Steps in the right direction

Ellie's has moved out of the post op phase an right into the improvement phase this week.

• She has started her feeds again and instead of feeding her through her G-tube, we are giving her as much as we can through her mouth. This was tough for the first while but with some persistence and a little bit of sucrose, we were able to convince her that bottles are good and that the full feeling her belly is a very good thing. She now sucks down respectable sized bottles (20 ml) every hour or two and squawks whe the bottle is done. Good signs.
• Her ostomy continues to work as planned. The food goes in her mouth and shortly afterward it flows out of her ostomy after being digested in her stomach and absorbed in her small bowel.
• The outflow from her ostomy is just the right amount and hasn't gone out of control like it does with some kids. She is right on track with her output.
  

The doctors are very happy.

Which leads to the best news so far: if all goes well and barring any delays because of infections, etc we could be going home on schedule with the 4-6 week post op release

We have started the train rolling and are in basic training again with the teaching pros here at Children's to learn all fo the ins and outs of Short Gut care that we haven't picked up yet. Evn with home nursing, we are the primary care givers for Ellie and need to know all of the procedures. tomorrow we start on IV pumps.

Cautiously optimistic is the way we are moving and we always want to be a week late going home than a week ealry.

If anyone mentions the holiday at the end of next month or a particular Bing Crosby song, so help me............

Look, Gramma, long sleeves!!!

Three steps in the continuum of Children's

We got an interesting call yesterday from a friend of ours in california who called to tell us that a friend of hers had just had a baby in RI, been transferred to Brown (Women and Infants) and was on the way to Boston (sound familiar???). It turns out that the baby has problems with his heart and digestive system and needed the hlp of Children's where they have specialized programs for the specific abnormalities that the baby was born with. We made contact with them last night and it turns out that they are on the adjoining wing of the hospital. Same floor, same elevator, just go straight instead of turning right to come to see Ellie. small world. Abby has spent some time with them today giving them the lay of the land here and explaining all of the great things that the hospital has done for us over the months that we have been here. Hopefully they will only be here for a few weeks but just in case we are setting them up with all of the tools for being hospital parents.

On the other end of this, we met a mother tonight whose three year old son has a short bowel that is significantly shorter than Ellie's. He is three, eats food, grows and plays. With a super-short gut. Had an ostomy. Lived in the hospital......Lots of things in common. His mother spent some time with us this afternoon explaining what a shock it will be to go home and that it is sometimes equal to the shock of being here.

Hopefully we will see that in the coming months.

It is nice to share information and stories and have them shred with us. It lets us know that we are not alone in this marathon and that there are lots of parents out there who are dealing with situations that are similar to ours, and also some that are much worse.

We see kids every single day that make us grateful that Ellie only has to deal with short gut.

Knock on wood now.

p.s. She continues her stellar recovery. She now walks around her crib and turns both corners at the end.

Hi!

Ellie has been moving towards words for the last week or so with solid consonants and a repeated 'na, na, na" when she is grumpy.

Yesterday afternoon her words had a good H to them and this morning, she looked at Abby and clear as bell said "hi!".

Which is great fun and makes sense since that is the word that she hears from the stream of nurses who stop by to say hello all day.












Ellie's recovery is going very smoothly so far. She is off of heavy drugs and is weaning off of tylenol as well. To look at her you would never know that anything happened. She is standing up, playing, rolling onto her belly and is just very, very happy these days.

http://www.youtube.com/watch?v=lAi9vUgXr4s

Her ostomy is working as we had hoped- liquid flows from it very freely meaning that there is very little pressure on her bowel and also meaning that her bowel is moving things through.

Three Days Post Op

Ellie continues on her amazing recovery from surgery. Infants recover much more quickly from all sorts of surgery than adults and she is no exception. Last night N-G (Nasal-Gastric) tube was removed along with her foley catheter which brings us back to the same number of tubes that we had to begin with plus a heart rate monitor.

She is handling her ostomy very well and has been playing today in her crib and on the floor and even sits up with what must be a very sore belly. The nurses tell us that pain doesn't limit baby's activities so they don't favor an injury and she is right up and at 'em today.

As a bonus, her ostomy is functioning properly already and fluid is coming out regularly, which is the goal of the ostomy.

She is still riding the morphine but has started to taper off of it overall. Her dose was reduced by a third today and we will keep her on enough to be comfortable before transitioning onto tylenol some time soon.

We will think about feeding her in a few days.

