Friday, September 29, 2006
It's finally over. The house is sold. The week of meetings is over. Everyone has gone home and we are slowly getting back to our version of normal.
I had to go to meetings north of Boston Monday through Thursday this week. I commuted to avoid staying in hotel rooms and further confusing my body about where it is sleeping but I had very little time to spend with Ellie or Abby this week which was very tough. I spent Sunday night in the hospital and came back on Wednesday night very late to sleep there again, but didn't have a lot of time to see my girls.
Abby pulled marathon shifts in the penthouse again. She went to a meeting with the doctors on Tuesday to have a head-to-head meeting:
and map out the next steps for Ellie. It looks like we will be scheduled for another surgery the second week of October. Ellie will have her intestines separated and have the lower opening of her small bowel brought to the surface and through a hole in her belly (a stoma) which will drain into a bag. This will hopefully take the pressure of her bowel like opening up the knot in a ballon and let her dialted bowel come down in size. The meeting this week was to reconfirm that Abby and I knew about the intensive monitoring she will need and how much work it will take to keep it in line to begin with. Neither of us have shyed away from work when it comes to Ellie so we assured tham that we know what we are getting into from talking to other stoma parents and are ready for the challenge since it offers the best chance for Ellie to get her bowels moving.
So we wait and watch and rest up in the next two weeks before the real fun begins.
Ellie is doing well even though she has gotten the hospital bug called Clostridium ('C-diff' in hospital parlance) which has given her a bit of diarrhea. We were excited to see her poop rate go up but it stayed up without a reason and she was screen mid week. All this means for now is that she can't go into the playroom (where she probably got the bug to begin with) and the nurses have to wear gowns and gloves when the treat her. She is already on antibiotics to control the other bugs in her gut so no change there.
Tuesday, September 26, 2006
Hopefully Abby will grace us all with a post or two, but pictures probably won't happen.
All is well. If something changes, you will all get the update here.
Sunday, September 24, 2006
On Friday evening the legendary April brothers, my sister and her boyfriend Bob beat the familiar trail to Connecticut and were ready and in place Saturday morning with a clear plan to load the truck when I backed it into our driveway at 9:30 that morning.
By 10:45 the enourmous U-Haul truck was fully loaded with three bedrooms of stuff and after a pause to clean the floors and vacuum the rug, we were on the road by noon. Two and a half hours.
Presto! It was as if I snapped my fingers and all of our stuff had been transported into the truck.
The truck did remarkably well on the MassPike even though I am a lousy U-Haul driver and by 1:45 we were in Wellesley where we were met by another 11 people who were waiting for us to unload the truck. All together, there were 18 people on site including one poor exchange student who got roped into moving boxes and we had the truck unloaded and all of the boxes of stuff into its corrent place in one hour and 15 minutes.
I felt like I was at a barn raising.
Presto! all of our stuff was in a new place. I told Abby that I wasn;t sure whether some things had been moved because I didn't see them leave the house in CT or go into the house in MA. Empty house, empty truck, they must have made the trip.
I returned the truck two days early ( I guess that most people take days to move) and we were done by 4:30.
Thanks to the tremendous help that we got on both ends , we were done in 8 hours.
If only everyone could get the help that we got moving wouldn't suck so much.
I will gladly volunteer to move anyone after this experience.
Thursday, September 21, 2006
Wednesday, September 20, 2006
It is odd to us to give out this kind of advice since we are still so new to this process. But I guess that everyone is new to this when their baby is sick so we have become old timers somehow.
We preface everything by saying that we don't know the right way to do things, but here is what worked for us. I guess that we can still talk about it and smile makes people think that it must be a good idea. This preface was especially important as we collaborated on an email this morning about line infections.
I am going to start writing down some of the advice that we have given out. Since folks from all over are reading this, some of it might be worth something to someone, I guess.
Advice Number One: Nurses Make the World go 'Round- Some doctors may think that they are the top of the heap but for parents with a kid in the hospital, the nurses hold the keys to the castle. They are kind, caring people who have an extra large maternal section in their make-ups. They will love your kid like it is their own. You will get to know them and know about their families if you have to stay for a long time.
