Ayden "failed" his 4th pacing study today. It took a little bit longer for the electrophysiologist to induce an SVT, but it was still relatively easy to do. The upshot is that they continue to believe they are making progress. They are going to give him all three medications and try again on Thursday morning. We joked this morning that, at this rate, Ayden will soon be able to administer his own pacing study - we'll just put him in the room and he'll let us know when he's done.
I believe I am finally getting a handle on this whole thing. Ayden has a an extra electrical pathway in his heart. I believe this extra pathway conducts the electrical signal more quickly than his normal pathway, which produces an extra, early beat. That beat starts the SVT. They think the medication he is currently on has stopped that issue. However, the extra pathway is apparently able to conduct a signal in both directions (up and down) through his heart, thus allowing a signal to travel back in the wrong direction, cause an early beat, and start the SVT. It is this problem that they are still working on. Hopefully, the three medications will take care of it.
As before, Ayden just powers right through the whole process. He required very little sedation (less than they had planned to give him and less than he got on Sunday). After he was back in his room, he again took a good amount of formula from his bottle. The kid's a machine.
June 8, 2010
June 7, 2010
Living a Life of Isolation
Ayden was born seven weeks ago today. I have to reread that in order to really believe it. That means he's been in the hospital for seven weeks now, also. Essentially, so have Allison and I. Although after these seven weeks both of us have now slept at home on several occasions, the majority of our time over this period has been spent at the hospital. This is especially true for Allison, since she spends the weekdays there while I am working (I take over on the weekends so she can go home). Since we moved out of the Ronald McDonald House what seems like forever ago, the two of us have slept in the same room (Ayden's hospital room) exactly once. Every other night, one of us sleeps at home while the other "sleeps" at the hospital. We basically see each other for a couple of hours each day, at most, and under very abnormal circumstances.
This existence is incredibly isolating. Not only are we typically at the hospital by ourselves, even when we are at home, we are alone. It goes without saying this is far from ideal, on many levels. Each day this arrangement continues is harder and more frustrating (undoubtedly, Ayden's nurses and doctors would attest to the latter). We just want to bring our little guy home, to feel like a husband and a wife again, to be a family.
Even when we bring Ayden home, we will be isolated. Not from each other, but from the rest of the world. Because his body would be overly taxed if it had to fight off some kind of illness, we will not be able to take him to public places, to visit friends or family, or possibly to even allow anyone to visit us. We will essentially be living as hermits until after his second surgery. Again, far from ideal.
How we will be able to continue in this manner - living an isolated life - I do not know. If not for the grace of God, we wouldn't have made it this far. Therein lies the answer, I suppose. I'm just ready for this part of the process to be over. I'm ready to be done with the hospital for a while. I'm ready to be home with my wife and son. Contrary to what Allison has said in being too harsh on herself, I don't believe this - wanting some semblance of a normal life - to be a selfish desire. I'm ready for it. Allison is ready for it. I just want Ayden to be ready for it, too.
Friday evening was a needed reminder that Ayden still needs to be at the hospital. He continues to dutifully carry out the most recent task I have given him: to let us know whether or not he is ready to go home, to not allow the doctors to send him there until it's the right time. Before each pacing study, I have told him to let us know if it's time. Each time, I have told him it's okay if he's not ready to go home yet. He has done his job, and I am grateful for it. I don't even want to think of the consequences if we had been home Friday night when he had the SVT. His reaction when he has one doesn't appear to be to scream or cry, so there's no telling how long it would have been before we'd have realized it was happening. Because he was still at the hospital and hooked up to the monitors, we knew right away.
SVTs aside, Ayden continues to make his father very proud. He has been such a trooper through all of this. He just bounces right back from whatever pops up. He's come out no worse for the wear after each pacing study. He was taking a full bottle within 10 minutes of having an SVT Friday night. He continues to buck the odds by taking all of his food and medication by mouth (his pediatric cardiologist says Ayden would be only the second of her patients in her career to go home without a feeding tube). As of tonight, he's eaten his way up to a weight of 8.5lbs (not even two weeks ago, he still weighed less than 7lbs). He grunts (grunting seems to be his response to just about every situation), he makes his faces, he sticks his tongue out, he smiles (Allison claims he laughs now, but I haven't heard it). He's just simply unfazed by it all. The doctors continue to be impressed with his recovery. It seems like the all of the nurses in the building know who he is, even if they haven't seen him, and when they do see him, they all dote over him (at some point, we will have to post a list of quotes from his various doctors and nurses).
