Archive for March, 2009

A Peek Inside


March 31st, 2009

Nora had her upper GI with small bowel follow through yesterday. We haven’t seen the official report yet but what we saw on the monitor and the comments made by the radiologist were very encouraging. Her small bowel is uniform and there is no bowel dilation. The unofficial guesstimate made by the radiologist is that her small bowel has at least doubled if not tripled in length since her initial surgery which would put her up to 9-13.5cm from starting off with 4.5cm. We are very anxious to hear the actual measurement. The radiologist who did the procedure, Dr. Albright, was the one who did Nora’s original upper and lower GI’s on the day she was born and also when she was a week old. He remembered Nora’s case very clearly and was excited to see how well she is doing.

When the barium was in Nora’s small intestine, it sloshed back and forth several times before emptying into the large intestine. Dr. Albright said this was something he doesn’t ordinarily see, usually it just goes straight down or it may slosh a couple of times but not as much as Nora’s did. It will be interesting to see what Nora’s GI doctors have to say about it and if this is something commonly seen in short bowel patients. Regardless is was a very exciting for me to see with my own eyes that Nora’s small intestine is holding onto substance longer than the norm for whatever reason.

Nora also had a complete abdominal ultrasound which surprisingly was harder on her than the upper GI. The tech had to push pretty hard on her tummy to get all the shots and it was obviously uncomfortable for her. All along I was worried about her not drinking the barium and being upset about having to fast for 5 hours beforehand but she stayed happy and drank the unflavored barium down like it was juice and was then upset when it was all gone….only a taste our Nora could love. :) We’ll be sure to post more details when we get them. Here’s Nora awaiting to drink her yummy chalking drink.

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Nora is feeling much better from her cold last week but she’s still a bit snuffy and it seems now it’s Daddy’s turn to have the cold. Hopefully we’ll all clear up soon and not keep passing it back and forth to each other.

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It was bound to happen eventually….


March 25th, 2009

Sooner or later we knew Nora would catch a cold even with all of the precautions we take to protect her from germs. She started sneezing and getting a runny nose last Friday. (how ironic it was the same day I prematurely celebrated the end of cold season being near in sight on Nora’s blog) We at first thought it was just allergies since everything around here is covered in a blanket of yellow pollen and Nora had been playing outside a lot that day. But then by late Saturday afternoon it was apparent that she had a full blown cold and was running a low grade temp. Thankfully it never reached above 100.8 and it went back down below normal after one dose of Motrin. Had it gone above 101 we would have had to take her to the hospital just as a precautionary to rule out a line infection.

Sadly but not surprisingly I’m pretty sure she caught it from me. I came down with what felt like a cold the weekend after we got back from Birmingham but since Nora and Montana were fine I chalked it up to bad allergies and I didn’t keep my space from Nora like I should have. Although it probably would have happened regardless just with us all living in the same house but I still feel bad that her own mommy gave Nora her first cold. :(

Nora has been feeling pretty miserable off and on but like a trouper she hasn’t been too cranky about it. Until it’s time for sleep…she’s either very stuffy or choking on drainage when she lays down so she has no interest in sleeping until she can’t stay awake any longer. When she starts getting tired she puts it in overdrive and runs herself out until she just crashes. There hasn’t been much transition time between awake and asleep the past few nights. The usual wind down and read books routine has gone out the door. Poor sweetie was so tired yesterday but would start coughing when she’d lay down so she fell asleep sitting straight up in the rocking chair. Rest is what she needs but hasn’t been getting very much of and when she does it’s not good quality sleep. We’ve been trying to keep her head elevated at night but she is such a wiggle worm we have to prop her back up all through the night.

Thankfully she’s showing improvement today and hopefully she will wake up feeling much better in the morning. Her nurse came by yesterday and listened to her lungs and they were clear. We have an appointment set up for tomorrow with her primary doctor since today is her fifth day of it but hopefully he will think she’s on the mend.

Nora’s weight had just started picking back up the past couple of weeks so hopefully this cold wont push her back down. She hasn’t had much of an appetite since she’s been sick and is mostly just drinking Elecare and munching on little snacks but no real meals. At least one good side effect of that is her poops have been smaller and thicker than usual.

Nora was supposed to have her upper GI and liver ultrasound this week but we rescheduled for this coming Monday. With no g-tube we have to count on Nora drinking the barium dye to avoid a tube down her throat. We don’t want to put her through that if we don’t have to and want to give her every chance to avoid it. At least the little amount of small intestine she has is in her favor for this procedure and she only has to drink a fraction of the amount as usual.

Here are some pictures taken during Nora’s visit with her Uncle Kia at Mammie and Pappy’s last weekend. She had fun playing cars and shaking shakers.

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Happy first day of spring!


March 20th, 2009

Here’s to looking forward to many more sunny days of berry inspecting and short sleeves!

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These pictures were taken a couple of weeks ago but I thought it was a good time to post them in celebration of cold season ending soon…..hopefully. No more cold season = more time and interaction with family and friends for Nora. :)

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New GI Team for Nora!


