It's Wednesday. A full 48 hours from Jonah's Fontan surgery and it seems we have gotten over a huge hump in his recovery!!
Jonah had a really good evening and night last night. After allowing him to eat a little bit of applesauce and getting a better combination of pain control/mild sedation Jonah has been sweetly sleeping. Actually, sleeping more than obsessing over eating and drinking. It is such a relief!!!! It seriously seemed like his body was possessed. He was already very agitated to say the least but it seemed when we increased or bolused his IV pain meds he really went to the next level of irritable. Something like this'll be considered a paradoxical reaction to to those IV meds but- who knows?! We are trying to recall his Glenn and if the same response happened but the details are muddled.
From here on out the goal is to get the excess fluid out of his body. He has had roughly 1 liter of fluid out of his tiny 2 year old lungs!!!! Can you believe that?? He is peeing but in comparison to how much extra water weight he's carrying he still has a long way to go. His electrolytes are running only slightly below normal but this is par for the course because the diuretics take them all with it as he goes pee. Once he eats a little more he should be able to account for all those electrolytes himself.
Jonah's heart continues to stay strong!! We haven't done an echo yet to look at detailed heart function but everything else they monitor does not indicate there is anything to worry about. An EKG was done last night just to check what looked like a funky rhythm but even that showed normal sinus rhythm. What they saw was probably a result of a whopping cocktail of medication;-)
To all the Jonah fans out there--thank you for your continued love and support!! We are so grateful for each of you!! To our Lord, our Healer--thank you for bringing Jonah out of the darkness of recovery, and above all else, thank you for holding Jonah's heart in the palm of your hands and loving him like only You can do!!
How old am I?
Wednesday, October 3, 2012
Tuesday, October 2, 2012
Day 1, Part 2
Wow! I mean Woooooowww!! Jonah is officially post-Fontan. Between the hours of 7:31am and 9:30am yesterday we did not hear anything from the OR. About 11:00 they had him off bypass, closed him up and felt comfortable getting him to the Peds Surgical Heart Unit. By 12:30 Jonah was all settled in. To say that the surgery went fast is an understatement, but since his coming to the ICU, it's been "all hands on deck!!!" We apologize to everyone that we have not been getting updates out more often!!
First, surgery went fantastic!!! Here's the down and dirty...
* the Fontan surgery connects his inferior vena cava directly to the pulmonary arteries via a Gortex conduit. The right heart is bypassed completely to preserve the heart muscle and maintain good rhythms.
* they were able to use a 20mm conduit. This is an appropriate adult size that should last him long into the future without having to replace. See picture below...
* minimal bleeding while cutting the chest. No complications going on or off bypass.
* no fenestration done. Rob mentioned this...a fenestration is a small hole made to connect the new conduit and the right side of the heart allowing for a small mixing of blood that acts as a pressure release in the lungs. If the flow is too high in the lungs and the conduit resulting in resistance, they would do this.
As far as post-op recovery goes...there was no amount of forewarning that could have prepared us for this. It was looking like we needed a tranquilizer gun at one point. Jonah woke up with a froggy voice asking that I sing him the ABC's. Not bad, right?? He managed to stay calm & quiet for a quick visit from each of our friends and family that were here rooting for him all day. After dinner at the RMH and an ABC marathon, Jonah became like a little torpedo in his bed...and spiraling with him were his chest tubes, Foley catheter, transducers, IV and oxygen tubing EKG leads, etc... At one point he had himself in a standing position trying to get into my arms.
We were told that Jonah's body metabolizes sedation very quickly, which, means finding a safe dose to administer was a slippery slope. The team increased his drugs, tried new drugs, but this boy was not going down without a fight. I left at 4am, rob came over to break me until about 7:45 this morning. The entire night Jonah would struggle to find comfort only long enough to untangle everything before he was on all 4's again. It is truly a miracle that he did not pullout anything critical to his recovery.
This morning was only slightly better in that he didn't seem as restless for as long whenever he got up. Again we tried the medication route. By now Jonah sounded like a scratchy broken record... "Water! Milk! Cheese! Oodles (noodles)! Peanut butter! Until finally they allowed him to suck some water (melting ice cubes really) from a sponge. Well...you could hear the bells ringing- Halleluiah!!!! He loved this!!! And it was seriously the most adorable thing ever to watch him like a little bird with his mouth open waiting for more! Broke.my.heart!! After his tummy tolerated this they gave a very effective oral pain medication. He's been lights- -out ever since!!