God has truly blessed us with an amazing little man. I have seen all of the ultrasounds, all of the ECHOs, all of the EKGs. I know what all of the doctors have said. I know the reason behind the surgeries he's had or will have. I know all of that.
Yet, somehow, Ayden has more heart than most adults. And I couldn't be prouder.
This existence is incredibly isolating. Not only are we typically at the hospital by ourselves, even when we are at home, we are alone. It goes without saying this is far from ideal, on many levels. Each day this arrangement continues is harder and more frustrating (undoubtedly, Ayden's nurses and doctors would attest to the latter). We just want to bring our little guy home, to feel like a husband and a wife again, to be a family.
Even when we bring Ayden home, we will be isolated. Not from each other, but from the rest of the world. Because his body would be overly taxed if it had to fight off some kind of illness, we will not be able to take him to public places, to visit friends or family, or possibly to even allow anyone to visit us. We will essentially be living as hermits until after his second surgery. Again, far from ideal.
How we will be able to continue in this manner - living an isolated life - I do not know. If not for the grace of God, we wouldn't have made it this far. Therein lies the answer, I suppose. I'm just ready for this part of the process to be over. I'm ready to be done with the hospital for a while. I'm ready to be home with my wife and son. Contrary to what Allison has said in being too harsh on herself, I don't believe this - wanting some semblance of a normal life - to be a selfish desire. I'm ready for it. Allison is ready for it. I just want Ayden to be ready for it, too.
***
Friday evening was a needed reminder that Ayden still needs to be at the hospital. He continues to dutifully carry out the most recent task I have given him: to let us know whether or not he is ready to go home, to not allow the doctors to send him there until it's the right time. Before each pacing study, I have told him to let us know if it's time. Each time, I have told him it's okay if he's not ready to go home yet. He has done his job, and I am grateful for it. I don't even want to think of the consequences if we had been home Friday night when he had the SVT. His reaction when he has one doesn't appear to be to scream or cry, so there's no telling how long it would have been before we'd have realized it was happening. Because he was still at the hospital and hooked up to the monitors, we knew right away.
SVTs aside, Ayden continues to make his father very proud. He has been such a trooper through all of this. He just bounces right back from whatever pops up. He's come out no worse for the wear after each pacing study. He was taking a full bottle within 10 minutes of having an SVT Friday night. He continues to buck the odds by taking all of his food and medication by mouth (his pediatric cardiologist says Ayden would be only the second of her patients in her career to go home without a feeding tube). As of tonight, he's eaten his way up to a weight of 8.5lbs (not even two weeks ago, he still weighed less than 7lbs). He grunts (grunting seems to be his response to just about every situation), he makes his faces, he sticks his tongue out, he smiles (Allison claims he laughs now, but I haven't heard it). He's just simply unfazed by it all. The doctors continue to be impressed with his recovery. It seems like the all of the nurses in the building know who he is, even if they haven't seen him, and when they do see him, they all dote over him (at some point, we will have to post a list of quotes from his various doctors and nurses).
God has truly blessed us with an amazing little man. I have seen all of the ultrasounds, all of the ECHOs, all of the EKGs. I know what all of the doctors have said. I know the reason behind the surgeries he's had or will have. I know all of that.
Yet, somehow, Ayden has more heart than most adults. And I couldn't be prouder.
Deja vu, all over again.
One of these pacing studies needs to work soon - I'm running out of ideas for post titles about them.
Pacing study #4 is scheduled for tomorrow (Tuesday) morning at 8 a.m. Since the failed attempt on Sunday, Ayden has been getting increased doses of both anti-SVT medications. The electrophysiologist believes that the medications are having at least a partial effect at this point. He believes the meds have counteracted the extra electrical pathway (this is Wolff-Parkinson-White Syndrome) in Ayden's heart that sends the signal down, but he has not yet found the right drug cocktail to stop what I understand to be a looping signal that comes back up (I'm still trying to wrap my head around all of this, as you can probably guess). Dr. Fish, by all accounts one of the best doctors in this field, says the difficulty in figuring out how to treat Ayden's arrhythmia is not all that out of the ordinary, which makes me feel a lot better about the whole thing. I'm glad to know that his case is not a statistical outlier.
At any rate, we'll see what (hopefully doesn't) happen tomorrow.