A video from Thanksgiving afternoon: http://www.youtube.com/watch?v=664ZlufIKQA

Happy Thanksgiving

Today is Thanksgiving. A day that really never had all that much meaning for me.

Yeah, yeah, I’m thankful for this and that and that I’m healthy and happy but those were always big, abstract things to give thanks for.

This year is different. I have lots to be thankful this year.

A new baby. Have you seen my girl? I’m biased, but man what a great baby, short gut and all.

A spectacular wife. Who else would I have in this foxhole with me? She is fantastic, beautiful, and smart. And she makes me laugh every day. What more could I ask for?

Our family. We have learned not to talk too much around our families because anything that we need gets taken care of. From clothing with snaps to trashy magazines for the waiting room, to mindless talks about boats with my brother when things start to suck, to a place to stay for 5 months, they have been there. I don’t know how we would have gotten this far without them. We are very thankful for that.

Children’s Hospital. Children’s hospital was always an abstract thing to me growing up in New England. I always knew it was there, but never knew what it was or what it did that separated it from other hospitals that treat kids. Well I know now that it is a truly special place for little kids and their families. I wish that they would toot their horn a little bit more so people would know what it was before they need it.

Nurses. I am convinced that they love her as much as we do. We couldn’t ask for a better group of dedicated talented people than the nurses here on the floor. They have moved on from being Ellie’s caregivers and have become our friends, as well.

Omegaven. The thing that we are most thankful for, Omegaven has changed the rules for how Ellie has been treated. If Ellie were very sick with liver failure right now we would be in a much different situation than we are right now.

Doctors. We are very thankful for Ellie’s great doctors. Sometimes we feel sorry for their families when they spend so much time caring for our family. Weekends, holidays, it doesn’t matter. Ellie’s surgeon was visiting last night at 8 PM, the night before Thanksgiving. We love the attention, but feel guilty at the same time.

My bosses. Throughout our time with Ellie, my bosses have been incredibly understanding. All they ask is how Ellie is and what they can do besides sending good healing karma our way. I am very thankful for this as we see the many families that juggle work and baby here in the hospital. Working from the hospital has been a real help for us.

Short Gut Parents. When we learned of Ellie’s condition, we felt alone and like lightning struck. Come to find out that there are lots of families out there with babies like Ellie. They have shared ideas with us along the way that have helped immensely and let us know that we are not alone with this Short gut thing. The communications with parents whose babies are further along in the process is especially comforting. Seeing light at the end of the tunnel makes the bumps in the tunnel no so bad.

Blue Cross. Not one medical bill so far. Not one argument. It’s like they saw the TV commercial that says ‘they are the insurance company, it’s their job to pay the bills.”

Comments on a blog. This blog experiment that started as a way to avoid having to attach pictures to emails has turned into an entirely different thing since April. We have met people and their babies and even shared information that has gotten two babies onto Omegaven. The comments from friends and family have been great and have picked us up in bad times and made us laugh all the way along.

Getting better all the time

Ellie is continuing to do better by the hour.

She is a lot more awake and alert today than yesterday and we almost got a smile from her beofre lunch. Now she is pretty well sacked out and resting, which is just what she needs to be doing.

This afternoon she came off the epidural which numbed her from her chest to her belly button during and after sugery. This removed one whole set of tubes from her tangle of tubes and wires. Hopefully her foley catheter will come out later today to further pare down the bird's nest and get us closer to the way we were pre surgery.

It turns out that much of our pain issue on Monday night was because the epidural worked for the incision site, but not the site of her new ostomy. Epidurals are inexact and assumed to migrate over a certain band of her spine. The migration wasn't quite even and left her lower belly without numbing.

The anesthesiologist took this quite personally and was really bent out of shape about letting her feel any pain. He visited late yesterday to check on her and tell us how sorry he was. In the age of litigation all over the place whenever things don't go perfectly, it meant a lot to hear his concern and sincere apology.

We have caught up with the pain and the morphine has been well established . This has helped the pain and she is very comfortable as we keep up on the meds.

All is going as it should. The swelling of her ostomy (which looks a lot like a puffy rose) has gone down significantly and we are encouraged by her recovery.

Baby steps.

Ah, morphine, sweet nectar of the opiate gods

At 4:30 this mroning we finally decided that enough was enough, our little girl had seen enough hurt for a while, and started up the morphine drip. Very slowly at first, but then building to a full dose, she is now on the magic juice and, for the most part of pretty comfortable and sleeping the day away.

