Thursday, June 29, 2006
Wednesday, June 28, 2006
On one side we have the most doctor who is taking care of Ellie's fish oil, which she has been on for a long while. Her liver numbers have followed the trend of other fish oil babies and has peaked and fallen on schedule.
On the other side are Ellie's primary doctors who are coming into the scene and claim that because she has successful surgery that her liver has started to behave, even though her liver started toto move towards behaving well before her surgery. From their view, the fish oil might just as well be snake oil. Abby and I think that this is because the fish oil isn't their project. They also told us today that, curiously, some kids have a sudden improvement in their liver function even when nothing changes on their TPN. we had never heard this before which is curious.
The good thing in this debate/struggle is that everyone has Ellie's best interests in mind and that her course of treatment won't change because of it. We are all still trying to get her fully fed and off TPN.
We had been warned about things that happen in academic hospitals. I guess that this is the first case of it with Ellie. I hope that we ahve more successes to fight over in the future.
She is now up to a whopping 9 pounds, 5 ounces. All without a significant amount of food and without serious damge to her liver.
She has also progressed on her feedings to 5 ml/hour and hasn't shown any problem with this amount so far. She is happy, pooping, farting and not vomiting or even gagging. We realize that at some point in this progression of feeding Ellie will reach a wall where she can't tolerate any more food and we will ahve to ride along at that level, but for now, she hasn't gotten to that point and we keep moving up each day, trying to find where her limit is.
Right now, at 5 ml/hr (~125/day, 4 ounces per day) she has gotten tot he point that her feedings are in fact feeding her. Because of that we may have to adjust her TPN to slow her growth down over the next few days. This may mean more time each day off the TPN, or we may reduce the rate at which she gets her TPN infused. I hope that it is more time off, but it is not my call.
Good news. We like good news.
Monday, June 26, 2006
No great news but tiny steps towards the goal which the doctors tell us may be somewhere near 25 or 30 ml/hour.
Saturday, June 24, 2006
First off, the results of the bloodwork came back today and cleared Eleanor of a central IV infection, which is good. Line infections are Scary with a capital S and you don't wnat to know the statistics on what happens if she gets one that gets a foothold. So she is off the heavy antibiotics and went back onto food onThursday night. 1 ml every hour. drip. drip. drip.
That progressed well through Friday and we even gave her some food by bottle which she thought was just great.
'You mean sometimes when I suck on the binkie, food comes out?'
Friday afternnon, things were going so well that we increased her food to 2 ml/hour and she did just fine on this until mid evening when Gassy Girl decided to spit up a little of the milk that had gone in through her G-tube. I thought that it was no big deal. I assumed that I had missed a burping and she showed me that she was still Gassy Girl, the child of Gassy Guy and Evervescent Abby. Bubble bubble, squawk, wheeeeze, wheeeeze. Then a quiet that makes me really nervous as she clears the liquid from her throat. Then a really loud set of wheezes.
IT is still scary even though I can predict the sound effects.
It is now 4 AM and. after a quick wardrobe change, Ellie is back to sleep and back to the land of no food. At 3:30 she decided to barf for distance with a little bit of milk and a whole lot of gas which made a dramatic entrance all over her fancy PJ's that she is finally long enough to wear.
I can still go upright from a deep sleep in two seconds.
So we are in a holding pattern until morning when the doctors, and more importantly Abby, arrive to assess the situation.
I am still not upset or discouraged. Amazingly I was having a dream about meeting a discouraged parent when Ellie woke me up tonight.
Doctor Freud. Paging Doctor Freud.......
Thursday, June 22, 2006
Wednesday, June 21, 2006
My first blog post that has been removed by the editor, me.
As soon as the doctors told us that they were encouraged by Eleanor's progress and ability to move forward with her feeding (from a whopping 1 ml/hour to 2 ml/hour), she goes and decides to start spitting up her food along with some nice green bile. Not a lot. Not even enough to need to change her clothes.
All engine stop. Circle the wagons.
