Sunday Update

The view from our room 

Ellie continues to improve in her post op recovery.  She is more awake and alert today than yesterday which is good.  She lost one peripheral IV late last night so she has a free hand which is both good and bad.  Good that she can use the hand but bad that she can use it to pull on her NG tube.  Abby told me that she and Ellie have an undertanding about the tube.  So far she isn't pulling on it or complaining about it so we will see.

Her surgical dressing got changed this morning and the NP took out the drain tube which was remarkably similar to a red coffee stirrer.  Ellie has her old North-South suture line and a new one where the ostomy used to be. 

Things are good and the 12 tubes and lines are starting to be pared down.  we are down to 8.  We will not lose too many more until we get off the epidural. (Abby takes over writing now)

Ellie got to experience something new last night, bladder spasms.  A mom who had the room next to ours for a long time on 8west, came to visit last night.  She has a great blog and a very strong and tuff little girl. Their blog is called, From the Banks of Jordan.   She had to leave last night when Ellie's first bladder spasm hit.  It happened because Ellie's bladder was not able to empty enough because the Foley catheter wasn't draining correctly.    It was not pretty and not fun.  

We moved some stuff around and  got a better set up for her Foley but it happened again in the middle of the night and again as soon as Gib got here this morning.  But I think we have things under control now.  She was also very itchy and restless last night, which didn't meant we didn't get much sleep.  We had long talks about what all the numbers on the vitals monitor mean and which line coming off of her does what, what shapes you can find in the celing and long renditions of all the princess stories that I could remember.  

Finally, this morning I think we got the true perfect mix of meds and the itch is gone.  I know this becasue she looked at me at 9am and said, "mommy my face not itch any more!"  She watched a few movies, played with a new flashlight from her grandma in Maine and now is taking a good nap.  

It was good to see smiling Ellie today.  Also Dr. Jennings stopped by during rounds and she still in managed to give him an IV handed high 5 and flirt.  Go Ellie Go.  

Thanks for all your support and words of encouragement, you don't know how much they help.

Sleepy, itchy and a new NG tube

Ellie did very well last night and the epidural is working great.  She did so well that Gib was able to go home late last night. 

She did get a little restless around midnight and decided that she didn’t like having a tube up her nose.   

So she pulled it out.  

First she pulled off the protective hand sleeve that keeps her from grabbing things and then she grabbed hold and pulled the NG (naso gastric) tube out.  All in about 20 seconds.  So that bought her a new tube, and some valium.  She did a great job dealing with the new tube being put in and it is working even better at draining her stomach contents then the first one did.

The Valium helped her relax and get some real sleep.  After she pulled out the NG I got in bed with her.  It was not the most restful sleep for me. Since I was there to protect the 2^nd NG, I woke up every time she moved.  We did put large socks over the protective cuffs over her hands to make it harder for her to get the tube.   But this doesn’t mean she doesn’t try every few minutes. 

 Luckily she only needs this tube for another day or two 'til her stomach wakes up and starts doing it's thing.

There is a narcotic in her epidural that makes her face itch.  We knew this was going to happen as it has happened every time she gets an epidural.  But the first round of meds was not strong enough and so around 1am we got a narcan drip.  This is the same med they used on her after her second surgery to reverse the morphine, when she was just over a 1 month old.  Back in the NICU, You don't know how Lucky you are.  Just in a much smaller amount dripped in over a long period of time.  

The combo of the two meds seems to have made her much more comfortable.  She has been alternating between watching Kipper, sleeping and asking about the restaurant here at the hospital.  She loves any and all restaurants and that includes the cafeteria here at the hospital.   

Sadly she will probably not be able to eat for a few more days as we wait for her intestines to wake up.

All in all she looks good and keeps telling us that she has no pain, which makes Gib and I very happy.  

Her goal for today is to sit up and breathe deeply.  This will help clear all the crud out of her lungs and stop her from getting pneumonia.   

My goal is to learn more about Jon and Kate plus 8 and how insane they really are.  

Post-op report

She’s out and among our friends on the 10th floor.

 At 3:00 on the nose Dr. Jennings came to give us the post-op report.  Exactly four hours from the update that they were beginning.  Wow this guy is good. 

Everything went quite well.  Her ostomy is gone, he was able to ‘save’ almost all of the small bowel that made her ostomy and has reconnected it to her colon.  To minimize the invasion of the surgery, he didn’t measure anything but once again told us that she has ‘a fair amount of bowel with good motility.

The connection (anastomosis for you short bowel geeks) is good and he laid all of her bowel in nice, gentle loops in her abdomen to reduce the chances of kinks forming. 