She is much bigger than the last time she had problems with opiates and this time she seems to be doing much better. Her heart rate and breathing are solid and she is only a little bit dopey. I wish we could give her more dope right now but we are being cautious because of her history. She is on a steady drip of morphine with a button to push for more every ten minutes or so. The trick is to get ahead of it and stay ahead of it to stay away from the really bad pain.

In a few days things should settle down and we can think about weaning her off of the heavy drugs.

Right now we want her happy, quiet and dopey.

Hopefully this is the low point in the recovery from this surgery and we can have better days from here.

In the never dull world of Ellie, though, you just never know.

One handed, left-handed Juggling

Pain sucks.

Seeing your baby in honest pain really sucks. Not fussiness or fall down and bump your head pain, but rock your world, everything hurts PAIN.

Not knowing what to do about it and not being able to use the gold standard answer is like juggling one handed, left-handed. You want to use your other hand to make things easier, but you can’t.

Ellie has had an adverse reaction to morphine in the past (scary low heart rates, low respiration, etc) so we are at a considerable disadvantage in the pain management department. She can have it but we need watch her very, very carefully. Most babies come out of anesthesia and are given a dose of morphine to send them on their way for the first few days post-op. It works as a pain killer and a sedative, letting the baby sleep soundly while their body recovers from the shock of having their belly opened up, their guts emptied, moved around cut and sewn together.

Ellie can’t ride the morphine wave so the pros have to get creative. Tonight we had to see Ellie in honest pain for the first time in a long while tonight after she came upstairs from the recovery room. On the handy little baby pain measurement card that the nurses carry with them, she was off the charts and we couldn’t figure out why or how to stop it.

A little of this, a little of that and she is good for 10 minutes, just long enough for us to believe that she is comfortable and that we could take a deep breath. Then it ramps up again and we scramble to adjust.

A long night. And I remember the times that I felt lucky over the past few months that my baby wasn’t the one down the hall screaming in pain. Now she is that kid.

A little bit of morphine would be nice right now.

Surgery Update

Ellie is out of surgery, awake and alert. She is groggy as you might expect after 6 hours under anesthesia but she is up and Abby is holding her.

Ellie went to the surgical floor at 11 this morning. At noon she went in to the OR. Abby and I adjourned to my parents hotel room across the street.

At 3:30 the surgeon called us to give us the update and we went back to the hospital.

What he found:

Ellie’s bowel is longer than we had been told in the past. In June, we were told that she had around 30 cm of small bowel, which is very ‘critically’ short. Today’s surgeon measured her bowel and told us that over all she had 56 cm of bowel that absorbs nutrients, and only 10 cm is lazy with limited motility. This is really good news for us.

She had two obvious tightenings in her small bowel that had dilated portions above them. The surgeon opened these and we hope that it will allow the dilated parts to come down.

Her bowel is still very large, and in some places it is close to 4 cm (a little less than 2 inches) across. Fortunately, the surgeon emptied her bowel contents and saw that the bowel was moving well when it was allowed to be empty. This is a good sign.

At 4 PM, the surgeon went back in to replumb her bowel and we have just gotten a call at 5 PM to tell us that things are moving along well and expected to be done a little after 6.

At 6:30 we got the final report from the surgeona nd anesthesiologist who told us that things are good and that she is recovering well.

At 7:30 we went in to see her and she is doing well with the usual complement of wires, tubes and other assorted equipment that will be pared down in the next few days. A tube in the nose, an EKG monitor, a foley catheter in her diaper.

And one whopping big old nasty ostomy in her belly. Red scary and puffy, it is the size of a fifty cent piece and right now it sticks out about half an inch into the ostomy bag. we are very glad that we waited to do this with a big baby instead of a tiny one. That ostomy would have been huge a few months ago. Now it seems to be normal.

We will be back in Ellie’s room tonight after some time in the PACU (Post Anesthetic Care Unit). we managed to get ourselves one of Ellie's A-team nurses for the night and she only has Ellie as her overnight assignment.

We will have videos and pictures (internal and external) to share later on.

After a lull of activity in the land of Ellie and this blog, let the next chapter begin. Hopefully it will end with a triumpant exit as we moonwalk out the door.

T-minus 48 hours

Hey, baby. Nice tooth*

We got word last night that Ellie is the third 'case' or operation of the day on Monday, barring any emergencies or urgent surgeries that bump us from our slot. She should go in mid-morning and they tell us that it could take 4-6 hours. Lots of waiting. I'm going to save the Sunday crossword for Monday.

