, stitched up heart inside....just like Mateo's.
I plan to use this in a couple weeks to explain, in very simple and non-scary, terms what Mateo will be going through. He already knows his heart has a "boo-boo" and needs to be fixed....so we'll see how well we can prepare him for this. Now, I just need someone to prepare ME!
I am supposed to be going in for a Level II Ultrasound within the next couple weeks. That's when we'll take a closer look at the baby's heart and determine whether or not everything looks like it should. I'm having mixed emotions about this because its right before Mateo's surgery. If everything is good and healthy, then of course I want to know right away! BUT....if there are problems, I'm not sure I want to know about it right before Mateo's surgery, when I need to be focusing on him and that procedure. I guess we'll just deal with it how we always do....one step at a time.
The doctor also said not to worry about the stress that is sure to come with Mateo's surgery, that the baby would be fine. He really put my mind at ease about a lot of things, so I'm glad I went in to see him today. I almost rescheduled the appointment this morning because I was not feeling very well and just wanted to stay home.
When we got home, there was a package waiting for us at the door. I ordered Mateo a Mended Heart Bear a week or so ago and it arrived today.
Wednesday, August 3, 2011
Long Update, sorry y'all!
Well, I know its been forever since my last entry. However, I'm confident that most of you understand why I haven't exactly felt like writing for the last 4 months!
To explain, in April Mel went to Panama City for 6 weeks for "work stuff", leaving Mateo and me at home. I decided I didn't want to spend 6 weeks by myself so I took Mateo up to Wisconsin with me for a month long vacation of good ol' family time. I was excited to be able to be 'home' again for a nice long stay. I always enjoy going home. Its one of the most comforting places I know of....my happy place!
Mateo had a grand time wrestling with his cousin Dawson, playing in huge mud puddles, celebrating his 3rd birthday, eating fresh cheese and just getting some fresh country air into his lungs! He had animals galore to gawk at....kitties, chickens, a horse and dog...of course the dog was his favorite. He would play fetch with Turbo for hours! My dad was able to take Mateo on several tractor rides and he even got to help my mom in the garden a little bit...at least, as much as a 3 year old can help!
Unfortunately, my time there wasn't as fun as Mateo's, although it did happen to be eventful. I was sick for almost the entire month we were there. I ended up with a head cold the first week, nausea the 2nd week and full on vomiting for the rest of the time we were there. I spent my time glued to the couch with a bucket always within arms reach.
I realized after the 3rd day of not being able to keep anything in my stomach, that this was feeling all too familiar and I had my mom pick up a pregnancy test for me. Sure enough, the result was positive. Talk about a huge surprise! The phone call I made to Mel that night was....interesting....to say the least. I ended up having to cancel my flight back to Florida because there was no way I could maneuver the airport and a 3 hour flight, with Mateo, by myself while throwing up every half hour. Mel ended up driving up from Florida to come get us and take us home. It was a very long 3 day trip in the car from Wisconsin to Florida. But we made it.
Once I got home, I found out I was only about 8 weeks along. At my first OB appointment, the doctor had me admitted to the hospital right away. I had already lost a considerable amount of weight and was severely dehydrated. Oh the memories. It was like deja'vue. I had gone through all of this with Mateo. I had been so worried about having to deal with this a second time that Mel and I almost decided we were happy being just a family of three. But EVERYONE I talked to said that every pregnancy is different....I probably wouldn't be sick at all, or at least not AS sick......blah blah blah. Well, I guess we took a leap of faith and it didn't pan out the way I was hoping! So, anyway, now you know where I've been...glued to my couch and waste basket. But, I am finally through the absolute worst of this crazy morning sickness. I have a little more energy and the vomiting has almost all but gone away. I'm still not feeling like myself though. And maybe I never will. Maybe I'll have to find a new version of 'myself' and be okay with it. Time will tell. Right now, I have more important things to think about. Bigger issues looming in the not-so-very distant future.
Within the next 1-4 weeks, I'll be seeing the OB again for a level II ultrasound. I'm not sure how I feel about it. Excited? Nervous? Scared? All of the above I guess. While I want to know whether I'm having a boy or girl.....I am scared to find out about this baby's heart. We've been told it would be like getting struck by lightening twice to have a second child with HLHS. BUT....that doesn't exactly comfort me since we live in the lightening capital of the world....or at least the country. I push a lot of the overwhelming parts of life to the back of my brain and let it sit there until I absolutely have to face it...so I've just been focusing on feeling better. One day at a time, right?
