Archive for the 'Nora Medical Updates' Category

Happy Grandparents Day!


September 13th, 2009

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Happy Grandparents Day from Nora!

Nora is a very lucky little girl, she has not just 2 sets of grandparents but 3! (since both of my parents re-married) and 3 living great-grandparents who love her very much. We didn’t want the day to slip by without making a post in recognition of grandparents because they are so very special. Some of my happiest memories as a child are ones made with my grandparents and I know that Nora is making those happy memories as well.

Nora gets to see 2 sets of her grandparents often since we all live in the same town. We wish she could see her Grandaddy and Nanny who live in Kentucky more often but the distance poses a challenge since traveling hasn’t been kind to Nora. But we can’t thank her Grandaddy and Nanny enough for making the effort to visit as often as they can and for planning to join us again this Thanksgiving.

Nora is very much looking forward to the day when she gets to go up to Grandaddy’s farm and she is already practicing her farm skills. Nora’s favorite song to sing these days is Old McDonald and I must say it is pretty darn cute if I do say so myself.

click here to see Nora singing Old McDonald – http://www.youtube.com/watch?v=zXl1Zg0C-gU
(sorry the clip is so short, my battery loves to die when Nora’s being extra cute)

For the past week or so Nora has been pretending that her wagon turned upside down is her “tractor” and this one specific hat is her “farm hat”. Introducing Farmer Nora. :)

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HAPPY GRANDPARENTS DAY! WE LOVE YOU!

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Back at home and doing good


August 29th, 2009

Nora’s port replacement didn’t go quite as smoothly as we had all hoped it would but the old one is out, the new one is in, she’s doing good and we’re back home. What Dr. Crooms expected to be a 45min. – 1hr surgery turned into a 3.5hr surgery yesterday morning. There were complications with threading the catheter in Nora’s chest vein but the amazing Dr. Crooms stuck with it and got it in. Since Nora was under for so long and lost a good bit of blood she was kept in the NICU last night and given a blood transfusion. She has three small incisions, one on the right side of her chest where the old port was removed, one on the left side of her chest where the new one was placed and one on the left side of her neck where an incision was made to guide the catheter.

Nora had a rough afternoon after her long surgery. On top of being sore from the procedure her newly placed line clotted off and had to be replaced which entailed taking the dressing off her newly cut skin and stuck with a new needle. We were all holding our breath until a new line was placed hoping that it was just the huber needle line and not her brand new port. (wheew~) Having to put a new port needle in right away was very painful for her so she was given a dose of morphine which ended up making her throw up. But thankfully after that she settled down and was able to get intermittent periods of rest.

Dr. Crooms came in first thing this morning and gave Nora’s discharge orders. We are all happy to be back home and have been resting up today after a long night. Nora definitely had some anxiety last night staying in the hospital but she was a very good girl and we are so proud of her for being so tough. As soon as she heard Dr. Crooms say she could go home she was all smiles and ready go.

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If you zoom in on Nora’s face you can see her happy smile behind her balloon with her eyes on the prize, the elevator. :)
(as you can see Nora’s face was still quite a bit swollen this morning from the blood transfusion and all the IV fluids)

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Time for a new port


August 27th, 2009

Nora will be having surgery first thing tomorrow morning to have her original IV port removed and a new one placed on the other side of her chest. We knew this day was coming sooner than later but we didn’t expect it to be quite this soon when we took Nora in to see Dr. Crooms this week. The last few times I accessed her port (put in a new needle) it felt “shallow” and Nora’s skin covering her port has been looking thinner and thinner. When Dr. Crooms looked at it he advised that it be replaced rather quickly since the skin had gotten so thin from growing, stretching and frequent needle sticks even though the port itself is still working fine. This is a very common thing that happens with ports and if the skin gets too thin it can actually pop leaving an open wound with and exposed port, which obviously would be a very bad thing.

Nora’s new port should last longer than her first one since she was just a tiny 2 month old baby when the first one was put in. She has done a dramatic amount of growth in the last 2 years and that is a very good thing even though we wish we could avoid her needing surgery. Even though we can’t help but be a bit nervous with our sweet Nora girl going under tomorrow, we realize how very fortunate we are that Nora hasn’t had to have surgery of any kind in over 2 years. And the fact that she will be in Dr. Crooms’ hands brings us a world of comfort. Even though port placements are usually done as inpatient surgery for children Dr. Crooms wants to send Nora home tomorrow afternoon to lesson her chance for infection.