Pacing study #4 is scheduled for tomorrow (Tuesday) morning at 8 a.m. Since the failed attempt on Sunday, Ayden has been getting increased doses of both anti-SVT medications. The electrophysiologist believes that the medications are having at least a partial effect at this point. He believes the meds have counteracted the extra electrical pathway (this is Wolff-Parkinson-White Syndrome) in Ayden's heart that sends the signal down, but he has not yet found the right drug cocktail to stop what I understand to be a looping signal that comes back up (I'm still trying to wrap my head around all of this, as you can probably guess). Dr. Fish, by all accounts one of the best doctors in this field, says the difficulty in figuring out how to treat Ayden's arrhythmia is not all that out of the ordinary, which makes me feel a lot better about the whole thing. I'm glad to know that his case is not a statistical outlier.
At any rate, we'll see what (hopefully doesn't) happen tomorrow.
June 6, 2010
Sacrificed Cheez-Its: Will This Time Work?
1:45 PM Ugh. Induced SVT.
1:18 PM Ayden just went down to the PCCU for his third pacing study this week. We are prayerful that an SVT will NOT be easily induced!
1:18 PM Ayden just went down to the PCCU for his third pacing study this week. We are prayerful that an SVT will NOT be easily induced!
June 5, 2010
Ayden's "Thing"-- The SVT
Ayden was sound asleep in Bryan’s arms last night when the monitors started beeping. As long as we have now lived in the hospital, noisy machines are not enough to alarm us… or anyone else. Ayden is so small and moves so much that numbers can often be wrong. However, this time they very obviously weren’t, and I ran into the hallways exclaiming, “230!” The nurses knew exactly what I meant without clarifying. Ayden was going into an SVT… on his own. His heart rate had jumped to the 200’s and was climbing.
Bryan and I have seen this happen before. In fact, we saw him go into SVT three times in one day in the PCCU. Every time that Ayden has had one, he looks completely relaxed, like he’s out for a Sunday stroll. This time was not unlike the others.
And like the others, the nurses were easily able to get Ayden’s heart to settle down. This time they plopped an ice pack on his head. Five minutes later Ayden was eating more than a full feed of his Cheez-It formula. One would think that an SVT combined with slurping down a meal would tucker out a little one with a heart defect, but Ayden was wide awake and ready to play. For him, it was as if nothing had happened.
For us, well, we feel blessed that his SVTs have been so easily handled and that our little boy seems unphased by the event. We have determined that most children have a “thing” (or multiple things) that keeps them in the hospital, and Ayden’s “thing” would be these rapid heart rhythms. Could be worse. Could be better. We are hopeful that the doctors will figure out the correct combination of medications so that an SVT won’t be something that we would fear happening at home.
Having confidence that Ayden won’t have an SVT at home is the goal of the pacing study. Ayden was supposed to have a pacing study today. Dr. Fish, the expert doctor doing the pacing study, was going to come in on his Saturday especially for Ayden to see how Ayden faired on the new medication. Obviously, the pacing study is no longer needed. Based on last night’s episode, the medication isn’t working. Bryan jokes that Ayden had the SVT on his own so that he could spare everyone the pacing study the next day and so he could continue to eat overnight. The boy loves his Cheez-Its! (more on this below)
The doctors have increased his SVT medication dose, and Dr. Fish just came by to tell us that he looked at some of Ayden’s heart rhythms, was encouraged by what he saw, and wanted to do another pacing study tomorrow. While having a pacing study tomorrow will be everyone’s intention, please keep in mind that a room in the PCCU is needed to do this, and Children’s Hospital has been jammed with patients over the past couple of weeks.
Our kiddo will be upset by another pacing study because it means that he will have to go NPO again with his feeds. (NPO is a Latin abbreviation for “nil per os,” meaning “nothing by mouth.") In other words, they won’t let him have his Cheez-Its past a certain hour. Since Ayden has become quite the muncher (he exceeds his feed goal at every feed and has developed some chubby cheeks), he will be unhappy by the NPO status this evening. It will be the fourth time he has had feeds held in a week’s time in order to do a pacing study or to hopefully do a pacing study and then to have those plans fall through. Ayden squeals (and I do mean squeal… this is a new thing for him) at least thirty minutes before he is supposed to feed. There are moments when I wish the squeal would stop and others when I am so glad he knows to squeal, that he feels the sensation of an empty belly, which he didn’t know when he had the feeding tube. My favorite sounds are the ones he makes when he is feeding, and his belly is starting to feel full. Those sighs of contentment are priceless.
