Monday, January 29, 2007
They were here to assess her for their programs and couldn't get over the fact that the girl that was playing with them was the same girl that was described in their paperwork. A central line, a g-tube and an ostomy paints the picture of a sick little girl.
Instead they met this:
But it only took the nurse a quick peek under the hood to see that yes, in fact this was the same girl and that she did have all of this fancy plumbing:
From top left down: her central line, her g-tube, and her ostomy(filled with cotton balls to absorb all of the formula that is going through her these days). Lots of stuff crammed into a tiny little belly, but it all fits and amazingly we can access each part separately to do maintenance .
The results of the meetings were good. Ellie will continue to go through the Early Intervention screening to see if she needs extra attention with speech, physical or other therapies.
The best news is that the Community Nurse has okay'd us to start nursing at the same level that we had it when we came home-10 hours a day. This will be a great help. It will let us take a deep breath every now and then. We hope to use a lot of those hours at night when Ellie is asleep but still needs care. Unfortunately, we are learning that the nursing shortage includes home nurses.
Hopefully we can find a combination of nurses to come and meet Ellie.
If you know a good private duty nurse around here, tell her that we have a cute baby and cable.....
Sunday, January 28, 2007
This change from an all oral feeding plan comes as a result of of a good conversation that we had with a very wise, experienced SBS parent during our Thursday visit to Children's. The way she sees it, the TPN is the greatest evil for these kids, followed by a possible oral aversion if they don't learn to eat by mouth or have bad experiences with oral feeding. You can have the best oral feeder in the world, but if they don't eat enough they will need to stay on TPN.
The other mom made a very logical point that if we could get rid of the TPN using the tube feedings the switch to oral feeds will happen. But if we can't get her feeds up, we will never get off of TPN. Regardless of what Omegaven does, getting off of TPN is the top priority.
Feeding Ellie through the tube is a much more effective method to build her feeding. She gets full after about 40 ml of milk through a bottle and then can't have another one for two hours while she deals with the big quantity of formula. This allows us to get about 6 or 7 bottles into her each day after the time for her beauty sleep and naps are taken out. This gets us to 240-280 ml per day if she coorperates and drinks every bit of every bottle. Most days we topped out around 230 ml.
After changing to a combination of bottles in the morning and at night and the pump all day, we care able to get much more milk into her. The slow rate keeps formula going into her without making her very full which enables us to get 40 ml into her every hour without any ill effects. This effectively doubles her feeding during the day. Without much thought or the endless attempts to get her to eat, we can get a lot of formula into her which is a big step in the right direction.
Now if we can get her stomach and bowel to keep working after she has gone to bed. For some reason her bowels shut down afer bedtime and her tolerance for food goes down to 3-4 ml each hour as she sleeps. we tried ast 5 last night but got a nice barf this morning. Barf isn't any fun.
Onward and upward.
Friday, January 26, 2007
She hasn't been able to do that yet and Gib and I have been working over and over with her to try to find a way that she liked and would use. Finally all our work payed off yesterday and we gave her a resounding cheer, which I'm not sure she understood. As Gib and I sat there smiling at each other and clapping it dawned on us what this meant.
What this means is that now there is no stopping our little girl. Right now she can walk around the coffee table twice in about a minute. And, as long as she has something to hold onto she will go anywhere. Our one control used to be that we could lay her on her back in the middle of the floor and not really worry about her going very far other than rolling.
But now, now she can roll to something that she likes, sit up, then stand up and she's off! We actually had to put her backpack, that holds her feeding pump, on her today because she was walking away from it to fast. She didn't really love it, but she will learn to in time.
She did all this in time for her first Early Intervention visit, the two therapists were just wowed by her and kept saying, "and how long was she in the hospital?" She is such a charmer and has defiantly learned how to flirt. The last time we were in the hospital we were in a shared room and every time our neighbors closed the curtain between our beds Ellie would stand up and yell at them. When they opened the curtain she would sit there and just watch them like she was watching TV.
So now with our new very mobile girl we will soon have to break out the pack and play and she is getting a lot of time in the exersaucer. This picture was taken of Ellie sitting right outside the kitchen watching me cook dinner. Yes, that's right I cooked. Notice the tongue is out again. I'm starting to think that she has it out more than not, and I know it defiantly helps her think.