No great news today, she is very happy and dances up a storm while she watches the parade of nurses go by our door, blissfully unaware of what is coming her way on Monday. I guess that is a good thing- no anxiety for her, just doing her baby thing and then whammo, she goes to sleep and feels crappy when she wakes up.

She has become more aware of her hospital equipment in the last week. The tubes and bright plastic clamps are very similar to her bright plastic toys and we have watched her chew her IV lines a few times.

To fight this we have made a tube cozy for her lines that covers them with fabric. So far she hasn't discovered what is inside and leaves it alone.

Another marvelous invention that came out of our necessity. Oh what good fun that parents of kids without short gut miss.







* The number one pick up line in the bars of Rangeley, Maine.

Reactions to the WSJ Omegaven Story

I found two interesting posts on other blogs tonight about the omegaven article:

http://parentingsolved.typepad.com/parenting_solved/2006/11/short_gut_big_n.html

http://www.pointoflaw.com/archives/003186.php


I am glad that others see the strong arm ideas of the company as being inappropriate. I am working on a letter to the Journal. I will post what I submit.

X Marks the spot

Ellie's pre-op preparation has been under way for a few days now and will keep building until Monday's surgery. She has come off of formula (the supply of milk ended a little while ago), her meds are pared down to the minimum and we are taking baseline readings of her heart rate, heart function, and breathing to measure against after she comes out of anesthesia. We think that she may have a pulse that is on the slow end of the range and that her dips may be normal.



Today the pre-op folks came down and marked the spot on her belly where the ostomy will go as well. Abby told me tonight that seeing the spot made Monday's long awaited surgery very real for her. It has been a while since her last 'real' surgery that didn't take out or replace a central line and we are remembering what it is like to go through that. I rode down the elevator this morning with a couple whose child was in for surgery and they were waiting and talking about having nothing to do for the next 4 or 6 hours. I almost barfed thinking about it and the fact that we will be there Monday.

We both understand that to take a step forward we need to take a step back, but having such a great, happy kid is making that tough.

How can we take this smiling baby and make her stop smiling?
But then I remember what our nurse told Ellie a while ago:

"Ellie, you need to go home. The kindergarten bus doesn't stop at Children's."

Which reminds me that even though Ellie is very happy in the hospital (and presently keeping her mom up as she sings the night away), it isn't where she belongs. Eventually, one of these days (or weeks or months) she belongs at home, riding the dog and sitting on the lawn.

So we rest up for a few days and then start this wagon train a rollin'.

I have taken the week off from work (man are my bosses great!!) and we will hunker down and take care of the girl.

A new video: http://www.youtube.com/watch?v=PGnqbaso6pU

Short Gut goes to the Street

Today's Wall Street Journal had a long article about the relationship between Ellie's doctors here at children's and the pharmaceutical company that makes Omegaven, the IV fat source that is letting her grow without the liver complications of other IV fats. Unfortunately, Ellie didn't ake it into the story, but soem of the other kids that we know that have benefitted from the stuff were featured. I guess that we aren't far enough along the road to being fixed.

It seems that a complication may be the company itself that doesn't like the way the doctors are using the product.

I hope that the limited information about the fat will convince the pharm folks at Fresenius to keep selling the Omegaven to us.

Just a little nerve wracking to think that we might have to go back to the stone age or search for another omega-3 source for her PN.

The activist side of me thinks that it would be a good fight to take on the drug company. Imagine the news story of 30 sick yellow babies coming from the transplant unit to ask the billion dollar company to let them live. ....

I'd prefer that it doesn't get to that and that the company keeps selling its drug.

A Whole new set of tricks

What a difference a few days make.

I left on Tuesday morning for a conference in Orlando. 25,000 SCUBA divers and the ocean conservation folks. Same church, different pew. Well worth the trip.

When I left, Ellie was cute and happy and I had a good time before I had to run off to the airport.

When I got back there today, my girl was a totally different kid. Somehow her voice had migrated from her throat (gurgle, gurgle, squeal) to the front of her mouth where they are now dah, dah, dah, bah bah bah. And they come in series that sound like sentences. This girl has some things to say. Very close to the teacher on Charlie Brown. This is very good for Abby and I who have been concerned that her voice was still in her throat because her mouth doesn't get the workout that it should.

The nurses also told us that she points to the chair when we are gone. This is a heartbreaker for us and made leaving tonight very hard. No, Mom, you don't need to come and sit with her. She is asleep and happy as can be.


