I spoke to our Gi doc, Dr.B the other night after a scare with a blocked J valve. I had his on call team page him at 9pm and God love him, he called me in about 5 minutes!
He walked me through it and we were able to relieve the blockage.. in his words.. "crisis averted".. whew!
He asked about the amount of bile that V's still putting out in the drain and when I told him he was very uncomfortable with my answer.
According to him the bilious drainage should have stopped by now and V should no longer be drain dependent.
We go in Monday for our discharge follow-up and he's going to schedule him for a contrast study.
Due to his congenital diaphragmatic hernia (a Morgagni diaphragmatic hernia to be specific), he also suffered a degree of intestinal malrotation and blockage. It was repaired with what's called a "ladd's procedure" during the hernia repair but Dr.B's worried that he may be suffering some sort of chronic malrotation again.
So... we scan. It will be scheduled during Mondays visit so I'll keep you all posted.
Saturday, July 11, 2009
Thursday, July 9, 2009
Finally Home
Yes folks, we have officially been discharged.. yeehaw!
Yup, I'm from the south.. can ya tell?
We got home late last night with a butload, um, can I blog that word??
Ahem.. alot of prescriptions. Seven new ones to be exact, in addition to our list of home meds already being given.
Most of them are to be given in small doses four times a day and not all of them can be given together. Needless to say, I picked up a day planner while I waited at the pharmacy. I haven't had to plan his meds around the clock like this since our pre heart surgery days.
As long as it works, after all this.. I'll do it. I'll do it and I'll like it.
Damn straight.
As for now, he's on 24hr J tube feeds and he seems to be tolerating them well. So far we can only get to 40ml an hour but it's working. He's getting nutrition and I'm happy, he's happy too.
Monday we go back for our follow up and Dr.B's planning on setting him for a contrast study. He's still having larger than normal bile and gastric outputs into the drain even though he's taking nothing by mouth yet and the Dr. feels that he's not moving things through properly. Maybe through the duodenum where he had a bypass surgery during his diaphragmatic hernia repair. We'll see. For now we're replacing the output overage with pedialyte so his electrolytes don't get funky.
That last night of IV meds seems to have kicked the mystery rash. To keep it away we have a few weeks of oral meds for that too.
For the moment I'm just going to try to enjoy our weekend and not stress too much.
Sounds good, huh?
Yup, I'm from the south.. can ya tell?
We got home late last night with a butload, um, can I blog that word??
Ahem.. alot of prescriptions. Seven new ones to be exact, in addition to our list of home meds already being given.
Most of them are to be given in small doses four times a day and not all of them can be given together. Needless to say, I picked up a day planner while I waited at the pharmacy. I haven't had to plan his meds around the clock like this since our pre heart surgery days.
As long as it works, after all this.. I'll do it. I'll do it and I'll like it.
Damn straight.
As for now, he's on 24hr J tube feeds and he seems to be tolerating them well. So far we can only get to 40ml an hour but it's working. He's getting nutrition and I'm happy, he's happy too.
Monday we go back for our follow up and Dr.B's planning on setting him for a contrast study. He's still having larger than normal bile and gastric outputs into the drain even though he's taking nothing by mouth yet and the Dr. feels that he's not moving things through properly. Maybe through the duodenum where he had a bypass surgery during his diaphragmatic hernia repair. We'll see. For now we're replacing the output overage with pedialyte so his electrolytes don't get funky.
That last night of IV meds seems to have kicked the mystery rash. To keep it away we have a few weeks of oral meds for that too.
For the moment I'm just going to try to enjoy our weekend and not stress too much.
Sounds good, huh?
Sunday, July 5, 2009
Still here
Well we're still inpatient at APH. This morning GI came to check him out and thought we may be able to go home. The nurse and I were both worried as to how I would continue to drain his G port at home and he just said we could go home with the same type of drain he's wearing now, but he wanted us to begin periodic clamping and draining to see if he could tolerate it without all the bile spilling out around the GJ tube. Our nurse felt uncomfortable dicharging him if we were still experimenting with what he's able to tolerate.
I agreed.
He agreed also and said to update him toward the end of the day as to how he handled the clamping and draining.
It didn't go well so he decided not to push it and it turned out to be a very good decision.
Later in the afternoon, during a dressing change I noticed a strange rash across his stomach and back that wasn't connected to the GJ tube breakdown. The nurse looked at it and immediately paged the doc who ran up to see it. He's now on a new IV antibiotic. They aren't totally sure where it's coming from but we'll try this IV med overnight and see how he looks in the morning.
They've also started to supplement his regular IV fluids with a bolus every hour to match what he's losing in bile drainage.
Ugh.
On a positive note, he was able to get up and walk a little today. He's very wobbly and off balance but he seemed to think it was funny. Every time he'd stagger and tip over, he would grab my hand and let out the sweetest giggle. He's really an incredible kid.
Daddy came last night and brought the other kids to visit, then they walked down to see the fireworks. I'm glad they didn't miss it. Not exactly the 4th of July I was hoping for (lil man loves fireworks), but I'm glad we got to spend some time together.
As for now he's resting. The last dressing change hurt him pretty badly so he got an extra dose of pain medicine and he finally seems comfortable.