Thursday, January 25, 2007
We had an afternoon with the Short Bowel clinic and came home. we were placing odds at 60/40 that we would be admitted for line work, but all of the knowing folks at the clinic looked at her line site, told us that we were right to come in, but the line looked good. The discharge was most likely due to old sutures on the line that were necessary after it was installed but have just become irritants since the insatllation.
We cleaned her up, changed the clear dressing over the line and came home. No antibiotics, no further treatments.
We got good news during our clinic visit beyond a thumbs up on her line. ellie is growing very well and is in the 50th percentile on the weight chart and the 75th percentile on the height chart. Long and skinny but doing well.
Based on her good growth and the progress that we have made with feeding her (up to about 250 ml per day) the doctors have decreased her PN by 10 percent which brings her down to 12 hours on the pump each night.
This means that our evenings of chasing her around with the pole and trying to keep her from tangling on the lines may be over for a while. She usually goes to sleep around 8 and sleeps until 8 the next morning. Yes she sleeps 12 hours at a clip since she doesn't get hungry on PN so she will sleep right through her PN cycle.
This is good news for us and an indication that the train is moving in the right direction even with the speed bumps.
Ellie woke up this morning feeling great and calling for her 'ma ma ma ma'.
As we did her normal 45 minutes of maintenance and dressing changes we noticed that the site around her central line was red and had some red and off-white discharge (on my list of yuck words).
The central line is high stakes bingo and we have learned not to mess around with it. Since we had only been home for a day and a half we took the high tech route and took some digital pictures of the site and sent them to the nurse who is the guru of line care.
We hoped that a check of the pictures would tell us that this is normal and not to worry and ultimately save us a trip to Children's.
No such luck.
We have a 1:00 PM appointment this afternoon to have it looked at.
The 'go bag' is in the car in case we need to use our Children's frequent flier cards for another stay.
Unfortunately, this doesn't get us any free trips or even a toaster for our repeat business.
Tuesday, January 23, 2007
We hope that we will be discharged this afternoon to go home with our girl.
Her ziploc line has stitches in the skin and another line of stitches in the tissue below. The latest infection happened between the two and on Sunday, with the pressure of the infection inside, her outer suture line let go. It winked at us.
The surgeons have opened it up to be about an inch long to drain and heal and eventually it will heal completely from the inside out.
In the meantime it will be filled with sterile gauze that has to be changed 3-4 times a day.
So now we have a new task for the daily routine- packing her wound.
Hopefully we can keep the bugs away from it.
Monday, January 22, 2007
We are getting early results back on her cultures and hope to have them identified pretty well by tomorrow. Then we can move away from the general antibiotics to more pinpoint drugs. When we go home depends on what bugs she has, what drugs she needs and whether we can give them to her at home or she needs to stay around to get them.
We are pretty flexible.
Some pictures of our last 24+ hours, narrated by the center of the universe:
Maybe if you put that stupid camera down, you would see this thing in my belly....
See? I told you I was feeling crummy and now were in the ER....
But now I feel much better.
Even good enough to play with balloons...(YouTube link)
Can't you see how proud I am?
And I get to see all of my friends in the hospital. Really. All of them have stopped to say hello.
Sunday, January 21, 2007
We grabbed the 'go bag' with PJ's toothbrushes and some stuff for Ellie and called as we drove. We were seen right away at Children's. 11 miles is a nice distance and we are very glad that we descised to move to Masschusetts.
It seems that somewhere along the way the cut that they have used to open up her belly (the one that I think needs a ziploc opening) got some bugs in it that have grown and ultimately opened up her stitches.
Her wound got cleaned and dressed and we are here for a few days of serious IV antibiotics because we don't want to have those bugs go elsewhere in her system.
She is happy and smiling all the way through. The ER docs didn't want her to leave. Just stay and smile at them.
Thursday, January 18, 2007
For the eight months that Ellie was in the hospital people we would meet would comment that they thought it was amazing that Gib and I were able to do what we were doing. That we were able to still be smiling after having been there so long. We were always amazed at those comments because hospital life didn't seem that bad and we had gotten used to it and just did what needed to be done.
