"PICC" stands for peripherally inserted central catheter. It is a more dependable, longer lasting (especially with Ayden) alternative to an IV. It is one of many ways in which the doctors can have "access" to Ayden, which is to say it's one way they can quickly and easily inject him with something or draw blood. Unlike an IV, which is basically just a needle sticking into a vein, the catheter of a PICC line is extended deeper into the body, which allows for quicker dispersion of medications throughout the body and for better readings from blood tests. The team that puts it in uses imaging equipment - e.g., ultrasound or x-ray - to find a suitable vein, track its insertion through that vein, and check for final placement. Sometimes they get it in, sometimes they don't (especially with Ayden).
Ayden is on his third PICC line. The first, which he received while his was in the NICU, did not last very long, causing some major problems. The second was put in his right ankle during his first stay in the PCCU, about a week after his surgery. This one lasted a very long time. It was actually still working when Ayden had his arrest almost six weeks later. Even after the arrest, it worked. Unfortunately, for the ablation, Dr. Fish had to insert the RF catheter into Ayden's upper right leg, the same leg where the PICC was. Thus, Dr. Fish "broke" the PICC (he came right out and said he broke it the next day during rounds). We have forgiven him this indiscretion, as the ablation seems to have done its job. That's a trade off we're definitely willing to make.
The third one, inserted on Tuesday, is now in his right groin. While this is a stressful location for it, it is nowhere near as stressful as having the right atrial line (a line, as it sounds, going into his right atrium) hanging out from his chest (getting the PICC in allowed the RA line to come out). I was always worried about messing that one up, or worse, accidentally pulling it. The PICC is a much more manageable line from a parent perspective. We would've had to work really hard to screw up the one in his ankle.
July 2, 2010
Fear and Loathing in The Hospital
Our stay in the hospital is now approaching 11 weeks. Allow that to sink in for a moment: 11 weeks. For much of that time, we have been (relatively) spoiled. Ayden was doing exceptionally well. He was taking all of his food and medications by mouth. There was absolutely no discussion of any permanent feeding tube. For about three weeks, we basically had one foot out the door. All we were waiting on was getting the arrhythmia issue figured out. Then, three weeks ago, everything fell apart. Now, it's as if we are starting all over again, except with new and different challenges. And it's really testing my breaking point.
Learning the hard way that Ayden is living his life on the precipice has put me on it right there beside him. I am somewhat skittish around him now, although not as much as I was while he was still in the PCCU. I was used to a child that only had two things connected to him when I picked him up. Until recently, he had as many 6 or 7 lines going in or coming out, some in very scary places. I was fearful of picking him up, messing up something, and doing him serious harm. Over the weekend, as he was suffering through some major refluxing, I was worried I might jostle him and cause him to vomit.
His massive fail at his first swallow study after his arrest was a huge source of stress. My reaction to this area is mostly selfish, as I am scared of the idea of him having a g-tube in his side that I would be responsible for managing and monitoring. Feeding him by bottle is just so much easier. Not for him, but for me (eating for a baby, especially one with Ayden's condition, is like you or me running up and down a flight of stairs for 10-20 minutes). A huge weight was lifted off my shoulders when he passed his second study. (If he didn't have a history of being a bottle feeder, I'm not sure the doctors would've given him a second chance. I know he wasn't getting a third.)
The passing of Monday's swallow study gave us the green light to work on his bottle feeding again, just like we did the last time - start small and work our way up to full feeds. Several things, however, have conspired against us since then. Getting his PICC line in has basically cost us three days of practice. He had to go NPO Monday night because he would get sedation Tuesday morning when the line was put in. Sedation issues - sleeping through practice time, withdrawal, vomiting, dependency, etc. - carried over all the way into early Thursday morning. Later in the day yesterday was really the start of his practicing. While he is still doing some things well - he can latch on fine, his suck is strong - he still has a ways to go to get back to where he was. I don't know if his coordination hasn't returned yet, or if all of the coughing, refluxing, and vomiting he's gone through over the last 5+ days has made him scared of having liquid in his mouth, but right now he will take a couple of pulls from the bottle, hold the formula in his mouth instead of swallowing it, then freak out once too much accumulates. I have no idea if he can get this worked back out. If he can, I have no idea if he'll be given the time he would need to get there. Once again, the (still selfish) fears of a feeding tube are creeping back in.