We have had some disappointing moments this week. I had one particular day that I cried a lot because I want so badly to take Ayden home where we all can rest and recover (before the next surgery) and do all the things that a mother envisions doing with her baby. I also miss my husband. Though we see each other for a few hours every day, it’s not the same. I recognize that these are selfish thoughts, selfish tears, and I am working to get it together. Besides, I have nothing to be upset about. Our baby boy is doing well. As the doctors keep telling me, “he looks good, he sounds good, his tummy is squishy.” He’s gaining weight, and he’s eating like a champ. He’s such a sweet baby. Bryan and I just fall in love with him over and over again.
I am praying for patience and trust. Ayden will come home when he is supposed to, and his miracle life will continue to be a witness of God’s Love and Healing Hand.
Bryan and I have seen this happen before. In fact, we saw him go into SVT three times in one day in the PCCU. Every time that Ayden has had one, he looks completely relaxed, like he’s out for a Sunday stroll. This time was not unlike the others.
And like the others, the nurses were easily able to get Ayden’s heart to settle down. This time they plopped an ice pack on his head. Five minutes later Ayden was eating more than a full feed of his Cheez-It formula. One would think that an SVT combined with slurping down a meal would tucker out a little one with a heart defect, but Ayden was wide awake and ready to play. For him, it was as if nothing had happened.
For us, well, we feel blessed that his SVTs have been so easily handled and that our little boy seems unphased by the event. We have determined that most children have a “thing” (or multiple things) that keeps them in the hospital, and Ayden’s “thing” would be these rapid heart rhythms. Could be worse. Could be better. We are hopeful that the doctors will figure out the correct combination of medications so that an SVT won’t be something that we would fear happening at home.
Having confidence that Ayden won’t have an SVT at home is the goal of the pacing study. Ayden was supposed to have a pacing study today. Dr. Fish, the expert doctor doing the pacing study, was going to come in on his Saturday especially for Ayden to see how Ayden faired on the new medication. Obviously, the pacing study is no longer needed. Based on last night’s episode, the medication isn’t working. Bryan jokes that Ayden had the SVT on his own so that he could spare everyone the pacing study the next day and so he could continue to eat overnight. The boy loves his Cheez-Its! (more on this below)
The doctors have increased his SVT medication dose, and Dr. Fish just came by to tell us that he looked at some of Ayden’s heart rhythms, was encouraged by what he saw, and wanted to do another pacing study tomorrow. While having a pacing study tomorrow will be everyone’s intention, please keep in mind that a room in the PCCU is needed to do this, and Children’s Hospital has been jammed with patients over the past couple of weeks.
Our kiddo will be upset by another pacing study because it means that he will have to go NPO again with his feeds. (NPO is a Latin abbreviation for “nil per os,” meaning “nothing by mouth.") In other words, they won’t let him have his Cheez-Its past a certain hour. Since Ayden has become quite the muncher (he exceeds his feed goal at every feed and has developed some chubby cheeks), he will be unhappy by the NPO status this evening. It will be the fourth time he has had feeds held in a week’s time in order to do a pacing study or to hopefully do a pacing study and then to have those plans fall through. Ayden squeals (and I do mean squeal… this is a new thing for him) at least thirty minutes before he is supposed to feed. There are moments when I wish the squeal would stop and others when I am so glad he knows to squeal, that he feels the sensation of an empty belly, which he didn’t know when he had the feeding tube. My favorite sounds are the ones he makes when he is feeding, and his belly is starting to feel full. Those sighs of contentment are priceless.
We have had some disappointing moments this week. I had one particular day that I cried a lot because I want so badly to take Ayden home where we all can rest and recover (before the next surgery) and do all the things that a mother envisions doing with her baby. I also miss my husband. Though we see each other for a few hours every day, it’s not the same. I recognize that these are selfish thoughts, selfish tears, and I am working to get it together. Besides, I have nothing to be upset about. Our baby boy is doing well. As the doctors keep telling me, “he looks good, he sounds good, his tummy is squishy.” He’s gaining weight, and he’s eating like a champ. He’s such a sweet baby. Bryan and I just fall in love with him over and over again.
I am praying for patience and trust. Ayden will come home when he is supposed to, and his miracle life will continue to be a witness of God’s Love and Healing Hand.
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