Nurses

We have been home now for almost eight months since our discharge from Children's (the first one, not the short prolapse visits).

As we went home we approved to have a nurse in the house to help with Ellie for 10 hours a day for a total of 70 hours each week.

Until this month we had four nursing agencies looking for nurses for us but due to a serious shortage of nurses in Boston, we weren't able to find a single nurse to take a single shift for us.

Not one.

Last month we got a reprieve when a murse (male nurse) who had some experience with babies a while back and was coming back into pediatrics came in to work with Ellie a few da6ys a week. This wasn't ideal for us and we never felt very comfortable with his nursing skills, his basic baby skills or his comfort with Ellie. We were always watching and listening to make sure that things were all right. It sort of defeats the purpose of a home nurse if you don't feel comfortable and want to help them do everything. Our discussion would often come back to asking ourselves if we would ever feel comfortable leaving her alone with him? The answer was no to begin with and three weeks in it was still very clearly no. With this situation we might as well do it ourselves.

Yesterday we met with a specialized pediatric nursing agency who had found a nurse for Ellie who is just great. She has three kids of her own, loves babies and is a very competent nurse who trained to be a pediatric nurse. She has lots of experience with G-tubes, central lines and ostomies.

To make it even better she wants Ellie to be her only patient and would like to come for a full week each week.

I guess patience pays off.

Ellie really likes her, we really like her, and after just a morning we are much more comfortable with her than we had been with her previous nurse after weeks of time. And as a bonus she lives near Wayland and can come with us when we move next month.

A good day.

As a result of this, Abby is off working on the house, I am working on the fish without any distractions and Ellie is happy as can be.

And her curls are thriving in the humidity:


On a sad note, the POS Subaru finally went away for good this morning, a donation to the Kidney Foundation car program.
205,278 miles was the end of the road since neither Abby nor I was comfortable driving it to the post office let alone down the highway and it had sat as a very un-Wellesley eyesore for the past few months.

The Kidney Foundation will hopefully get some benefit from selling it.

To be honest, I thought that it would cost us money to get rid of it so a donation is just great as far as I am concerned.

An iron constitution

As Abby and I changed an early morning ostomy bag on Tuesday morning I looked up to see the most amazing thing that I have seen in a long time: At 7 AM, my dear wife was was alternating between 1) changing Ellie's ostomy bag and 2) eating a bowl of Raisin Bran.

Wipe wipe wipe, bite of cereal, wipe wipe wipe, bite of cereal.

Right on the same table was her bowl and the emesis basin.

No time to do both separately, I guess.

No kidding. A damn super hero.

Things are very busy for us these days and unfortunately keeping the world up to date on the adventures of Gut Girl often falls off the agenda by the time that we have taken care of Ellie and then, in no particular order:

• done some work on the new house (Abby's to do list is multiple pages, but we are at a point where we could move in tomorrow if we needed to)
  

• walked the best dog in the world,

• gone to work (can't forget to do that everyday, the fish in the ocean need lots of help),

• watched a Red Sox game,

• read the last Harry Potter, and
  

• started to read the new Harry Potter

With all of that going on and Ellie being very stable these days, blog posts just don't make it on to the list.

The very brief rundown is that Ellie is now over 11 kg (~24 pounds), she grew 2.5 inches between doctors appointments last month and eats everything we give her including avocado with lime and pretzel sticks.

Her ostomy is still doing its tricks and she still poops for us once a day like clockwork-usually very early in the morning. Unfortunately for short gut kids pooping isn't a big deal and it doesn't wake her up so we often find her in a pool of poop in the morning. 5 AM sponge baths are very common when the Huggies super-duper-extra-absorbent-mother-of-all-nighttime diapers won't hold. We are working on our timing and have been improving our performances to catch poops early.

Poop plus a central IV line is a very bad thing.

All of this bowel action amazes her surgeon whose intestinal plumbing handiwork actually works as designed- allowing most of the food to go out the ostomy but some to keep going down to give her colon a workout for the day that she is reattached.

We still aren't discussing a reconnection surgery yet. since her bowel was so dilated for so long we are leery of it returning to its former self if we don't give it time to get strong.

So we change a lot of ostomy bags- 2-3 a week is par for the course.