Good night all...
I agreed.
He agreed also and said to update him toward the end of the day as to how he handled the clamping and draining.
It didn't go well so he decided not to push it and it turned out to be a very good decision.
Later in the afternoon, during a dressing change I noticed a strange rash across his stomach and back that wasn't connected to the GJ tube breakdown. The nurse looked at it and immediately paged the doc who ran up to see it. He's now on a new IV antibiotic. They aren't totally sure where it's coming from but we'll try this IV med overnight and see how he looks in the morning.
They've also started to supplement his regular IV fluids with a bolus every hour to match what he's losing in bile drainage.
Ugh.
On a positive note, he was able to get up and walk a little today. He's very wobbly and off balance but he seemed to think it was funny. Every time he'd stagger and tip over, he would grab my hand and let out the sweetest giggle. He's really an incredible kid.
Daddy came last night and brought the other kids to visit, then they walked down to see the fireworks. I'm glad they didn't miss it. Not exactly the 4th of July I was hoping for (lil man loves fireworks), but I'm glad we got to spend some time together.
As for now he's resting. The last dressing change hurt him pretty badly so he got an extra dose of pain medicine and he finally seems comfortable.
Good night all...
Saturday, July 4, 2009
Moving in the right direction
The doc came in a few minutes ago and reviewed his status, they seemed pleased that he is now retaining the formula in his intestine. Since they lowered the rate and added the Eryped we haven't seen any more leaking from his stoma. One battle won.
Now the conscern is the bile and stomach acid that continues to leak.
Apparently with the J tube in the small intestine it stimulates the bile production and that's what is causing the drastic increase. They desparately want his skin to heal so the objective now is to get this drainage lessened as much as possible. Right now the G port is still attached to a drain and we're having to empty it often in addition to what's leaking out around the button.
That means another med. Reglan will be added today to the Eryped to help with the gastric emptying so that the bile doesn't just sit there in his stomach and leak.
They are also switching his Zantac to Prevacid which is a stronger antacid, so when there is leakage it's less damaging.
The issue with the GJ button being too long is something we're going to have to deal with, apparently they don't make a shorter one. Doesn't make a whole lot of sense to me but that's the deal. Nothing we can do about that one.
Guess we're just going to continue to have to be creative with the gauze. As long as we can get this drainage under control and continue to keep him nourished, I can handle everything else.
Down the road the hope is to heal his skin and possibly save this site and put the regular Gtube back in or maybe resite it if neccessary.
For now he's on 24hr Jtube feeds. He's perking up finally and getting closer to being his old self again. We're handling the pain of dressing changes with premeds to keep him comfortable and so far it seems to be helping.
That's another huge load off my mind, I hate to see him in pain.
He'll get his Eryped and Reglan 4 times a day, and once daily Prevacid added to his regular meds and we'll pray for good results. We may even get to talk about going home in a couple of days.. woohoo.
Happy 4th everyone and keep watching.. cute lil man pics coming later today!!
Now the conscern is the bile and stomach acid that continues to leak.
Apparently with the J tube in the small intestine it stimulates the bile production and that's what is causing the drastic increase. They desparately want his skin to heal so the objective now is to get this drainage lessened as much as possible. Right now the G port is still attached to a drain and we're having to empty it often in addition to what's leaking out around the button.
That means another med. Reglan will be added today to the Eryped to help with the gastric emptying so that the bile doesn't just sit there in his stomach and leak.
They are also switching his Zantac to Prevacid which is a stronger antacid, so when there is leakage it's less damaging.
The issue with the GJ button being too long is something we're going to have to deal with, apparently they don't make a shorter one. Doesn't make a whole lot of sense to me but that's the deal. Nothing we can do about that one.
Guess we're just going to continue to have to be creative with the gauze. As long as we can get this drainage under control and continue to keep him nourished, I can handle everything else.
Down the road the hope is to heal his skin and possibly save this site and put the regular Gtube back in or maybe resite it if neccessary.
For now he's on 24hr Jtube feeds. He's perking up finally and getting closer to being his old self again. We're handling the pain of dressing changes with premeds to keep him comfortable and so far it seems to be helping.
That's another huge load off my mind, I hate to see him in pain.
He'll get his Eryped and Reglan 4 times a day, and once daily Prevacid added to his regular meds and we'll pray for good results. We may even get to talk about going home in a couple of days.. woohoo.
Happy 4th everyone and keep watching.. cute lil man pics coming later today!!
Friday, July 3, 2009
It's gonna be a night...
Daddy just left to go sleep at home for the first time tonight and the lil man has decided that he wants nothing to do with any of this anymore.
Go figure...
In the last 15 minutes he's emptied his G drain all over himself, diconnected his IV (don't ask me how), and pulled off his ID band.
Ughh.
We took off the gauze around the GJ tube to apply his cream earlier and green bile and acid literally shot out of his stomach. I ran and got his nurse Jamie (God bless that girl) to let her see. I need a witness to show these docs that I'm not exaggerating, this is profuse. The pain this poor kid suffers every time I touch his site is immense and unbearable.
Say a prayer please...