A gigantic thanks us owed to our doctor and nurse today who were so amazing at helping us help Jonah!! We love you girls!!!!!
First, surgery went fantastic!!! Here's the down and dirty...
* the Fontan surgery connects his inferior vena cava directly to the pulmonary arteries via a Gortex conduit. The right heart is bypassed completely to preserve the heart muscle and maintain good rhythms.
* they were able to use a 20mm conduit. This is an appropriate adult size that should last him long into the future without having to replace. See picture below...
* minimal bleeding while cutting the chest. No complications going on or off bypass.
* no fenestration done. Rob mentioned this...a fenestration is a small hole made to connect the new conduit and the right side of the heart allowing for a small mixing of blood that acts as a pressure release in the lungs. If the flow is too high in the lungs and the conduit resulting in resistance, they would do this.
As far as post-op recovery goes...there was no amount of forewarning that could have prepared us for this. It was looking like we needed a tranquilizer gun at one point. Jonah woke up with a froggy voice asking that I sing him the ABC's. Not bad, right?? He managed to stay calm & quiet for a quick visit from each of our friends and family that were here rooting for him all day. After dinner at the RMH and an ABC marathon, Jonah became like a little torpedo in his bed...and spiraling with him were his chest tubes, Foley catheter, transducers, IV and oxygen tubing EKG leads, etc... At one point he had himself in a standing position trying to get into my arms.
We were told that Jonah's body metabolizes sedation very quickly, which, means finding a safe dose to administer was a slippery slope. The team increased his drugs, tried new drugs, but this boy was not going down without a fight. I left at 4am, rob came over to break me until about 7:45 this morning. The entire night Jonah would struggle to find comfort only long enough to untangle everything before he was on all 4's again. It is truly a miracle that he did not pullout anything critical to his recovery.
This morning was only slightly better in that he didn't seem as restless for as long whenever he got up. Again we tried the medication route. By now Jonah sounded like a scratchy broken record... "Water! Milk! Cheese! Oodles (noodles)! Peanut butter! Until finally they allowed him to suck some water (melting ice cubes really) from a sponge. Well...you could hear the bells ringing- Halleluiah!!!! He loved this!!! And it was seriously the most adorable thing ever to watch him like a little bird with his mouth open waiting for more! Broke.my.heart!! After his tummy tolerated this they gave a very effective oral pain medication. He's been lights- -out ever since!!
A gigantic thanks us owed to our doctor and nurse today who were so amazing at helping us help Jonah!! We love you girls!!!!!
Monday, October 1, 2012
Day 1 in the books
The day flew by and we are glad it's almost over. It's a huge relief to have this day behind us.
He flew through surgery faster than we expected. Thankfully they didn't have to do the fenestration (sp). He looked great when we finally got to see him, a little dusky, but not nearly as swollen as the first two surgeries. Since then it's been a fight to keep him resting peacefully. Within an hour of being with him he was trying to get up on all 4s and, in his groggy voice, asking to play with cars and of course for us to hold him. The nurses are trying to give him the right balance of narcotics without compromising other aspects of his recovery. So it's trial and error at this point. Each time he wakes up its a chaotic scene trying to help him get relaxed and comfortable without pulling out the dozens of tubes and wired he needs to be connected to. It's heart wrenching to see him writhe around and get tangled in all the crap he is hooked up to. And the more you have to untangle him, the more you have to delicately move him, and the more pissed he gets. Then repeat. We wish they could just sedate him so he would sleep straight through the next week, but that can't happen. Stacie and I are going to try shifts, where we rotate sleep at RMDH for a couple hours and then relieve each other. Stace has been a champ so far, but we have still a long road to recovery ahead and sleep and rest is going to be hard to come by.
We will post more details tomorrow but before I sign off, I want to thank all our friends and family for their support today. All the kind messages and prayers were overwhelming. At one point while in the waiting room it felt like half the room was filled with Team Jonah supporters and it really helped to pass those anxious hours while he was under the knife. It means so much to us and we are blessed to have such caring and kind friends and family in our lives. Thank you, we couldn't do this without you guys.