Did I really say that things were medically boring around here just a few weeks ago? Well as soon as those words flowed from my finger tips to the keyboard Nora’s eating took a nose dive. Just like any typical 28 month old toddler, Nora has decided that there are far more interesting things to do besides eat. Even though we love for her to act like any other toddler her age unfortunately she does not have the luxury of this phase. She went from being a wonderful eater to barely taking a bird bite of anything and is not willing to drink as much Elecare. We’ve tried all the tricks to get her to eat more, but Nora stands true to her zodiac sign Taurus and can be very bullheaded when she wants to be. Her weight is dropping, her labs have seen better days and as of this week she’s had a scary amount of ketones in her urine (which can be a sign of malnourishment). So after discussing this with her GI docs we’ll be adding another day of TPN back until Nora decides to start eating better again. So starting next week Nora will go from 3 nights of TPN a week to 4. We wish this wasn’t the case but at the same time we are counting our blessings and know that 4 nights a week still isn’t very much and we are thankful to have TPN to help her through.

I’ll end this post with sharing some pictures of Nora and her new buddy Cynclaire, her second cousin from KY who visited last week. Nora took to her immediately and they had a great time playing and having a tea party. Nora shared some of her favorite snacks, even though arrowroot cookies and rice crackers were a first for Cynclaire she was a good sport to eat them with Nora even though they weren’t as exciting for her. :)

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Fun with food


July 19th, 2009

When dealing with short bowel syndrome food and eating is full of challenges and aggravation. But at the same time it can also be very exciting when new food doors open. Nora’s diet is still very limited but her tolerance to a wider variety of foods is growing and that is definitely something to celebrate. :)

We have been having lots of fun with food lately.
I’ll let the pictures tell the story…….
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Nora the chef helping to make some Nora friendly (gluten-free) banana bread and muffins.
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Nora loves fruits and vegetables. She has a very healthy taste for veggies but unfortunately can’t tolerate a lot of them. Even though Nora cannot eat a lot of fruits and vegetables, she still has a great time exploring and playing with them. Going to the local fruit and vegetable stand is one of her favorite adventures and she gets big kicks out of picking fresh fruit and veggies.
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Picking pears in our front yard with Daddy.

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Here Nora is modeling a buttercup squash grown just for her by my good childhood friend Jen, a.k.a. Aunt Jenny. Nora enjoyed eating it just as much as she did being silly and playing with it.
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Nora had a great time inspecting the corn from Aunt Linda’s garden yesterday afternoon.
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Playing with fruits and vegetables is what kept Nora entertained while she got her first haircut, well more like a trim, but it was still one of those monumental “firsts”. :)
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Since Nora has such little hair, I didn’t want to have even one strand of it cut off but her top wispy layer was starting to look pretty scruffy so the deed needed to be done.
Nora had no interest in sitting in the chair with a cape on so Aunt Linda did a great job of following her around and stealthily cutting her hair as she played.
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These last pictures have nothing to do with eating or haircuts, I just wanted to share them because my baby girl looks so darn cute. :)
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Maybe next year


July 5th, 2009

Last week the Oley Foundation held its annual conference. For those of you that are unfamiliar with Oley, it is a wonderful non-profit organization for people who have to rely on TPN and enteral feeding for nutrition. They fill a great need providing medical information and emotional support to people in situations like Nora’s and their families. The annual conference brings together patients from all around the country to learn new information and meet others living with similar conditions. This year’s conference was held in St. Petersburg, FL, still a bit away from us (4.5hrs) but a lot closer than where some of the other conferences have been held, like CA and NY.

We really wanted to get Nora to the conference this year and knowing that her fellow short bowel cyber friends Ellie and Bo were going to be there made us want to have Nora there even more so. For Nora to have met them in person would have been awesome and very emotionally healing (maybe more for us than her at this point). Especially since Nora said “he’s just like me” after watching a video of Bo with his coiled TPN tubing. Ugh, talk about tugging at her mommy’s heartstrings. So making the decision not to go based on Nora’s bad traveling history was a very hard one but ended up being the wise choice. Nora came down with a bad summer cold and fever the day the conference started. Had we been out of town when that happened it would have been awful. So we’re setting our sights on next year’s conference in hopes that Nora will be a much better traveler by then.