Ellie is happy as ever, running around and climbing on everything that she can find.

Just another day for us.

T-minus 29 days until we ease on down the road. Hopefully this will be our last move a for a long time.

Putting Down Roots

Yesterday we finally signed the papers to buy a nice little house in Wayland, MA.

Yes, a whole house that is about ten minutes from our rental, two minutes from Abby’s sister and even closer to the Massachusetts Turnpike which will get us to Children’s even faster than our current route. It is very cute and has a nice flat yard for Ellie to run around in with a fence to keep the wonder dog contained without using the zapper that he wears around these days.

We are very excited and very grateful for the help from friends and family that have allowed us to be in a place that we can call ours. All of a sudden episodes of This Old House aren’t quite as depressing as they were a few weeks ago.

Ellie thinks that it is just great to be on one floor and spent a hour running from room to room yesterday afternoon

We closed yesterday and will spend the next 5 weeks doing some work on it. Some minor things and some that are a bit more complicated.

We know that we went to the well twice last year to get out of Connecticut but we could use some help again if everyone’s backs are healthy. We are planning on working each of the weekends before moving on Saturday, the 25^th of August.

If you are free an added bonus this year is that Ellie will be on site supervising and when you have had enough of working you can play with her and chase her around the yard.

Now I just need to convince Abby to stay away from the L.A. Laker purple walls that she surprised me with in CT. I guess that what you get when I go fishing instead of closing on a house.

Today I'm Taking them to the Beach...

We finally got Ellie to the beach this weekend. After 15 months of various issues and other reasons to not go to see the ocean, we finally had a reason to go and put her toes in the ocean. It is funny to me that it has taken so long to do this since Abby and I are ocean people but I think that there was a good dose of fear that kept us away.

Well we got brave this weekend and wrapped her sensitive tubes in medical plastic wrap and her sensitive lily white omegaven skin in a fancy SPF 50 space suit and marched her to a family get together/wedding shower at the beach.

Ellie wasn't so sure of the sand:

mmm, crunchy and salty...

Or the cold, 60 degree water at her toes:

Dad, I'm really not sure about this.....

Maybe if I only use one foot like the Karate Kid it won't be so bad...

Wait, yes it is that bad. Pick me up!

Grampa, you are still scary, but wanna dig a hole?

We had fun, spent all of 30 minutes on the beach kept her almost completely clean and dry and then watched Ellie run ragged through the wedding shower for the rest of the day.

The most important thing was that we finally got to the ocean together and got our toes in the sand:

And got a fresh new screen saver of my girls in one of my favorite places-

She Drinks!

When Ellie first came home from the hospital we were giving her most of her formula by bottle and just putting her on the milk pump at night. But, then as her bowels started to shrink back to normal diameter they started to work much better. The bottles started going through her very quickly. We soon realized that if we gave her an ounce we would see that ounce again very quickly out of her ostomy.
The solution to this problem was to slow the delivery time down, and that meant more time on the milk pump. She is now on the pump 24 hours a day. When we started her on the pump we stopped giving her bottles and then sadly, she lost her taste for her formula. (I don't blame her it tastes horrible) Try as we might we have never been able to get her to take a bottle of formula since. Then we tried unflavored Pedialyte. We still can't get her to take a bottle, but after trying 4 different types of sippy cups over 4 months and using numerous techniques , we had success! I think this victory was due to a combination of a very hot day and very cold Pedialyte. It may not seem like much, but now everyday she drinks around an ounce of Pedialyte, on top of the formula that she gets by pump.

I know only an ounce, but for us that is a big deal. Think about it... She eats two meals a day by mouth, but she never drank. Now we are taking baby steps to get her drinking more and more. Drinking will be an essential skill that will be needed to get her off of TPN and eventually remove her G-tube. But that is all very far ahead in the future, for now we will be happy with our girl that is very happy with her sippy cup.

So a guy walks into a pharmacy

So a guy walks into a drugstore grabs a box of suppositories, a tube of ‘personal lubricant’, a box of rubber gloves, and a diet Pepsi.

Yes, this could be the lead in to any number of good jokes but in fact, it was my shopping list this afternoon today at the pharmacy here in Maine. the drug store where my elementary school teacher probably shops, my friends parents and a whole host of folks that I grew up with.