Then there's all of Mateo's medical issues that we've had to deal with and face in the last few weeks. On July 12th, Mateo had his pre-Fontan heart catheterization. NOT fun stuff. We have been hospital-free for 3 years, so this was a shock to him. He did great during admitting. Even did great with getting the IV placed, thanks to something called Ativan, a drug that makes him a little...."loopy"....and relaxed. He also did great through the procedure itself. Basically, they sedate him, intubate him and then place a catheter through the main artery in his leg to his heart/lungs and do some "information collecting". Mateo did great. But it was the recovery part that was a nightmare.
We had to stay in the recovery unit for 6 hours post-cath to make sure he clotted off correctly and didn't develop a hematoma or other complications. Mateo screamed and cried the entire 6 hours. I felt like they were traumatizing him and I KNOW he thought they were torturing him. He had no idea what was going on. His throat was raw from the tube that had been stuck down it during the procedure, his groin was bruised and in pain, his head was reeling from the anesthesia....it was a total nightmare and he was in melt-down mode the entire time. He did not stop crying until I picked him up to take him away from it all. As soon as we got in the car, the tears stopped. It is torture on a mother to see their child in that much pain and fear and not be able to do anything about it. I was sick the whole time...just sick. And angry. And it placed a lot of fear in my heart for the upcoming surgery. But again, that will be buried in the back of my brain until I have to face it.
Overall, the results from the cath were okay. His pressures are a little on the high side. But that could have been due to a couple of things. First, the cardiologist had to coil off several large collaterals that had grown over the last few years. Those collaterals may have been contributing to those higher pressures. Second, Mateo has a narrow ASD that we've known about since his Glenn surgery. It will need to be carved out and widened during his next surgery. That "narrowness" causes things to back up a little bit and adds to the pressure in his lungs. So, these are fixable issues. However, they may still lead to a longer recovery period after the next surgery, causing some excess fluid that will need to be drained out post-surgery.
A few days after the cath, we got to meet with the surgeon that will actually be performing Mateo's Fontan surgery. This is the same surgeon that did Mateo's first two open heart surgeries. He is an amazing man. Dr. Quintessenza is a wonderful surgeon with one of the best bed-side manners I have ever seen in a doctor. We hadn't seen him in three years...since Mateo's last surgery....but I immediately felt at-ease when he walked into the room. He said that Mateo looks healthy and big and in perfect shape for the surgery. He complimented us as parents and had nothing but good things to say. He is extremely optimistic for the surgery and for Mateo's future. These are all the reasons we are following him to a different hospital than where the first procedures took place. I can change locations, but not surgeons. I trust this man and feel confident that he will do his best. At Mateo's last surgery, Dr. Q hugged me and told me not to worry. That he was going to take care of Mateo and do the best that he possibly could. It was very comforting, and I felt that comfort again just talking to him about the upcoming procedure. God be with him!
So Mateo's surgery is scheduled for August 31st. We have to keep him fit and healthy until then and we're trying to stay positive. Right now we are mentally sticking to facts, only facts: Mateo needs this surgery, its already scheduled, we've known this day was coming, etc. The emotional aspect of this will hit my like a brick wall the week, day or hour that it all happens, but until then, its staying buried (except for those times when I can't sleep at 3am and I am wide awake with fear of unanswered questions, worries and "what-ifs"!). So say a prayer for us. We have a lot coming up and need as much help as possible. Thanks for sticking with this blog. This is a long entry since its been so long since the last one and so much has happened. I'll try to stick with it for updates as best as I can. Heart hugs to all!
To explain, in April Mel went to Panama City for 6 weeks for "work stuff", leaving Mateo and me at home. I decided I didn't want to spend 6 weeks by myself so I took Mateo up to Wisconsin with me for a month long vacation of good ol' family time. I was excited to be able to be 'home' again for a nice long stay. I always enjoy going home. Its one of the most comforting places I know of....my happy place!
Mateo had a grand time wrestling with his cousin Dawson, playing in huge mud puddles, celebrating his 3rd birthday, eating fresh cheese and just getting some fresh country air into his lungs! He had animals galore to gawk at....kitties, chickens, a horse and dog...of course the dog was his favorite. He would play fetch with Turbo for hours! My dad was able to take Mateo on several tractor rides and he even got to help my mom in the garden a little bit...at least, as much as a 3 year old can help!
Unfortunately, my time there wasn't as fun as Mateo's, although it did happen to be eventful. I was sick for almost the entire month we were there. I ended up with a head cold the first week, nausea the 2nd week and full on vomiting for the rest of the time we were there. I spent my time glued to the couch with a bucket always within arms reach.