In the grand scheme of things, I know these are all relatively minor issues. Once they start piling up, however, it wears you down quicker than you realize. Add in some extra ingredients - spending most of your time in a hospital (a stressful place, even on a good day), not seeing your wife enough, almost always being by yourself, not eating regularly, not sleeping regularly - and you have the perfect recipe for a breakdown. While Allison's breakdowns go in the "sad" direction, I get very testy, frustrated, and borderline angry. I had to apologize to one of his nurses over the weekend who had to deal with me in that state, especially since it had nothing to do with her.
I guess I have finally reached the point where all of this is just beating me down. It's winning the battle in my head and in my heart right now. I have tried to stay on an even keel, not just for my own well being but for that of Allison and Ayden, as well. I have tried to be the calming force in an otherwise violent storm. I don't feel at all calm right now. I find that I'm on pins and needles almost all the time. My heart jumps every time the phone rings.
I am so thankful Ayden is still with us and, by all objective measures, again doing well, but I have come to fear and loathe this existence. His second surgery simply cannot get here fast enough.
Learning the hard way that Ayden is living his life on the precipice has put me on it right there beside him. I am somewhat skittish around him now, although not as much as I was while he was still in the PCCU. I was used to a child that only had two things connected to him when I picked him up. Until recently, he had as many 6 or 7 lines going in or coming out, some in very scary places. I was fearful of picking him up, messing up something, and doing him serious harm. Over the weekend, as he was suffering through some major refluxing, I was worried I might jostle him and cause him to vomit.
His massive fail at his first swallow study after his arrest was a huge source of stress. My reaction to this area is mostly selfish, as I am scared of the idea of him having a g-tube in his side that I would be responsible for managing and monitoring. Feeding him by bottle is just so much easier. Not for him, but for me (eating for a baby, especially one with Ayden's condition, is like you or me running up and down a flight of stairs for 10-20 minutes). A huge weight was lifted off my shoulders when he passed his second study. (If he didn't have a history of being a bottle feeder, I'm not sure the doctors would've given him a second chance. I know he wasn't getting a third.)
The passing of Monday's swallow study gave us the green light to work on his bottle feeding again, just like we did the last time - start small and work our way up to full feeds. Several things, however, have conspired against us since then. Getting his PICC line in has basically cost us three days of practice. He had to go NPO Monday night because he would get sedation Tuesday morning when the line was put in. Sedation issues - sleeping through practice time, withdrawal, vomiting, dependency, etc. - carried over all the way into early Thursday morning. Later in the day yesterday was really the start of his practicing. While he is still doing some things well - he can latch on fine, his suck is strong - he still has a ways to go to get back to where he was. I don't know if his coordination hasn't returned yet, or if all of the coughing, refluxing, and vomiting he's gone through over the last 5+ days has made him scared of having liquid in his mouth, but right now he will take a couple of pulls from the bottle, hold the formula in his mouth instead of swallowing it, then freak out once too much accumulates. I have no idea if he can get this worked back out. If he can, I have no idea if he'll be given the time he would need to get there. Once again, the (still selfish) fears of a feeding tube are creeping back in.
In the grand scheme of things, I know these are all relatively minor issues. Once they start piling up, however, it wears you down quicker than you realize. Add in some extra ingredients - spending most of your time in a hospital (a stressful place, even on a good day), not seeing your wife enough, almost always being by yourself, not eating regularly, not sleeping regularly - and you have the perfect recipe for a breakdown. While Allison's breakdowns go in the "sad" direction, I get very testy, frustrated, and borderline angry. I had to apologize to one of his nurses over the weekend who had to deal with me in that state, especially since it had nothing to do with her.
