Trick or Treat

Trick or treating in the hospital is a bigger deal than I had expected. Everyone gets out and makes some sort of a visit. In wheelchairs, strollers or somehwere in between there was a true parade of costumed kids going through the hospital this morning.

Ellie started out her morning as a loster with her mom the chef. They told us that if we carried her around in a pot that they would have to call child services, but we thought about it.


She was joined by her monkey friend Christian and his Mom:
After a little while, the little lobster started to get cooked and we switched costumes.

A fisherman and the catch of the day:


Catch of the day, fully cooked:

Happy Halloween

Today is halloween.

You might think that this isn't a big deal in the hospital that is filled with kids that are sick.

You would be wrong.

This a place filled with kids, remember, and apparently halloween is the be-all and end-all of cool holidays that don't involved a big elf in a red suit. The nurses, doctors and everyone in between get dressed up for it, too.

So off we go to trick or treat in the hospital with all of the other kids. As long as a kid can travel and be near other kids, they get to go trick or treating. We have planned Ellie's day in advance so her time off the pumps is during trick or treat time (10 to noon) and we will take off to explore the hospital and show off Ellie's costume(s) to the nurses around the many floors, nurse's stations and departments. I think that there are something like 20 stops if we want.

Big fun. With candy.

Here is costume number one, our catch of the day. Surprisingly she is a little too long for this costume ,which is for 0-9 months, so there is another when she gets antsy.

Imagine that, a baby with short gut that is bigger than she should be. Love that fish oil.

Ellie's growth and her bowel function are been perfectly timed for her to wear the political onesie that friend gave to us.

In case you can't read it, her onesie says 'Bush and my diaper are both full of doodie.

Some of the nurses have warned us that a doctor or two might balk at the politics, but after the threats that we got a at Yale to not treat our Red Sox Binky sucking baby, the politics are easy.

It has never been so true.

Just hanging

We are still waiting for Ellie's kidney function to come back up to speed. Right now her creatinin has come back down to 0.3 from a high of 1.0 but we would like it to come down a little more and stay there fopr a while instead of the fluctiations that we have seen in the last two weeks. The signs are showing that things are moving in the right direction but we're not quite there yet.

As soon as things settle down, it looks like a nother round of surgery is in the works to open tings up and keep food from pooling in her bowels and acting like a huge petri dish for nasty bugs.

Since she needed to come off of antibiotics two weeks agao, her belly bugs have been growing steadily and need to get flushed out.

Hopefully a stoma/ostomy surgery will open things up and control,the bugs before they can cross over, or 'translocate' to her blood stream where they cause more serious problems.

Still we are very lucky to have a little girl that is very happy and very fun to be with. She charms us every day and is moving right along towards being a happy little girl that laughs and sings. She sits for long tikes now and it thinking about taking steps when she stands, even though Abby and I are not very excited about chasing a walking baby with an IV pole. 

Six Months at Children's

Six months ago today we picked up from Yale-New Haven and moved our operation to Boston.

In that time, we have gone from this:























To this:

Not a bad change if you don't mind the scenery around our girl.

She is worth every change that we have made in the time since we got here and reminds us of that fact lots of times each day with a good giggle or laugh.

Move to Boston? yup.

Sell the house? Yup.

Quit your job? Ask Abby. I'm sure she'll tell you yes.

Spend all of your time either in the hospital, going to or from the hospital or recvering from a night in the hospital? Yup.

She's worth it all.

Besides, what else would you do in this situation?

Duh.

Show off time.

Hello all Ellie fans here is a picture and some video of Ellie showing off for the nurses right before bed.


She is doing great and her blood work is looking like everything is slowly getting back to normal. We were told it may take weeks so we are just spending our time playing with our little girl and just waiting. It's not a bad way to pass to the time if you ask me.

We are also still giving her bottles everyday which she loves, they are still very small amounts but baby steps are ok.

Here are some videos for you all also. Taken right before bed while she was flirting with the nurses.

www.youtube.com/watch?v=SUWQ97JRflk

www.youtube.com/watch?v=qgxf70lm5Fw

www.youtube.com/watch?v=lxcyldUTMoA

Enjoy!
Oh, and this is Gib and Ellie playing in bed together. She sure is a charmer, she can get what ever she wants, including her very long dad to fit into a very short bed.