I realized after the 3rd day of not being able to keep anything in my stomach, that this was feeling all too familiar and I had my mom pick up a pregnancy test for me. Sure enough, the result was positive. Talk about a huge surprise! The phone call I made to Mel that night was....interesting....to say the least. I ended up having to cancel my flight back to Florida because there was no way I could maneuver the airport and a 3 hour flight, with Mateo, by myself while throwing up every half hour. Mel ended up driving up from Florida to come get us and take us home. It was a very long 3 day trip in the car from Wisconsin to Florida. But we made it.
Once I got home, I found out I was only about 8 weeks along. At my first OB appointment, the doctor had me admitted to the hospital right away. I had already lost a considerable amount of weight and was severely dehydrated. Oh the memories. It was like deja'vue. I had gone through all of this with Mateo. I had been so worried about having to deal with this a second time that Mel and I almost decided we were happy being just a family of three. But EVERYONE I talked to said that every pregnancy is different....I probably wouldn't be sick at all, or at least not AS sick......blah blah blah. Well, I guess we took a leap of faith and it didn't pan out the way I was hoping! So, anyway, now you know where I've been...glued to my couch and waste basket. But, I am finally through the absolute worst of this crazy morning sickness. I have a little more energy and the vomiting has almost all but gone away. I'm still not feeling like myself though. And maybe I never will. Maybe I'll have to find a new version of 'myself' and be okay with it. Time will tell. Right now, I have more important things to think about. Bigger issues looming in the not-so-very distant future.
Within the next 1-4 weeks, I'll be seeing the OB again for a level II ultrasound. I'm not sure how I feel about it. Excited? Nervous? Scared? All of the above I guess. While I want to know whether I'm having a boy or girl.....I am scared to find out about this baby's heart. We've been told it would be like getting struck by lightening twice to have a second child with HLHS. BUT....that doesn't exactly comfort me since we live in the lightening capital of the world....or at least the country. I push a lot of the overwhelming parts of life to the back of my brain and let it sit there until I absolutely have to face it...so I've just been focusing on feeling better. One day at a time, right?
Then there's all of Mateo's medical issues that we've had to deal with and face in the last few weeks. On July 12th, Mateo had his pre-Fontan heart catheterization. NOT fun stuff. We have been hospital-free for 3 years, so this was a shock to him. He did great during admitting. Even did great with getting the IV placed, thanks to something called Ativan, a drug that makes him a little...."loopy"....and relaxed. He also did great through the procedure itself. Basically, they sedate him, intubate him and then place a catheter through the main artery in his leg to his heart/lungs and do some "information collecting". Mateo did great. But it was the recovery part that was a nightmare.
We had to stay in the recovery unit for 6 hours post-cath to make sure he clotted off correctly and didn't develop a hematoma or other complications. Mateo screamed and cried the entire 6 hours. I felt like they were traumatizing him and I KNOW he thought they were torturing him. He had no idea what was going on. His throat was raw from the tube that had been stuck down it during the procedure, his groin was bruised and in pain, his head was reeling from the anesthesia....it was a total nightmare and he was in melt-down mode the entire time. He did not stop crying until I picked him up to take him away from it all. As soon as we got in the car, the tears stopped. It is torture on a mother to see their child in that much pain and fear and not be able to do anything about it. I was sick the whole time...just sick. And angry. And it placed a lot of fear in my heart for the upcoming surgery. But again, that will be buried in the back of my brain until I have to face it.
Overall, the results from the cath were okay. His pressures are a little on the high side. But that could have been due to a couple of things. First, the cardiologist had to coil off several large collaterals that had grown over the last few years. Those collaterals may have been contributing to those higher pressures. Second, Mateo has a narrow ASD that we've known about since his Glenn surgery. It will need to be carved out and widened during his next surgery. That "narrowness" causes things to back up a little bit and adds to the pressure in his lungs. So, these are fixable issues. However, they may still lead to a longer recovery period after the next surgery, causing some excess fluid that will need to be drained out post-surgery.