I guess I have finally reached the point where all of this is just beating me down. It's winning the battle in my head and in my heart right now. I have tried to stay on an even keel, not just for my own well being but for that of Allison and Ayden, as well. I have tried to be the calming force in an otherwise violent storm. I don't feel at all calm right now. I find that I'm on pins and needles almost all the time. My heart jumps every time the phone rings.
I am so thankful Ayden is still with us and, by all objective measures, again doing well, but I have come to fear and loathe this existence. His second surgery simply cannot get here fast enough.
A is for "Ayden"...... and for "Addict"
I am now the proud father of an addict (FYI: my main coping/defense mechanism is (sometimes rather dark) humor). After dealing pretty well with the weaning off the sedation he had started receiving after his arrest, Ayden is now dependent on those drugs.
On Tuesday morning, Ayden went down to interventional radiology. Their goal was to get a PICC line in Ayden so the RA line in his lower chest could be removed. (They use imaging equipment to aid them in the process). Ayden received a pretty decent amount of sedation, but not to the level of a general anesthetic. After the line was inserted, he was sent to the PCCU. Once there, the PICC's dressing needed to be redone. He got a sedative for this, also. Then, that night, he got his regularly scheduled sedative. I think it is all of this that pushed him into the realm of dependency.
He started showing signs of withdrawal during the day Wednesday. By that evening, he had accumulated quite a list of symptoms: sweating, anxiety/inconsolability, easily startled, vomiting. It goes without saying Wednesday was very stressful. He was very clearly not happy. He couldn't stay asleep. He cried much of the time. It completely disrupted his feeding, as he couldn't keep anything down. And there wasn't really anything we could do.
While I'm sure many of frequenters of this blog can relate to the fear and frustration that comes with having a child that you simply can't console or make better, when it is a child who has a very serious heart defect, the fear and frustration are raised to new heights. As we learned in the "care conference" (more on this here) we attended earlier this week, any random, seemingly little thing can set a hypoplast baby off on a downward spiral, including a single instance of vomiting. You better believe that was in the back of my head every time I knew he was about to puke, which happened numerous times. Pile that on top of the already heightened fear I have been dealing with since his emergent episode and you get a very stressed out and on edge parent (more on this here).
Both Allison and I spent much of Wednesday night very worried about Ayden. We did not know until late what was really going on (that he was knocked out shortly after getting his scheduled dose was the final confirmation of his dependency). I left the hospital at 9:30 p.m., fully intending to go home, get some clothes for work for the next day, and go back to the hospital to stay the night. I was apparently so mentally and emotionally spent by the time I left that I almost fell asleep while driving home. It was too dangerous for me to try to go back, so I had to leave Allison to deal with the scariness of the situation by herself.
In the end, at least, it has worked out. So far. Sedative dependency is something that can be dealt with. I am grateful the problem was not something more sinister. I am grateful Ayden had a very good day Thursday with Allison (she says she played with him all day) after having such a miserable time of it the two days prior.
More than ever, it is clear we have no idea what the next day will bring.
On Tuesday morning, Ayden went down to interventional radiology. Their goal was to get a PICC line in Ayden so the RA line in his lower chest could be removed. (They use imaging equipment to aid them in the process). Ayden received a pretty decent amount of sedation, but not to the level of a general anesthetic. After the line was inserted, he was sent to the PCCU. Once there, the PICC's dressing needed to be redone. He got a sedative for this, also. Then, that night, he got his regularly scheduled sedative. I think it is all of this that pushed him into the realm of dependency.
He started showing signs of withdrawal during the day Wednesday. By that evening, he had accumulated quite a list of symptoms: sweating, anxiety/inconsolability, easily startled, vomiting. It goes without saying Wednesday was very stressful. He was very clearly not happy. He couldn't stay asleep. He cried much of the time. It completely disrupted his feeding, as he couldn't keep anything down. And there wasn't really anything we could do.