Nora is all better from her cold besides from a lingering runny nose and cough and thankfully she weathered it much better than I did. I ended up getting sick the day after Nora and ran fever for days instead of only one like she did. I had not been that sick in a long time. I’m glad it hit me harder than Nora showing that her little immune system is in better shape than mine these days. Very good news for Nora and lesson learned for her mommy to start taking better care of myself.

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Hello Mr. Duck, I can outlast you in the game of chicken any day………

Even though out of town adventures aren’t in Nora’s favor just yet thankfully we have our trusty ducks to visit at Lake Ella that are always up for some fun. :)

Other than Nora catching a cold she has been steadily progressing upwards since going back on TPN. She’s up to her usual tricks and advancing speedily in her developmental progress. Just like when she started walking after never really crawling much, she never showed much interest in sippy cups but she is all about drinking from “big girl” cups and mastered how to drink out of them without spilling it in a very short period of time.

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We’ve been trying to get more creative with Nora’s diet lately so she doesn’t always feel like she has to eat differently. Pizza is a frequent meal of ours, probably a little too frequent, but none of the ingredients pizza is made with Nora can have….no wheat crust, no cow’s cheese and no acidic tomato sauce. So Nora’s pizza is made with either rice or corn crust, goat cheese and baby food carrots in replace of tomato sauce (sounds a little gross but it’s actually very similar tasting to regular pizza). Nora knows no different and loves it. Ultimately Montana and I want to get on the Nora diet so we can always eat the same things together as a family and besides, Nora’s diet is much healthier than ours anyways.

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Now that’s amore’!

I finally got daring and cooked Nora some fish, fresh flounder, which is a very mild, flaky fish. Trying new meats with Nora always makes me a bit nervous but she loves flounder and thankfully her digestive system likes it too! We’ve yet to try any red meats with her yet since they are harder for any digestive system to digest. I think we’ll just stick with chicken, turkey and try new kinds of fish for now and keep trying to expand her diet in other areas.

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“I feel much better!”


June 19th, 2009

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That is what Nora told us after just one night back on TPN. Where as the few days prior she had been telling us that she felt “sick” when we asked her how she was feeling. The poor sweetie had a really rough weekend and really went down hill fast after the Birmingham trip last week. Her weight took a nose dive and her labs from Sunday showed that her body was struggling with very low blood platelets. So after 25 days without TPN and Omegaven we resumed our version of “normal”.

Even though we’ve been doing the TPN routine for over 2 years now, it’s very easy to get used to the freedoms that come along without it, for both Nora and us. In the 3 and 1/2 weeks Nora was off of TPN, she acquired some habits that have been a struggle to break. Without her line she was free to get baths anytime she wanted, sometimes she requested a bath 3-4 times a day and we’d give it to her just for the fun of it. The first morning she awoke hooked up to her line she kept saying “I’m stuck” and “I want this line off” those statements on top of requesting baths all day long that I had to deny her was heartbreaking. But she’s been back on for a few days and has settled back into the old routine. Thankfully Nora is a very smart girl and seems to truly understand that as restricting as it is, the TPN really does make her feel better. After we told her that’s what made her feel better she became more accepting of being “stuck”.

Nora resumed TPN for 4 night straight this week to give her a boost but starting next week she will only be on TPN 3 days a week, Monday, Wednesday and Friday evenings for 12hrs. So even though the unexpected Nora experiment resulted in TPN again, we are still very proud of our girl for doing as well as she did and proving that she will only need it a few days a week.

Another positive that came out of all of this is Nora’s new home health care company is wonderful. They have taken a true interest in Nora and see her for the little gem that she is. The head pharmacist came up from Gainesville to oversee Nora’s first TPN mixture and delivered it to our house himself. I don’t think we’ll have to worry about any concerns we may have with Nora’s TPN not being taken seriously. To top it off Nora’s new nurse, Joan, is amazing. She has been a pediatric nurse for many, many years and is a mom to a special needs child herself. The understanding she has about the importance of sterile technique from a medical and parents prospective brings us a huge amount of comfort.

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An Unexpected Experiment


June 13th, 2009

Sorry for the lack of posts lately and if it caused anyone to worry about Nora. Some of you have sweetly expressed concern since it’s been a month with no update but Nora poo is a-ok. When Nora updates are far and few between it’s usually because we’re having too much fun to stop to write about it or because things aren’t going so great and we’re consumed in what’s going on. The past few weeks have been a combination of the two extremes, but unfortunately more consumed in worry than fun.

