Friday, February 29, 2008
We don't know why this is happening but so far things look good and we are crossing our fingers for continued, er, movement in the future.
And all of this without reglan which the compounding pharmacy is still filling for us. But don't get me started on compounding pharmacies.
Wednesday, February 27, 2008
In the afternoon (any two part trip that begins in the afternoon is bound to be red eyed) we took Ellie in for her scheduled upper GI contrast study to look at why food isn’t finding its way from her small bowel to her colon even with a wide open opening between the two and a very tightly plugged ostomy. Once again they injected some chalky barium into Ellie’s g-tube and we all watched it on x-ray. Into her stomach. Into her upper small bowel (well, okay the first part of the small section that she has) and then into the lower part of her small bowel. And there it stopped and pooled on the upstream side of her ostomy and the connection to her colon:
Dam. And Damn.
Not only was it not passing but like the water upstream of a dam, her small bowel dilated while we watched into the mess that we had seen in the past.
We all are puzzled by this but encouraged by the fact that her bowel returned to a normal size after we popped the plug in her ostomy and allowed the barium to drain. This is a good sign that her bowel has regained strength and is not permanently dilated and that the progress of the last 15 months hasn’t been reversed.
We are still unsure of what to do and are thinking of ways to solve the puzzle of Ellie's gut. We didn’t expect to find any clear answers yesterday but this gave us some insight into what is going on in Ellie’s post-op bowel.
A next step is to schedule an endoscopy to look around and we will also restart Ellie on Reglan, a drug that once helped her stomach to empty but also works on the colon to kick it into gear.
Round one of our adventure ended at home around 6:15 PM. Karlene was here to help us corral Ellie and get the evening under way. Making dinner, setting up TPN, getting Ellie fed and hooked up are all a nightmare when we are late coming from Children’s and having Karlene there was a big help for us.
Little did we know how helpful she would be in round II.
I knew something was wrong, very wrong and used the serious voice that I learned when I was working as a lifeguard:
‘Abby! I need you’
We used to call the response of the nurses at Children’s the thundering herd. Well we had our own herd last night as the cavalry came. I won't use the word thundering for political reasons and my dislike of sleeping on the couch.
It turns out that there was kink in Ellie’s line where I couldn’t see it and when I applied the normal force of the wide syringe to the skinny little line, the line swelled and burst like a garden hose or a bicycle tire.
Ah crap. I busted her line. Yup, no two ways around this one. I did it. I didn't do anything wrong, but I popped her line.
We quickly clamped her line and grabbed some stuff for a return trip to Children’s. Three Ellie blankets, the portable DVD player and the diaper bag.
With Karlene handing Ellie to me in her bare feet in the snow we got to the ER in record time where fortunately someone at the front desk overhead Abby say the words ‘central line’ and escorted Ellie and Abby in an exam room before I got in from the parking garage.
Apparently last night was very busy one for the surgeons at Children’s and very few people know how to do the central line repair.
Around 9:30 we boldly told a surgical resident that yes, we wanted it repaired but no, he wasn’t allowed to do it because he had no idea what he was doing.
Sorry to dismiss you but go get the boss.....
A little after that up we went for a ride to the 10th floor. Our short repair trip that could have taken 20 minutes at home if we had the repair kit was now an overnighter.
Double ‘Ah crap’.
Around 2 this morning the surgeon arrived in Ellie’s room to fix her line. In the room were Ellie, Abby, the surgeon and some surgical residents including the one that we had dismissed earlier in the evening (I went home to deal with our four legged first born who was about to pee on the couch when I got home around 1 AM).
And who, do you ask, was the one to do the repair?
Yup, Abby Brogan, Super Mom who, as she told me proudly at 3 AM when she called to tell me that things were a success, not only did the work but essentially called Dismissed Resident a dumb-ass in the process and was backed up by the surgeon on call.
Abby: ‘Um, why are you touching that? You’re not sterile.’
Surgeon on call: ‘ Yeah, why don’t you just take what you just touched, throw it away and back away….’
Someone’s manly parts are shriveled looking like he spent too much time in the pool right now.
So much for your super-fancy-med school, my wife just learned you a lesson!
Ellie now has a very long central line with two splices in it, but it is still functional and she is hooked up right now making up for lost sleep from last night.
As a bonus Abby has the distinct pleasure of doing the most unholy thing that a parent of a kid with a central line can do: she took a pair of scissors to Ellie’s line. Short bowel parents look away now, the picture below may give you nightmares….
