I just got home from the hospital. Elizabeth's doing okay. Her spirits are good, but so far she's still growing bacteria in her blood, so we can't start the countdown to discharge (7-10 days from the 1st negative culture) yet. Matt spent the afternoon at home and I stayed with Elizabeth trying to get her moving a bit, and working on some crafts. She's still on contact precautions, so everyone (except family) who comes into the room, no matter how friendly, has to wear a gown, gloves and a mask (the picture)....not exactly a fun way to entertain visitors. Below is a bit more of the medical information of where we are and how we got here, since you're not all obligated to read Elizabeth's chart! If you want, or your neurons just aren't firing quickly tonight, you can skip to the prayer requests at the end..
**minor review - (skip it if you feel like you totally understand what's going on with Elizabeth medically speaking)** Elizabeth had an umbilical catheter when she was 3 days old and waiting for heart surgery. That is a risk factor for developing a clot. We'll never know for sure, but in all likelihood, a clot broke off and lodged itself in her portal vein (the vein that supplies blood to half of her liver). Initially, this caused a major infection (bacterial peritonitis) in her abdominal cavity when she was 9 mos. old (that's how we originally discovered the clot) Since then, that clot has caused her blood pressure to rise (called "portal hypertension"), and all the veins in her body to be under greater stress. Her body has done what it should and created new blood vessels to handle the pressure (called "collaterals") but the pressure is still not great and she remains at risk for a "major bleed" especially in the varicose veins (called "varices") in her esophagus where acid and popcorn etc. give them more grief. THAT is why she has endoscopies every 6 weeks...to check and make sure none are about to rupture. If they see one that's looking "ripe" they cauterize it off to protect her. Lastly, and the reason we're where we are today, the portal hypertension wrecks havoc on her spleen which gets all backed up and can't do its job of filtering out blood-borne infections. So a "bug" that your spleen would catch, hers doesn't. So she develops bacterimia. To prevent future infections, she's on "penicillin prophylaxis", but apparently it's typical that in winter, kiddos which poorly functioning spleens have these frequent "bacterimic episodes", and the system can't keep up. (4 episodes in 4 weeks??) So after this tour is all wrapped up, from now on, each time she spikes, we're supposed to bring her in to the hospital, for 48 hours if she doesn't grow bacteria, and for 7-10 days if she does...sigh.
Unfortunately, she's not a great candidate for a PIC line, (a more stable IV which would allow us to take her home and administer IV antibiotics here) because she's got a major clot in her liver (the cause of ALL our troubles at this point) and she's clotted off lines before...AND, since strep pneumo lives on the skin, a hole in her skin for an IV is a perfect way for her to get another infection. So for now, unless there are any other bright ideas from the Team, we're staying put.
So would you pray for a few specific things as we head into this week?
~Elizabeth needs to SLEEP. She's exhausted and yet struggles with insomnia while she's in the hospital.
~Continued protection of our whole family's health...if anyone gets sick, especially the kids, that makes us a lot less flexible.
~A big storm is supposed to be heading our way, with Ice tomorrow and 6-12 inches of snow on Tuesday...not exactly weather for shuttling back and forth from the hospital. We need protection and wisdom about how to juggle our crew.
~Favor for Matt at work. He needs heaps of understanding from his colleagues and bosses as once again, he is trying to be super-dad and responsible-employee (and amazing Dr!)
~Elizabeth's portal vein thrombosis (clot) to disappear!! THAT would eliminate ALL sorts of problems...
**minor review - (skip it if you feel like you totally understand what's going on with Elizabeth medically speaking)** Elizabeth had an umbilical catheter when she was 3 days old and waiting for heart surgery. That is a risk factor for developing a clot. We'll never know for sure, but in all likelihood, a clot broke off and lodged itself in her portal vein (the vein that supplies blood to half of her liver). Initially, this caused a major infection (bacterial peritonitis) in her abdominal cavity when she was 9 mos. old (that's how we originally discovered the clot) Since then, that clot has caused her blood pressure to rise (called "portal hypertension"), and all the veins in her body to be under greater stress. Her body has done what it should and created new blood vessels to handle the pressure (called "collaterals") but the pressure is still not great and she remains at risk for a "major bleed" especially in the varicose veins (called "varices") in her esophagus where acid and popcorn etc. give them more grief. THAT is why she has endoscopies every 6 weeks...to check and make sure none are about to rupture. If they see one that's looking "ripe" they cauterize it off to protect her. Lastly, and the reason we're where we are today, the portal hypertension wrecks havoc on her spleen which gets all backed up and can't do its job of filtering out blood-borne infections. So a "bug" that your spleen would catch, hers doesn't. So she develops bacterimia. To prevent future infections, she's on "penicillin prophylaxis", but apparently it's typical that in winter, kiddos which poorly functioning spleens have these frequent "bacterimic episodes", and the system can't keep up. (4 episodes in 4 weeks??) So after this tour is all wrapped up, from now on, each time she spikes, we're supposed to bring her in to the hospital, for 48 hours if she doesn't grow bacteria, and for 7-10 days if she does...sigh.
Unfortunately, she's not a great candidate for a PIC line, (a more stable IV which would allow us to take her home and administer IV antibiotics here) because she's got a major clot in her liver (the cause of ALL our troubles at this point) and she's clotted off lines before...AND, since strep pneumo lives on the skin, a hole in her skin for an IV is a perfect way for her to get another infection. So for now, unless there are any other bright ideas from the Team, we're staying put.
So would you pray for a few specific things as we head into this week?
~Elizabeth needs to SLEEP. She's exhausted and yet struggles with insomnia while she's in the hospital.
~Continued protection of our whole family's health...if anyone gets sick, especially the kids, that makes us a lot less flexible.
~A big storm is supposed to be heading our way, with Ice tomorrow and 6-12 inches of snow on Tuesday...not exactly weather for shuttling back and forth from the hospital. We need protection and wisdom about how to juggle our crew.
~Favor for Matt at work. He needs heaps of understanding from his colleagues and bosses as once again, he is trying to be super-dad and responsible-employee (and amazing Dr!)
~Elizabeth's portal vein thrombosis (clot) to disappear!! THAT would eliminate ALL sorts of problems...
No comments:
Post a Comment