So Nora has been completely off TPN for the last 3 weeks. Which sounds like great news right? It is but the reason behind it is far from great. Nora’s last delivery of TPN was a tinted a light blue color when it has always been clear (before we inject the bright yellow multi-vitamins). Of course this was discovered after hours on the Friday at the start of the long Memorial Day weekend. We had the on-call pharmacist come in over the weekend to make a whole new batch of TPN that also turned out to be blue tinted. We had the head pharmacist then come in and make another batch and this one stayed clear as normal. Since we could not get a straight answer for the cause of the discoloration over the weekend and it was extremely concerning to us, we did not hook Nora up to any of the TPN at all over the 3 day weekend. We kept Nora’s GI docs and Dr. Crooms in the loop as to what was going on over the weekend and they all agreed that Nora should not be hooked up to blue tinted TPN. Even though Nora was handling the break off TPN fine the whole situation was very stressful, worrisome and left us feeling extremely vulnerable.

We thought that when everyone returned to work after the holiday weekend on Tuesday that we would get a straight answer as to what was going on with Nora’s TPN. Unfortunately this was not the case, we got guesses and probabilities but no clear answers nor any incentive shown to really get to the bottom of it, this did not make us happy to say the least. Knowing that people have died from infusing the wrong medication, and especially knowing that children have died from being infused with the the wrong mixture of TPN made their “we think” responses to the situation very frightening for us. We don’t want to guess when it comes to something as serious as Nora’s TPN and so any confidence we had in their pharmacy department went straight out the window. After talking to several other pharmacists and doctors who all agreed the blue TPN did not sound right we decided the only option was to switch home health care companies. Thankfully Nora has done so well since it took some time to get insurance approval for the new home health care company and getting the details sorted out.

Nora just happened to have a routine appointment with Dr. Crooms on that Tuesday after the holiday weekend to have her port placement checked. When he saw Nora on her 4th day without TPN he was very pleased to see how well she was doing. Since the TPN issue still was not resolved and Nora was holding up so well he suggested that we use this as an opportunity for a test run without TPN and see how Nora does. We ran this by Nora’s GI docs in Birmingham, they agreed to this trial experiment as long as Nora stayed stable with good labs and blood sugar, hydration, no significant weight loss and the obvious signs of maintaining her energy level and acting “normal”.

At the beginning of this trial run I had visions of many days at Aunt Linda’s pool and at the beach with our line free girl. But it quickly became apparent that keeping Nora out of the 90 degree weather and keeping her close to home to keep her from getting dehydrated was essential to having a shot at success without TPN. We’ve been pushing extra fluids and Pedialyte to try to make up for the 11oz of fluid a day she isn’t getting from TPN. Some days she drank very well and met her quota and other days not so well.

So now we are beginning week four without TPN and overall Nora has held up amazingly well, up until the past few days. We had to take Nora up to her GI doctors in Birmingham this past week and it seems that the stress of the long trip has really taken it’s toll on her. Whenever Nora is away from home she doesn’t eat and drink….or poop as regularly as she does at home, all of which really wack out her system. Up until yesterday her energy had been pretty consistent, although expectantly not as high as with TPN, but today she’s pretty puny and low energy and had a bad stomach ache for a good portion of the day. She will have labs drawn tomorrow and at this point we forsee her going back on TPN this week.

But as frustrating and stressful that all of this has been, there is always a positive side to every situation. Even if Nora goes back on TPN soon, she handled stopping TPN without weaning down extremely well and has proven that she doesn’t need it 6 days a week so at least something good came of the test and all the stress that came with it. I’ll end this post with some pictures of our Super Nora from the past few weeks.

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When we were in the waiting room at UAB for Nora’s GI clinic appointment last week she met a little boy named Will who really caught her attention. It was his hospital bracelet that first caught her eye when he strolled over to check her out. Nora had just protested wearing her bracelet but when she saw him sporting it she decided to put her’s back on. Nora has never really shown a whole lot of interest in another child out in public for more than a few minutes but she never lost interest in Will¬† and we had to wait quite some time in the waiting room before Nora’s appointment. They were very sweet together, I think it was her first crush. :)

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