Yes, I did have a story in case I ran into anyone who was interested in looking at my basket and thinking about my plans for a leisurely Sunday afternoon: It’s for my infant daughter.

Oh, wait. That is worse than what someone might think on their own.

But the truth is that it was for Ellie.

She has become a champion eater in the last few weeks and will eat baby food mixed with powdered rice cereal in a good quantity a couple of times a day. Rice cereal is magic stuff that slows food down as it goes through her bowel and will likely allow her to absorb more nutrients as the express train goes through her short section of small bowel.

We may have given her too much of a good thing over the past few days, though and she went more than 24 hours today without giving us a poop in her diaper. Coupled with this is the fact that her ostomy output has gone up during this time and Abby and I guessed that we may have a bit of a, um, ‘log jam’ in her colon that is stopping food from going down the pipe to her pooper and forcing it out the ostomy.

Losing food out the ostomy is a bad thing in excess and we wanted the girl to poop for us.

Enter the glycerin suppositories, the K-Y, and the gloves.

We have had good luck with this in the past to get things moving again. Simply lube up the sliver on the tip of your finger and pop it in. We learned this while Ellie was at Children’s and also learned the advanced technique to insert the glycerin into her bottom in the hospital and avoid a glycerin projectile (hold the cheeks together for 30 seconds).

Abby did the honors tonight and other than Ellie’s look of pure surprise we had good luck and Ellie gave us a nice poop just before she passed out tonight.

Hopefully that will open the flood gates and get the train rolling to the final station again without losing it at the ostomy.

A busy week

We spent July 4^th doing plenty of nothing and capped off our day by finding a petting zoo for Ellie to explore in Natick. We are still unsure about Ellie and cleanliness of animals but decided to give it a shot and watch her very carefully.

I can just imagine the conversation:

‘Um, Dr. Jennings? Yeah…… Ellie has goat flu…..'

‘Really? Hmmmm.. How did that happen.’

Yeah, that is the conversation we want to avoid.

So with a huge wad of antimicrobial clean wipes on hand we made the trip and introduced Gut Girl to some livestock.

From her initial reactions, I think that she thought that they were very cool:

She particularly liked the goat that was very friendly:

AFter playing very hard and walking all over the zoo, Ellie didn’t make it to see any fireworks and didn’t even stir when the booms from the Esplanade made it to Wellesley. Abby spent last year’s 4^th at Children’s watching the Boston fireworks in the reflection of another building across the way from Children’s. This year we watched the action from our couch with a bowl of ice cream, really glad that we weren’t in Boston- on the rainy Esplanade or in the Longwood B&B.

Earlier in the week Abby surprised me this week by suggesting that we add yet another trip to our summer schedule this week and come to Maine to see my family this weekend. It will be the last trip for a while since we have a bunch of things scheduled for July and August in Massachusetts and probably won’t get up here again until Labor Day. Naturally I jumped at the chance to come up, see my family, and go for a trip on the boat with Gus and Abby:

We packed up a trunkful of Ellie gear Friday afternoon and we here for dinner. Ellie is becoming quite a road warrior and sleeps just as well here as she does in any other pack and play.

This morning started very early for me- 4:15 when I got up, checked on Ellie, changed emptied an ostomy bag and met my brother in his driveway to go fishing. We picked up my Dad down the street and were on the water by 5. The last time that the three of us got on the water together was October of 2005 and it was great to get out and catch some fish.

In other times of my life I would have gone crazy going this long between fishing trips, but with the events of the last 15 months, it really hasn’t seemed like that long. That doesn’t mean that grabbing the lip of the first striped bass of the morning was especially satisfying, but having those same fingers in an ostomy bag to start off a day just seems to put things in perspective.

The dad’s special stealth fishing trip was back on shore by 7 and we were home in time to meet our respective kids as they woke up, almost as if we had carved time out of thin air. It was sleep time that we all missed later in the day but definitely worth the trip.

One of the benefits of being near Boston instead of Connecticut is that it is great to be only two hours from my family. Connecticut was a solid four hours and I don’t think that we would have been here as much this summer if we were making the longer trip up. This gives everyone a lot of time with Ellie, even though she still isn’t 100% sure about what to make of her grandfather. She is appreciating the songs though.

