Friday, December 29, 2006
These all need to be found, cleaned up and thought about before we go on to the good parts of Ellie's day.
Stool, urine and ostomy output (think greenish milk) all get weighed and logged to make sure that neither too much or too little is coming out which could mean dehydration. Dehydration is very bad, even though we have extra IV bags to give her fluids.
Barf, even though it has been rare in the last few months, does make an appearance every now and then. If she barfs we have to think about what it was, what and how she ate, and what it means for her next feeding.
Blood only shows up every now and then. Most often it is around her G-tube which is always angry (like a hole in your belly should be) and sometimes it bleeds a little bit. It is never red blood and mostly shows up as a dark splotch on a dressing.
Her ostomy also bleeds red blood a bit when we change bags or if Ellie has been lying in her belly a lot. It is unnerving to see red blood anywhere on her but we both realize that her bowel is naturally red because of all of the tiny blood vessels that line it and sometimes they will bleed a bit. Last night's bag change caught her in the perfect combination of situations with her really mad (the ostomy will swell if she gets angry, like the Incredible Hulk) and after a day of playing on the floor. Because of this her ostomy bled a good bit. We cleaned it up, but it was a new experience in the long line of things that we do every day.
I've gotta go and change the cotton balls in her ostomy. Again.
Thursday, December 28, 2006
And walks across the room:
The video of the whole thing is at:
Wednesday, December 27, 2006
Here are two videos of Ellie playing motorboat with her rattle:
And giggling with her aunt on Christmas morning:
She didn't know that the snow was any different than other days outside but it was good for us to get out and get some air.
We have spoken to the Short Gut folks at Chilren's and have added new foods to her buffet as well. We gave her a piece of apple in the mesh teether thingie and learned that tart Gala apples aren't such a good idea but sweet delicious apples are just right for babies:
We have also given her some Cheerios that work for motor skills as much as food. Gus loves to clean up the mess at her feet but we think that a few may have gone down the hatch. It is all trial and error here and we know that a round of constipation and/or an ostomy explosion is bound to happen, but for now it is good to be moving the train along.
Tuesday, December 26, 2006
Ellie is starting to expand her diet and we offered her rice cereal a few days ago. We even think that some of it went down to her stomach and to her gut in addition to the bunch that ended up on her party dress.
Hopefully this hasn't tied things up below too much but we are on the poop watch again hoping for a dookie in the diaper since it has been a little while.
We got the go ahead to give her some Cheerios, too. We have been waiting for this for a long time and it is a glimpse of what other babies do at 8 months.
Christmas was great and we had a house full of family here to share Ellie's first Christmas with us. She is quite a ham and is learning to clap her hands in response to any round of applause that comes her way.
Friday, December 22, 2006
We did a little bit of shopping with surprisingly few other shoppers and Abby and I got out first experience with double takes at Ellie's tubes by the public. We both got over it quickly. We could give a shit what housewives from Brookline think about Gut Girl and her tubes.
And show off Gut Girl, too.
So Abby dressed her up for meeting people and off they went. I went grocery shopping like a good domestic.
When I got home this is the baby that greeted me.
We are having great fun with our girl.
At home, a minor Festivus miracle- Ellie's line worked perfectly when we too her off of her PN this morning. We were all set for a day at Children's with our bag packed for a possible extended stay but the saline flush went in, the blood came out, and we are in business. The TPA took a little bit longer than usual to work but it looks like we are good for now.
At Children's, a more significant Festivus miracle. There is a little boy that we know who got on Omegaven much later than Ellie has had the serious issues with his liver that come with the old lipid source (See August 26). The Omegaven just didn't do its miracles with him. His bilirubin is through the roof, his other organs aren't doing well and he is just plain old sick.
Yesterday they listed him in the organ donation program at Children's and just fours hours later, organs were available for his very rare blood type. A very special Festivus gift and we are hopeful that his surgery goes well this afternoon. And evening. And tomorrow morning (it takes more than 16 hours to do the transplant).
It is very tough for Abby and I to see what could have been. If we hadn't stumbled into Children's and met Dr. Puder and Kathy Gura who do the work on Omegaven. We would be in a much different situation right now and making that same decision about a transplant. Instead, because of nothing that we did other than coming to Boston, our girl is upstairs asleep in her crib doing what babies are supposed to do.
Hopefully that will be the case for our friends soon.
Thursday, December 21, 2006
Today was Ellie’s second visit to the outpatient Short Bowel Clinic at Children’s.
Even though we are out the door, they keep good tabs on her. We have been in touch with her doctors and nurses by phone about minor things but clinic is a chance for an exam and a discussion about Ellie’s progress and where to go from here.
