Strep, potty, eyes, and independence

So much time has gone by since the last post.... again. 

Peter had strep throat right before Christmas.  Aside from the common cold, this was Peter's first "normal childhood illness" that I can recall.  It turned out that 5 out of the 7 of us had it, but no one knew until I ended up making the hour and 20 minute drive to the ER at CHOP just before dawn with an axillary temperature of 102.6 degrees.  That isn't too terrible of a temp for most people, but if you have a central line (which is a PICC line in Peter's case) it is a big concern for infection of the line and possibly ensuing sepsis.  The "good" news about it all though, was that Dr. Kamin started Peter on antibiotics at home earlier that day when his temp was lower, after the home nurse had drawn labs and cultures.  That one dose of antibiotic was enough to get Peter back on track within a few hours of the fever spiking higher.  The positive rapid strep test performed at the ER and negative cultures at the 15 hour mark, gave us the OK to go home from the ER after 7 hours, instead of going inpatient.  What a relief that was!  After Peter was diagnosed, a quick trip to the pediatrician confirmed strep for two of his siblings as well.  At that point, Chris and I knew we had it even with no diagnosis. The frustrating part of the whole scenario though, was that NO ONE locally would see him.  His local pediatrician could have diagnosed strep in the office earlier that day, but their rule is "temp and central line = ER."  The local ER will not draw labs off a PICC line though, nor do they really handle pediatric patients like Peter, as I found out via phone call that day.  Had Dr. Kamin not been willing to help us manage things at home with Peter, the event would have been an inpatient stay, with the "big guns" antibiotics that are used for line infections, quite costly for the insurance company, and frustrating for all of us, most of all Peter who just wanted to be home again.  I will never be able to thank him enough for all the dedicated care he has given Peter over the years.

Potty training has gotten much better since the last post.  I owe the improvement to Peter's oldest brother who allowed Peter to borrow the used ipod he bought if he would go potty quietly and successfully.  It worked like a charm that first time and has worked every time since.  Peter still can't figure out how to go successfully without it, but at this point I am fine with his dependence on it.  If we can keep him stooling rectally, especially without straining, then his next surgery to close the stoma should go well.  The bottle nipple in the stoma still leaks a lot, but enough goes down rectally to give him and his bowel proper practice. 

Peter went to a Wills Eye opthalmologist last week to re-evaulate his lazy eyes on the recommendation of the local opthalmologist.  We were trying to determine if patching would help.  To our surprise and relief, the Wills Eye doctor feels that Peter does not have lazy eyes, and gets his vision at 20/30 with glasses on.  We will return in 4 months to re-evaluate and make sure he is continuing on this good path.

Independence is finally beginning to kick in, at least a little bit.  We went bowling two weeks ago, and as he is getting ready to bowl his turn, Peter told me, "I've got it, Mom.  I can do it myself."  This was huge, especially on the heels of a week's worth of insistence that he was unable to put his own shirt on when getting dressed in the morning.  Aside from one shotput launch of the ball down the alley, he did quite well bowling on his own.  This week, he is coming over to show me that he has put his own shirt on, his own shoes on, even volunteering to brush his teeth.... big steps for this seven year old!

Potty training is not fun

About three weeks ago, after some emails back and forth with Peter's surgeon and the wound care nurse, we started using a baby bottle nipple in the stoma of the ileostomy to help divert poop back down the colon instead of out the stoma.  The stoma still allows a good deal of stool to exit into the ostomy bag, but about 200 ml of stool does get diverted down through the colon with the bottle nipple in place.  The bottle nipple is place in by inserting the tip into the stoma, with the part that would touch the bottle sticking out.  This is placed inside the ostomy bag, and then an abdominal binder is placed over that to keep the nipple from popping back out of the stoma.  It has worked fairly well in that he can still use the stoma as an emergency exit for stool, but it does have its limitations.  For one, the stool from the bag smells horrible, like the plastic material that the nipple is reacting some to the stool.  I can't see any visible problem, and I do put in a new nipple often.  If I leave the nipple out, the smell goes away, so I don't think it is an issue with the stool itself.  The other issue is that the binder then limits how much stool and gas can be contained in the ostomy bag.  The binder basically compresses the entire bag so there is room for only about 1/3 of the bag's usual capacity.  This means there are more trips to empty the bag of gas/stool, as well as more leaks of the bag if I don't get it emptied soon enough.  We tried a leg bag attached to the ostomy bag to give some more room, but the stool is also very thick and doesn't go down freely, so it didn't help.