Abby and I left Ellie this afternoon with her aunts and grandmother and went for a boat ride with Gus:

Since we had the possibility of being delayed on the boat (sunk, sinking, aground, run out of gas, run out of tide, etc) my sister the lawyer suggested that I write out a letter giving them permission have Ellie treated in our absence. Every time I have to do something official like this it reminds me of croaking to the receptionist at Yale for the first time ‘My name is Gib Brogan, I think you have my infant daughter Eleanor……’ Better safe than sorry, I guess. Fortunately I know Ellie's paient ID number by heart and didn't have to look any thing up.

Tonight Ellie entertained her cousins and grandmother: She also showed off her budding love of eating by sitting down and eating a whole lot of food with us at dinner.

We will be up here until at least Sunday but may go down very early Monday morning to avoid the traffic on the Maine and New Hampshire Turnpikes. We forgot a tiny but vital piece of Ellie’s IV set up and need to call the IV company in the morning to see if we can pick one up from their Maine office. If we can get a ‘vented spike’ we will likely stay through Monday. Tonight is on her night off of TPN and she doesn’t know the difference.

We always forget something, it is just a question of what we forget and whether we can make do without it.If we can't get a spike we will head home and get one from the bin in the closet where there are probably 10.

We had a very good week. I think Ellie liked it as well:

Short bowel free trade

One of the interesting things that we learned from the short bowel folks at the Oley conference is that many of the medical supplies that we get for Ellie by prescription through insurance are also available on the internet and even Ebay.

For example a fresh g-tube, which costs somewhere around $1400 for Blue Cross to buy can be had on Ebay for around $30.

Likewise, the cases of special Elecare formula that Ellie is blowing through these days at the rate of a can every two days, go for around $300 for six cans. If you use Ebay, around $20 will get you a can.

This all drives home the fact that we are extremely fortunate that my insurance is so good. Paying for Ellie's supplies is an abstract thing for us since we make a phone call, order what we need (including a $1400 g-tube each month to replace the worn out one) and magically it appears on our doorstep the next morning. Today for example, three boxes arrived with 16 cans of Elecare, a g-tube, and some other accessories. no bill. Nothing but a packing slip.

Ahhh. Blue Cross and Medicaid. Two of my favorite things.

The thought of having to budget for these things and possibly change how we treat her based on cost is a scary thought for me but I know that it is a reality for a lot of families out there.

I am certain that we won't be going the Ebay route if we find ourselves with a surplus of anything if Ellie move son to another formula or another g-tube size. The Oley Foundation has a central clearinghouse for extra gear, formula and other things that can be exchanged among the SBS community. 'Free' to me means free to the next person who might need it. Turning a profit on someone else's need just doesn't seem right to me.

If you know someone that is new to the short bowel world, it is definitely worth looking up oley.org to learn about their equipment exchange. Short Bowel sucks enough without being expensive, too.

Ba, Ba, Beth

Ellie is recovering from an acute case of aunt withdrawal today.

My sister Beth, volunteered to come along to Cape Cod with us this weekend to watch Ellie and let Abby and I fully attend the Oley conference without having to swap out sessions for childcare.

This was a big step for us since we haven't left her for more than an hour or two at time since we came home from Children's and those times it was with a room full of people who could tag team her care while we were out.

This weekend Beth opened up a new world for us. Beth is exceptionally good with little kids and Ellie absolutely loved every minute of her time with Beth. She loved it so much, in fact, that most nights Ellie wanted to stay up and play instead of going to bed at a reasonable hour, choosing instead to sing songs in her pack n' play and dance while we tried to put her down. It was as if Beth had been around forever and Ellie never saw her as anything different or strange.

Even though ostomies and short gut poops are a bit on the unsavory side of things, Beth picked up the skills and took off with Ellie each day that we were on the Cape. Believe it or not, Abby and I checked out each morning to go to the conference around 9 and didn't check back in until noon. We would meet at lunch to parade Gut Girl around and then pass Ellie over for the afternoon shift which went through dinner on Thursday.

When we got back, Ellie was laughing and playing, her ostomy was in good shape and all of her records were in order.