Her liver continues to look pink and a tiny bit firm.  He also noted that the biopsy needle had a bit of resistance which may be an indication that fibrosis is still there.  That isn’t ideal but it is very close to the report from her last biopsy which indicated that no further damage happened as a result of her time on Omegaven.  We will wait for the formal report from pathology to see what the final verdict is because the proof in the tissue.  We’re sure Dr. Puder will give us a full analysis of what the means as soon as we get the report.

She has a drain in her old ostomy site to let fluid out and reduce infection but other than that, we are ostomy-free.

 She is very sleepy by design to let her sleep off the first night but she wakes up every now and then and asks for something familar so she is doing well.

 The new game of Short Gut hokey pokey begins now.  We don’t know the rules but will learn them as we go.

She's in

Ellie woke up this morning and told us very clearly that 'I am very excited to go to the hospital today!'

After a the normal amount of waiting room time when she told every doctor nurse and staff person that she was losing her ostomy today, at 9:30 this morning Abby finally carried her into the OR and watched her ride the versed wave to sleep.

And away we go.

Dr. Jennings told us that it may be a 'normal long time', or a 'more than normal long time', depending on what he finds when he opens things up.  If there is a lot of scar tissue or adhesions from the last surgeries, it may take a while to clean things up.  

We'll leave it to him and our favorite anesthesiologist.  

Yes we have a favorite anesthesiologist.

Ellie has had him three times now and we ask for him by name.  He is great with us, with her and Dr. Jennings told us this morning that we are right and he likes having this guy on the team.

Waiting rooms suck and always will.  Now it is nothing but waiting and we can't do a thing to help (as much as Abby would like to) so we have taken off and will avoid the waiting room until the phone rings.  

If only I could find a bed for a nap.

Why does Point Break keep popping into my head?

There is a fine 1991 movie called Point Break.  In this movie a young FBI agent goes skydiving with a bunch of bank robbing surfers.

Just as they are about to jump, one unnamed surfer looks at said FBI agent and says, "You're about to jump out a perfectly good airplane Jonny, how do you feel about that?"

I woke up this morning with that thought in my head.  We are on a perfectly good airplane right now.  Ellie is happy, growing and wonderful. We have a great nurse and things are going well.

So why jump?  

Well, I guess it is all about perspective and where we want to be.  Ellie with an ostomy is wonderful, but she is also a kid with a central line which is a huge risk and a kid who needs lots of IV fluids each week to keep her happy.  Jumping likely gets us a girl who can potentially hydrate herself and one step closer to removing the central line reducing that risk.

Besides, if you know our surgeon, you'd jump too.

So off we go to Children's in 5 minutes.

Geronimo!

Pre-Op Day

Tomorrow is going to be a very long day.  Today was training.

We had a 7AM pre-op appointment at Children’s.  That meant getting Ellie up and out of the house by 6:15.  Coffee for us and nada for Ellie who started her time of  Clear fluids only for the day and at midnight she goes to NPO(nothing per mouth).

All went well with the pre-op folks and we were shocked to see that Ellie is now up a full kilogram (2.2 pounds) since she went on pre-op TPN.  I guess if you have 900 calories of TPN, 750 calories of formula and three good meals each day that you can’t help but gain weight.  Shoot, I would gain weight on that diet. 

And gain she did.  We can feel the chunk in her thighs, which makes us all feel better as she goes into the mess.

We got home around lunch after telling three sets of people (surgery, anesthesia, and the Nurse Practitioner who works with Dr. Jennings) very similar things and getting a tear-free blood draw. 

We are very lucky that Dr. Jennings lets us do pre-op bowel at home prep instead of doing it in the hospital.  Insterad of being cooped up in a hospital room with a very perky girl, we let ellie ride her bikefor a walk during her bowel prep and played at Ellie's favorite playground.  

We are also lucky that Ellie’s prep is easy.  No food or formula (just Pedialyte) after 7 AM today.  Enemas until things are ‘clear’ tonight. Nothing in the g-tube after midnight. 

This sounds easy.  Until you try to give a very logical and opinionated three year old her fourth enema in an afternoon. 

No fun at all.

The plan tomorrow is for an 8:45 surgery.  That means we need to be at Children’s by 7:15 tomorrow morning.  Dr. Jennings has Ellie scheduled for four hours of surgery which, depending on whether this time includes prep and finish time could be as long as six hours from the pre-op room to the PACU (Post-Anesthesia Recovery Unit) recovery.

The plan of at attack:  Dr. Jennings will do a reconnection of her colon to her short bowel, clean up some scar tissue that will inevitably be clogging the works inside, and take a much-anticipated liver biopsy for the folks who are looking at the long-term effects of Omegaven. 