Aside from those complaints, what we have determined is that the colon works very well at concentrating stool and making formed poop.  This is great news, and what we expected, but had not been able to actually determine up until now.

Peter is having a terrible time learning to use the potty for stool.  He has been potty trained with urine for a couple of years now, but he does not like using the potty for stool.  In fact, he does not like making stool rectally at all, and we are battling that now.  After the surgeries last month, he would yell and carry on, jumping up and down trying to not go to the bathroom and just having little bits come out in his diaper.  I thought that would clear up once we got home, but it basically has not.  We have major bribes going on to get him to go on the potty, but he gets on there and gets frustrated.  He says he doesn't like the feeling of going poop rectally, but that it doesn't hurt.  He is getting a tiny bit better at going in his diaper without quite as much carrying on, but that is only sometimes.  Chris is going to give potty training a shot this weekend to see if he can get Peter to go on the potty.   I think the more he holds in rectally, the more backs out the ileostomy, so it would help so much if he would just let it out.. potty or diaper.

Peter has always been very dramatic with learning things that have been physically challenging or scary to him.  When he learned to sit up sometime around 17 months old, he screamed as we would sit him up or prop him up.  Once he mastered sitting, no more yelling about it.  Then he did the same screaming learning how to stand.  Once he could stand well, no more yelling about that either.  This went on with walking, crawling (which he learned after walking), playing at the playground, riding a bike, swinging, etc.  I often wondered what the neighbors thought about his screaming, wondering if they thought we were hurting him, as what child is that afraid of learning so many new things?!  Anyway, I do believe he is screaming more out of fear of this unknown/foreign feeling than out of pain, as he doesn't act like he is in pain and doesn't complain of pain.  I so much look forward to his mastery of going potty and more peace in the house!  This yelling goes on one to several times a day and can get quite time consuming and frustrating for all of us.

On to some more pleasant news, Peter is getting a night off TPN tonight.  He has been on TPN 7 nights a week since his surgeries, to help with wound healing and to give him a little extra beefing up for the next surgery.  I sure do miss the freedom we had of being on TPN only 4 nights a week before the surgery.  Getting the TPN set up takes about 20 minutes, which isn't so bad, although it it so nice NOT having to set it up when there have been nights off.  The biggest problem of it is getting up twice during the night to change over the Omegaven bottle.  Last night I was up 5 times between the Omegaven pump, Peter having to go pee-pee, his little brother having to go pee-pee, and the feeding pump going off because the enteral feeding tube had kinked.  Chris has offered to get up to change over the Omegaven, but he does not fall back asleep easily whereas I do, so I don't think that is a good option.  Getting Peter off TPN is the better option.  To do that, he needs to get the ostomy closed so he can use the rest of his bowel for food absorption.  To get the ostomy closed, he needs to make poop rectally and keep that colon in use so it gets bigger in diameter and we no longer need the emergency exit through the ostomy. 

I never counted on Peter refusing to poop when we talked about getting the colon reconnected.  It is funny in a way, but I am sure we will find more humor in it at some point later in life once he is past this point. 

At home again!

Though I meant to post more during Peter's stay at Children's, things got so busy there really was not time to post.  Between rectal stool, ostomy issues, seeing doctors and nurses, and being a six-year-old who wanted to be kept busy, each day was quite packed with activity. 

Peter came home this past Friday, the 26th.  He is on two IV antibiotics three times a day through Wednesday, and then is fortunately done with them.  He is currently back on TPN 7 nights a week instead of 4, but this should be temporary.  His diuretic was increased to help remove some of the fluid weight he put on at the end of our stay. 

Currently, Peter's stoma looks like it is going to be putting out much more than it initially was, and we are looking into ways to plug it up so that more stool goes downstream to the colon again.  He has demonstrated that his colon does work and ideally we'd like to get as much stool to go there as possible, so that the colon is stretched enough to tolerate all stool when the stoma gets fully closed again.  That should hopefully be in a few months. 

Unfortunately, the decrease in ostomy stool seems like it will be a challenge to his already tenuous fluid balance, something I hadn't really considered amidst the excitement of getting the colon working again, hence the need to increase his diuretic now.  We have removed all unnecessary sodium from his IV fluids, so his IV antibiotics are only mixed in water, and there is truly minimal sodium in his TPN (only 4 mEq in his 400 ml TPN bags). 