Her progress has been good so far. So good, in fact, that we don’t need to bring her back for a regularly scheduled visit for a month.
That is for a scheduled visit. We certainly will be back sooner for unscheduled things. Such is life with a kid that has three holes in her belly.
After a long day with a tired girl, s
After a long day with a tired girl, some highlights on today’s news:
She has grown steadily in her time at home. She now weighs 7.43 kg which means that she has gained 20 grams a day, a good growth rate for a PN kid. Too fast is bad and too slow is bad. 20 grams a day is good.
Her feeding is up to around 200 ml per day. She was at just over 100 when we left Children’s. It has taken some adjustment to get Ellie to eat in the new environment but she takes bottles every few hours during the day and does pretty well with them. This is a good step for her, but a long way from the current goal that we learned today is 1200 ml per day. We have a long way to go but have come a long way from the 24 ml days that were not that long ago. I think that measuring things in percentages is the way to go, sort of like the math that I do in my head on the treadmill…. Right now we are at 16 percent feeds.
Her ‘Ins’ (things going into her mouth or G-tube) and her ‘Outs’ (things coming out the other end) are in good balance. This was a big concern when she got her ostomy but it looks like she is doing well with that so far and her electrolytes are in good balance.
One bad thing was today’s blood work. The problem wasn’t in her blood, which we hope is as good as always, but getting the blood. Usually we draw it from her central line, without needing a needle to ‘stick’ her. Today, for the second time in three weeks, her central line wouldn’t draw blood. Things go in fine but can’t draw out. This could mean a small clot is at the end, or that the placement of the end has shifted.
We treated it with another round of TPA (Drain-o for IV lines) but had no luck even after three hours of soaking. Tomorrow we talk to Children’s about what to do next and whether another round of TPA is in order or something more complicated.
We are crossing our fingers that the line can stay.
A new central line is one thing I don’t want for Christmas this year.
Tuesday, December 19, 2006
Most of the day he sleeps next to her as she sits on the floor. It is really great to have everyone together and not have to corral Gus.
We don't trust him at all and never turn our back on him because he is the first dog and we know that he likes to be the king.
We give him lots of love to go along with the attention that Ellie gets. As we do procedures with her upstairs he sits by the gate that separates him from the clean(er) room upstairs where we do med stuff and waits for us. It is very cute and we are very lucky that he is such a good sport.
Sunday, December 17, 2006
That means we can go on field trips and in the last week we have been to the doctor's office, the hospital, the mall, and Babies R' Us.
Today we needed a Christmas tree and off we went to the tree selling place.
Ellie preferred to ride inside of my coat with my hat on:
We have a beautiful tree and will decorate it bit by bit as we have time in the coming days.
Ellie digs the lights. Almost as much as she digs Gus, the dog, who is being an angel around her.
In addition to all of the normal baby stuff that we do, we have the added duties to take care of all of Ellie's hardware every day.
Her G-tube is leaky from having a tube that was too tall in there for a week or so. It opened up the beautiful little hole (like a pierced ear) and now the fluid leaks around it and oaks the dressings and/or her clothes or ostomy. It comes with the territory and when it leaks it needs to be cleaned and redressed. Kst days this happens two or three times.
Her ostomy is full of cotton balls to absorb the liquid that comes out. To keep it from over saturating, it needs changing every few hours. Tweezers and new balls. Feed her and get ready to replace them.....
Finally, her central line dressing is a constant source of anxiety for us. That is the high stakes gamble for us and we have been fortunate so far that the clear window/dressing has stayed in place this week. We put on our masks last night for the weekly dressing change and sweated our way through our first dressing change. A success.
In short, if we aren't doing something, we are cleaning up from it, getting ready for the next round or carefully calculating what went in, what came out (we weigh everything) and seeing whether it it within acceptable limits. It gets easier, and we can do the easy stuff without much thought but the more complicated stuff is more taxing on us.
One of the big tasks of the day is setting up her TPN. We are getting good at this each night. In the beginning it took a hour to get it set up and running. Today Abby pulled it off in under 20 minutes from start to hook up. Lots of parts to connect and pumps to set up, but we get it done. The toughest part is to remember to take the PN out of the fridge four hours in advance of her hook up. It needs to be room temperature or it will chill her when it goes in. That would be bad.
When Abby resigned her job at the Aquarium, we said that Ellie would be a full-time job. That is turning out to be a fact and then some.
we are hopeful that daytime home nursing will come on line in January and will be here to lend a hand. It would be nice to have a relief pitcher for the hard stuff every now and then.