Although Ellie's doctor may disagree, the hospital staff don't work for you, but work with you to help your baby get better. Treating them like co-workers instead of servants has been a good approach for us and simple manners go far.
Please, thank you, if you have a second could you... these are all good places to start. They are doing stuff for you and your baby, let them know that you appreciate it every now and then.
I learned this on the first night in Boston when we shared a room with a mother who took a decidely different approach. When she needed something from the nurse, she would hit the intercom button and scream a demand into it. No please, no thank you, just demands.
I knew right then that that wasn't the right approach for us.
The upside is that the nurses won't cringe when they need to visit you and, even though they have to do their jobs no matter what, your baby may get better treatment if the nurses like to come and see you and your baby.
I guess that we will have to start a new segment that will go to the right and above the current one.
I have visions of a long diagonal strip of paper going around the room as she goes to high school....
Tuesday, September 19, 2006
We rationalized it by saying that it is shit luck. Some people get eaten by sharks, some win the lottery and some get a baby that needs some extra time with the doctors.
Another thing we asked is why don't you ever hear of celebrities having babies that are sick? Not a one. You would think that with the thousands of celebrities out there, the odds that they all have healthy babies is astronomical.
Sure you hear about really brave folks like Doug Flutie and Jim Kelly who have autistic kids or Down syndrome kids, but you never hear about sick babies.
My theory is that it is because of the reaction that we get when we tell people about Ellie and that we live in the hospital, like the guy who installed the floor in our house or the lady who cut my hair yesterday: sheer terror and a sense that they want to run home and check on their kids. Babies that are sick don't make good news stories.
Now this week I read that the best hitter in the National League last year, Derek Lee, who plays for the Chicago Cubs, is taking a leave of absence because his daughter has lost vision in one of her eyes. (The story: http://sports.espn.go.com/mlb/news/story?id=2591486). He is going to stop playing baseball and attend to his daughter.
Duh, like there is any other choice.
All I could think of was how tough it must be for this guy to be a public figure and have to immediately start living this strange hospital life instead of the superstar athlete life. Pull out beds instead of five star beds and dry burgers instead of real food. I want to let him know what we have experienced and that there are lots of folks who have dealt with this.
I also want to tell him to get his daughter to Children's. I don't know what kind of opthamologists and neurologists are working here, but my guess is that they are as good at their trade as Derek Lee is.
Besides, he is a free agent after this year and Fenway is only five blocks away. We sure could use him in the neighborhood.
If this continues, Ellie could have an arrhythmia which could be very bad for her.
On Saturday we stopped her cisapride and waited until Monday for a second opinion from the cardiology team.
Yesterday we got word that Ellie's heartbeat was in fact elongated and we decided with her doctors to stop the drug despite its possible benefits to her digestion. Our thought was a baby with short gut is bad but if she had heart problems, the short gut would seem like a bug bite.
Furtunately, the information that we have says that her QT interval will return to normal fairly soon.
So now we are assessing our options for the next step and will meet with her doctors in the next few days to start planning for phase IV of her treatment, most likely another surgery to bring her small bowel up to the surface in an ostomy which hopefully will allow her bowel to come back down to a functional size.
I never thought that I would look forward to taking care of an ostomy.
It will be difficult for a while as we deal with changes in fluids and other complications from the ostomy, but we are confident that this is a good step for her.
Meanwhile, Ellie just keeps dancing for us with her fancy legs:
Monday, September 18, 2006
This past weekend Abby and I went ot Connecticut and boxed up almost everything but the bed and sheets. The boxes are all in the garage awaiting the truck.
This Friday afternoon we will go to Connecticut and do the last of the packing.
Saturday AM we will get the Uhaul as soon as we can and begin loading the truck. My guess is that loading should only take a few hours. The crappy work has been done and it is just a matter of playing a game of furniture Tetris in the truck.
When it is full we will load up the car (the POS came to MA this weekend, strong as can be) and drive the whole show to MA. When we get there we will unpack and be moved.