Now that I have been home with Ellie I have a new perspective on the situation, going back was very hard. It is the lack of control that gets you. For instance, if it was time to give Ellie a bottle, I have to go find some one, who then has to find some one else, to get me a bottle. Then, I have to go wait for my turn at the microwave to warm up the cup of water that I use to warm Ellie's bottle. So half and hour later I am ready to feed her, but a doctor, Administrator or a nurse stops by to talk to me or to look at Ellie. They leave and we are back to the microwave. Throughout this whole process I am carrying Ellie because there I can't just leave her in the room. So what at home would take about 5 min, takes about 45min in the hospital. That and the administration of her meds and TPN is another thing we have no control over when we are in the hospital.
It was also very hard to watch Ellie be afraid of nurses and doctors. When we were here the first time, Ellie loved all the nurses and never greeted any of the doctors with tears. But this visit was another story. She was clingy and very apprehensive of anyone new that came into the room. For the first few days she and I had to take naps together because she didn't want to be left alone in bed. It wasn't until the last day that she was okay with the nurses. But anyone in a white lab coat still got a good scream.
I am more worn out from these past five days than I was from a month in the last visit. It also gave me a very good lesson on how much control I have over Ellie's health. There are some things I can control. Colds, stomach bugs, hydration, and feeds. But, I have no control over freak things like whether her intestines turn inside out or not. It was a speed bump that they told us about, but no one thought that it would require another surgery to fix. This visit made me realize that we will be back at Children's more than we think and for things that we have control over and things we do not. We may be what the nurses referrer to as "Frequent Fliers."
The good news is that everyone was very impressed by her progress as Gib mentioned. She has gained over two pounds in just over a month and is taking decent sized bottles. She is walking and talking more and generally had everyone "saying wow she looks so Big!" So, it sounds like Gib and I are doing something right here at home. So we will just keep plugging away, stressing about Ins and Outs, changing diapers, dressings and feeding bags and having a great time playing with our girl.
Oh yeah and she now says "Ga" and that means Gus. While we were in the hospital you could ask her were Gus was and she would say "Ga" and look down and all around the floor for him. They had some quality reunion time this morning which included Gus trying to share his beloved Kong with his sister. It was a sight that the doctors and nurses at children's would have cringed to see. Don't worry I was quick with the antibacterial wipes.
Hey, look who joined team Ellie!
Wednesday, January 17, 2007
Ellie missed her dog and her coffee table.
Abby is exhausted from the last few days and I am on for tonight. As we left the hospital today, we realized that she hadn't left the hospital building since we got there on Saturday.
Shitty but I had to go to work. Work pays the Blue Cross fairy who takes care of the number with two commas....
And just as I had hoped, we got approved for MassHealth and its nursing today. We will start the ball rolling and hopefully will have night nurses again sometime soon. Ah, night nurses....
Ellie surprised everyone at the hospital with her growth. She weighs 8.47 kilograms for our science geeks and those in the real world, or 18.63 pounds for everyone in the US.
The nutritionist even wants to try a night off of PN each week after we settle down from this round of fun.
Hopefully we can get back to our home routine and get her out for walks if the weather warms up a bit like we did the day before her ostomy prolapsed:
Tuesday, January 16, 2007
But also very cute:Things have progressed very well and Ellie is off of morphine and working towards being tylenol free in the next few days. The hope is to have her home by the end of the week when we can get back to the way things should be after our unplanned visit to the Longwood Bed and Breakfast.
We got word this week that a friend of ours from
It is tough for others (Especially those with young kids) to think about having a kid that is sick, but we do it every day and know lots of other families that are in the same boat. Again, it helps to not feel alone and not singled out.
In looking for the often told analogy of planning a vaction
In looking for the often told analogy of planning a vactionthen making changes when a baby with special needs comes along, I searched for the story and found a very interesting blog about that subject which is coincidentally about another critically preemie baby http://screwholland.blogspot.com/ .
Support is a wonderful thing.
At the very least I will make sure that they have our home and cell numbers.
Monday, January 15, 2007
She is weaning off the morphine slowly and only gets a 'hit' of morphine every three or four hours even though she is approved to get it every twelve minutes. Today were are going to increase the time between doses and get her back onto tylenol which is the next step towards a drug free baby.
She danced and squealed for the doctors yesterday afternoon and is playing with us more and more.