An early morning

Ellie's new favorite trick is to sit up in her crib and hold on to the railing to watch the world go by and play with the toys that are attacjed to the rail.

One hand on the toy, one hand on the rail. Drop the toy. USe the other hand to pick it up. Try switching hands and fall over. Repeat.

Fortunately these pictures, which were taken at 7:20 in the AM matched up nicely with the nurses shift change so she had double the number of folkscoming to visit. Her squeals of joy were apparently loud enought hat they heard them down the all near the elevators.



She had an upper GI dye study done today. No great revelations. Her bowel is still big and holding onto things for too long which surprised the radiologist. Not us, though.

When we get her kidneys working at full speed, we will think about the surgery that we had scheduled and cancelled for today.

All systems..... Hold

Throw away the calendar should be a rule of having an short gut baby. (correction: baby with short gut)

Ellie's medical issues took an interesting turn this week. I think that she was bored with her old group of specialists and wanted to diversify her audience to include an entire other department, in this case Nephrology, or the kidney folks.

The short version goes something like this-

Ellie has been on a rotating treatment of two antibiotics and one anti yeast medicine to knock down the amount of bugs that she has growing in her gut. Two weeks of an antibiotic called Gentamycin, two weeks of Vancomycin, and then a week of amphi-terrible to kill the yeast. Rinse repeat, avoid a carpet of bugs in her small bowel and lower the risk of having one of those bugs jump across her gut to her blood stream where it could get to her central IV line.

Unfortunately the gentomycin crossed the line and entered her blood stream a few weeks ago and has been lingering in her blood, not a good thing since 'Gent' can cause injure the kidney and has nasty side effects in some patients if it is in the blood like deafness and hearing loss.

To make this more interesting is the fact that the level of creatinine in her blood has risen in the past week or so, indicating that her kidney function is not as good as it should be, which could be caused by the drugs affecting her kidneys or by something as simple as a low dose of dehydration.

Yes, dehydration happens even with all of the IV fluids that Ellie gets. She loses some fluid through her G-tube every day that is replaced by a simple formula that can be ineffective for some kids.

So we got to meet the very nice nephrologist (Oh, my old man's a pediatric nephrologist....)this week and the nephrology team has beenpaying daily visits to Ellie to check on her progress and make sure that things are moving in the right direction.

It looks like we are moving along but until things are sorted out, we are on hold.

Again, in the meantime she is happy as can be, has learned to wave to the nurses and doctors as they leave and is quite happy sitting up and watching the world in addition to standing and dancing.

No surgery tomorrow, but it looks like it could be on the horizon as soon as we get her kidneys sorted out. If we can't cycle her through the three drugs, we need to keep things moving through her small bowel faster and that most likely means an ostomy or stoma to open up the works.

People I Want to Shake

Abby here. I can't tell you how many parents I have met that have said that they were at another hospital with their child and told that their child was not going to make it and that they should prepare for the “final days”. These parents took matters into their own hands, got copies of their child's records and called Children's Hospital here in Boston. These parents that I have met (around 8 so far) were not all at small po-dunk hospitals. Some came from Chicago, LA, and Miami. These children are now doing fine and are home or getting ready to go home.

It makes me so angry that some doctors will actually tell parents that their child is going to die rather than admit that they have reached the limit of their ability and it is time for the child to go somewhere else. I have heard horror stories in the time that I have been here of doctors bumbling their way through a treatment, getting all of their information from outdated text books. Some times the doctors even do more harm than good.

I know that I'm not perfect and I can't expect anyone else to be perfect. Yet, if you are really going to shatter a person's world with the worst news possible, make sure you are right.

So everyone that reads this if you are dealing with a sick child or know some one who is, follow your gut. If you feel like your child is not getting the care they need or if you don't believe the doom and gloom story that you are being told, start researching. Look on line, call people, look on Yahoo groups for other families and do what ever it takes to get the best care possible for your child. The right hospital and doctor do make a big difference.

More often than not I have found that what I feel in my gut is the right way to go. As parents we know these children better than anyone else and if you feel in your gut that something isn't right, then most probably are your right.

A little bit of progress

This week we have successfully advanced Ellie's feeds up to a level close to her largest rate ever and today she went up to 12 ml per hour. The experts tell us that her magic number is around 30 so she is around 40 percent of her goal right now. A big bit of progress.