Go figure...
In the last 15 minutes he's emptied his G drain all over himself, diconnected his IV (don't ask me how), and pulled off his ID band.
Ughh.
We took off the gauze around the GJ tube to apply his cream earlier and green bile and acid literally shot out of his stomach. I ran and got his nurse Jamie (God bless that girl) to let her see. I need a witness to show these docs that I'm not exaggerating, this is profuse. The pain this poor kid suffers every time I touch his site is immense and unbearable.
Say a prayer please...
Absolute Craziness...
Sorry about the lack of updates, it's been crazy. We went in Wednesday morning for surgery and I knew that Dr.P wasn't going to like the look of him. After two days the stoma still wasn't closed and it was very raw. Sure enough he cancelled the surgery. He can't place a new gtube site towards his midline because of a previous surgery scar so the only place he could have gone is to the left around the area of the current site. It is so raw and broken down in that entire area that there's no viable tissue there to put it.
Plus to top it off it's infected now too.
*sigh*
His solution at the time was to replace the tube with a different kind and prescribe some topical cream to try to heal the acid burn and infection causing the breakdown.
My question was what do we do if this one leaks like the button did??
He said to bring him back and they would admit him because we've exhausted our outpatient options.
So we were home by 10am.. and by 8pm we were back being admitted because he was leaking like crazy and was so dehydrated that he couldn't stand anymore.
They tossed around several scenarios from an NJ tube to a GJ tube to even considering ditching it all and going to TPN for a while.
Ultimately they started IV fluids and the following morning he went to surgery for a GJ placement. When he came out they had drains hooked to both the G and the J ports to drain any stomach contents and they are draining like mad. Last night they started J tube feeds very slowly and left the G port to drain, upping the amount by 5cc every two hours. Every 5cc they up the feed, they reduce the IV by 5cc. By this morning he was at 50cc per hour on the J feeds and at 6am he started pouring out a mix of bile and formula. They reduced the feeds to 40cc and started a new med called Eryped. Apparently this med is used for kids with short gut syndrome and it's supposed to improve motility, it's actually a low dose of the antibiotic erythromycin but if it works I'm all for it.
So far he's holding at 40cc per hour on the J feeds although they did have to increase the IV fluids a bit to compensate but that's ok with me, he needs it.
They placed an IV in his hand during surgery (a feat in itself) and another in his ankle for backup so we're covered for access.
As of this evening we're doing the "wait and see" dance..
If he continues to tolerate the J feeds..
If he stops leaking bile and acid around the tube site..
If these meds can get rid of the horrendous infection around the site and help his digestion improve..
If we can find a wound care treatment to finally give him some relief..
Right now he's very thin (down to 21lbs from 251/2) and very weak, but he's beginning to have some smiley moments here and there. This hospital has a great child life team, they're doing a great job trying to keep him entertained in between the procedure induced crankiness.
I'll try to remember to have Daddy bring the camera tomorrow so I can get some pics of the lil man.. he's still cute as ever, even when he's miserable.
Thank goodness for pain meds, they are my new best friend.
Plus to top it off it's infected now too.
*sigh*
His solution at the time was to replace the tube with a different kind and prescribe some topical cream to try to heal the acid burn and infection causing the breakdown.
My question was what do we do if this one leaks like the button did??
He said to bring him back and they would admit him because we've exhausted our outpatient options.
So we were home by 10am.. and by 8pm we were back being admitted because he was leaking like crazy and was so dehydrated that he couldn't stand anymore.
They tossed around several scenarios from an NJ tube to a GJ tube to even considering ditching it all and going to TPN for a while.
Ultimately they started IV fluids and the following morning he went to surgery for a GJ placement. When he came out they had drains hooked to both the G and the J ports to drain any stomach contents and they are draining like mad. Last night they started J tube feeds very slowly and left the G port to drain, upping the amount by 5cc every two hours. Every 5cc they up the feed, they reduce the IV by 5cc. By this morning he was at 50cc per hour on the J feeds and at 6am he started pouring out a mix of bile and formula. They reduced the feeds to 40cc and started a new med called Eryped. Apparently this med is used for kids with short gut syndrome and it's supposed to improve motility, it's actually a low dose of the antibiotic erythromycin but if it works I'm all for it.
So far he's holding at 40cc per hour on the J feeds although they did have to increase the IV fluids a bit to compensate but that's ok with me, he needs it.
They placed an IV in his hand during surgery (a feat in itself) and another in his ankle for backup so we're covered for access.
As of this evening we're doing the "wait and see" dance..
If he continues to tolerate the J feeds..
If he stops leaking bile and acid around the tube site..
If these meds can get rid of the horrendous infection around the site and help his digestion improve..
If we can find a wound care treatment to finally give him some relief..
Right now he's very thin (down to 21lbs from 251/2) and very weak, but he's beginning to have some smiley moments here and there. This hospital has a great child life team, they're doing a great job trying to keep him entertained in between the procedure induced crankiness.
I'll try to remember to have Daddy bring the camera tomorrow so I can get some pics of the lil man.. he's still cute as ever, even when he's miserable.
Thank goodness for pain meds, they are my new best friend.
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