From the Trenches
What a week. Has it only been a week? I guess it's been a little longer.
.
We thought we were finally on the upswing Sunday. J still didn't have an appetite but he managed to choke down a chocolate Ensure and so he got releases from both the pediatrician and the surgeon making the weekend rounds. He came home with one JP drain still in place so I got a crash course in how to empty it, how to clean his incisions, how to record everything, and all that jazz. I was seriously out of my comfort zone (nursing of any kind is NOT my forte) but part of being a mother is being a nurse so onward we went. J was patient with it. He was just glad to be leaving the hospital.
Well, he was glad Sunday night. By Monday morning he was miserable. He was very uncomfortable and still didn't have an appetite. Terence had to work at the governor's inauguration so it was all me, trying to catch up around the house as much as possible, provide some much needed attention for the other kids, and deal with J's needs. He insisted on taking two hour long showers trying to deal with the discomfort. I checked his temperature and it seemed impossibly low. (Between 95-96.5 F) He felt ice cold. He complained that his back hurt-- I spent an hour rubbing his back (later, when Terence was home, he got out a portable massager and he and B took turns massaging J's back). I checked his discharge instructions, and none of his symptoms matched the things they told me to bring him back for (or that we needed to worry about). J started begging to go back to the hospital, and Terence and I weren't sure what to do again. How to know? J had major abdominal surgery and now he was off the IV pain meds. But if the problem was just pain, we knew he needed to cope with just the pills at home. Can't stay on IV meds forever.
But.
What we needed was someone to call. His discharge instructions gave us the number for his surgeon's office but when we called that, we got only the "call back during office hours" message. We tried the nurse helpline through our insurance and they told us we needed the surgeon. We tried the after hours care at his pediatrician's office (who hasn't seen him at all since this happened) and they told us we would get a call back from the on call nurse).
In the meantime I was texting Kristi. She was seriously worried about the symptoms. She thought maybe sepsis. I looked up the symptoms but wasn't convinced because the only one that seemed to match was the low body temp. While Terence and I were waiting for the nurse to call us back, Kristi messaged the bishop, who checked with his EMT son. Then he called and told us to take J back to the ER. Kristi messaged me and said don't wait for the dr office, go to ER. And Ladd (the EMT) contacted Terence directly and said call 911.
I don't have the words for what this was like. Words are my element, but when you have been short on sleep for days, your whole life is turned upside down, and you feel like you just don't know what's wrong-- well . . . I don't know. It was awful. Terence packed up for the ER while we waited to get a call back (he had only given the landline number for the call back). In the end we loaded up J and made the trip back to the ER. While we were on the way, the pediatrician's office called back (and B called us) saying YES, ER RIGHT NOW.
At the ER they got us in right away. By now his temp was back to normal and J said his pain level was only a 2 but his stomach was swollen and distended. They did another CT scan and said his intestines were twisted and blocked and he also had a pocket of infection (the abscess) behind the partial blockage. We got the wonderful news that he would need a tube inserted through his nose to drain his stomach.
And here is where the super fun begins. Keep in mind that I do not have a strong stomach-- also that J is a pretty stoic kid. While we were waiting for the tube, J projectile vomited everywhere. Since he pretty much had been living off liquids for a week, it was a lake covering the entire floor of the room. Housekeeping came in and cleaned it up, and Terence and J cleaned up as best they could (mostly their shoes). I was lucky, since I was sitting behind J. Well, lucky for now.
Then came the nose tube. For those who have never experienced this joy (like me), they take tubing and slide it in through your nose and down your throat to your stomach. And the kicker? They have to do it with the patient awake. The patient has to sip water through a straw and swallow while this is happening. They did a nebulizer treatment first that was supposed to mellow him out. Then the torture started. They warned us that J would gag-- which he did-- but then the projectile vomiting started again, getting J soaked, as well as hitting the nurse, the assistant, and me as well. Worse, we all just had to sit there (me now holding a hastily grabbed puke bag) while the nurse held the tube in place. It was not all the way in place, but she couldn't continue until we were sure he wasn't going to puke again. He continued to vomit, filling up at least three bags. They decided to wait until they could get him some anti-nausea meds. In the meantime, we needed to somehow get J out of his vomit-soaked clothes and into a hospital gown. Without shifting the halfway-inserted tube. In the end, it took four of us, and the assistant had to cut J out of his t-shirt.
And as you can imagine, J was not happy about all of this. But he didn't cry or complain. Yet. I was very proud of him.
After that they admitted him to the hospital and transferred him to a room upstairs. Where his new nurse learned that the tube had come out of place and would need to be adjusted. So more tube shoving up the nose, which J just did not like at all. By this time it was around midnight, again. Why does this stuff always happen in the middle of the night?
Anyway, we are stuck in the hospital indefinitely for now. And things have not been easy (nothing seems to be going well-- they put in a picc line but it took two hours because of problems with the machine and problems with J's veins not cooperating, leaking stomach gunk from the nose tube, and worst of all, having to go through the entire nose-tube-insertion again from scratch last night after J somehow managed to pull it out by accident). I have seen some tears now (though J is nowhere as teary as I am) and I've heard some complaints, though not nearly as much as I would have done in his place.
Please keep a restless 15 year old boy in your prayers. He needs it. We really want him to get well and come home. Our family needs him.