Bing bang boom, in one hour this afternoon we had a new x-ray or her belly (all signs are good down there), a culture of her blood, a count of the cells in her blood ('CBC' is a Complete Blood Bount if you ever wondered what they were saying on ER) and a fresh new prescription for some baddass antribiotics (Vancomycin) to nip any infection of her central line in the bud.
So much for the great progress. Now we stop and wait to see what the deal is with today's problems.
No food. Just some prime Ellie watching. Which, on the bright side, is going very well. She is up and smiling, cooing, and looking around all day and is very active. These are good signs that may show that whatever infection she may have is early in its progression and we hope that we can deal with this and kepp on the food wagon some time soon.
Another bright note for today- Ellie's blood test today was an opportunity to get another bilirubin test to see how her fish oil feeding is going. Her numbers continue to go down. 1.6 is her new number. down from 4.4, a few weeks ago and 2.3 on Sunday. the graph shows how she has progressed with omegaven. The graph of other kids would be a line upward, towards a transplant, hopefully Ellie won't go that way.
Tuesday, June 20, 2006
Hello it’s Abby again. A few days ago a good friend of mine stopped by to visit. She brought good tidings, gossip and the first season of LOST. Not knowing what I was starting I innocently put the first DVD in the player and thought I will just watch one episode to see what it is like. Ok, so now it is two days later, 5 DVDs later and… I am willing to admit it, I have a problem.
It is the best show ever! You can’t look away because there are so many little things going on at all times. This works well for me because Ellie is in a stage where she wants to be held all the time and feels that the best place to sleep is on me. So I have a few hours every day where I have to hold still and just let Ellie sleep.
For the past 2 days she has been getting 1ml of breast milk every hour and doing very well. We have changed more poopy diapers in the past two days than we have in her entire life. Today she is going up to 2mls per hour. She is getting the milk through her G tube and during the 4 hours that she is off the TPN we also take her off the milk pump and give her the milk by bottle.
She is such a rock star that she hasn’t forgotten what to do with a bottle. We are only offering her 4mls today, but when it is gone, she wants more. Hopefully this is a pattern that we can keep to with at least one bottle everyday to keep her mouth doing what it was made to do.
I believe that the milk is making her more comfortable, because when she does sleep she is starting to dream. Other things she is starting to do; smile, flirt, coo and speak baby language, grab at your shirt with her hands and sadly she is starting to recognize the nurses and cries when they get too close. She is also getting much bigger today she weighed 8 pounds 12 ounces much bigger than her 6 pounds at birth.
Saturday, June 17, 2006
This reversed some of the damage that the TPN has done to her liver and today we heard that her bilirubin number has dropped to 2.3, below the level where babies are visibly jaundiced. The other blood indicators has dropped significantly as well.
No wonder my mother commented on how pink she looked today. The bilirubin is not masking the real color of her cheeks.
1) She is awake and alert. we got her off the heavy drugs quickly and have resisted the urge to put her back on when she is in pain. Tylenol does the trick for almost everyhting so why use a bigger tool than you need?
2) Her bowels are moving and making good colored stools. I never thought that I could qualitatively assess a baby poop, but I am getting pretty good at it. color? texture? smell? I can describe them all in clinical terms.
3) Her stomach is in good shape and is moving its juices down steadily. We capped her G-tube at noon on Friday and so far she has handled this very well. Her stomach has been soft, she has burped like a good Brogan to control her gas and she is relatively comfortable with a bit of tylenol given to her in an un ladylike place every four hours or so.
She is still uncomfortable in her colon, or large intestine as things move through. Before this week's surgery it had only been used a tiny bit and had shrunken to be a 'microcolon'. As we teach it to behave as the surgeon told us, 'stretch it out like a tube sock', it is a bit grumpy but a little bit of tylenol takes the edge off and she is happy.
All this leads to today's big news that we are starting to feed her again this afternoon. Very slowly at first and given by a very cold and unloving pump, but we are going to give her some breast milk again and see if she can move that through as well as she has moved the other stuff through.
The next baby step is a bottle to get her mouth in on the action again and take advantage of all of those repetitions that she does all day with her binky.
Baby steps on the bus, Bob.