Now the trick is how many able bodies we can get in each spot. Many hands make short work and we could use the help if you are near or up for a trip.
I really hope that some of the overly able-bodied Aprils are up for a game of Tetris.
Our thought is that we can use folks in either end of the trip: loading Saturday morning or unloading Saturday afternoon and evening.
If you are willing to help, we could use your help.
Once again, Abby is the brains behind this operation and if you could email her at firstname.lastname@example.org, that would be great.
Sunday, September 17, 2006
A doctor told Abby the other day that it is rare for the doctors and nurses to get a baby with two parents with Ph D’s like Ellie has. I don’t know where this came from but I guess our line of bullshit and ability to spew medical jargon right back at them has convinced them that we are far better educated that we really are. We agreed that we will correct them in the future if it happens again but for now it is fine by me that they are okay with us understanding the intricacies of what is going on with Ellie and her gut. I think that this also comes from our fearless attitude to point out to the doctors when they are doing something that doesn’t agree with the overall plan, or just doesn’t make sense.
For example, a few weeks ago, Ellie had a new kind of test done by a researcher at
We are told all the time that we are different than other parents and it has taken some time for the doctors, nurses and others to get used to us. Some have been reluctant to let us in to the loop and some have welcomed our opinions and ideas. Fortunately Ellie’s surgeon is in the latter category and wants to know what we think, what we are seeing and what we want to do for her.
One of the things that we have learned is that even though the nurses take lots of notes on Ellie’s care, not everything is recorded. For example weights of diapers is recorded to the gram, but no information is recorded about the color or consistency of the diapers. The answer to improving her situation may lie in these shades of green, brown and yellow and he wants us to add that info to the process.
He has even suggested that we start reading medical journals, something that other doctors have told us to avoid because they were afraid that we would know only enough to be dangerous. Children’s has an online subscription to Pediatrics which is very interesting to read and I have found cool stuff that applies to her care while reading through late at night. We avoided Google mania at the outset which was a good step, but now knowing new things can be helpful. For instance, I found something in Pediatrics last week that showed that a small dose of Vancomycin given when Ellie is disconnected each day could reduce the number of line infections without increasing the risk of vanco resistant bugs. We brought this to the doctors and may try it soon.
For all of you Short Gut parents with a CVC or PICC line, the article is on the Pediatrics online version: http://www.pediatrics.org/cgi/content/full/116/2/e198
We are going to be having meetings every week or so with the whole team to talk about the Ellie puzzle and have us participate in solving the puzzle. That will be an interesting experience but Abby and I have participated in enough meetings to do this. We hope that it moves the ball along.
On Friday she had her forst follow up EKG to check on her heart function after a few days on cisapride. Apparently, some kids had some problems with their heart function when they were on it before, so her follow up EKG was scheduled as she went on the drug. The initial report from the cardiologist was that everything looked fine which was encouraging to Abby and I because we were seeing some benefit of the Cisapride since she went on it. If this works she might avoid another surgery.
Since the doctors here are very thorough they had another cardiologst look at her EKG yesterday to verify what the 'first glance' results said. The second look showed that Ellie's 'Q-T' (the time between the bumps in her heart fnction which indicates when her heart valves open and close) may be a bit longer than in her test before taking cisapride. To be safe we have taken her off cisapride until the full cardiology team can look at the EKG and give a solid opinion that we all can sleep on. She got her last dose yesterday afternoon and we hope to know one way or the other by Monday afternoon.
A bit of a bummer, but just another little bump in the road. Ellie is doing very well and spent the day yesterday enteratining her grandparents and learning mildly offensive Irish bar songs from her grandfather. she is happy as can be and doing just fine othe than the the standard issues.
Tuesday, September 12, 2006
Hello, it's Abby again. I was walking with Ellie today in the garden enjoying the cool air and warm sunshine. We stopped at the sundial in the middle of the lawn to play. Play consists of me taking Ellie out of the stroller and she stands on my lap and looks around. Then she stands next to me and plays with my hair or face. We watch the other kids playing or just watch the trees blowing in the wind. it is generally a good time.