Beth never flinched and was amazing throughout the trip, doing everything that we needed her to do. She even braved the world of TPN and watched Ellie on Friday night so Abby and I could go out for our 5th anniversary dinner. Watching a baby with a G-tube is easy compared to the pumps of TPN.

I don't think that Beth understands how nice it was to have someone that Ellie loves so much and that we trust to take care of Ellie on board for this trip. I hope that she understands that this was the test run for the future and that we are thinking about the next time that we can hit her up for some expert nannying.

Oley

Well, we are back from the Oley conference. It was great. We knew three other families that were there from Children's hospital. The first day we spent the morning in a large group meeting talking about the future medical advances in the area of short gut and for people on TPN. Then in the afternoon Gib and I split up and he went to a talk about Central line care and TPN and I went to one about pre and probiotics. (prebiotics=food for your good bacteria that you already have in your gut. probiotics=adding more good bacteria to your gut)

Gib's sister Beth came along to help with Ellie. Good thing. This was our alternative
Then we both went to a meeting about pediatric issues. It was great, they talked about things we had not really thought of yet. Like, potty training a short gut kid, Tooth and bone development, and puberty. It was eye opening for us, but also good because there were so many parents there and their short gut kids looked great and were running around looking like normal kids. They were just a bit skinnier and had a few tubes.

The only thing we did notice is that most of the kids that were there had lost their intestines when they were a bit older, not many kids were there that had lost some of their intestines at birth. But then we realized, we (the Omegaven families) are the new group at Oley. Now more and more infants are surviving into childhood because of Omegaven. So many of the meetings were very helpful, but they were all really directed at adults and older children. So now Oley has to recognise this new group that will only get bigger and bigger.

The second day the morning was a large meeting with every one. The guest speakers were Dr. Puder (Mark) and Dr. Gura (Kathy). They were there to talk about Omegaven. I think the message got through. When you say that Children's Hospital Boston used to lose 6-7 kids a year to TPN induced liver damage and now they the lose NONE. That Toronto hospital used to have a near 90-95% mortality rate of children with TPN induced liver damage. Now they have 0%. It is hard to ignore.

After that meeting we all went out for a picnic with four other short gut families, Mark, Kathy, and Denise (the Uber nurse).
Sorry that Gib is blocking out Mark, but he is there. This is from the left Charles and dad, Maggie and mom, Luke and mom, Ellie and dad, Caleb and dad and Kathy and Mark.
This is Gib and Ellie with Dr. Kathy Gura(discovered Omegaven) and Dr. Mark Puder(started and is currently running the Omegaven project). These are the people that are responsible for our happy, healthy baby girl. The only person missing is Dr. Jennings. This is Ellie and Luke on the swings together. It was Ellie's first time on a swing.
Ellie and Maggie playing peek-a-boo.
This is Luke and his mom with Charlie's mom and Charlie playing with Gib. Charlie is the first little boy that was put on Omegaven. They were willing to try anything to save his life. It had only been tested on mice before Charlie, and now he is four years old and his liver is doing better than mine.

If you look back at all the pictures in this post, you will notice that most of these cute kids have back packs on. That is what the whole conference was like. Halfway through the first meeting I realized that many of the adults had little back packs or fanny packs on. Many of the people there were on TPN almost all day and some were on G-tube feeds almost all day.

We had a great time an learned a ton. The biggest take home message we got, is that we are incredibly lucky to be at Children's Hospital Boston. Next week we are making an appointment to talk to Dr. Jennings about a bone density scan, leaky g-tubes, and starting pre and probiotics. Ellie passed out after the picnic. We were in the middle of emptying her ostomy when she fell asleep. Like her shirt?

Secret Club

This is a club that we didn't even know that we joined. It just seemed like we would be out shopping with Ellie one day, and some one would come up to us and say ,"Hey, nice pump." And just like that we were in. With just that one statement we would feel like we knew these people and they felt like they knew us. That we knew something that everyone else around us didn't, and that no one around us could understand unless they had lived thought what we had.