He flew through surgery faster than we expected. Thankfully they didn't have to do the fenestration (sp). He looked great when we finally got to see him, a little dusky, but not nearly as swollen as the first two surgeries. Since then it's been a fight to keep him resting peacefully. Within an hour of being with him he was trying to get up on all 4s and, in his groggy voice, asking to play with cars and of course for us to hold him. The nurses are trying to give him the right balance of narcotics without compromising other aspects of his recovery. So it's trial and error at this point. Each time he wakes up its a chaotic scene trying to help him get relaxed and comfortable without pulling out the dozens of tubes and wired he needs to be connected to. It's heart wrenching to see him writhe around and get tangled in all the crap he is hooked up to. And the more you have to untangle him, the more you have to delicately move him, and the more pissed he gets. Then repeat. We wish they could just sedate him so he would sleep straight through the next week, but that can't happen. Stacie and I are going to try shifts, where we rotate sleep at RMDH for a couple hours and then relieve each other. Stace has been a champ so far, but we have still a long road to recovery ahead and sleep and rest is going to be hard to come by.
We will post more details tomorrow but before I sign off, I want to thank all our friends and family for their support today. All the kind messages and prayers were overwhelming. At one point while in the waiting room it felt like half the room was filled with Team Jonah supporters and it really helped to pass those anxious hours while he was under the knife. It means so much to us and we are blessed to have such caring and kind friends and family in our lives. Thank you, we couldn't do this without you guys.
Short Term Pains for Long Term Gains...
...That's what Rob has been saying for the past few days. In our stronger moments this made sense, seemed so reasonable. It put this whole surgery into perspective. But we are human, we are weak, and we spent the better half of our weekend down right scared. However, last night as we were saying our prayers before bed...and "LIGHT broke in and brought me to my feet" ((Avett Brother fans out there;-) )) There was a voice in my head literally saying to me "Be not afraid. Be not afraid". I know that God has picked me up by my bootstraps before and again, I felt that swift kick in the pants. We were able to clear our heads, get packed up, and get ourselves to Hope this morning....Not without a few-thousand-tears though.
The OR nurses took Jonah back at 7:30 on the dot. The pre-op process was pretty smooth. Quick. They gave Jonah Versed about 10-15 min before going back. He seemed totally unaffected but then when we stood outside the OR door dropping him in the crib, he didn't make a peep. God is so good!!! Jonah was wiping our tears with his blankie. How strong! How brave is our boy!!
No word yet from the nurses on the inside. But we expect they are working on getting him to sleep, inserting his breathing tube and placing IV's. Cutting through the existing scar tissue takes time and they are careful to avoid excessive bleeding. We are in for a long day!!
Please pray for a swift start and NO SURPRISES!!!
All our love!!
The OR nurses took Jonah back at 7:30 on the dot. The pre-op process was pretty smooth. Quick. They gave Jonah Versed about 10-15 min before going back. He seemed totally unaffected but then when we stood outside the OR door dropping him in the crib, he didn't make a peep. God is so good!!! Jonah was wiping our tears with his blankie. How strong! How brave is our boy!!
No word yet from the nurses on the inside. But we expect they are working on getting him to sleep, inserting his breathing tube and placing IV's. Cutting through the existing scar tissue takes time and they are careful to avoid excessive bleeding. We are in for a long day!!
Please pray for a swift start and NO SURPRISES!!!
All our love!!
Tuesday, September 25, 2012
When did we get here??
I keep asking myself this question. Along with How? and Why?
To answer these questions, I must face a truth that my head and my heart are in constant battle with. Yes-our precious little boy, our sweet and silly 2 year old, in-fact, has only half of a working heart. For at least the past year, we have rested in a peace that only our GREAT GOD can deliver. We have received blessing after blessing in our day-to-day lives since Jonah's recovery from his Glenn surgery. But this "comfort zone" that we have become so familiar with and...have enjoyed so immensely seems to be crumbling underneath our feet. I don't like it. I am really scared of it.