March 18th, 2009

Well I guess I need to start by retracting the statement I made in my previous post about there not being any good short bowel care in the south. A few weeks ago we learned of a short bowel program at Children’s Hospital in Birmingham, AL. We called them up, liked what we heard and took Nora up last week. It is definitely a trip, between 6-7 hours each way (depending on how often Nora needs a break) but once we got there and met the team we realized that the effort to get Nora up there was well worth it.
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A sleepy head Nora getting ready for the trip. (and no, we didn’t put her in there)

The Children’s Hospital at UAB has been treating short bowel patients for a long time but their short bowel program with weekly clinics is fairly new, it just started up last fall. Even though the program is new the team is made up of very knowledgeable and experienced pediatric GI doctors who are eager to stay on top of the latest short bowel research and treatments. They even have Omegaven! They still have to obtain individual FDA approval for each Omegaven patient but they are working to get FDA approval for the entire hospital so they can be a provider. Many hospitals from all around the south are sending very sick short bowel babies to Birmingham for their treatment and Omegaven.
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Daddy and Nora in the lobby at Children’s

Our experience with the short bowel team in Birmingham was like night and day compared to Nora’s previous GI care at Shands. The word “team” being emphasized because they truly work as a team. Their team consists of a pediatric GI specialist, a pediatric GI surgeon, their head GI nurse (who handles the Omegaven) and a dietitian who specializes short bowel. At Nora’s appointment they all came in together to discuss Nora’s situation. Communication and responsiveness is key to good short bowel mangement and so far they have proved to have both. Before we even took Nora up there we received more feedback and were responded to far more quickly than we ever were at Shands. I guess to sum it up, they just “get” short bowel syndrome. They understand that each patient is different, they understand that just because Nora is doing great that she is still very fragile and in need of being treated as an individual. It was such a breath of fresh air to have open discussion with new ideas and to have new treatment options presented to us instead of us presenting ideas to the doctors. (not that we wont continue to do our own research, but it is a very comforting feeling to know we’re on the same page of wanting to progress and be pro-active with Nora)

The general plan we discussed for Nora was as follows:

  • add more complex carbohydrates to diet
  • add more fiber to diet
  • decrease fat intake
  • concentrate on a low oxalate diet
  • add either pectin, Benefiber or Questran to diet to slow down food transition time in the gut to increase absorption and in turn thicken stools
  • check plasma citrulline level with next set of labs – plasma citrulline is an amino acid produced in the liver and intestine, new research is finding that checking this level can be an indication of nutrient absorption through the intestine and is being used as a guide to predict successful weaning down of TPN
  • to do an upper GI w/ small bowel follow through – this will show how much Nora’s intestine has grown since her initial surgery, show if there is any bowel dilation and show the transition time (how fast things move through the intestine). All of this information will help them help us manage Nora’s SBS better.
  • do an ultrasound of Nora’s liverĀ  – they suggested this to be done because they have seen in some SBS children (not many, but some) who suffered pre-Omegaven liver damage to have permenant liver damage even though the bilirubin and liver enzymes returned to normal. They do not suspect this to be the case with Nora but just want to rule it out with a non-invasive test.
  • adjust Nora’s TPN recipe according to her labs

Montana and I are on board with all of their suggestions and are very excited about them. Nora will be having the upper GI and ultrasound next week. They really wanted to do it in Birmingham but when we told them how traveling has messed up Nora’s system in the past they were very understanding on why we didn’t want to add one more stress to her system at that time and did not push us to do so.

Overall Nora did very well on the trip. It was the longest distance she has ever traveled. She only got really fussy during the last hour or two going up and back. Oh how thankful we are that our car has a DVD player! We made lots of stops along the way for her to get out and run around. On the way home we let her pick out a new toy at a truck stop to keep her entertained. They had girly toys galore but what did our little princess pick out….a snake! Montana and I thought it was too funny and was perfect for her tough little self.
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The trip was very tiring and it did have it’s stressful moments….like getting extremely lost when we first got into town then switching hotels at 10 o’clock at night after realizing the one we had booked over the internet was not appropriate for Nora. Even after we found a more comforting place to lay our heads, me with my germaphobeness had a huge amount of anxiety about having Nora in a hotel room, even after bleaching and Lysoling every surface. But it all worked out fine in the end and the highlights definitely outweighed the negatives. Nora even had her first in-person meeting with another short bowel child at clinic! Little Emmanuel was just a little older than Nora and he just happened to be the first baby on Omegaven in Birmingham.

They want to see Nora again in about 8 weeks. They don’t have a set time schedule on how often they see each patient, they base it on the individual child’s condition. They are very willing to work with our local doctors and do a lot of communication via e-mail so we can keep them up to date on how Nora’s doing. They’ve been working with Dr. Crooms’ office on the details of the upper GI for next week which makes us feel oh-so much better about the procedure and having Dr. Croom’s involved is always a plus. It was originally scheduled for this week but Dr. Crooms wanted to have the preferred pediatric radiologist take care of Nora and he is out this week. Which radiologist may sound like a small detail when it comes to a common procedure for SBS children but to us it makes all the difference between dreading next Tuesday and knowing that she’ll be in the best hands possible.

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