Archive for June, 2009

“I feel much better!”

June 19th, 2009


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.


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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