When I think of the How's and Why's of Jonah's heart, I actually feel very content. Very confident. I know without the shadow of a doubt that Jesus has given us the most amazing gift in our son's life. When I was about 22 weeks pregnant with Jonah, Rob and I had a very discerning conversation with God. Right there- in the waiting room of the doctors office. From that moment to present day, I have felt free of the burdening thought that anything different from Jonah's life being the most joyful and successful is even possible. But as I think of WHEN we got to this point, only days away from his 3rd planned open heart surgery, I must admit that I am very scared. This fear keeps creeping in. It seems heavy. And these are moments when it is my head that wins the battle. For, surely, it is my heart that holds that sacred place of peace.
I get so sad when I think of the tease that is the time we've spent between Jonah's Glenn and Fontan. How did it go so fast? Did we make every moment count? When I really wrestle with why I feel so scared and so sad, the one thing I keep coming up with is having to watch Jonah go through this difficult procedure. It has been our privilege to guard and to protect him, to love and to nurture him. We are totally wrecked with the idea of letting him go...into the hands of his surgeons, under the abyss of anesthesia, to experience and endure the pain of recovery. We want take to take all of that away from him and take on all that weight upon our own shoulders. But if there ever was a 2 year old who can handle all of this, it is our mighty warrior. We have said this before, but when Jonah is faced with any kind of adversity, even the slightest bit of challenge... he will flourish...he will overcome. Any parent we have ever talked to, that of a child with a CHD or not, says that these types of life events are always harder on Mom and Dad. So much harder...I am not sure I even want Jonah to know. I want him to think of us as his brave and fearless parents.
With that, it seems like I have taken all of you on a bit of the emotional roller coaster that we have been on since waking up this past Sunday morning. I can't tell you how exciting it will be to get off this ride, to get on the other side of the Fontan. The anticipation of it seems like cruel and unusual punishment but we will get to the other side. And we will be witnesses to yet another miracle in our lives!! Of this I am absolutely sure!!! I know 5, 10, 20 years down the road we will be asking ourselves the same question..."When the heck did we get here??" And then Jonah will recount all of the memories of his triumphant life from kindergarten, to college, to marriage...and we will wonder no more. Praise God!
We love you to the moon--
and back, little buddy!!!
To answer these questions, I must face a truth that my head and my heart are in constant battle with. Yes-our precious little boy, our sweet and silly 2 year old, in-fact, has only half of a working heart. For at least the past year, we have rested in a peace that only our GREAT GOD can deliver. We have received blessing after blessing in our day-to-day lives since Jonah's recovery from his Glenn surgery. But this "comfort zone" that we have become so familiar with and...have enjoyed so immensely seems to be crumbling underneath our feet. I don't like it. I am really scared of it.
When I think of the How's and Why's of Jonah's heart, I actually feel very content. Very confident. I know without the shadow of a doubt that Jesus has given us the most amazing gift in our son's life. When I was about 22 weeks pregnant with Jonah, Rob and I had a very discerning conversation with God. Right there- in the waiting room of the doctors office. From that moment to present day, I have felt free of the burdening thought that anything different from Jonah's life being the most joyful and successful is even possible. But as I think of WHEN we got to this point, only days away from his 3rd planned open heart surgery, I must admit that I am very scared. This fear keeps creeping in. It seems heavy. And these are moments when it is my head that wins the battle. For, surely, it is my heart that holds that sacred place of peace.
I get so sad when I think of the tease that is the time we've spent between Jonah's Glenn and Fontan. How did it go so fast? Did we make every moment count? When I really wrestle with why I feel so scared and so sad, the one thing I keep coming up with is having to watch Jonah go through this difficult procedure. It has been our privilege to guard and to protect him, to love and to nurture him. We are totally wrecked with the idea of letting him go...into the hands of his surgeons, under the abyss of anesthesia, to experience and endure the pain of recovery. We want take to take all of that away from him and take on all that weight upon our own shoulders. But if there ever was a 2 year old who can handle all of this, it is our mighty warrior. We have said this before, but when Jonah is faced with any kind of adversity, even the slightest bit of challenge... he will flourish...he will overcome. Any parent we have ever talked to, that of a child with a CHD or not, says that these types of life events are always harder on Mom and Dad. So much harder...I am not sure I even want Jonah to know. I want him to think of us as his brave and fearless parents.