Thursday, June 15, 2006
The one strange thing for Abby and I is getting used to her cry in the days after she had a ventilator tube in her throat. It makes even the tiniest cry sound so sad.
The nursesworked the system for us to put a short term patient in our room while Ellie was in the NICU and then hold it for the day until we could get transferred. LEsson number one in the inpatient hospital manual should be to befriend your nurses-they are the real movers and shakers in the hospital. We have great nurses who love Ellie like we do.
Abby beat me up here and moved all of our stuff back in so in a creepy way it really is like we haven't left. Ellie doesn't even have any new scars, just a new G-tube and a better IV line and some monitors to watch her vitlas. she is even asleep like she used to be.I am still working on scanning the pictures of the before and after of her intestines from Monday. They are the best baby pictures ever and I bet nobody has internal baby pictures like these.
This morning we got the report of a 'huge poop' that came in the middle of the morning. Giddy up, the pipes are working after just three days of recovery.
Who said poop? I'll take some of that.
We are waiting and watching for more and hoping to get good action without an excess. A tricky midpoint.
Ellie is on to straight Tylenol (which is still a lot for an 8 lb baby) but is better than being on Fentanyl or Morphine. She is awake, alert, and a lot happier than yesterday when I was in visiting her.
We hope that there will be space in the inpatient room in the next day or so, but we still are in no hurry to get her moved until we are all good and ready for it.
Wednesday, June 14, 2006
In the meantime, we are in no hurry to get her out from under the watchful eyes of her nurse du jour. For us, the hospital is the hospital, we have dealt with the NICU before, and we'd rather be safe than have to make another return trip to the NICU.
No news on her overall recovery. Her epidural came out yesterday and along with it her Foley catheter, so we get to change diapers again.
we are learning about the new bells and whistles that she had installed on Monday. Her new Broviak IV line in her chest looks scary but is much better than the one on her arm. Her ne G-tube is much better and the long dangling tube can even be removed in the future when she doesn't need it leaving just a button on her belly. High tech plumbing.
So far so good. I have had four straight night's sleep in a bed and Abby and I are feeling fresh and ready for action. Abby is even thinking about playing soccer with her sister tonight in a women's summer league. Doctor's orders were to settle in so she got fancy new shin pads last night (man would a broken leg suck right now) and will be running around this evening.
Monday, June 12, 2006
I am writing this from the pumping room in the Children's NICU. yup, I am that comfortable witht he hospital world that I go while Abby pumps and do other stuff. The nurse wonder what the deal is with this guy.
So here is the latest installment of today's story:
This afternoon, Abby and I finally made it into the PACU (Post-Anesthesia Care Unit) and spent an hour or two with a groggy but with-it Ellie until she showed the nurses that she could do well without oxygen and was generally okay for a baby who had just had surgery. Okay enough to go back to the surgical care inpatient floor anyway.
Around 5 we made out way back upstairs to the plush penthouse private room and met my parents. They had patiently waited all day to see Ellie and my mom and dad had some time to see that she was doing okay. Their original plan was to spend the night in Boston and head home tomorrow after seeing Ellie in the morning. I suggested that they go home since she was doing so well and we were settled in for the night. We didn't have to ask my dad twice and off they went around 6:15. Babies in the hospital are a long way from his comfort zone.
All was good until 6:30 when i made the mistake of ordering dinner from the spectacular Thai place down the street, Brown Sugar. I hadn't hung up the phone when the nurse said to Abby that Ellie looked sleepy and that her monitor was showing a low heart rate, around 75 beats per minute, when it should be around 125 and the shape of her heart rate was funny.
In the next twenty minutes we had 11 nurses, 2 respiratory therpists, two pain management doctors and a partridge in a pear tree in Ellie's room, looking at our girl and trying to get her to wake up, cry, screm, whimper or anything lively. We simply couldn't get her get into gear.
It turns out that in addition to her epidural pain medication, Ellie got a dose of Morphine today. The morphine was taking abit too much of the edge off of her pain and leaving her pretty dull.