So we hope to have a fairly comfortable girl back to us by late afternoon but understand that things rarely go as planned.  If she is out of the PACU by dinner time we are doing well.

This is one of the rare times that Abby and I will both spend the night in the hospital since post-op nights are often action-packed and sleepless.  Fortunately we have friends and family who are coming over to take care of Gus.

You would think that after eight surgeries in three years this would get easier.  It does.  Until we start thinking about what it all means and what tomorrow afternoon could hold for us. 

Then it gets scary, even the ninth time around.

But on the upside, we probably are all done saying ‘How are your balls?’ to Ellie in crowded restaurants.

Gratuitous Photos

No message, just some good pictures to remind us what she looks like a week from now when things are all hinky.

The pre-surgery TPN is doing its thing and Ellie has put on a little more than a pound since we added a lot of calories last week.  This will give her a nice cushion for next week.

So we have that going for us.  

Which is nice.

Prepping for next week

This week we have been spending a lot of time getting Ellie and ourselves ready for next week's events.  The reality of what is going to happen is still quite abstract to all of us since Ellie's ostomy has been with us since she came home in 2006 (yes, ostomy bags have been part of our family since November, 2006!).  It has been a long time since Ellie has had surgery of any kind.  

The loss of the ostomy really hit home yesterday afternoon.  Somehow Abby and I got into a long conversation about our inventory of ostomy supplies.  I counted six sets.  Not a lot but I figured it would get us through.

"Six sets, eight days.  We should be all set."

Abby looked at me and said, "Okay, but we need to let Children's know that we need to bring some home with us afterward."

 I looked at her and waited.  I figured that it would dawn on her. 

After a long pause, I said, "Abby, we're not coming home with an ostomy."

"Oh wow.  I just hadn't thought about that."

The other side of the reality of going in next week came on today as we had Ellie's regular clinic appointment with the Children's Short Bowel Team.  The thought of being 'in' again with a post-op Ellie is tough to think about.  

But we did 8 months so a week or two shouldn't be all that hard.  Right?

The particulars from clinic:

• Ellie weighed in at just what she did in February.  ~14 kilos ( about 31 pounds) which puts her in the 50th percentile for 37 month old girls.  Not a big gain but,
• She grew about an inch and half since February.  which put her skinny self in the 75th percentile.  three quarters of 37 month old girls are shorter than Ellie.  Yahoo!
• We asked to go back on TPN for the  period around her surgery to give her a bit of a pre-and post-op cushion for the time that she doesn't eat around surgery.  She starts omegaven and TPN tomorrow for the coming week.  No big deal but she will get 50% more calories than standard D10 and we also get the benefits of all of those omega threes for her surgery.
• She is also starting her third course of cipro tomorrow for the pre-op period.  Having bad gut bugs is especially bad when you are operating on the bowel itself.  
• Abby won the badass parent award for her line repair skills.  'You did what?,' said one doctor. 'Wow.'
• And we got to meet a kid from Connecticut who had Ellie's original surgeon at Yale-New Haven, Dr. McKee.  The kid was at YNH and was referred to Children's for omegaven by Dr. McKee and the mom knew all about Ellie.  It is good to know that good doctors are aren't being vain and are doing the best thing for their kids and getting them omegaven.  If only all  doctors could do that.

We have a pre-op appointment next week for the administrative particulars but at this point next week we should be in the depths of an unpleasant night of home bowel prep (think roto-rooter and massive colonics) and then we are off to the big house.

I think we can.  I think we can.....

  

'Very Happy'

Those were the words from Dr. Jennings this week as he gave Abby the report from Ellie's upper GI.  No major changes from the last study and her 'transit time'- the time for the dye to move through her gut- looked good

Ah, those were the words I wanted to here.  

No reports of gross dilation, a second stomach (that's what it looked like in some of her early UGI studies), or a huge pocket of doom.  

Phew.  All systems go for surgery on the 29th.

Now we just have to deal with the fact that it is going to take a significant step backward to make progress with Ellie.  Thinking of our bubbly little girl all laid up in the hospital is terrifying but we understand that this is what it takes to move her forward so off we go.

So we are spending the next two weeks getting Ellie and ourselves prepared for what we figure will be a week or 10 days in the Inn.  We are lining up new things to entertain her and talking a lot about the hospital. 

Ellie told us in vivid detail about 'the nice nurses who like me' and the 'nice woman in the hallway who cleans her room'- two things that are in her head that we didn't tell her about.