With that, it seems like I have taken all of you on a bit of the emotional roller coaster that we have been on since waking up this past Sunday morning. I can't tell you how exciting it will be to get off this ride, to get on the other side of the Fontan. The anticipation of it seems like cruel and unusual punishment but we will get to the other side. And we will be witnesses to yet another miracle in our lives!! Of this I am absolutely sure!!! I know 5, 10, 20 years down the road we will be asking ourselves the same question..."When the heck did we get here??" And then Jonah will recount all of the memories of his triumphant life from kindergarten, to college, to marriage...and we will wonder no more. Praise God!
We love you to the moon--
and back, little buddy!!!
Wednesday, September 19, 2012
Summer Fun and, oh yeah...the FONTAN!
Well, well, well. Here we are- 3 months since our last post! After Jonah's heart cath in June we received a "courtesy call" from Hope wondering if we would like to schedule Jonah's Fontan. At this point we had discussed our thoughts for holding out until October with our cardiologist. There did not seem to be any major red flags from the cath results so we we received the green light to enjoy the summer and schedule a later date.
And that date is......Drum roll, please......October 1st. That's right- 12 days!!! Those words sound like jibberish to me right now, but there is no denying it, summer is over, fall is beginning and we are kicking it off with a bang. We couldn't run from it forever. We can't ignore it and pretend like we are the parents of a healthy child with a whole working heart. The fact is is that we have to face this. We knew this day would come. But before I tap in to the emotions that come along with this day, we want to share with you some of the fun that we had this summer. After all, we were so blessed to have enjoyed the summer as we did and make the memories we have without the threat of another surgery hanging over our heads.
At the end of June we took a vacation with my family to Holland, Michigan for a week. We rented a house right off of Lake Michigan and packed in 8 adults, 2 kids and 2 dogs just a short 3 hours away from home. Jonah experienced alot of firsts during this time...cruising in...& driving Poppa's boat, fishing, roasting marshmallows around the campfire, and building sandcastles at the beach. But the most exciting could have been going to bed and waking up in the room adjoined with his cousin, Nola, which included running the length of the house in hysterical giggles.
We were honored to celebrate this blessed little boy again on July 30th, Jonah's 2nd birthday! This year was a smaller gathering short a few close family members due to their being sick that same week. The day brought a pleasant reprieve from the scorching heat we had all summer which was perfect for a party. To say the least, Jonah really loves anything in the family of cars, trucks, buses, trains or tractors. On a road trip to MN in May we played the movie Cars for him and he has since become best friends with Mater and McQueen...and all of their car buddies too;-) Around the same time Woody and Buzz joined the group and the movie Toy Story 3 had a permant spot in Jonah's DVR list. I mention this because we had the most adorable birthday cake made for him and it was, of course, Cars-themed. It must have happened sometime this spring when Jonah's reaction to or recognition of something he loves made his eyes absolutely dance with excitement that Rob and I seemed to indulge in the moments that provoked such joy. It is absolutely impossible to resist and utterly priceless. This birthday was full of those moments.
With the blistering heat we had this summer, we became regulars at a few local pools. To be honest, Jonah's very first pool experience was not all that pleasant. It was indoors, in the spring, but it was chilllly. On a 90+ degree day at the waters edge of a comfortable zero depth pool- Jonah found a new love for swimming.
We visited the Lincoln Park Zoo for the first time too. Next to cars, animals of all varieties are favorite of his.
Most recently, we took the kids for a ride on our Metra train. We don't live far from our train station which is very nice. Seeing how much fun Jonah had taking the choo-choo a few stops heading East makes the daily morning commute for Rob a little more cheerful:)
Finally, this summer included spending lots of time with family and friends. I can't think of anything more nostalgic than letting the kids stay up late on a hot summer night, running around in the yard with all the dirt and grime from the days play on their hands. So fun!!
P.S. I finished this on my phone so the format of this post is kinda weird;)
And that date is......Drum roll, please......October 1st. That's right- 12 days!!! Those words sound like jibberish to me right now, but there is no denying it, summer is over, fall is beginning and we are kicking it off with a bang. We couldn't run from it forever. We can't ignore it and pretend like we are the parents of a healthy child with a whole working heart. The fact is is that we have to face this. We knew this day would come. But before I tap in to the emotions that come along with this day, we want to share with you some of the fun that we had this summer. After all, we were so blessed to have enjoyed the summer as we did and make the memories we have without the threat of another surgery hanging over our heads.