After tense few minutes with Abby in the middle of things (I swear she is going to get a job offer in a few days), someone alertly pulling out the resuscitaion mask, my eyes getting wide like pie plates, and a trip to get the take out that I had ordered, we had Ellie loaded up for a tip downstairs to spend a few nights with the nurses in the NICU and a bag full of really good thai food. Ellie came first. The thai was till good cold.
They have given her Narcan to take away some of the dopey parts of the Morphine and she is doing much better, crying for us as the new drug are taking effect.
She should be here under the watchful eye of the NICU nurses for a while now, which is just fine with us. Considering the relatively serious surgery that she had, having a dedicated set of eyes watching her will amke us sleep a lot better. Also we both will slepp full nights while she is in the NICU which may be a welcome chance to recharge our batteries, come to think of it.
She is on the mend nomatter where she is and we aren't going anywhere soon, just on the mend in a new place with a new team of docs and nurses.
We lasted exactly 15 minutes in the waiting room before we decided to heed the advice of another mother who suggested that we go shopping during Ellie's surgery. It seemed like an absurd idea until we began waiting and then it made absolute sense to go walking.
The nurse liasons got our cell phone numbers and off we went for breakfast. We got updates at 9, 10, and 10:30 advising us of her progress and then at 5 minutes of 11 we got the call to be back to talk to the surgeon. We walked 8 blocks in 8 minutes and met Dr. Jacsik all sweaty and wheezing(it has been a while since we have gotten to the gym).
He has a bunch of things to tell us about wat he had seen and done:
First, Ellie's bowel is significantly shorter than we had been told. Instead of having close to 45 cm of small bowel and most of her large intestine, she has just over 30 cm of small bowel and only 60 percent of her large bowel. This is bad news and officially puts her in the 'critically short' category of short bowel syndrome patients, but she is still better off than the patients that the doctors told us 'make them cringe' a while back who have less than 25 cm of small bowel.
Second, her bowel had developed an adhesion where the repared portion had turned and made a u shaped kink on itself and attached to the upper part. This U may have slowed things down, and was removed.
Third, the anastomosis (connection) was tight and slowing things down as we had assumed. This was opened in sugery and will hopefully open her up and move things along.
After Dr. JAcsik met with us he returned to the OR to finish up with Ellie and put a pleat in her dilated bowel.
All signs are good for now, not as good as we had hoped but now we know what we are delaing with and will play the new hand of cards that we have been dealt.
Boston ain't so bad in the fall, I guess.
Sunday, June 11, 2006
She is scheduled to go in around 10 tomorrow morning and the OR is booked for 5 hours, so by mid-afternoon, we expect her to be on the road to recovery. There is some uncertainty related to how she recovers and where. We hope that she will have surgery under an epidural and will come back here to her room afterwards without a load of narcotics in her system that she will need to process. If she needs narcotics, she will likely go to the ICU afterward and spend some days there while she recovers.
Either way we are set for the next step and understand that the next few weeks will suck for us compared to the relatively good life that we have been leading for the last few weeks.
We may not be able to hold her for a while. This will be tough for her and for us since we both dig holding her.
She may be back in an isolette bubble for a few days. Touching your baby through portholes sucks too.
So to get ready for this we spent the day hanging out with Ellie and doing all of the stuff that we like to do with her:
Holding her so she can show us how strong her neck is:
Taking her out in the garden to see the sunshine:
And taking a nap with her all wrapped up and unhooked from the wires that will come tomorrow:
Yes, the onesie is a custom made job from Abby's friends. It says 'I kick short gut butt'
We're doing alright and are remarkably calm considering what lies ahead for us in the next few days and weeks. We just remind ourselves that we have a great suregon who doing surgery that we are comfortable with and that we are moving the ball forward. At the goal line is home and taking our baby out to sit on our lawn.
Abby is in the hospital tonight and I am leaving soon to get a night's sleep before coming back early in the AM to get ready for the big day. Althoughwe appreciate the advice to go shopping that someone with a short gut baby posted yesterday, we will probably be here for the duration. My sisters brought all sorts of magazines today for us to flip the pages of and not really read as we wait.
More to come from the road to recovery.
Friday, June 09, 2006
we are going to Abby's sister's house for the night on Satuday to have a final recharge before the surgery. They are heading out of town so we can cook dinner and spend the night with the dog before we come in on Sunday for pre-op fun and games.
