Thursday, January 31, 2008
Tuesday, January 29, 2008
He shared our concern about the change in Ellie's ostomy/poop habits over the last week and believes that it is caused by her ostomy still being too loose to force food down her colon rather than the chimney being pinched off. This was great relief to us and even better was his description of the chimney connection as being 'wide open'. Wide open is good for now.
So we agreed that we need to make her ostomy opening even smaller and go back to plugging it with a g-tube. Conveniently we have a stockpile of old G-tubes that we got when Ellie's g-tube was bigger (16 French as they call it) that are no use to us. Call it karma but her current ostomy opening is exactly the size of her old g-tube. A perfect match.
So we will try plugging her for a while and see if we can convince the food to go down instead of out and hope for poop.
Let's hope the simple explanation is the best one.
Monday, January 28, 2008
Like my dress? My Grampa picked it out.
There are a bunch of things that could be going on and we want to get his take on where we stand.
The easiest explanation is that her gut is still adapting to the new configuration and the tiny little fingers that line the inside of her gut are still growing back: These can take many weeks to grow back and if this is a normal thing than we will go home and wait and change lots of cotton balls.
Another explanation is that the plumbing has rearranged itself and re kinked. That would be a real bummer and we really hope that this isn't the case.
Then there is a the mystery solution like gut bugs or yeast but we don't see any real signs of this like gas or smelly balls. we know that something is up when Abby can say, with a perfectly straight face, 'Gib this room smells like balls!'
This may be all for naught but it will be good to have someone other than each other tell us that things are okay since her numbers show that something has changed since the first few days that we were home and having such good results.
If we just stopped weighing everything we'd never know anything was wrong.
Damned green book of numbers....
By the way wanna know the exact weight of any diaper in the last four months? Yeah, we've got it along with computer archives of every day's totals since December 2006. It keeps us from guessing and the daily total is often among the last things Abby and I say to each other each night.
We sleep better knowing the statistics of Ellie's gut. Odd but true.
Wednesday, January 23, 2008
The biopsy says, using very technical and scary words that Google says are really bad, that the damage to her liver is the same as her first biopsy that happened just after her liver function tests started to really improve in the summer of 2006. She still has some significant fibrosis in her liver which is a bad thing but it hasn't progressed toward the really bad things that we should have seen many months ago. This good news is further supported by the interpretation of Dr. Puder who noted that this biopsy was missing some of the damage that was seen in the earlier biopsy.
This is a big step for Ellie but also for all of he kids who use Omegaven since this is the first long-term follow up biopsy that they have done on an omegaven kid. Even though all of her liver function tests were good we didn't know for sure what was going on in her liver until now.
Who knows, she may just have her own medical journal article someday to go along with this blog that has chronicled all of her adventures so far.
We sleep a lot better knowing that the damage has been stopped and maybe even reversed a bit.
Ellie is oblivious to all of this and is most interested in her metallic pink cowboy boots that arrived today from her Aunt.
Christmas came almost a month late this year.
Monday, January 21, 2008
We are back to 12 hours of PN 5 days a week with the other 2 nights of 12 hours of D10(hydration fluid that is 10% dextrose). Ellie is only getting 15 mls of Elecare an hour, which works out to 12 ounces a day. Our plan is to get her back up to the 24 or more ounces a day, but we have to increase her slowly so we don't over whelm her intestines that are still waking up after surgery. It weird to see her not be that excited about food, but we are hoping this will change and we will have our big eater back soon.
The biggest difference in Ellie post surgery is poop. Right now it seems the surgery worked, her ostomy output is much less and she is pooping in her diaper much more than she used to. We just have to hope that this trend continues after all the inflammation is gone. Also her new G-tube site is beautiful.
We have had g-tube envy any time we saw parents with kids that had little to no dressing on their kid's G-tubes. Ellie's old site required 4 different layers of dressing and a lot of tape and then even then we had to change the dressing 2-4 times a day. Her new site is doing great and the old one has healed up very well.
All the dressing are now off of her incision line, and it is impressive. I guess it was hard for us to comprehend how big it really was until we could actually see it. It is very long. It starts just below her old scar (about 1.5 inches above her belly button) to just above her pelvic bone. It runs right down the center and even does a little half moon cutout around her belly button. I don't know why but I am having a harder time being O.K. with this scar, it just seems so big. It is a hard thing to see on such a small body. But then I look at her old scar, and it has almost completely disappeared, so I know this one will to. I hope.