Memory like an elephant.  Damned Omega-3's.  Thank you to Max, Kai and their folks for the great book, it will be nice to have new things to read when she is in.  Thank you.

The line repair is holding up nicely and we are past the 72 hour mark, phew!

Line Repair number 3

Third time is the time charm right?

So yesterday during Ellie's CVL dressing change I noticed something dark in the thin part of the catheter.   Then I gave it a squeeze and it was hard.  Ellie has two repairs to her line, one close to the skin and one that lives outside her dressing.  The only thing we could think is that it was the metal hose barb that slides into the old line during a repair.   Some how the metal piece had jarred loose and was moving down her line (closer to moving into her)  We had no idea that this could happen and when we called Dr. Jennings he said the same thing.  

The main concern was not the metal piece working its way into Ellie since there was another repair down stream that would have stopped it.  We were more concerned about 

1. How strong was that old repair without the metal piece?
2. How long did we have before that hard metal piece caused a break in the line?

So we knew we needed a repair.  Dr Jennings said he could do it this afternoon, but with the dry time the repair needs we would have had to push Ellie's night time infusion way back.  We have a repair kit here at home and I have done it before, so why not do it again?  OK, so the first time time I did it I had a world class transplant surgeon talking me though it.  But, I could do it by my self, right?  Right.

Oh, yeah and because a picture is worth a thousand words, how about video?  

What you are watching:

1. Ellie's old line lying on sterile drape
2. Abby Cutting central line to repair
3. New end of line attached to old line by sliding metal hose barb into old line, it comes already attached to the new line.
4. Clear tube slide over line and filled with Silicone to hold the line together.  
5. Oh yeah and all to the sounds of the movie Bugs Life that Ellie was watching.

We were right that it was the metal piece from the old repair and we are going to bring it in with us to our next clinic visit for show and tell.  All in all it went well, Ellie is now asleep with D10  running at her normal rate of 125ml/hr.   I only felt like barfing for a few hours after cutting her line, and I am feeling better and better the longer we go with no incident.  

This is the old line post repair.  It will soon be attached to one of Ellie's dolls.  This is not how we thought we would be spending our Tuesday morning.  I think we will all finally relax in 72 hours after the threat of infection has passed.   

Upper GI

Yesterday was a scheduled trip to Children's for us with Ellie. Before her surgery later this month Dr. Jennings would like to know what we are looking at and also have a baseline against which we can compare any post-op changes.

To do this it meant another contrast upper GI study with our friendly radiologists (who somehow remember her).

As a very aware three-year old, Ellie is getting more keyed in on what is going on than she has been in the past. She knows what the hospital is and what happens there, and who and what we see when we are there. For the most part she is positive and excited about going to the hospital. She tells us about the big soft bed, the buttons that makes the bed go up and down, and the table that comes across her bed. When I tell her stories at bedtime about her favorite fictional creatures, Fish and Octopus, and their trips to the hospital, the stories do very little to put her to sleep since she stops the story when we forget a tiny detail of what we see as we walk through the hospital (No, daddy, after the cod, we see the bubble wall, and then the elevator...)

As we ate dinner Tuesday night we started talking about Wednesday's trip to the hospital and going in for pictures of her belly. For the first time there was some anxiety. we didn't know what to do since most of the time she runs into the lobby and is happy to be there.

On the fly we started telling Ellie about what the upper GI was, that it wouldn't hurt and that it was just a very fancy camera to take pictures of her belly. Abby then suggested that she could bring a camera and take pictures of them as well.

Problem solved. Phew.

So we went in and had the normal UGI happy as can be: An initial belly film, load of barium chalk through the g-tube(another good use for a g-tube), more pictures and some manipulation: a lot of waiting, lots more pictures (even Arnold the Piglet got films taken) and we were out the door five hours later.

No tear, no arguments. One free ballon for super girl.

So no we wait to hear from Dr. Jennings about the results with a bit of dread since the radiologist did use the word 'dilated' when he was looking at her films:
We are crossing our fingers about this and hoping for the best with an undersatanding that the radiologist likely didn't have much experience looking at Ellie's unique plumbing and Abby had to draw a diagram for him to explain what was where, how it was connected and how it works.

On the upside, now that the UGI is done, we are on the cancellation list and can move her surgery up if there is an opening in the next few weeks. Fortunately things at This Old House are slowing down and we are down to one final carpenter so a stay at the Inn could really work if the opening happens.

We figure the sooner we get her in, the sooner the recovery starts and the sonner summer starts. We have plans to go to the Oley Foundation Conference in Florida in the end of June and are going to do everything we can to keep those plans.

Ellie needs to know other kids with tubes and there is a great community of families at Oley to get to know.