Ellie had another photo shoot today for a news story about volunteer knitters at the hospital. We dressed her up in her new dress for the occasion and tried to get photos of her without her Red Sox Binky.
No luck with that. But she is still a very well dressed little girl.
Tuesday, June 06, 2006
Well I thought it was just Gib and I who considered our daughter to be the cutest baby in the hospital. But today she just got booked to be on featured on the new tomorrow to help with fundraising for the hospital.
So I’m at the hospital tonight, I don’t mind staying here with her, she is really starting to recognize Gib and I and she is happy to spend hours just staring at us.
Then, hopefully, the door.
On Monday morning, bright and early, she will have another surgery. Dr. Jaksic, Ellie's suregon here at Children's is going to go in and look at her intestines and, depending on what he sees, either1) attempt to open open the bottle neck where her small and large bowels meet (the anastomosis) and put a temporary pleat innher small intestine to bring it back into a more normal size, or 2) disconnect her bowel and bring the open end to the surface as an ostomy (like a colostomy, but hopefully a bit less smelly). We are open to either of these options and have great confidence in Dr. Jacsik, who is being very flexible in his thinking an accepting of new ideas to go after her bowel without using the new STEP procedure that he is a proponent of but we are still unsure of.
So we now have a few days to catch our collective breath, catch up on some sleep, and then we dive headlong back into the chaotic life of having a baby recovering from surgery in either the NICU, the recovery room or up here where we ahve been for a while. We are crossing our fingers that Ellie won't need to go onto a ventilator after surgery, but that depends on how she reacts to anaesthesia, etc and is beyond our control.
My Parents are coming down to be here on Monday to give a hand, and a shoulder and Jennifer, Abby's sister will be here as well so we should be in business as we wait for the surgery to be over and the long hours of waiting afterwards.
My folks visted today and we finally remembered to get the first ever Brogan family photo as we sat in the garden this afternoon.
We also took some pictures of sunbathing Ellie:
Saturday, June 03, 2006
Hopefully anaother surgery will happen this week or next, setting the ball in motion in a new direction which hopefully will get us to the door, the ultimate goal.
We got back around lunch today and have had a very slow day, sitting around with Eleanor, and going for a walk to get lunch with her.
She is quite comforatbale snuggling in with us. Or the nurse. or a volunteer baby rocker. But leave her alone at your own risk. Apparently this morning was interesting without us here.
We got word today that friends of our had a baby last week in Florida. Another girl which makes it girls for three of us on the first try. Payback is a bear.
When we get together next, it will be a sea of pink. Oh, yeah the names are great, too: The group of girls are Mia, Eleanor, Audrey, and Norah. My guess is that there won't be many duplicates of those names in Kindergarten.
Thursday, June 01, 2006
First off the doctors all call each other by their first names.
I prefer to call them Dr. so and so. I think that this is related to me not wanting to think about some guy named Tom, or Bill or Joe operating on my baby, but I feel fine that Dr. Smith, Dr. Sullivan, and Dr. McGary are operating on her.
When talking about them, but not to them, Abby refers to them as Smith, Jones, and Johnson. No Dr. No Mr. No Bill or John.
There isn't a right way, I'm sure, but just something interesting that I have noticed.
We call all of the nurse by their first names, but it is rare that any of them call us by our first names and so far only one of them has called us by our first names.
She is great and is Ellie's lead nurse. If she said 'hey shithead', I'd turn with a smile since she is so great with Ellie.
I got a sir tonight as I left the hospital. I think that came from my appearance after 36 hours straight in the building, but it was wierd.
Ellie was sound asleep when I just talked to Abby at the hospital.
Her night in the barrel.
I hope her daughter cooperates like she did last night instead of the normal act she puts on for her Mom. We think that it is because Abby smells like food that Ellie gets upset and frustrated that she can't eat.
Lucky for me that my man boobs don't have the same effect.
Among the swag was a very cute girlie Sox beanie:
So damn cute the nurses still come to visit even if they aren't taking care of her that day.