We are looking forward now to days filled with nothing big to do but play and be normal. Ellie has clinic next week so, until then we just hang out and watch our girl grow.
Friday, January 18, 2008
Gus and Karlene were waiting for us at home. Ellie got a nice bath and then has headed out on a walk with Gib. We are all glad to be home, and I think I will go take a nap. Thank you 10 East nurses and staff for another great stay.
Thursday, January 17, 2008
Ellie is doing well and has tolerated her elecare very well while getting better every day. We have transitioned quite rapidly from 24 hours of TPN to 12 which is her normal routine at home and we will give it a full 24 hours under the new regime and watch her very carefully to make sure that the limited TPN is okay with her.
If all goes well the gears are in motion today to get us out the door tomorrow and continue her recovery at home where she will sleep better, eat better and have more motivation to get up and move than she has in the scary hospital where she has recently developed a sizable fear of doctors.
We hope that we will be home by dinnertime tomorrow.
one week. Just like we guessed.
Wednesday, January 16, 2008
She Sits! Since her surgery she hasn't wanted to sit or stand and preferred to lie on her back or on her side even to read books or play with toys. Our guess is that since the new suture line is vertical (from hr rib cage to her belly button it goes across the muscle that helps her sit up. With this healing sitting must be hard. Doing this without pain meds (not even Tylenol since she never shows signs of pain) makes it even harder. Today she was healed enough to sit up and was giggling as she read book when I walked in. A good sign.
She Walks! This afternoon she surprised us all by wanting to stand up and walk as we made our way around the hospital. At first she walked like a drunken sailor but after a little bit she got the ahng of it and walked a good 50 feet alone after shaking off my hand. Another good sign.
She Eats! But the best news of the day is that we finally got the go ahead to try out her newly plumbed gut. This morning they tried pedialyte and Ellie refused (saltwater after five days would suck for me, too). After that she was offered 20 calorie/ounce Elecare and she sipped it. With so much TPN going into her we weren't surprised that she wasn't hungry and we ended up giving it to her through her G-tube as a 'bolus' pumped in by gravity all at once. She has handled these feeds very well and will go on the pump tonight for continuous feeds at a slow rate.
She is on Reduced TPN- We finally got the go ahead to start reducing her TPN time today and this evening's infusion was 20 hours with a four-hour break in the afternoon. This will likely be pared down fairly rapidly as the days go on and we hope that we can get her back to just overnight TPN fairly soon. This will definitely help her build an appetite for Elecare and other foods.
We don't have any firm plans for discharge right now but as we walked this afternoon we met Ellie's surgeon and he asked us what we were still doing there? Even though it was half kidding it was a good sign that he is happy with her progress and we hope to be going home sometime later this week. Abby is at Children's tonight (Ellie wouldn't have it any other way) and will start the ball rolling toward discharge with the morning meeting with the rounding doctors. All of the infrastructure is in place at home so bringing her home shouldn't be nearly as hard as it has been in the past.
Home sucks without my girls. Wait. No, in the big scheme of things it doesn't quite suck but having them home is much better.
Tuesday, January 15, 2008
She has pooped another four times today and even though we are leery of too much of a good thing, it is good to see things move through to tell us that there is likely not an obstruction or other clog in her plumbing.
With shared that good news with Dr. Jennings and disconnected Ellie's g-tube from its gravity bottle today to let her handle her own fluids. If she can do this without trouble, we will progress to clear fluids tomorrow and then start ramping up her Elecare feeds after that. Everyone involved is very happy with her progress and she is perking up even compared to yesterday.
Ellie all loaded up for a walk and showing us her Tiger impression.
We are still having trouble posting things to this blog from Children's so updates may befew and far between in the coming days but we will try and get good news up through a Starbuck's trip. Info to the world+ a double espresso is a good thing.
Steady as we go. We are still optimistic about coming home sometime this week.
Monday, January 14, 2008
With the loss of the epidural Ellie is now being hit with IV pain meds which might be a trick to get dialed in but overall her progress is good and her spirits are very high.