But it is all worth it for our girl who smiles and sticks her tongue out through almost all of it, except the central line dressing changes. Those aren't fun for anyone.
Thursday, December 14, 2006
First off, we are home.
Very simply life at home is great.
And terrifying. We no longer have the great nurses of 8 West a few steps away whenever we push the little red button, or the entire floor in our room if we push the BIG RED EMERGENCY BUTTON that thankfully we never had to push but it was nice to know it was there.
We now do everything for Ellie inlcuding setting up her IV's, feeding her, weighing what goes in or out. IT took some getting used to and adjustmen to the routine but it is getting easier everytime we do it.
It is also exhausting. Both physically becaue it starts early and ends late, and mentally because we both know that the safety net is gone and that we are out here alone until we can get help on the phone.
We have a great nurse who spends the night with us and that makes things easier and lets us sleep during the scary overnight times when alarms are most troubling.
Gus the wonderdog returns this weekend. That will up the ante, but we miss him and it will be great to have our family together finally.
Ellie went for her first outpatient 'clinic' today and everything is going well. the doctors are pleased, she keeps growing and we have taken two hours off of her PN each day. she is down to 14 hours a day now. Lots of free time to play without the pumps.
Tuesday, December 12, 2006
They are doing "A Day of Giving" and Ellie is one of the kids that they taped for the promo.
I'm not sure how much she will be on but keep an eye out for her.
The video is on the CBS-4 website now: http://cbs4boston.com/video/?cid=66
Or try this: http://firstname.lastname@example.org
Monday, December 11, 2006
At just after 12 today, Abby moonwalked our girl out the front door for real.
We loaded her into the car and drove down the road. Eight moths late and with a girl that looked around a little as we went, but we are out the door.
We are settling in and have two sets of nurses coming this afternoon. one to set up Ellie's TPN and one as her overnight nurse.
Abby is exhausted, but we are home. Finally.
Sunday, December 10, 2006
As Gib mentioned yes, I have been nesting. It is actually the second time that I have nested. One week before Ellie was born, with the help of my friend Jess, I put the finishing touches on our new nursery. Then 5 months later I had to pack that unused nursery into boxes where it stayed until this week. As I unpacked I had to shake off the feeling that I might be tempting fate once again. But, here we are and everything is still on track to finally having a baby in our nursery.
Gib and I are fully aware that even though we may be going home with Ellie tomorrow we will defiantly be back. And just because we are going home now, it does not mean that we will be home for Christmas. We know that we have another long stay ahead of us when Ellie’s intestines are reconnected, many months from now, but we also know there may be many shorter visits peppered in between.
Ellie and I spent the end of the afternoon and this evening being visited by staff saying goodbye and getting many hugs. The staff here on 8 West have become so much a part of our lives that they really feel like part of our family. Ellie loves the staff and the attention that they give her so much that Gib and I fear that she will be bored with just the two of us. But in reality she is going to be so amazed with all the new things that she gets to see that we hope there will be no chance of boredom.
I think the person Ellie will miss the most is the kind woman named Anna that cleans our room everyday. She and Ellie have a special relationship, so much so that if we need Ellie to smile for a picture all we have to do is ask her where Anna is.
Ellie is doing very well and making Gib and I feel better and better about her future. Just to give you all an idea of how well Ellie is doing, (please knock on wood before reading this) she has gone from 4 different medications everyday to get her intestines to work to none. She is drinking 40-45 cc bottles (that is an ounce and a half to the layman) every two hours. She is walking laps around her crib and is off the TPN for 8 hours a day. We were hoping she would be off the TPN for 12 hours a day at discharge but Ellie can not maintain her potassium for more than 8 hours. We just have to wait for her to get bigger before we can decrease her hours of TPN again.
So I’m now getting ready to go to bed feeling very good about tomorrow, just the idea of being able to take Ellie on a walk in our neighborhood or playing with her in our bed all morning makes the past 8 months completely worthwhile. Just about the time I start feeling optimistic I have to remind myself that this is a marathon not a sprint. We could be the home stretch or more likely only at the midpoint. It is a delicate balance to stay realistic without sounding pessimistic. But it is where Gib and I must balance to not loose our minds in this whole journey.
Here’s to tomorrow.
We have the scared shitless part down. On the other hand, I guess that we are lucky that we know what we are doing with Ellie, how she acts and what to expect, at least for now. Taking home an 8 month old is a lot easier than taking home a newborn.