While I'm sure many of frequenters of this blog can relate to the fear and frustration that comes with having a child that you simply can't console or make better, when it is a child who has a very serious heart defect, the fear and frustration are raised to new heights. As we learned in the "care conference" (more on this here) we attended earlier this week, any random, seemingly little thing can set a hypoplast baby off on a downward spiral, including a single instance of vomiting. You better believe that was in the back of my head every time I knew he was about to puke, which happened numerous times. Pile that on top of the already heightened fear I have been dealing with since his emergent episode and you get a very stressed out and on edge parent (more on this here).
Both Allison and I spent much of Wednesday night very worried about Ayden. We did not know until late what was really going on (that he was knocked out shortly after getting his scheduled dose was the final confirmation of his dependency). I left the hospital at 9:30 p.m., fully intending to go home, get some clothes for work for the next day, and go back to the hospital to stay the night. I was apparently so mentally and emotionally spent by the time I left that I almost fell asleep while driving home. It was too dangerous for me to try to go back, so I had to leave Allison to deal with the scariness of the situation by herself.
In the end, at least, it has worked out. So far. Sedative dependency is something that can be dealt with. I am grateful the problem was not something more sinister. I am grateful Ayden had a very good day Thursday with Allison (she says she played with him all day) after having such a miserable time of it the two days prior.
More than ever, it is clear we have no idea what the next day will bring.
The Care Conference
The hospital gives a patient's parents the option to call a "care conference." I do not know if this can be done at any time. It is most definitely available after a patient has experienced an emergent situation, as Ayden did three weeks ago. Allison and I requested such a conference, which occurred on Tuesday. It was attended by us, our social worker, Ayden's nurse from that day, and six doctors (including the director of pediatric cardiology). At least two of these doctors were in the room with Ayden when he arrived to the PCCU and were involved in saving his life (including performing CPR). Here is what we learned (or didn't learn):
- Ayden was "stable" when he started his trip down to the PCCU. His heart rate was acceptable (a little over 100), but still low by his standards. He was awake and crying.
- Upon his arrival to the PCCU, he received some adrenaline to help with his heart rate. It helped, but only for a brief period.
- His heart rate started to slow again. Dr. Fish attempted to use an external pacemaker to keep the rate up, but it was not able to "capture" Ayden's rhythm.
- His slowing heart rate was dropping his oxygen levels. His lower oxygen levels, in turn, were slowing his heart rate. This effectively created a downward spiral from which Ayden could not free himself.
- Within 15 minutes of his arrival in the PCCU, the decision had been made that Ayden could not produce a heart rate on his own that was sufficient to sustain his life. Thus, within 15 minutes of his arrival, the decision was made to use ECMO.
- His heart never stopped.
- CPR was performed while the ECMO connection was being made. One person was "bagging" him and providing breaths while another did the compressions. Many people helped with this over the 48 or so minutes he got CPR (performing CPR, even on an infant, is very tiring).
- During CPR, his body temperature was quite low. As odd as it sounds, this actually worked to his benefit. The colder temperature helped to "preserve" his tissues while they were receiving less oxygen.
- Once the ECMO connection was made, the doctors were very encouraged to see Ayden open his eyes and start to move around.
- They continued to be encouraged over the subsequent days as he continued to try to wake up.
- There were no signs of an infection. There was no indication he received an accidental overdose of any medication. No test results showed a dangerous level of any medication in his bloodstream.
- It appears he had an unusually sensitive reaction to a relatively low dose of one of the anti-SVT medications. That, when combined with the other two anti-SVT meds, may have simply slowed his heart rate down too much. This seems to be the best theory.
- It is still only a theory.
- No one can say for sure what caused Ayden's arrest.
- We will probably never know.
- Any number of random and otherwise innocuous events can send a child with HLHS into a downward spiral from which they cannot recover without help.
- Sometimes, they cannot recover at all.
- With help - both from the doctors and from God - Ayden recovered.
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