Today we have clamped her g-tube and will let her process her own fluids for a while before starting on pedialyte and then onto formula sometime today or tomorrow.
With stitches and all of the other issues, it looks like we may be here a week before we head home.
Maybe the nursing will kick in by the time we go home....
Sunday, January 14, 2007
Ellie is doing as well as we could expect but pain is always an issue with her after a surgery and that made last night's long night even longer. Once again we are playing catch up with the pain monster but are much further ahead of it than we were last time. She is getting her morphine and has finally gotten a little bit of sleep this morning.
We are trying out hardest to stay away from being the pissed off parents who had to return to the hospital. It seems like return visitors get angry that they have to come back We are glad that this is our hospital and really glad that we are back with our team of nurses. I think that the nurses are are used to seeing grumpy parents and seem to be treating us apologetically.
We are not grumpy and know that this is just part of the game and that there is nothing that we could do to avoid this. Shit happens.
Ellie will sleep today and tonight and then we will think about feeding her again. Hopefully we won't have to start at square one again.
Two steps forward, two steps back.
You do the short gut hokey pokey and you turn yourself around.
That's what it's all about.
Son of a......
So it is time for real surgery. They will open her up through her old scar (they should put a ziploc on that thing) and pull the ostomy back in from the inside and put new stitches around the ring to hold it in place.
It will be a few hours before they are done and we are settling in in the waiting room while they take care of business.
Then we head back to our hospital family on 8 west. We made every plea in the book to get back there and it look like there is a bed for Ellie when she is done with surgery.
Ellies ostomy used to be a nice, pink rosebud of ostomy. This evening it swelled to be beet red and the size of a plum. Nasty and angry. and the tight hole in her belly constricted it and made it worse.
We gave a call to our surgeon around 8:30 tonight (have I mentioned how nice it is to ahve the man on speed dial?) and he sent us to Children's to. the Emergency Room where we got the express treatment both because they knew we were coming and because infants that have their own IV go to the front of the line....
After everyone and their brother came to take her pulse and listen to her lungs and heart we spoke with the surgeon of the night who suggested that we sedate her and see if making her relax will allow her ostomy to shrink.
We thought that this was a good idea but insisted that the doctor talk to Dr. Jennings before we did anything. We weren't pulling rank for fun or to show the doctor that we were connected, but wanted to make sure that we were doing somehting that he agreed with. He did and up to the third floor waiting room we went.
At midnight she went into the OR and we just heard that after she went ot sleep on anesthesia the ostomy went down and 'popped' back in after some coaxing and manipulation.
She will be admitted tonight for the night and maybe longer to watch and see what happens. If it pops out again we will be looking at real, cut her open, surgery. That's not good for anyone if we can avoid it.
Crap. The hospital sucks after you have seen what home is like.
Monday, January 08, 2007
As some of you may remember a while back we wrote about a little boy that we met at Children's receiving a Liver, small bowel and partial pancreas transplant. Many of you have been asking how he is doing so here is an update.
He is doing very well. He is out of the ICU and has settled into to spend a while learning how to use a full set of intestines and healthy liver. Amazingly enough he was able to keep the 18 cm of small bowel that he had so now he has more intestine than most people. He is having normal baby poop and his parents are looking forward to being able to feed him anything he wants, even junk food.
His new liver is doing well. There were some signs of partial rejection early on, but everything seems to be getting better. His blood numbers that indicate liver health look better than they have looked in a long time.
He still has a long way to go but is definitely on the up swing from where he was, and that is great news. Life post transplant can be hard but, it is what this little boy needed. At this point his has almost fully recovered from the surgery and now his body is just struggling to learn how to use its new parts.
His parents were able to meet with the pathologist and get a look at Christian's old liver. Now this may be a bit gross for some of you out there but below is a link to a video of the liver and what the pathologist said. I find it fascinating and one of the best visual aids as to what doctors mean when they say "liver damage."
This is your liver:
This is your liver on TPN:
I thank Christians parents for posting the video so that we could put it on this blog. I hope that other short gut parents are able to see this video and get a better understanding of what TPN does. Christian is a very strong little boy, once again he is my proof that these kids make us adults look like wimps.