These people would be just about anywhere. From the lady who fit Ellie for her first pair of real shoes, a sales woman in Macy's, to a woman in a book store who chased us down to get a better look at Ellie's backpack. The woman in the book store caught up with us and first thing she did was whip out her own pump. I guess that was like our version of a secret hand shake. We stood in that book store and talked about life with tubes and all that comes with it. It was great.
So tomorrow we leave for the Cape where we are going to attend the national conference for the Oley foundation. The Oley foundation is for all people that live with tubes, IV or G-tube. Patients, parents, doctors, nurses and specialists from all over the country are coming to the conference. There are a bunch of lectures and then in the afternoons there are break out sessions when we get into smaller groups and have more personal discussions, with specialists and parents/patients, about the issues that concern us.

We are very excited for this conference not only because many other Omegaven families are going, or because Dr. Puder will be presenting, but because of all the other kids/adults that will be there with tubes. For three days Ellie will be normal. I don't even know if she will notice, but I really want Ellie to see all those other people with tubes. This meeting will be like a huge meeting of our secret club.

The subjects that they are covering are really interesting to us and we hope to gain some very valuable knowledge about things that we can try with Ellie. Gib and I have to admit that we do find that we are chickens when it comes to trying new things. Especially when she is doing well. But, we need to expand our knowledge because you never know, she could be doing better.

We will try to post while on the trip. If you are a short gut parent/patient and you have some questions you would like us to ask about at the conference please email them to me (Abby) and we will do the best we can. Gib's sister Beth is coming along to help out with Ellie so that we can attend as many meetings as possible.

On a side note, as we were packing today I had a bit of fun with Ellie's hair. It is getting very long and I just couldn't help myself. Check it out.Yup, Pigtails. After so many months of cute but bald Ellie, I was so happy to be finally be able to play with her hair. They didn't last long, she figured out how to remove them very quickly. But it was fun. She was in rare form tonight, I also got some video.

A week in Maine

We spent last week in Maine. I spent the days fighting to protect the fish populations in the Gulf of Maine and Ellie and Abby spent their days relaxing and visiting with family. Below is a picture of Ellie getting a feeling of what it is like to be on something that floats.

We didn't get to go on any boat rides this trip but we will next time. Notice her new shoes. They are Croc Mary Janes. This is the only picture that we have of the trip that doesn't include her cousins.

She had a great time playing with her cousins. Unfortunately the pictures aren't here. My brother John, her uncle, is paranoid about having his kids pictures on the internet.

It is funny, the kids didn't really treat Ellie any differently, it was the adults who cringed when any of the kids got close to Ellie. We just had to keep reminding them (the adults) that she isn't made of glass. She is tough, and likes to play, if she doesn't like something then she will let us know. The important thing to remember is that she doesn't realize that she is different yet, but if we treat her differently then she will start to pick up on it.

We had a blast in Maine, the only negative was that we left the charger for her feeding pump up there. We didn't realize it until this morning when the pump died. Thank goodness there is a good net work of short gut families here. We were able to borrow a charger from another family to get Ellie's pump working until ours comes back down from Maine. Oops.

Sorry we have neglected you.

We have been in Maine for the past week. I will post pictures from that trip soon but here are some pictures from the week before we left. Here is Ellie playing "fetch" with her boy.
After watching them play together I almost went out and bought Gus a huge chunk of steak for being such a good dog. But instead I took him for a swim in the pond. Here are some other shots of us in the yard.Ellie is doing well. She is now at 26 cc an hour with a total intake of milk around 625mls a day, (over 20 onces). We give her solid food once a day, usually before bed. She is over 10 kilos now and getting taller everyday. She also can say, "hi, ok, good dog Gus, all done, thank you, ball, ma ma, da da, Kate, more, yes and no." She usually talks when she wants to and usually resorts to pointing and grunting. No changes with her TPN but she seems to bemuch better managing handling her hydration .

To bathe or not to bathe

This is a question that we used to debate regularly. It is a personal decision that all short gut parents are faced with. The worst part is, there is no right answer.