She is doing so well in fact that I am at home right now with Gus riding out a nor'easter that never happened (I swear the weather forecasters and the grocery stores are in cahoots) and will go in today around lunchtime to take over for Abby who spent the night last night.
She is still not eating or taking food through her g-tube which means a temporary round of 24-hour TPN but that is okay for now. Hopefully this round will let us move further away from TPN when we get home.
Judging by her progress so far, that is looking like it may happen sooner than we thought but I am keeping my finger crossed.
Sunday, January 13, 2008
Saturday night was very long for Ellie, Abby and I. Ellie had some minor issues popped up that we chased for the evening which made it an all-night affair for Abby and I and we are bleary eyed right now but doing well.
N-G Tube To start off the evening fun and games a bit early, Ellie decided to roll over and start crawling in her crib yesterday afternoon. This usually wouldn’t be a big deal but right now Ellie has 8 tubes and/or wires hanging off of every corner of her body including an epidural line which has stayed amazingly well in her spine since Friday morning. Rolling over and crawling tangled them all up and gave us a bit of a scare. One minute she was asleep and still and the next she was up and moving. To make things more interesting, as Abby and our nurse worked on untangling her tubes and wires, Ellie decided to use the opportunity to give her N-G (Naso-Gastric) tube a good yank. This tube goes up her nose and down her throat into her stomach to drain the fluid that is accumulating there after her surgery and keep her new shiny G-tube. The nurse slid it back in but along the way caused some irritation which led to some scary red blood in her output last night and a call to the surgical resident who looked into the problem. Since then her fluids have gotten clearer and finally today things are mostly clear and we have taken off the suction from her N-G tube.
Fever- Then to make things even more interesting Ellie spiked a moderate fever last night. Not fun and a bit scary since infections are a real issue with surgery and central lines. Fortunately her fever hit a plateau at 38.4 degrees and never hit the 38.5 level where the doctors would take some action to bring it down. The surgical fellow that we have known since Ellie first got to Children’s (and coincidentally assisted in the operation to repair her prolapsed ostomy last winter) told us this morning that a low grade fever is normal for post-op days and not to worry. A hot Ellie will always make me worry.
Startle awake- to complete the trifecta Ellie’s epidural has made her have another round of startle waking where she will wake from a sound sleep as if she is falling which makes her scream as she wakes. To make matters worse she only lasted 20-30 minutes between waking throughout the night and through today as well. We have a very tired girl and tried giving her valium last night to take cares of the waking. It worked but not completely so we hope she sleeps more soundly tonight.
But on the upside......
But on the upside......
Loss of the Peripheral IV- When Ellie came out of the OR she had an IV in the foot that was placed to help with surgery. We never used it after the OR so it was removed last night. A move in the right direction that brings us down to 8 tubes and wires. Hopefully it will be followed by paring down more tubes in the next day or so to get us back to our trusty two- a g-tube and a central line.New Digs- We had a very Cheers-like experience this afternoon when our transfer to 10East went through and Ellie was wheeled across the 10th floor to the area staffed by our good friends that used to be on 8 West. We really felt like Norm walking into a packed bar on a Friday night and felt instantly relaxed after Jody spent some great time with Ellie and the two of us getting us settled.
As I told the nurse on 10 South: these nurses are great (especially Brian who was infinitely patient with us last night) but 10 East is on our Christmas card list!
It's good to be around family that knows our girl. I will go home tonight to take care of Gus and leave Abby and Ellie.
Who knows, Abby might actually go home one of these nights.
Saturday, January 12, 2008
Ellie also now has a new scar to add to the mix. Dr. Jennings didn't feel that he could reach all of her bowels using the old incision line, so he had to create a new opening. Gib and I were getting nervous about the ability of the old one to handle be opened one more time(it had already been opened 5 times), so we were happy to see the new suture line. The new one is just to the left of her belly button and it is vertical this time.
Ellie is doing very well. She looks much better this morning and is much more aware of her surroundings. The epidural is working beautifully and she is very comfortable. This is aided by the Benadryl that she is on, due to the itching caused by the narcotics in her epidural. With the Benadryl on board she is a very sleepy girl which is fine with us. If all you can do is lay in bed, you might as well be sleeping.
