October
In support of
Sadie Long
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Sadie Long
Its hard to believe we're in October.
Sadie had clinic last week and it's taken me a moment to get over the stumble of it. I have to continue to remind myself that sometimes progress doesn't look like we want it to- and that she just had a heart transplant in July- it will take time to heal and build up endurance and we are finding her new normal- which can come with some barriers and boundaries that we discover by bumping into them.
One of the more pressing concerns is that Sadie has some uneven pressure in one of her heart connections. When you get a heart transplant there are four primary surgical connections: Left and Right Atriums, Pulmonary, and Aorta. So the connection is made up half of Sadie's body and half of the donor's heart. Within her Aortic connection the pressure from her body and pressure from the heart are not even- they are so uneven that it's caused a red flag from her team and they will be sending in a specialized probe to measure the actual pressure during her heart Cath this month. Depending on what those pressures are there are options. For older children and adults most of the time it's left to grow on it's own and even out- not a big concern. For younger children balloons have been placed to help and for even younger children stents have been the answer. What treatment Sadie will need will be determined during the procedure.
Her heart monitor results came back and Sadie is experiencing runs of PVCs- which are extra heart beats that don't fit into her normal rhythm and originate in the lower portion of the heart instead of the upper portion. On their own PVCs can be harmless, most people have them, healthy people have them- the heart is a powerful organ that sometimes gets disruptive. Unfortunately Sadie is also in a sort of constant state of being in a junctional rhythm. Which means her heart beat is being paced by the AV node instead of the SA node. So the main pace making guy (SA node) sometimes fails and the heart has a back up guy (AV node) and her heart is relying on that back up node. Typically it can be treated with medication that slows the heart- but- Sadie's natural pace sits her in a slower rate- especially at night when shes sleeping- so we wont be doing that. The EP team has reviewed that data and are not currently concerned with the findings- it can be normal for a pediatric transplant patient to experience junctional, she was in it quite often while in recovery in the CICU. She's also not currently experiencing any additional symptoms- she's not dizzy, not fainting, not unable to function normally- which is a positive sign, so for now we monitor it and see what happens. This is where faith has to carry.
Sadie's cellular data is also coming back concerning. There's a cluster of cells that appears to have some striations on them which can be indicative of rejection. However, none of Sadie's other tests support that- so the plan is to add a few more tests to her next heart Cath. Fortunately she's due for her next Cath on the 14th of this month, so her team is going to wait for the Cath and add tests to contrast her cells more so they can get a better idea of what's causing the striations- and if it is rejection- what grade it is and how to mitigate it.
Sadie also met with dermatology recently and they've increased her antihistamine to try to prevent the sudden outbreak of hives she's been experiencing. They've also mapped possible future routes to help with the excessive dryness associated with her condition and to prevent skin infections from dirt/germ exposure to any cuts or cracks which Sadie can experience a lot of.
Two steps forward- one step back. We're still making progress. Every inch matters and sometimes progress is just not going backwards. Sadie woke up this morning and wanted to go on a walk with the dogs- something we've done quite a few times since being home- we made it 20 feet out the door and she looked me and said "I can't do this today". We turned around and came home and after checking her vitals she was okay, not in a bad way, but her rate was elevated for her- and working harder- and that's okay- today wasn't a good day for a walk. Today is a good day for a movie on the couch and some reading.
It's a reminder that this isn't temporary, this is a life long journey we'll be navigating- and some days will be incredible because of everything that she can accomplish and others will just be incredible because we get to spend them together.
Sadie had clinic last week and it's taken me a moment to get over the stumble of it. I have to continue to remind myself that sometimes progress doesn't look like we want it to- and that she just had a heart transplant in July- it will take time to heal and build up endurance and we are finding her new normal- which can come with some barriers and boundaries that we discover by bumping into them.
One of the more pressing concerns is that Sadie has some uneven pressure in one of her heart connections. When you get a heart transplant there are four primary surgical connections: Left and Right Atriums, Pulmonary, and Aorta. So the connection is made up half of Sadie's body and half of the donor's heart. Within her Aortic connection the pressure from her body and pressure from the heart are not even- they are so uneven that it's caused a red flag from her team and they will be sending in a specialized probe to measure the actual pressure during her heart Cath this month. Depending on what those pressures are there are options. For older children and adults most of the time it's left to grow on it's own and even out- not a big concern. For younger children balloons have been placed to help and for even younger children stents have been the answer. What treatment Sadie will need will be determined during the procedure.
Her heart monitor results came back and Sadie is experiencing runs of PVCs- which are extra heart beats that don't fit into her normal rhythm and originate in the lower portion of the heart instead of the upper portion. On their own PVCs can be harmless, most people have them, healthy people have them- the heart is a powerful organ that sometimes gets disruptive. Unfortunately Sadie is also in a sort of constant state of being in a junctional rhythm. Which means her heart beat is being paced by the AV node instead of the SA node. So the main pace making guy (SA node) sometimes fails and the heart has a back up guy (AV node) and her heart is relying on that back up node. Typically it can be treated with medication that slows the heart- but- Sadie's natural pace sits her in a slower rate- especially at night when shes sleeping- so we wont be doing that. The EP team has reviewed that data and are not currently concerned with the findings- it can be normal for a pediatric transplant patient to experience junctional, she was in it quite often while in recovery in the CICU. She's also not currently experiencing any additional symptoms- she's not dizzy, not fainting, not unable to function normally- which is a positive sign, so for now we monitor it and see what happens. This is where faith has to carry.
Sadie's cellular data is also coming back concerning. There's a cluster of cells that appears to have some striations on them which can be indicative of rejection. However, none of Sadie's other tests support that- so the plan is to add a few more tests to her next heart Cath. Fortunately she's due for her next Cath on the 14th of this month, so her team is going to wait for the Cath and add tests to contrast her cells more so they can get a better idea of what's causing the striations- and if it is rejection- what grade it is and how to mitigate it.
Sadie also met with dermatology recently and they've increased her antihistamine to try to prevent the sudden outbreak of hives she's been experiencing. They've also mapped possible future routes to help with the excessive dryness associated with her condition and to prevent skin infections from dirt/germ exposure to any cuts or cracks which Sadie can experience a lot of.
Two steps forward- one step back. We're still making progress. Every inch matters and sometimes progress is just not going backwards. Sadie woke up this morning and wanted to go on a walk with the dogs- something we've done quite a few times since being home- we made it 20 feet out the door and she looked me and said "I can't do this today". We turned around and came home and after checking her vitals she was okay, not in a bad way, but her rate was elevated for her- and working harder- and that's okay- today wasn't a good day for a walk. Today is a good day for a movie on the couch and some reading.
It's a reminder that this isn't temporary, this is a life long journey we'll be navigating- and some days will be incredible because of everything that she can accomplish and others will just be incredible because we get to spend them together.
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