It took until 11 this morning to get rehydrated at Children’s but we made it home just ahead of noon.
Tonight is an early night for all of us…
Wednesday, February 20, 2008
Unfortunately the last week or so has been a backward slide for Ellie and the great progress that she had made since her surgery in January.
Despite our work to plug her ostomy and force more food down her colon, it isn't having the same effect as it did immediately after her surgery. Her ostomy output is back up to the point that we are giving her supplemental IV fluids again to keep her in balance and she rarely poops for us without help from a glycerin suppository.
This is discouraging for us but at the same time it makes us glad that we weren't overly aggressive with her last surgery which easily could have reconnected her. If we had done that we might have gone backward into the days of a grossly dilated bowel. Nobody likes dilated bowels.
Instead, we pull the plug and let the pressure escape sometimes with explosive results like ~500 ml (12 ounces) of fluid gushing out at a time.
So the ongoing game of intestinal plumbing continues. Ellie is booked for a contrast study next week to see how things move through her gut and will likely be booked for a colonoscopy in the weeks after that to see if the problem lies in her colon.
Miraculously Ellie is in great spirits and continues to smile and giggle at all day and ask for 'noooodles'. And on the upside, her new g-tube is in great condition.
Things could be a lot worse than Abby and I worrying about her gut.
We do that no matter what.
Thursday, February 14, 2008
Ellie is doing great. Gib has been out of town all week, Karlene has only been here half of the week and I have my first cold of the winter. But other than that, things are good. Ellie has started talking more and trying new words. She has also taken to jumping on the couch and then launching her self off on to pillows on the floor. She does this with the backpack on and just gets up and goes for another round. I think my heart stopped the first time she did it, but now I am getting used to it.
We went in for an unplanned clinic visit on Tuesday to have Dr. Jennings look at few things. We will now use a longer G-tube button to plug her ostomy, will be more aggressive with the treatment of granulation that has started around her new G-tube site and we have a upper GI contrast study scheduled for two weeks from now to see how her bowels are handling being plugged.
I just have to say that I love Dr. Jennings. I went in to his clinic very nervous and with a ton of concerns. He squeezed me in between appointments and still managed to spend enough time with us that I walked out of the appointment feeling 100% better. I really like to have a plan, and a course of action planned out with Ellie. I really hate the "wait and see" approach. It just leaves me to stress out about what is happening and what could happen. I wish I could just shut my brain off sometimes.
Gib comes home tonight and hopefully we are going out for dinner! Karlene bless her heart has offered to work tonight. Now all I have to do is not fall asleep before dinner.
Happy Valentine's day to all our friends and family.
I was also interviewed for another short gut blog for Valentine's day. click here to see the interview. Sebastien's blog
Friday, February 08, 2008
Ellie continues to grow very well even though she isn't eating or drinking nearly as much as she did before her surgery. Officially she weighed in at her pre-surgery weight yesterday, 12.0 kg (26.4 pounds for you, Gramma). She is 34 1/2 inches long which puts her in the 50th percentile for weight and 80th percentile for height. We have seen a hiccup in her growth after prior surgeries so seeing this fast recovery is a good thing.
Ellie is pooping into her diaper 3-5 times a day now and her ostomy output has slowed significantly since we got aggressive in plugging her ostomy early this week. Even though the CAIR doctors didn't do the surgery and were strongly against it when we opted to change to Dr. Jennings, they are all very happy with the results of her ostomy overall and also the results of her recent revision to her ostomy.
We are going to keep increasing her pump feeding as long as she can tolerate them (no dumping or diarrhea) and see where we can from here. Ultimately we would like to have her colon working and use the ostomy just as a pressure relief valve. That will let us peel away TPN and let her colon do the job of rehydrating her.
The CAIR doctors had a decidedly pessimistic view of Ellie's biopsy results and chose to highlight the presence of old scarring of her liver rather than the miraculous halting of the progression of liver damage that has happened since she went on omegaven. This is in sharp contrast to the opinion of Dr. Puder who tells us that Ellie's biopsy may be the subject of a medical journal article...
The CAIR team continues to stress that we need to get her off of TPN to reduce the risks that come with TPN and the ticking time bomb that is a central line. We agree wholeheartedly that we want Ellie off of TPN but are not going to rush anything.
Ellie put on quite a show for the clinic and we wish that we had brought a camera to record her performance. For a while yesterday she was parading through the clinic in a onesie, a t-shirt and her metallic pink cowboy boots. She loves them and chooses them over all of her other shoes.
A rock star.