It is weird being here but not knowing any of the nurses, NPs or support staff. Even more frustrating is being here and having the staff not know us. We are getting some looks of skepticism when we ask questions and make requests. Many times we find that we are getting an answer but not the answer to the question we asked. I guess we also just miss our friends. Luckily we still have our great relationship with the surgical staff to help keep us sane.
We were in our room for about 10 minutes before Dr. Jennings came to check on our girl and then an hour later Dr Puder stopped by for a visit. This morning Dr. Gura stopped by and when rounds came through they were all familiar faces. The rounding surgical staff could not believe how big she was and they were all very happy with her recovery.
We will keep the epidural for the next few days and then see how she is doing. All in all Ellie is doing great and we are happy. Ellie has been asking for “Ga-Ga” (Karlene) and for “Good Dog Gus”. Hopefully she will see them both soon.
Friday, January 11, 2008
Those are the words that Dr.
Obviously she is done. We got a call around 1:30 from Dr. Jennings and met him at Au Bon Pain while he got his lunch. He said that the intestines looked great, very little adhesions and that the connection between small and large bowel looked great. The reason food wasn’t going down the colon was that the connection had folded over on it’s self. He straightened everything out and said that is all that was needed.
He did make the ostomy smaller, but only under the skin, so what we see from the surface will look the same. He was going to make the skin opening smaller but said that would have caused a wrinkle in the skin, he was concerned that this would make it hard to keep ostomy bags on. We really appreciate the fore thought, we don’t need any more ostomy bag challenges.
G-tube. He looked at the old track and decided that here was not much he could do. So he installed a new hole. He cut a new hole in the skin but used the same hole in her stomach. It looks great and we are going to try everything we can to keep this one looking good.
Ellie moved to recovery in the PACU at 3:30 and we got to the floor around 5pm. But, we are not on 10 East (8west) there were no beds available. We begged and pleaded but they weren’t willing to kick some one out for us. Shame. So, now we are on 10 South. Same church different pew.
We now can not post on our blog using the hospital’s WIFI, we have to wander with a laptop and find a free signal. We will post more when we can.
We are thinking that around 3 PM (9AM plus 6 hours) she should be done with the OR and then it is usually an hour or two before she is cleaned up and ready to see us in the Post Anesthesia Care Unit (PACU). We are not on the list for a stay in the NICU so we hope to be up to our friends on 10 East a little after dinner time.
Abby is asleep on the couch in a quiet corner of the waiting room hopefully dreaming of yesterday's Ellie dress-up session:
we met with Dr. Jennings for a while before hand to go over the detials of what he is going to do and we are still looking at a 'revision' of her plumbing and some work on her g-tube to make it less leaky since, as he told us, we are in for the long haul with it.
He planned for 4-6 hours of surgery but told us that it could be a longer time in there depending on what he finds and whether it looks like it doesn on the x-rays.
She was offered pre-op sedation while we waited but giggled as the Dr. offered it so we passed and she danced her way into the OR with her mom.
We are at starbucks across the street having $4 lattes and will check in from time to time. The waiting room is a tough place to wait.
Thursday, January 10, 2008
I may have taken that approach a little bit too far when I agreed to make a two day work trip to Washington Wednesday and Thursday before Ellie's Friday AM surgery. I hope it doesn't come back to haunt me.
My miracle of modern transportation went something like this:
4 AM Wednesday- I wake up change Ellie's various middle of the night things, feed the dog and leave for the airport at 4:45 AM
6:30 AM I fly to Washington and arrive at the headquarters of my job
11 PM I finish a full day and evening of work.
9 AM today I start meetings.
5 PM I start my trip home.
10:42 PM I am in our driveway staring down another 4:30 wakeup call tomorrow to head to Children's for Ellie's surgery.
We need to be there by 6 for pre-op. I am glad that there are many Dunkin Donuts along the way for coffee and fully rationalized 'necessary' donuts....
But I shouldn't complain since it was Abby and Karlene who were here all day today doing pre-op 'bowel prep' with Gut Girl. I won't go into details but it involved huge volumes of laxative solution and numerous rounds of, shall we say, bottom-up cleansing? Ellie was good sport apparently which is amazing to me and we are all very glad that they could do the prep at home instead of checking in a night early.