When we prepared for discharge from Children's we were trained by a nurse we now call Uber nurse. She gave us an excellent training on how to care for Ellie's Central line at home. To refresh your memory a Central Venous Line (CVL) is a very small white catheter that enters Ellie's body via a vein in her chest, it snakes up to her neck and then goes under her sternum and down straight to her heart. This is how the TPN and Omegaven gets into her blood stream every night. The Uber nurse taught us how to care for the line, the entry site, the dressing that keeps this area dry and sterile, the cap that connects her IV line to the catheter and everything and anything else that might have to do with or could happen to the CVL.
The Uber Nurse incredibly knowledgeable, and has an amazing sterile technique. After a few trainings with her we started to notice when other nurses were not being as sterile as they could be, this is when we took over all of Ellie's CVL care. If we have any questions about the line we call the Uber Nurse. If we are at the hospital for clinic and they want to access Ellie's line, the Uber Nurse is the only one that we will allow to touch it.

The reason we are so careful is that if bacteria gets into the line Ellie will get the dreaded LINE INFECTION. Because the line is in her heart, that means her blood gets infected and that is never good. Ellie has had two of these in her life. She (knock on wood now) has not had one for 10 months. So whatever the Uber Nurse taught us, is working.

Now as for our dilemma. During our CVL training the Uber Nurse stressed again and again how important it is to keep the dressing and the whole area dry. When we were inpatients a few mornings a week Ellie would get a sponge bath and we would wash her hair while being very careful to not let the dressing get wet. When we got discharged we continued bathing Ellie this way. This means that Ellie has never had a real bath. She has never been able to play in the water. After we where home for a while I started talking to other short gut parents and discovered that we were in the minority. Most short gut parents bathe their kids just like normal kids. They put a water proof dressing over the CVL dressing and then change the whole dressing after the bath. Some parents let their kids swim, go to the beach all things that we thought we would never be able to do. So when we were in for clinic the last time we went and found the Uber Nurse and picked her brain. Where we being overly protective/hydrophobic?

Her response was, "Before you decide to risk the CVL you have to consider if the child is going to have a CVL for life, how old the child is and why you want to take them to the beach, swimming pool or give them a real bath. Ellie is so young that she doesn't know what the beach, swimming pool or bath tub is, so she will not miss them. Really you would just be letting her swim in the ocean or pool to make you feel better not her. If she was older or was going to be on TPN for life it would be a different story. Right now, don't risk it, continue what you are doing. It's obviously working."
At first I was sad, no Ellie playing in the water. But, I know she will have her time in the water, the girl is going to have gills anyway from all the fish oil. Water is just in her future, not in her present. We don't know how long Ellie will be on TPN, find me in another two years and I may be tossing my CVL child into a swimming pool. But, for now we will continue putting Raffi's "Banana Phone" in the CD player and bathing Ellie on water proof chucks in the middle of her bedroom floor.The best part of giving Ellie a bath is that I get my fix of clean baby smell. I think I could become a very rich woman if I could find a way to bottle that scent. When she sits on my lap to read her bedtime story, I can't stop my self from sniffing her hair the whole time. I have a problem, and I admit it. Oh, well.

Good Mileage

We did it! TEAM ELLIE walked 2 miles to support Children's Hospital Boston this morning and raised grand total of $3,151.72. We made it over half way to our Goal.
The team of all stars were Gib and I , Kate, Beth ,Kelly, Alex, Sophie and the Rock Star herself, Ellie.
Yes, and Sophie did make it off the couch and joined the team for the walk. Love ya Soph!
It was a good time with music, free food, and good festivities. There were many groups there walking for staff and for patients, the last number I heard was that they were expecting around 5,000 people and it looked like they were all there.
As we crossed the finish line they asked Kelly who she was and who she was walking for, TEAM ELLIE was her reply. It was odd to have the announcer call us out as we finished but also great to hear Ellie's name. Here she is with her medal she got for finishing.
Today made us excited for next year. We hope to have a bigger team, with team shirts and to raise money once again for a great cause. Thank you to all that supported the team on the walk. We raised a great amount of money and got donations from all over the country, including Canada! The donations that were really great to see were those from other short gut families around the country. Thank you.
Thank you also to the great group of walkers that showed up to walk with Ellie and who did good work to raise money. We all had a blast and hope to see you all again next year. Thank you, Thank you Thank you!
Ellie had a great time, she loved all the people and all the other kids. She even found a dog to befriend before the walk. But she didn't even make it back to the car before she decided she needed a nap.


Thanks again to everyone for you love and support.