We have nurses all lined up to meet us when we get home tomorrow and they will be with us for the overnights for the first two weeks at least. Somehow issues in the middle of the night are scarier than during the day and having a nurse on hand will make the transition a lot easier. We will see how much help we need and adjust after the first two weeks.
Having a nurse in our house would have seemed foreign before our time at Children's, but in the past few months the nurses have become our friends and we will really miss them. We will miss them for the great care that they gave Ellie and also for the way that they treated us and how they love Ellie like we do. I am afraid that there may be tears on both sides as we leave tomorrow and taking Gut Girl out to see the world.
But we will be back.
That is a certainty since Ellie has a hole in her belly that needs to go away and also because we have learned that short gut kids are back in the hospital fairly regularly.
Just a fact of life. Sort of like Cheers- the kids are bigger and doing different tricks, but everyone knows their name.
So now we wait and hope that we don't have any hiccups.
The plan is to get the works moving in the AM and hopefully we will be out the door by lunchtime.
Saturday, December 09, 2006
All systems are go to bring her home on Monday. We have found a nursing service that has nurses for us, the medical companies that supply TPN, formula, and medical supplies (three separate companies) are all set for our arrival and most of what is left is waiting for the day to come. Oh, and practicing my moonwalking.
That isn't to say that things have been dull or that we haven't had doubts that this could just be a big old fake out.
For example, Ellie's central line started acting up yesterday for no apparent reason. we usually can give her IV fluids and also draw blood fro her line to avoid a needle stick. Well yesterday afternoon, the blood just wouldn't come out. The saline flush would go in, but nothing would come out no matter how we moved her or contorted her.
Ah, crap, says Gib. The line must be shot or kinked inside. I had visions of going to radiology, seeing that it was shot and signing up for another few weeks at the Longwood Suites.
Well, it turns out that sometimes little clots form in the line and work like a flap that allows fluid in but not out. No big deal. In then end, we hit her line with some IV Drain-O today and everything is clear. But it was another in the line of things that remind us that everything is subject to change with Gut Girl.
Add into that a suggestion that a dot on her belly scar looked like MRSA (Methicillin-Resistant Staph Aureus) a really nasty bug that lives in hospitals. Yup, the possible delays keep coming. No it wasn't MRSA, but it made us both nauseous to think about it.
On the homefront, Abby has made a nice nest for us to plunk Ellie in whenever she gets here. The crib is in place, the table to do medical stuff is set and all we need is a bouncing, giggling 8 month old to make it lots of fun.
Yup, 8 months old today:
Another cool, strange thing happened tonight. I learned that this little blog has been nominated as one of the ten finalists for the Best Medical/Health Issues Blog for the The 2006 Weblog Awards!
I know I don't have a prayer of competing with the professional blogs, but if anyone wants to vote, voting goes on through the 15th at this link: http://2006.weblogawards.org/2006/12/best_medical_health_issues_blog.php .
It is cool just to be nominated. And I get use this fancy logo:
Although I think that things got a little thin this fall, I am glad that I didn't have more to write about.
Dull days are bad for reading, but are good for us.
Thursday, December 07, 2006
Like doing a hospital required car seat test. 90 minutes in the seat while hooked up to all the monitors, and of course she passed with flying colors.
We are learning the finer points of IV use and other good tricks as well and even are talking about what we are going to do in the first weeks of 'clinic' when we come in for the day each Thursday.
There is even talk of starting real food beyond formula.
I can only imagine my girl with a mouthful of rice cereal....
Monday, December 04, 2006
No big news today.
Other than the fact that we have set a discharge date and are working towards moonwalking out the door a week from today, (knock on wood).
Yes, December 11th.
Abby met with the pediatrician in Wellesley this AM and we are set with a runny nose/ immunization/developmental doctor to go along with the surgical team.
The scariest thing is that we have an appointment for next week to bring Ellie to the pediatrician OUTSIDE OF THE HOSPITAL!!!!!
Cross those fingers, cross those toes and remember that a setback could mean Valentine's Day.
Such is life with Gut Girl.
But all things are pointing towards fresh air and a very scary car ride next Monday. it almost makes up for the empty car ride when we left yale without a baby in April.
Wait. No it doesn't. That really sucked.
it is going to take a pallet to get all of our stuff out of there.....
Baby steps, Baby steps.
Friday, December 01, 2006
Little Otto is a patient in the hospital. He wears a gown like yours.....
Otto has an ostomy just like you......
Help Otto change his ostomy bag.....
No, I am not making this up.
Ellie got one of these the other day complete with a functioning ostomy bag. Brilliant to make something scary and sometimes gross to little kids into a toy.