We hope and pray that by using Omegaven and not intralipid Ellie's liver will not end up looking like this. She has had two liver biopsies in the time that she was in the hospital and both times they said there was mild scarring but no inflammation. Their theory is that the scarring, since it is not getting worse, could have happened in the beginning when she wasn't on Omegaven. They also said that its appearance was normal and not green.
We also realize that Ellie was only the 23rd infant to go on Omegaven and that there has been no true testing done, so we realize that she will not be out of the woods until she is off of TPN.
Sunday, January 07, 2007
Now onto the news for the day-
One of the hints of advice that we got in the early stages of this adventure was from the folks at the Oley foundation that specializes in people (big and little) who are on either TPN or tube feeds. Their bit of advice was to get organized when you go home because the amount of stuff that coes from the delivery truck is overwhelming. Our supply companies are local so the orders come once a week and are manageable in size but it still is quite a chore to handle all of the sorting, counting and checking of each order to make sure we don't get to day seven of a week long oder and find out at 5:30 PM that we are short one tiny plastic piece that is vital to Ellie's TPN for the night that is due to start pumping at 6 PM.
I am learning that another of Abby's hidden talents is dealing with shipping and receiving. This goes along with her uncanny ability to talk to people like plumbers, electricians, and Perry, the guy with the IV company who she is now on a first name basis with who bends over backwards to make/keep Abby happy. I'm glad that I am on her team.
We are getting good at the organization part and have each part in its neatly labeled bin instead of the box full of stuff that would live in the corner if i were responsible for the project. Now we can set up her TPN for the night in around 20 minutes start to finish. If, that is, we remember to pull it out of the refrigerator at noon so it is warm. If we forget, one of us has to hold the icy bag next to our body to warm it up......
A need for another kind of organization is also coming to the surface and we have been talking about establishing an organization to give information, support and advice to pediatric short bowel kids and their parents. We found out long ago that there are a surprising number of kids with this condition around the world and around the country and so far it has been a combination of digging through the internet, participating in obscure email chat rooms and meeting parents at children's that has given us information about all sorts of issues that concerns short bowel kids.
Whether it is the little tip to use Panty liners to dress a G tube or the huge tip to get Ellie on Omegaven, there is a huge amount of information out there and we want to get it together somehow to make it easier for the next family that hears the word short bowel syndrome, TPN, and liver damage....
The Oley foundation has been great, but it covers such a wide range of ages and diseases that it is tough to find folks that are in your boat. Having a short bowel group would accomplish this task and share what we learn with the world.
We're not sure how to make this happen but I have some ideas about how to get the ball rolling.
Saturday, January 06, 2007
No, really, her cousin Alex was playing in a regional, select kind of student concert band in lovely Lowell so we dressed her up in fun dress, packed her up to see the sights and watched at least half of the concert. I think.
She really enjoyed the music, but especially loved the applause and could be heard above the crowd when the clapping stopped.
We also had the latest in our series of on the fly judgments and changes of plans to keep Ellie away from sick people. At the concert we learned that Ellie's other cousin Claire wasn't at the concert because she had a fever of 102. Oh, crap 102 means possible infection- infections travel- we don't want to be near anyone who has been near Claire.
I think that most people understand our elevated sense of caution about infections. I hope that nobody was offended that we kept our distance and didn't get anywhere near anyone from that household. That's just the way things are around Gut Girl for the time being.
We had a great time and Ellie drew upon her hospital roots to fall asleep in the middle of the loudest part of the band concert. Cymbals, drums, trumpets, sound asleep all the way to the car and then all the way home.
I guess the music took it out of her.
Friday, January 05, 2007
He is a very gentle boy and stands her playing like a champ.
We watch them constantly because he also likes to be the A number one child and has been strange around us since we have come home.
I think he just missed us.
She is supposed to get 6 ml of Omegaven per hour from 6PM to 6AM for a total of 72 ml every day.
At midnight last night the pump alarm went off and told us that the bottle, which holds 100 ml, was empty.
Curiously, the pump told us that she had only gotten 36 ml.
Too much of the old lipid (the intralipid 'white poison' ) going in too fast can make kids very sick and has been known to go through baby livers like roto rooter causing serious damage. This was an eye opener.
The way we saw it, three things could have happened- 1) the pump gave her more Omegaven than it told us, 2) the 100 ml bottle only came with 6 hours worth of Omegaven, 3) there was a leak somewhere and the bottle had drained somewhere other than into the IV line.