Now the trick is to keep her up there and hope that she doesn't react strongly to this level of food.

So far the signs are good that she is okay- she is poopoing well and reglarly and seems to be comfortable with her foods.

Gotta love the peristalsis.

On the downside, the amount of liquid that is in her G-tube catch (where her stomach juices end up) has increased in the last week to levels that make us curious about what the cause is. It could be food backing up from her bowel or it could be more stomach secretions in reaction to the nasty anti yeast drug that she is on, called Amphiteracin, or 'amphiterrible' as another mother has called it.

We hope that it is a reaction to the drug and think that this is the case since the big increases in fluids happened a day after the amphiterribke started. Seems like cause and effect to me. She finishes with the amphi later this week and we hope that her residual fluid levels come back down after the nasty drug is done.

Still no final word on her surgery which is scheduled for Friday. It is still in pencil and can be changed. We'll talk to the doctors this week and come up with a revised plan.

Standing and Dancing

http://www.youtube.com/watch?v=HwoXSr8TYYE

Books, not just good for reading.

Ellie had a great day today other than a brief bit of barfing after getting a new drug this afternoon.

We spent the evening making faces at the doctors and nurses and checked in with the pharmacist who is in chage of the Omegaven program to show her how well Ellie is doing these days. The pharmacist was on the floor to get baby number 29 on Omegaven. They flew from England today to meet the folks here and get their baby with short gut on the fish squeezings.

To think that we drove two hours and didn't know what was here until we got here........

ellie is sitting through an entire book these days and loves the pictures. She also loves how the books feel and taste, too.

Dad Advice

I usually get to spend two, three or sometimes four nights a week in the hospital with Ellie each week. Most fathers don’t have the good fortune that I have to be able to spend as much time in the hospital as I do.

No matter how much time a dad spends in the hospital, I think that it will always be a foreign land for Dads in here. After 6 PM, there just aren’t a lot of men on the floor. Sure there are some doctors but most of the folks around after bed time are women.

As such, there are some things to learn about spending so much time in the land of mothers, aunts, and sisters.

1) They are better at this than you are. First and foremost, recognize that there are tons of women around who know a ton about babies and like to take care of them. That’s why they work here and even at 3 AM they are working. They get to go home to sleep after they are done. Don't be proud. It’s okay to admit that you don’t know something or ask for help. In fact, I think that the nurses get a kick out of helping helpless dads.

You also don’t need to get up every time the nurse comes in to the room. In fact, considering everything, it is probably best if you just stay lying down.

Which brings me to point of advice number two:

2) Dress Code. When it is time to sleep in the hospital, dress appropriately and ‘mind the gap’. My best piece of clothing these last few months has been my light weight sweatpants that I can sleep in, walk down the hall at 2 AM to find the nurse and then go to get breakfast in. No PJ’s and definitely no boxer shorts as PJ’s. You just can’t get up and do some work with your baby confidently if you have to think about things ‘popping out’.

I live in fear of this happening. How could I look a nurse in the eye ever again after popping out?

Reminds me of the funniest thing ever said on Friends, ‘Hey buddy, this is a family place. Put the mouse back in the house.’

3) Don’t ogle the nurses. They are there to get your baby healthy. Doing 'regular stuff' guys do is really bad ju-ju. Some basic facts I have learned: 1) nurses are, generally, attractive young women. 2) They work really hard and often need to lean over you and your baby to take care of them. 3) The scrubs that they wear are often not the most concealing garments in the world.

This does not make it okay to look.

Repeat. Does not make it okay in any way.

Following the ‘Seinfeld rules’ of ‘looking at the sun’ is bad. Look somewhere else. Look at your baby. Look out the window. Think kind thoughts about your baby.

Karma will get you. Nobody likes a lecher daddy, and you need to see these folks for a long time to come. (See advice #2 above)

But by the same note, don’t be shy with the nurses. At 3 AM it is easier to have talked to the nurse earlier in the night than to shock the poor woman when you stand up at 6’4” and she is expecting your 5’4” wife. (See blog post from May 19. http://eleanorbrogan.blogspot.com/2006/05/new-room.html )

I really hope I don’t talk in my sleep here like I do at home.