Today we were joined by Livy. A spunky 3 year old whose brand new baby sister was admitted yesterday for a respiratory problem. The father joined us and started asking about Ellie. So I gave him the short version of her situation. As I was talking I could see the smile slipping off of his face. I ended my story by explaining that she may never be able to eat fire buffalo wings but she will be able to eat many other things. He looked at me hugged his daughter a little closer and said, “Wow, that's terrible, absolutely horrible.”
I could see that he no longer was seeing Ellie as the incredibly cute baby that she is and had started to see her as a freak. (She was wearing a T-shirt today also so every once and a while her G-tube would stick out and that didn't help the situation. ) So just about the time I was about to stand up and start yelling at this guy for being a insensitive ass, I realized that the horror on his face was not really directed at Ellie.
The look of horror he had on his face was because he was feeling fear for his own child that was upstairs in the NICU. I think I got to watch as this guy realized how bad things could get for his new baby. I reassured him that babies are tough and can heal very quickly from pretty much anything. He just nodded hugged Livy to him. I felt like giving him a big hug but, I think that he was dealing with all that he could at that moment, so instead Ellie and I practiced waving goodbye and continued on our walk.
I was warned by another mother that going in to the real world would be difficult because people are not as polite as you would hope they would be. I had a mother tell me that another mother in the grocery story and asked, “Didn't you get any prenatal care?” Statements like that don't happen at Children's Hospital because here all the children are sick. But, when you leave all the sudden sick kids are not the norm and you stick out. One mother referred to it as “hospital society and real world society.”
People reactions are really based on their fears and they also want to feel like we did something that made our babies end up different. So that they don't have to admit how random and just shit luck this whole thing really is. I know that I wasn't in the real world in the garden today, but I feel like I got my little sample of it. It made me realize how tough Ellie and I are going to have to become.
On a happier note, Ellie is a standing fool. I think she is going to skip crawling, and sitting and just start walking. If you try to sit her up she stiffens like a board so that you either have to stand her up or lay her down. Laying her down results in a big lower lip and then a scream and standing her up gets you a big smile and squeal. She has also taken to standing at the edge of her crib looking out into the hallway and yelling and smiling at everyone that walks by. I can't believe this this is the same baby that was barely filling out a premie diaper 5 months ago.
We also went and signed the lease for our new house this evening, It was nerve wracking for us because we knew that the house was an amazing bargain for what it was and where it is and we were afraid that the owner would come to his senses and jack up the price before we could sign on the dotted line. He made it interesting for us with some hemming and hawing about how much money he has put into the house in the last month, but ultimately he signed the lease for the amount we had expected. We can move in on the 15th after the painters finish but won't do the real move until the following weekend.
We are excited by both of these bits of news and will post some pictures when we get a chance to go over with the camera.
Sunday, September 10, 2006
Ellie is doing well despite cultivation a new line infection over the past week. She has bugs of two kinds in her central line and has been on antibiotics since Wednesday to fight them off which seems to be working well. This time her fever was much less than before and she was only slightly grumpy during the first day of the infection which is good for everyone. Gotta love that fish oil.
She was back to normal the next day and hasn't missed a beat since. She is still very slow on her feeding, which is fine for us and keeps her comfortable and happy. Now that we are going to be local, the rush is really non-existent. She'll eat when she is good and ready and until then we are giveing hr tiny bits of food by her tube and a couple of bottles a day to remind her what her mouth is for and avoid the problems of an 'oral aversion' when kids foregt how to eat. How a BRogan could forget this is a mystery to me, but I guess it could happen. She eats her bottles and the milk drains out her G-tube. Easy in, easy out.
We hope that the shipment of Cisapride will come soon and we will start that as soon as she is able to have it.
This may b e delayed because of her smart ass parents doing their homework.
You see, Abby and I read the literature on every drug that she gets, more or less. The other day we had a funny conversation with her doctors about contraindications for Cisapride when we caught a conflict between one of her anti fingal drug and Cisapride. The look on the doctors face was great, but they are getting used to it by now.
Us: Do we need to plan her course of anti fungals to be done before the Cisapride?
Doctor: Why woul;d we need to do that?