Our guess was that the first option was the case since there wasn't a puddle and we would have noticed if a bottle had been half filled. We called the pump company and Children's and at 12:30 AM we got not only the nurse practitioner who handles TPN, but Dr. Puder, the Omegaven doctor on the phone. They both told us that it is something to watch but their experience with Omegaven is that even when a whoops happens, the consequences aren't bad. Some kids have gotten 12 hours worth in 12 minutes without a problem. The fish oils just doesn't tear up the liver like the soy.
So after that bit of fun and games, we finally got to bed around 2.
Ellie only woke up once to tell us to turn off the light.
We'll have a new pump this afternoon but we will be watching it very carefully.
Wednesday, January 03, 2007
Feeding Ellie is a trial and error experiment in two parts- what she will eat and what that food does to her tiny little short bowel system.
We tried rice cereal with her while back and had mixed results. She didn't quite know what to do with food in her mouth but swallowed some of it before spitting the rest back. Honestly, the stuff tastes like watery cream of wheat with too much salt so I am not surprised that she isn't so keen on it. Then in part two, her ostomy started spewing out more liquid, which made us slow down on it for while.
Today we tried again and will see what it does.
Today we also tried bananas for the first time and you can see what her reaction was in the video . Hopefully fruit will be a good thing for her.
Apples were fun and she will suck on a chunk through the mesh before putting it down for Gus to find and slobber all over. We're not sure what it does to her GI tract.
Watching her eat is always good fun:
We are going very slowly and will add stuff as we go if it works for her and works in her.
Most nights it took half an hour to get the nurse up to speed with the big picture plan and the report for the day and then we would go to bed and sleep. Really sleep. It was nice to have those hands there for the overnight period so we can recharge for the next day.
Last night we went solo for the first night. We had the other three nights over the holidays to get ready for it an practice the new routine but last night was go time.
Ellie's various plumbing needs care every three hours during the night. Not just a diaper change but real care that needs clear thinking and needs us to be truly awake. We have come up with a plan that will let one of us take the early and late spots at 12 and 6 and the other one gets 2 and 4. The 12 and 6 person gets to sleep for a long stretch in the night and the middle person sleeps in in the morning from 4 'til 7 or 8. It isn't great but it works.
Fortunately there is the possibility of help on the horizon. How far off that is depends on the Massachusetts state health care system that is in the process of determining what Ellie's status is and what nursing they will provide. It has been a while since we applied for 'MassHealth' and we are still waiting for them to make the call that Ellie is 'disabled' and needs special care. In my book three extra holes in your body and two pumps that you need to live make you disabled automatically but they need to make the call officially. The information that we have gotten from the nursing agencies is that Ellie will get between 10 and 12 hours of nursing a day if she is like other kids with her accessories.
So for now we adjust and learn a new nighttime routine.
We can do it but there will be some long nights to come as we bump up Ellie's food and try new drugs which sometimes make her very grumpy, especially as she sleeps.
Monday, January 01, 2007
Let me tell you that it sure is nice to have a surgeon that calls you back on New Year's Eve.
Ellie is eating between 200 and 250 ml (about 7 ounces) per day from her pump and also through her mouth. This is right on the schedule for advancing her food that the doctors want us on (adding about 30 ml more per day each week).
She eats as a combination of bottles and through her feeding pump. Bottles are always preferred but the pump is great for the middle of the day or if we have to go somewhere when Ellie won't take a bottle. We can hook her up and by the time we get home she has had half a day's worth of food. The pump is a dangerous toy, though, and it would be very easy for us to put her on the pump all the time and forget about bottles until we try and feed her by mouth a year from now and she has a nicely functioning gut that she can't get food to.
The combination is working well and she still likes to eat by mouth. If we were racing to get her fully fed to save her liver it would be different, but with Omegaven the rules have changed and we have the luxury of letting her learn to eat slowly.
She continues to do everything that she should and keeps us entertained all day.
We are still scheduled for a visit to Children's in two weeks, but may go earlier to get her blood tested if she continues to drain out her ostomy like she is. 11 miles for a blood test with the home team isn't all that bad. In fact, Children's thinks so highly of their lab that they won't let anyone else do their labs for them.