I kind of think that that is the kind of thing that makes legendary stories in places like this……

Children's Hospital on PBS

Last night as I watched TV at home and stayed up too late I found a PBS program about Children's Hospitals. What bit I watched (before it would make me call Abby at 2 AM to cry) was really good. It captured a lot of the very subtle elements of what it is like to have a kid who is sick and in the hospital and what it takes to shift your baseline and move into the hospital. I found myself talking to the screen and when they profiled a parent and asked questions that were too good, I had turn it off.

I may give it another shot sometime when Abby is around. We had to bail on and episode of ER the other day when they had a sick baby though:

"Sick baby!, Sick Baby! Click! click!"

Turns out that the baby on ER had NEC, Necrotizing Enterocolitis, which makes the baby's bowel dissolve, a prime cause of SBS in infants. Somehow it recovered and went home in a month. Sure wish we lived in NBC-land sometimes...

To go along with the 6 part documentary, PBS has also created a website for parents of sick kids to go along with this which has some good information, even if it is a bit dry and really full of the cancer patients who make Abby and I sigh in relief each day that Ellie only has SBS.

It made me really glad that we at Children's in Boston and not somewhere else. Little things about how Chicago Children's works made me relaize that we are in a truly great place, here and sometimes we forget how lucky we are to be here in our little bit of the 8th floor.

One interesting thing that I read was a quote from a researcher who said, "I haven't seen a 'Eureka!' yet, but I've seen a lot of good steps in the right direction."

I think that right now these kids on Omegaven might just make Archimedes start singing in his bath tub.

How, exactly, do you nominate someone for a Nobel Prize?

I think that saving babies' lives is right up there in the benefit to mankind category. Our pale baby (who should be very sick and green by now) would be a good exhibit in the application.

Slow days

Today makes six months.


Not much has changed in the past few days. Ellie is still progressing on her feeds and is up to 10 ml each hour through her J-tube. She seems to be doing well with these and the doctors are still impressed with her weight gain which indicates that she is actually getting some nutrition from her food. We are going to keep advancing her feeds very slowly and see where that takes us. Nobody knows what she can do so we'll see, just not in any hurry. They tell us that the magic number would be close to 30 but none of us think that she she can get there quite yet.

In the meantime we are spending a lot of time with her and learning new tricks like singing, screaming and watching the parade of people go by the door.

We are also going on field trips and seeing the sites.

And taking lots of naps.

Cognitive Function

I spoke with Dr. Puder, the fish oil guru, last night as he made his evening round of visits to check on us. Everything is great with Ellie and her numbers keep on doing the great things that we had hoped they would.

Interestingly, he asked me whether Ellie had had her cognitive function tested yet. I told him no and asked why. He told me that since her brain is made out of a lot of oils and the omega-3 oils in Omegaven are all good oils, that they have noticed the Omegaven kids having higher levels of brain function than other kids who don't have huge levels of Omega-3 oils.

Well, look at the big brain on Ellie!.

I thought she was smart! This might just prove it.

The super powers continue to develop.... we'll see about testing to confirm it.

The glass is filling up

Abby here. Just and update, Ellie is now 14 pounds 2 ounces is getting 9 mls an hour. That works out to about 2 cups of milk mixed with a bit of formula each day. Nothing close to where she should be but, hey babysteps are still steps. She seems to be doing well with the slow increases in food and her infection should be just about gone.

Tomorrow I can get a stool sample to see how we are doing. Yes, I have to collect a stool sample from my daughter, odd after the years of collecting them so many different animals. Who would have known that all just practice for Ellie. We need to have 3 negative samples before she is cleared for C-Dif. She is also getting her 6 month shots tonight. I can't believe that it has been 6 months.

The Plan

Hello Abby again. Last week I had a team meeting with Ellie's doctors, nurse and everyone else that is involved in her care to hammer out a plan for her future treatment. So the plan is to schedule a temporary ostomy surgery for the 20th of October. During the three weeks between now and then we are going to try to increase the amount of milk that she can tolerate. If she does well with these increases we will cancel the surgery and go home. We will continue increasing as much as she will let us at home. So every two to three days if she is still doing well, we increase her milk by one ml. Today she increased to 8 ml and we are hoping for the best.