.
We thought we were finally on the upswing Sunday. J still didn't have an appetite but he managed to choke down a chocolate Ensure and so he got releases from both the pediatrician and the surgeon making the weekend rounds. He came home with one JP drain still in place so I got a crash course in how to empty it, how to clean his incisions, how to record everything, and all that jazz. I was seriously out of my comfort zone (nursing of any kind is NOT my forte) but part of being a mother is being a nurse so onward we went. J was patient with it. He was just glad to be leaving the hospital.
Well, he was glad Sunday night. By Monday morning he was miserable. He was very uncomfortable and still didn't have an appetite. Terence had to work at the governor's inauguration so it was all me, trying to catch up around the house as much as possible, provide some much needed attention for the other kids, and deal with J's needs. He insisted on taking two hour long showers trying to deal with the discomfort. I checked his temperature and it seemed impossibly low. (Between 95-96.5 F) He felt ice cold. He complained that his back hurt-- I spent an hour rubbing his back (later, when Terence was home, he got out a portable massager and he and B took turns massaging J's back). I checked his discharge instructions, and none of his symptoms matched the things they told me to bring him back for (or that we needed to worry about). J started begging to go back to the hospital, and Terence and I weren't sure what to do again. How to know? J had major abdominal surgery and now he was off the IV pain meds. But if the problem was just pain, we knew he needed to cope with just the pills at home. Can't stay on IV meds forever.
But.
What we needed was someone to call. His discharge instructions gave us the number for his surgeon's office but when we called that, we got only the "call back during office hours" message. We tried the nurse helpline through our insurance and they told us we needed the surgeon. We tried the after hours care at his pediatrician's office (who hasn't seen him at all since this happened) and they told us we would get a call back from the on call nurse).
In the meantime I was texting Kristi. She was seriously worried about the symptoms. She thought maybe sepsis. I looked up the symptoms but wasn't convinced because the only one that seemed to match was the low body temp. While Terence and I were waiting for the nurse to call us back, Kristi messaged the bishop, who checked with his EMT son. Then he called and told us to take J back to the ER. Kristi messaged me and said don't wait for the dr office, go to ER. And Ladd (the EMT) contacted Terence directly and said call 911.
I don't have the words for what this was like. Words are my element, but when you have been short on sleep for days, your whole life is turned upside down, and you feel like you just don't know what's wrong-- well . . . I don't know. It was awful. Terence packed up for the ER while we waited to get a call back (he had only given the landline number for the call back). In the end we loaded up J and made the trip back to the ER. While we were on the way, the pediatrician's office called back (and B called us) saying YES, ER RIGHT NOW.
At the ER they got us in right away. By now his temp was back to normal and J said his pain level was only a 2 but his stomach was swollen and distended. They did another CT scan and said his intestines were twisted and blocked and he also had a pocket of infection (the abscess) behind the partial blockage. We got the wonderful news that he would need a tube inserted through his nose to drain his stomach.
And here is where the super fun begins. Keep in mind that I do not have a strong stomach-- also that J is a pretty stoic kid. While we were waiting for the tube, J projectile vomited everywhere. Since he pretty much had been living off liquids for a week, it was a lake covering the entire floor of the room. Housekeeping came in and cleaned it up, and Terence and J cleaned up as best they could (mostly their shoes). I was lucky, since I was sitting behind J. Well, lucky for now.
Then came the nose tube. For those who have never experienced this joy (like me), they take tubing and slide it in through your nose and down your throat to your stomach. And the kicker? They have to do it with the patient awake. The patient has to sip water through a straw and swallow while this is happening. They did a nebulizer treatment first that was supposed to mellow him out. Then the torture started. They warned us that J would gag-- which he did-- but then the projectile vomiting started again, getting J soaked, as well as hitting the nurse, the assistant, and me as well. Worse, we all just had to sit there (me now holding a hastily grabbed puke bag) while the nurse held the tube in place. It was not all the way in place, but she couldn't continue until we were sure he wasn't going to puke again. He continued to vomit, filling up at least three bags. They decided to wait until they could get him some anti-nausea meds. In the meantime, we needed to somehow get J out of his vomit-soaked clothes and into a hospital gown. Without shifting the halfway-inserted tube. In the end, it took four of us, and the assistant had to cut J out of his t-shirt.
And as you can imagine, J was not happy about all of this. But he didn't cry or complain. Yet. I was very proud of him.
After that they admitted him to the hospital and transferred him to a room upstairs. Where his new nurse learned that the tube had come out of place and would need to be adjusted. So more tube shoving up the nose, which J just did not like at all. By this time it was around midnight, again. Why does this stuff always happen in the middle of the night?
Anyway, we are stuck in the hospital indefinitely for now. And things have not been easy (nothing seems to be going well-- they put in a picc line but it took two hours because of problems with the machine and problems with J's veins not cooperating, leaking stomach gunk from the nose tube, and worst of all, having to go through the entire nose-tube-insertion again from scratch last night after J somehow managed to pull it out by accident). I have seen some tears now (though J is nowhere as teary as I am) and I've heard some complaints, though not nearly as much as I would have done in his place.
Please keep a restless 15 year old boy in your prayers. He needs it. We really want him to get well and come home. Our family needs him.
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