Overall, he continues to be doing well and is his usual cheerful self.  He is so excited that he is going to be home for Halloween and for his seventh birthday, which is November 1st.  Hopefully Hurricane Sandy won't squash too many of his plans!

The new stoma

Peter ended up having surgery again yesterday.  The incision from the surgery on the 5th was infected and there was very little transit through the bowel to the colon even after a week.  Peter was having large amounts of green bile come out the G-tube even a week post-op, and had developed a low-grade fever.  

The surgery was another four hour surgery, but seems to have been successful in cleaning out the incision and in increasing the flow of gastic contents through the bowel.  The down side to the surgery, besides the setback to going home, was that Peter ended up getting part of his ostomy back.  This is supposed to be a temporary ostomy, and it is only 7mm big, so nothing, or very little, should come out of it.  The idea is that it will be a "pop-off valve" for gas and stool to pass out if Peter's bowel is having difficulty sending things all the way through and out the rectum.  This will keep the bowel from distending or having bowel contents back up into the stomach.  Peter's bowel prior to this second surgery was distended inside, and that was causing problems with things passing through.  In yesterday's surgery, Dr. Jennings additionally shaved off some of the granulation tissue from the old stoma which may have been causing some partial obstruction, but also adding the pop-off valve should hopefully allow Peter to hurry up home.  The concept seems simple enough, I just hope that it all works this way and we are not having lots out this new stoma.  It is too soon to tell how this is going to go.

Peter is on three IV antibiotics to fight the infection and they seem to be doing the trick.  Peter was up and about today, only 16 hours after surgery, and only needed one dose of Tylenol for pain the entire day.  He has a great spring to his step today, and seems to feel good, not "terrible" as he had been stating to people the last few days.  He even made several rectal stools today.  Perhaps tomorrow he can begin a "clears" diet, and we'll see how the bowel handles that.  Today he was not allowed anything by mouth, other than some meds.  More to follow as time allows.

Bye bye ostomy!

Drum roll.... Peter's ileostomy is gone!  

Peter had surgery on Friday to resolve the issue of why no more stool  was coming out of his rectum.  After the last surgery two months ago, he had great success with stooling for about a week, and then it all just stopped.  Dr. Jennings agreed to do another surgery, but it was unclear why  the stool was not coming all the way through any more.  One of the possibilities was that the colon had  folded over again and that the fold would surgically need to be removed (big surgery), or the other issue was that the stoma itself was the issue and needed another revision (minor surgery).  

As the bowel fluoroscopy via enema was mentally horrendous for Peter when he had it done two months ago, Dr. Jennings and Dr. Kamin agreed to look at things when Peter was already asleep in surgery, and then come out and tell us which surgery Peter would need.  To our great elation, the fold was not the issue, but the stoma was, and Dr. Jennings felt that the problem with it was that it prolapses.  To resolve that, he decided to go ahead and close it off completely (a little more than minor surgery, but not the bigger one like a fold would have required).  Peter went into surgery at 8 am, the doctors came out about 9 am to discuss the surgical plan to close the ostomy completely, and he was in recovery at noon.  He went straight to the regular floor, no ICU.  Amazing!  

What a great joy to see no ostomy bag there, but a simple 2X2 gauze dressing and some tegaderm plastic covering instead!  He still has a drain in the wound, but it puts out very little.  Peter was given the OK to try clear fluids today.  Unfortunately, he ended up needing to vent his G-tube by the end of the day and there was 300+ dark green bile in his stomach.  However, his demeanor suggests that this is not a big deal, just a minor issue.  Hopefully that is so.  He is back to being off all fluids by mouth overnight, and we'll try again tomorrow.  Peter walked over a mile yesterday, and over three miles today.  The only pain med he has needed was one dose of Tylenol on Friday evening, and two doses on Saturday.  We should all feel this good after bowel surgery!  

To say we are thankful to God that Peter's bowel is in full continuity again is an understatement.  This child had three emergency surgeries in 2006 that left him with FOUR ostomies, and he now has none.  There have been thousands of prayers said for Peter over the years, and to see him with no appliances on his belly other than a tiny G-tube now is a beautiful sight, scars and all.  We continue to pray that Peter's bowel recovers well from the surgery and that he is able to finally get off and stay off TPN.  

Hopefully this computer will let me update more as he recovers.  It is an old computer and very temperamental... completely non-functional last night, but worked immediately tonight.