But there is a little part of me that knows that this will not work. I feel like I have a pretty good feel for the status of her intestines. They are very dilated and have never been give the opportunity to come down in size. We stayed at 2 ml an hour for about three weeks in the beginning of August and we did see some decrease in dilation. Because her bowels are so dilated she can't move as much food through as she needs to. We have tried pushing the feeds before and we have always gotten to a certain point and all the sudden she starts getting sick and is miserable.

So if she doesn't do well with her feeds then we in for a temporary ostomy. What is a temporary ostomy? A temporary ostomy is something the surgeon will create by opening Ellie up, finding the anastomosis (where her small intestine was attached to her large intestine) and cutting the connection between the two. Then he will bring the end of the small intestine up to the surface of her body and attach it there. So, any food that she eats will go in her mouth/G-tube through her stomach, small intestine and then out the ostomy and into a plastic bag that is attached to the outside of her body.

What happens to her large intestine you may ask? Well the surgeon is planning on leaving the small and large intestine slightly attached so that some food will go out the ostomy and some will go down the large intestine. This is very important because the large intestine is responsible for water absorption so if her large intestine was completely bypassed she would have really bad hydration issues and the large intestine could get very small due to lack of use (micro colon). We may even have to do some thing called “re feeding” that is where we take food that has come out of her small intestine into the collection bag and re inject it into her small intestine.

What are the risks of this surgery? First, because Ellie only has 31 cm of small intestine the food that she eats will fly right though her along with the gastric juices that her stomach makes. Some of this fluid will either be re fed into the large intestine by us and some will go thought the small area that is still attached to the large intestine. But. the majority of the fluids will end up the collection bag. So we will have a lot of work during the month after her surgery trying to keep her electrolytes balanced and her hydrated.

Second, the collection bags are not perfect and sometimes no matter what you do they leak, especially when you have a very active baby. When the bag leaks the milk and stomach juices will come in contact with Ellie's skin and can cause nasty ulcers on her skin. So this will be something that we have to be very aware of and work very hard to avoid as much as possible.

Third, this means at least 6 more weeks here in the hospital. It will take that long, and probably longer, to learn how to manage the two previous risks.

Fourth, because some of the intestine will come in contact with the outside air and could be damaged, she may lose around 2-3 cm of bowel. That is a lot when you only have 31 cm to start with.

Lastly, there is no guarantee that this will work. Ellie's intestinal damage happened when she was about 4 months in to her development, so that means by the time she was born she had been living with this issue for 5 months. Now she is almost 6 months old so that means that her intestines have been dilated for about 11 months. There is a chance that it has been too long and the damage is irreversible.

So, those are the risks. Yes it is going to be hard work, but neither Gib or I have ever backed away from anything because it was going to be hard. Yes, we may lose our minds constantly replacing collection bags that keep falling off or that Ellie learns how to take off. But, we will manage and no one will watch her more closely than us and we will do everything we can to keep her skin as healthy as possible. Babies get ostomies all the time. Yes, she will lose some precious cm of bowel, but we would rather have 28 cm of functioning bowel then 31 cm of non functioning bowel. Lastly, there is no guarantee that this will work, but there has never been a guarantee for any of the things we have done with Ellie. And there is never a guarantee in medicine.

Yes, it is going to be hard on us and more importantly is going to be hard on Ellie. But all in all Gib, myself and Ellie's surgeon believe that this is her best chance we can give her intestines.

Because we have to look at the glass as half full, we are still trying to push feeds and I pray that Ellie proves me wrong and we end up canceling her surgery date. So for now we spend our days with Gib working and Ellie and I hanging out laughing at each other. And on the weekends Gib and Ellie spend their days snuggling and learning how to jump really high. The house looks great and is starting to feel more and more like home.

Personality goes a long way

Hello Abby again. Have you met my daughter the cutest baby in whole world? Ok, so there may be cuter babies out there but she sure gives them a run for their money.

Here are some videos of our girl during play time. They were both taken about 10 minutes before she fell asleep for the night so this is her last burst of energy for the day. She sleeps through the night now going to bed around 6-7 pm and waking up around 6-7am. With the occasional episode of singing in the middle of the night.

Oh yeah and Gib dressed her, so he is responsible for her fashion. As you can see having an intestinal infection hasn't slowed her down one bit.

http://www.youtube.com/watch?v=ZPdQhfFe-uY

http://www.youtube.com/watch?v=PAwc8fqLS74