She is also learning how to play peek a boo and is very excited every time that you reappear (as long as you don't appear too soon and scare the shit out of her, literally). Abby took a nice video of her and it is up on YouTube: http://www.youtube.com/watch?v=uqaT8dGTJG4

7 Months Old Today

Well Gib is in Orlando this week and I'm sorry but his computer is the one that can handle the camera. So, you will just have to get a written update and we will post pictures as soon as he gets back. That being said, Ellie is really cute right now. Yesterday was a big day, she cut her first tooth. She has been chewing on everything and yesterday she chewed on my finger and the tooth was unmistakable.

I also had a team meeting yesterday with all of her doctors and nurses to get a better handle on her progress and where we are going from here. Ellie's small intestines have very little motility, so food just pools in them for hours at a time and then very slowly moves on to the large intestine. Because the food spends such a long time hanging out it is a great place for bacteria and yeast to grow. Most people do not have any bacteria or yeast in their stomach or small intestine, it all lives in your large intestine. Because Ellie is missing the valve between the small and the large intestine the bacteria from her large intestine travels up through her small intestine and into her stomach.

So because of this overgrowth her intestines are irritated and inflamed. This has made it so that drugs that we used to treat the overgrowth were able to transfer from her intestines to her blood stream. Because patients should not be able to absorb the drugs through their intestines the amount that is put in the intestines is more than you would give if you were injecting the drug. Almost all the drugs that are used to treat overgrowth have listed in their drug safety info that they do not transfer from intestines to blood. But Ellie apparently is the exception to that rule. And this is how we had the kidney damage a few weeks ago.

Almost all antibiotics leave the body through the kidneys so when she absorbed too much Gentomyacin it went through her kidneys and overwhelmed them. So her kidneys kinda went into shock and only did about 40% of their job. So it has been almost a month since we discovered the problem and her kidneys seen to be recovering nicely. Now because Ellie has potential to absorb other drugs we are limited to the antibiotics and anti-yeast drugs that leave the body through feces. That leaves us with only 2 antibiotics and 1 anti-yeast.

If we stayed with our current treatment of just managing her overgrowth with drugs then very quickly the bugs in her belly would be come resistant to the very limited selection of drugs that we have. Eventually, we would loose the ability to treat her overgrowth. So, now we have to look at fixing the cause of the overgrowth, which is her lack of motility. Two months ago we were looking at surgery as one of her options and now it is her only option. So to surgery we go.

November 20, Ellie will have surgery to create a temporary ostomy. She and her bowels will go through 5 days of prep before the surgery and we have been told that there is potential for this surgery to very long. Our surgeon may have repair or clean up from previous surgeries. We are meeting with the anesthesia team now so that we can hopefully avoid a trip to the ICU after surgery like last time. Gib and I are ready for big day, we have one week to try to get everything done that we need to before the big day. It is strange to say but I am excited about this surgery, it is a big step forward and I'm really ready for one of those.

After surgery we will have (if everything goes well) 4-6 weeks of recovery and learning how to care for her new ostomy. If you time out 4-6 weeks there is potential for us to be home for that big holiday in December, but Gib and I have decided not to talk about it. We will celebrate whereever we end up. Ellie will have the ostomy for many months until the dilation comes down or we decide that it is not working. Then she will go in for another surgery to have the intestines reconnected.

So that is where we are now. Ellie is on the floor at my feet right now playing on her new play mat. She looks great, and along with a new tooth she has new sounds. She has learned how to put her tongue to use and is now saying NANANANANA and this morning I heard GAGAGAGA. Yahoo! No delay in speech! The NANANAANA is starting to sound like and be used like NO. I am in so much trouble down the road if that is her first word. She is also huge! She weighs 15.7 pounds and is very long. She is in 6-9 month clothes right now and many of the onesies are getting too tight. Okay, I better go play with my girl she is about to start sucking on my toes. I promise pictures this weekend!

Play Time

Ellie is spending a lot more time these days playing which is lots of fun for her and for us. We have gotten a play mat for the floor in her room so we can play here instead of going to the common playroom that may not be as clean as we think it is. $19.99 well spent.

She is also getting lots of time with Physical Therapy and they tell us that she is on target or ahead of the milestones for her age. Again I say: Delayed My Ass.

Here is picture of her on he exercise ball in he PT playroom from yesterday. PT is much more fun for her than it used to be.