At the end of June we took a vacation with my family to Holland, Michigan for a week. We rented a house right off of Lake Michigan and packed in 8 adults, 2 kids and 2 dogs just a short 3 hours away from home. Jonah experienced alot of firsts during this time...cruising in...& driving Poppa's boat, fishing, roasting marshmallows around the campfire, and building sandcastles at the beach. But the most exciting could have been going to bed and waking up in the room adjoined with his cousin, Nola, which included running the length of the house in hysterical giggles.
We were honored to celebrate this blessed little boy again on July 30th, Jonah's 2nd birthday! This year was a smaller gathering short a few close family members due to their being sick that same week. The day brought a pleasant reprieve from the scorching heat we had all summer which was perfect for a party. To say the least, Jonah really loves anything in the family of cars, trucks, buses, trains or tractors. On a road trip to MN in May we played the movie Cars for him and he has since become best friends with Mater and McQueen...and all of their car buddies too;-) Around the same time Woody and Buzz joined the group and the movie Toy Story 3 had a permant spot in Jonah's DVR list. I mention this because we had the most adorable birthday cake made for him and it was, of course, Cars-themed. It must have happened sometime this spring when Jonah's reaction to or recognition of something he loves made his eyes absolutely dance with excitement that Rob and I seemed to indulge in the moments that provoked such joy. It is absolutely impossible to resist and utterly priceless. This birthday was full of those moments.
With the blistering heat we had this summer, we became regulars at a few local pools. To be honest, Jonah's very first pool experience was not all that pleasant. It was indoors, in the spring, but it was chilllly. On a 90+ degree day at the waters edge of a comfortable zero depth pool- Jonah found a new love for swimming.
We visited the Lincoln Park Zoo for the first time too. Next to cars, animals of all varieties are favorite of his.
Most recently, we took the kids for a ride on our Metra train. We don't live far from our train station which is very nice. Seeing how much fun Jonah had taking the choo-choo a few stops heading East makes the daily morning commute for Rob a little more cheerful:)
Finally, this summer included spending lots of time with family and friends. I can't think of anything more nostalgic than letting the kids stay up late on a hot summer night, running around in the yard with all the dirt and grime from the days play on their hands. So fun!!
P.S. I finished this on my phone so the format of this post is kinda weird;)
Friday, June 8, 2012
Light bulb!
This past week of being home after Jonah's heart cath were some confusing and stressful days. Jonah came home last Saturday and went easily down for bed at 6:45p...he slept for 12 hours-fantastic!
Some time around Sunday evening when Jonah was starting to run out of gas, his body and head felt warm to the touch. Of course we were thinking fever, even though his cath sites looked good and infection-free. When we took his temperature- no temperature. But he was also acting like he wasn't really feeling good, not just tired. That night we woke up to hear him moaning and groaning on the monitor. Nothing like we have heard him do when he's gone through a typical teething phase, which is about the only reason he would be waking up in the middle of the night over the recent months. I couldn't shake the feeling that I needed to get up and check his temp again. No fever, but clearly uncomfortable and distressed. O2 Sats, normal. We brought him in to bed with us and he fell asleep pretty quick after getting some Ibuprofen. Come Monday, Jonah woke up feeling so-so and nothing seemed all that out of the ordinary. By nap time he was a disaster. He absolutely would not go down- after falling to sleep in my arms, the second he hit the crib he was up like a bolt of lightning. After several attempts, he finally got 2 hours in. When he woke up I gave him some Tylenol because he just seemed uncomfortable again; he wouldn't play, had a hard time finding a content position on my lap, and was over the top sensitive. About 30 minutes after Tylenol, he was like a totally different kid!! Bouncing off the walls, acting goofy, playing hard. We felt like we could maybe rule out a brewing infection by this point and by the way he acted before and after a little pain reliever, it really seemed like something else was bugging him. All the while, Jonah was getting back to his normal eating and potty patterns, so nothing there. We were making ourselves crazy trying to think of the possibilities, questioning whether we should bring him back in to have him examined again=Torture!
I called our Cardiologist that night trying my best to explain how Jonah had been acting and having a really hard time putting my finger on something definitive. He asked questions about facial swelling, oxygen saturations, signs/symptoms of infection. All I had for that was No, Nope, Nada. We hung up with the agreement to have him looked at by the Pediatrician in that maybe we were dealing with bad timing on teeth, an ear infection, or something totally random.