Relative to that, though, a 42 hour round trip to Washington sounds easy to me.
We will try to post updates as the morning goes on but, knock on wood, everything should be pretty smooth.
Sunday, January 06, 2008
This length hasn't been a problem for us until recently when her lanky legs turned most of her pants into 'high waters' or winter capri pants. Bare leg above her shoes and below the suff of her pants is a cold situation.
Today we opened up the box of 3T clothes to see if they fit and would keep her ankles warm. Ellie got one look at these overalls that her aunt Beth made for Ellie cousin a few years ago and refused to move until she tried them on:
Abby is sad because she is a little girl and not a baby any more with these pants on. My mom is concerned that she needs a bow to make them more girly. I'm happy to see them on and even happier for the room around her middle to fit the ostomy bag.
Now if they would just make 3T overalls with snaps on the inseam but I think that the skills are on hand to fix this.
Thursday, January 03, 2008
(Okay, so I got a bit creative and did some drawings to help me explain Ellie's bowel layout. I never claimed to be an artist, I just knew that I wouldn't be able to describe it well enough.)
Before Ellie’s surgery in November of 2006 she had a small bowel that was grossly dilated at 4cm wide and a colon that was rarely used and much smaller than her small bowel. Her small bowel had no motility and very bad bacterial overgrowth. See picture below:
Dr. Jennings intalled a large ostomy at the end of her small bowel to relieve the back pressure that was causing the dilation. He also straightened out the bowels, fixed some adhesions and then right before the small bowel ostomy left her body he reattached her colon. This means that even though she has an ostomy she is still able to use her colon. This is huge because this is how the human body absorbs water. See picture below:
Our goals were to relieve the back pressure on the small bowel, which would allow it to un-dilate and return to a normal size, and increase the usage of the large bowel. It worked.
She did great. She is still in the 75% for weight and height and has gained 10 pounds in the past year and is eating up a storm. We have found that she loves chicken, eggs, and believe it or not beef stew.
But.. you can't expect that when you create something and then shrink it that it will look or function the same. Anyone who has accidentally put a favorite sweater in the dryer will understand. When Ellie's small bowel went from grossly dilated to normal, the connections shrunk also. The end result is what we are dealing with now, and that is that the connection between the small and large bowel is too small causing all most, if not all, food and fluid to go out the ostomy and none down the colon. This created some serious dehydration issues.
So, now we look at what is next. And that is surgery with Dr. Jennings next Friday. The plan for the surgery is...
- Enlarge the connection between the small and large bowel.
- Make the opening of her ostomy smaller to force more food down her colon.
- Clean up the track that Ellie’s G-tube goes through. She has a considerable amount of gastric mucosa (lining of her stomach) rolling out of the opening. This makes it so fluid will always leak around the tube causing skin break down. Ellie will have her g-tube for a very long time so need to make sure it is going to work as well as it can.
This is what we are hoping for at the end of Friday:
- A colon that gets to see more food/liquid. This will enable her body will be to retrieve more of it's own water and so the amount of IV fluids she gets every night will decrease.
- Less output out of her ostomy.
- A stronger small bowel that can handle being completely reconnected to her colon with no ostomy down the road.
We had been talking with Dr. Jennings about making her ostomy smaller this spring, so we are just doing it a bit early with some extra stuff thrown in. We are not getting rid of the ostomy by reconnecting her small and large bowel completely, because there is too high if a chance that she will re-dilate back to where we were a year ago.
We are excited about this surgery and are ready for more poopy diapers and a smaller ostomy. We are not looking forward to the week or so she will be in the big house after the surgery, but we will manage. We have never been inpatients on 10East, it will be nice to see how it stands up to good old 8West.
The good news is that we are going to be able to do the bowel prep at home the week before the surgery. Much nicer than spending the night before the surgery doing it at the hospital. We are hoping this leaves us with a happier more rested baby, and parents, for the big day.
After all that, here are some fun pictures of Ellie from our great weekend in Vermont with the Leichter family.
Also we got all the results back from the cultures and biopsies from Ellie's day in the hospital for day surgery and all the results were normal. No overgrowth, and no allergies. Very good news.