A few days after the cath, we got to meet with the surgeon that will actually be performing Mateo's Fontan surgery. This is the same surgeon that did Mateo's first two open heart surgeries. He is an amazing man. Dr. Quintessenza is a wonderful surgeon with one of the best bed-side manners I have ever seen in a doctor. We hadn't seen him in three years...since Mateo's last surgery....but I immediately felt at-ease when he walked into the room. He said that Mateo looks healthy and big and in perfect shape for the surgery. He complimented us as parents and had nothing but good things to say. He is extremely optimistic for the surgery and for Mateo's future. These are all the reasons we are following him to a different hospital than where the first procedures took place. I can change locations, but not surgeons. I trust this man and feel confident that he will do his best. At Mateo's last surgery, Dr. Q hugged me and told me not to worry. That he was going to take care of Mateo and do the best that he possibly could. It was very comforting, and I felt that comfort again just talking to him about the upcoming procedure. God be with him!
So Mateo's surgery is scheduled for August 31st. We have to keep him fit and healthy until then and we're trying to stay positive. Right now we are mentally sticking to facts, only facts: Mateo needs this surgery, its already scheduled, we've known this day was coming, etc. The emotional aspect of this will hit my like a brick wall the week, day or hour that it all happens, but until then, its staying buried (except for those times when I can't sleep at 3am and I am wide awake with fear of unanswered questions, worries and "what-ifs"!). So say a prayer for us. We have a lot coming up and need as much help as possible. Thanks for sticking with this blog. This is a long entry since its been so long since the last one and so much has happened. I'll try to stick with it for updates as best as I can. Heart hugs to all!
Monday, March 28, 2011
The Latest News
Mateo saw the cardiologist today. It was a scheduled appointment, nothing out of the ordinary for us. He had the usual ECHO and EKG performed. He is currently weighing in at 29 (almost 30) pounds and has grown to be nearly 39" (3 feet 3 inches!) tall! He is going to be a very tall kid....definitely from MY side of the family (sorry Mel!).
Overall, the appointment went well. His ECHO came out great. His heart function is "great" and still has very minimal, nothing-to-worry-about, tricuspid valve leakage. His blood pressure was beautiful. BUT...if you know me, then you know that I am more of a "focus on the details" person, not so much a "big picture" person. So, while the big picture is that he's doing great and fine.....there are a few smaller details that have drawn some concern. There aren't any immediate dangers, but things to keep an eye on and, yes, things for me to stress over....because I'm a mom!
So, the details. Well, his O2 sats were running a little high. They were at 88-90%. I know that sounds good, but for his anatomy and his size, its a red flag. What has happened, is that Mateo's body has developed something called "collaterals".
Most in the heart world know what these are, but for those who do not know, I will explain (I was in the "don't know" category before Mateo was born!).
Normal-heart people tend to have a blood oxygen saturation of 96%-100%. Because of Mateo's anatomy, his blood oxygen sats have been running 78%-80%. This means that his blood is not carrying as much oxygen to his body that a heart healthy person's blood does. Some of his blood remains "un-oxygenated". Still with me?
After a while, his body "realizes" its not getting the oxygen it thinks its needs, so its tries to "fix" the problem by growing extra blood vessels. The body is thinking, "more blood vessels = more blood which SHOULD = more oxygen". In theory, that would be correct. But the body is too smart for its own good and has over thought and over-fixed the issue. Now, because of collaterals, there is blood shunting to and from places that we don't want it to. So the cardiologist has to go in, via heart catheterization, to close off (with coils) those extra blood vessels that the body decided to grow.
This in and of itself isn't a huge issue because Mateo is in need of a pre-surgery heart cath anyway and she'll take care of all the extra collaterals then, if needed.
Also, Mateo's ASD continues to be a source of concern for Dr. Suh (Mateo's cardiologist). ASD stands for "atrial-septum defect". This is basically a hole in the wall that divides the left and right sides of his heart. Right now, its "okay" because only part of his blood flows through that hole. After his next surgery, ALL of his blood will flow through that hole, so it will need to be much bigger. The plan is to have the surgeon carve out the ASD and make it bigger during his next surgery.
SO...here's our plan. I want to spend some time with my family in Wisconsin soon. Instead of taking care of the collaterals (extra blood vessels) NOW, we will wait. Dr. Suh's logic is that his O2 sats are currently almost 90% ....which really isn't an immediate danger thing. But since we're flying, she worries about closing them before then. If she closes those collaterals now, then that will cause his O2 sats to fall....probably closer to 75-80%. This makes Mateo more cyanotic and he will look "blue" because there won't be as much oxygen in his blood. Then if we fly, even though the cabin is pressurized, the O2 in the airplane isn't the same as the O2 on the ground and that could make his O2 sats go even lower. So she feels its best to wait til after our trip sometime to close off those collaterals. Remember, lower O2 sats means the body isn't receiving optimal amount of oxygen....this includes the brain! Too low of O2 sats for a too long period of time can cause brain damage.