Us: Well one of her drugs is on the no-no list for Cisapride, we think.
Doctor: Wow, you guys are good. Nobody's parents ever read all of those papers and knows what is in them. That would be a good idea. we'll plan for that.
As they have told us all along: they know medicine, but nobody knows Ellie or her treatment like we do. Besides what else are we going to do with all of those hours in the hospital now that Abby has finished watching Buffy the Vampire Slayer?
SSDD. On we go into September, laughing and playing with our girl:
Thursday, September 07, 2006
This should be fun, especially when I drive my P.O.S. Subaru to Whole Foods. The PTA will cringe as I park next to their Range Rovers.
We can move in on the 15th but are planning on moving the weekend of the 23rd and 24th. This means that we will be able to move out of CT and avoid a storage unit, which is great.
Anyone up for carrying boxes?
Tuesday, September 05, 2006
Moving back into an apartment was not high on list and we hoped to find something different that wouldn't share walls with noisy neighbors and their late night calisthenics or stinky cooking. Why is it that your cooking is aromatic and theirs is stinky? I don't know but it is the thing that I hate most about living in an apartment.
The late night aerobics can be kind of entertaining....
The first place was just awful. The top two floors of a run down victorian in Newton. It would have been something if we could do work on it, but as it was it was just yucko and smelled like someone had gone nutso with the Lysol to cover something up. No thank, not singing to either of us.
The next one was better. The top floor of a smaller house that was in good shape. Washer and dryer for barfy girl when she comes home, but a very seep set of stairs. We liked it so much that we offered the guy, who owns the building and lives downstairs, a check on the spot. He declined and told us that he was 'interviewing applicants for the apartment', not showing it.
Well I don't know if we met his standards, but hopefully we'll never know.
Number three was the ticket. We found a winterized cottage in posh Wellesley, next to the town pond for Gus to keep up on his swimming and for less than any of the other places.
A house! With no shared walls or stinky food.
It is little but great. Two bedrooms a new kitchen, and new floors all over. Hook ups for our washer and dryer. We gave the woman a check on the spot and hope that we will be cleared to move in mid month.
Five minutes from Abby's sister's house and closer to Children's. And a sun porch for Eleanor's naps:
Finally, a place for my stuff.
Saturday, September 02, 2006
Friday, September 01, 2006
A long run in the morning, followed by a nap or three and then, to make things interesting, a game of fetch until he falls down.
He is also becoming quite a water dog with great leaping ability:
And learning to shake all over to get the water out of his ears:
I woke up this morning in the hospital and was greeted with a card made from purple Ellie footprints that Abby and Ellie had made on the sly with the hospital's child life whiz and an empty crib next to me.
After a minute panic trying to remember what I had done with Ellie in a middle of the night sleepwalk, I realized that Lindsay, our nurse had come in at 6 and taken Ellie away after she woke up but before she cried. A small thing, but the extra hour of sleep was great. Ellie was holding court in the nurse's station when I got up and was happy as could be.
Then, one by one, each and every nurse that I saw this morning stopped and wished me a happy birthday.
Every one. Some by name, and some just hey happy birthday, but Abby worked some magic and got the word out. It made me feel great that these folks stopped to say that to me.
It also made me think and realize today that like it or not, we are now part of the community on the wing where Ellie lives. The nurses and doctors are part of it, same with the housekeepers and the magic supply guy who can get you anything you need like contraband butt wipes.
We are part of it as well, and apparently people like us a little bit. Or maybe they just like our really cute little girl, but I'll take that kind of association, too.
As the day went on, I also got birthday notes and voicemails from folks all over the place from people that I haven't heard from in a long time. Those were great, too.
I've never been much of a birthday person.
This year may have changed that.
Her EKG was great a few weeks ago and she will start on the new drug as soon as we can get it from the pharma company. She will be monitored very carefully and we hope that this will get her slow gut in gear to boost her ability to move things through the dialted portion of her bowel.
This delays her next surgery for a while and if all goes well could take the place of another trip to the OR. Avoiding the OR is always a good thing.
We'll have to see.