A top contender in the realm of possibilities Rob and I were stressing over was the adjustment that Jonah's body was experiencing to the change of blood flow after having 7 coils placed. After the Glenn, we knew that headaches were expected. Big change to blood flow with the Glenn. So we thought since they definitely tweaked things again going to the upper half of the body, a headache was certainly possible.
Finally, I talked with some fellow heart mom's who helped me think of some more pointed and specific questions to ask our cardiologist. I called him Wednesday morning on our way to work...and this is when the light bulb went on...
He said that the collateral vessels that they coiled off in the cath fed areas in and around the chest wall and ribs. "This can cause some pain and discomfort". Hellloooo?!?!?! That had to have been it! It shed A LOT of light on our particular situation. We love, love, love our cardiologist and entire medical team and respect the fact that they can't go around scaring parents over every single potential side effect under the sun. Because these kids are so different, there is literally no "textbook" to follow. But this kind of seemed like a "nice to know" sort of thing:)
A huge "thank you" to our fellow heart families out there!! The network of sharing our most personal joys, triumphs, pains, griefs, and "has your child ever experienced x-y-z" is PRICELESS!!!
A few pictures of our brave boy...
Some time around Sunday evening when Jonah was starting to run out of gas, his body and head felt warm to the touch. Of course we were thinking fever, even though his cath sites looked good and infection-free. When we took his temperature- no temperature. But he was also acting like he wasn't really feeling good, not just tired. That night we woke up to hear him moaning and groaning on the monitor. Nothing like we have heard him do when he's gone through a typical teething phase, which is about the only reason he would be waking up in the middle of the night over the recent months. I couldn't shake the feeling that I needed to get up and check his temp again. No fever, but clearly uncomfortable and distressed. O2 Sats, normal. We brought him in to bed with us and he fell asleep pretty quick after getting some Ibuprofen. Come Monday, Jonah woke up feeling so-so and nothing seemed all that out of the ordinary. By nap time he was a disaster. He absolutely would not go down- after falling to sleep in my arms, the second he hit the crib he was up like a bolt of lightning. After several attempts, he finally got 2 hours in. When he woke up I gave him some Tylenol because he just seemed uncomfortable again; he wouldn't play, had a hard time finding a content position on my lap, and was over the top sensitive. About 30 minutes after Tylenol, he was like a totally different kid!! Bouncing off the walls, acting goofy, playing hard. We felt like we could maybe rule out a brewing infection by this point and by the way he acted before and after a little pain reliever, it really seemed like something else was bugging him. All the while, Jonah was getting back to his normal eating and potty patterns, so nothing there. We were making ourselves crazy trying to think of the possibilities, questioning whether we should bring him back in to have him examined again=Torture!
I called our Cardiologist that night trying my best to explain how Jonah had been acting and having a really hard time putting my finger on something definitive. He asked questions about facial swelling, oxygen saturations, signs/symptoms of infection. All I had for that was No, Nope, Nada. We hung up with the agreement to have him looked at by the Pediatrician in that maybe we were dealing with bad timing on teeth, an ear infection, or something totally random.
A top contender in the realm of possibilities Rob and I were stressing over was the adjustment that Jonah's body was experiencing to the change of blood flow after having 7 coils placed. After the Glenn, we knew that headaches were expected. Big change to blood flow with the Glenn. So we thought since they definitely tweaked things again going to the upper half of the body, a headache was certainly possible.
Finally, I talked with some fellow heart mom's who helped me think of some more pointed and specific questions to ask our cardiologist. I called him Wednesday morning on our way to work...and this is when the light bulb went on...
He said that the collateral vessels that they coiled off in the cath fed areas in and around the chest wall and ribs. "This can cause some pain and discomfort". Hellloooo?!?!?! That had to have been it! It shed A LOT of light on our particular situation. We love, love, love our cardiologist and entire medical team and respect the fact that they can't go around scaring parents over every single potential side effect under the sun. Because these kids are so different, there is literally no "textbook" to follow. But this kind of seemed like a "nice to know" sort of thing:)
A huge "thank you" to our fellow heart families out there!! The network of sharing our most personal joys, triumphs, pains, griefs, and "has your child ever experienced x-y-z" is PRICELESS!!!
A few pictures of our brave boy...
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