She's also on vacation sometime coming up. So factoring everything in, we have decided to see her again on June 6th. This appointment will be a pre-catheteriztion work-up. She is expecting it to be an out-patient procedure where Mateo can most likely go home the same night that the cath is performed.
After reviewing the results from the cath, she is going to present it to the "board of surgeons" or whatever they call themselves. They will decide a surgery "plan" from there. Mateo WILL be having his 3rd open heart surgery, called the extra-cardiac Fontan, in June. No more pushing it back. That's when it WILL be.
So prayers are appreciated. I know many of you are praying daily for Mateo already as well as for Mel and me. We appreciate it so much. There have been very difficult moments and extremely happy ones as well. We have a hard summer ahead of us, but I have faith that we'll make it though.
Overall, the appointment went well. His ECHO came out great. His heart function is "great" and still has very minimal, nothing-to-worry-about, tricuspid valve leakage. His blood pressure was beautiful. BUT...if you know me, then you know that I am more of a "focus on the details" person, not so much a "big picture" person. So, while the big picture is that he's doing great and fine.....there are a few smaller details that have drawn some concern. There aren't any immediate dangers, but things to keep an eye on and, yes, things for me to stress over....because I'm a mom!
So, the details. Well, his O2 sats were running a little high. They were at 88-90%. I know that sounds good, but for his anatomy and his size, its a red flag. What has happened, is that Mateo's body has developed something called "collaterals".
Most in the heart world know what these are, but for those who do not know, I will explain (I was in the "don't know" category before Mateo was born!).
Normal-heart people tend to have a blood oxygen saturation of 96%-100%. Because of Mateo's anatomy, his blood oxygen sats have been running 78%-80%. This means that his blood is not carrying as much oxygen to his body that a heart healthy person's blood does. Some of his blood remains "un-oxygenated". Still with me?
After a while, his body "realizes" its not getting the oxygen it thinks its needs, so its tries to "fix" the problem by growing extra blood vessels. The body is thinking, "more blood vessels = more blood which SHOULD = more oxygen". In theory, that would be correct. But the body is too smart for its own good and has over thought and over-fixed the issue. Now, because of collaterals, there is blood shunting to and from places that we don't want it to. So the cardiologist has to go in, via heart catheterization, to close off (with coils) those extra blood vessels that the body decided to grow.
This in and of itself isn't a huge issue because Mateo is in need of a pre-surgery heart cath anyway and she'll take care of all the extra collaterals then, if needed.
Also, Mateo's ASD continues to be a source of concern for Dr. Suh (Mateo's cardiologist). ASD stands for "atrial-septum defect". This is basically a hole in the wall that divides the left and right sides of his heart. Right now, its "okay" because only part of his blood flows through that hole. After his next surgery, ALL of his blood will flow through that hole, so it will need to be much bigger. The plan is to have the surgeon carve out the ASD and make it bigger during his next surgery.
SO...here's our plan. I want to spend some time with my family in Wisconsin soon. Instead of taking care of the collaterals (extra blood vessels) NOW, we will wait. Dr. Suh's logic is that his O2 sats are currently almost 90% ....which really isn't an immediate danger thing. But since we're flying, she worries about closing them before then. If she closes those collaterals now, then that will cause his O2 sats to fall....probably closer to 75-80%. This makes Mateo more cyanotic and he will look "blue" because there won't be as much oxygen in his blood. Then if we fly, even though the cabin is pressurized, the O2 in the airplane isn't the same as the O2 on the ground and that could make his O2 sats go even lower. So she feels its best to wait til after our trip sometime to close off those collaterals. Remember, lower O2 sats means the body isn't receiving optimal amount of oxygen....this includes the brain! Too low of O2 sats for a too long period of time can cause brain damage.
She's also on vacation sometime coming up. So factoring everything in, we have decided to see her again on June 6th. This appointment will be a pre-catheteriztion work-up. She is expecting it to be an out-patient procedure where Mateo can most likely go home the same night that the cath is performed.
After reviewing the results from the cath, she is going to present it to the "board of surgeons" or whatever they call themselves. They will decide a surgery "plan" from there. Mateo WILL be having his 3rd open heart surgery, called the extra-cardiac Fontan, in June. No more pushing it back. That's when it WILL be.
So prayers are appreciated. I know many of you are praying daily for Mateo already as well as for Mel and me. We appreciate it so much. There have been very difficult moments and extremely happy ones as well. We have a hard summer ahead of us, but I have faith that we'll make it though.
Subscribe to:
Posts (Atom)
