The Elephant Clog

So, what happens when you cross an elephants nose and a slow rate of tube feeding formula? Clogged noses! Yep! Over a 6 day period, I was in the ED twice from a clogged up NJ tube! This is frustrating because it's the third trip I have made since discharge just over three weeks ago, and I'm looking at least another 4-5 weeks with this tube. On Tuesday, June 29 I went back in, exactly a week after the last time I had been there. The labs I had drawn the week before showed severe anemia and I had been scheduled to go to the infusion room for a unit of blood. However, when I woke up on Tuesday morning my tube was clogged up. I knew this wouldn't be fixable anywhere but the ED, so I solved two problems at once by going to the ED for blood (they ended up giving me two units) and to have my tube unclogged. Unfortunately, they were unsuccessful with Clog Zapper again and the whole thing had to be replaced. I was there from noon to 1 am between both problems. It took three attempts and x-rays to get it in the right spot. I had been off tube feedings since about 6:30 in the morning, so I was feeling pretty lousy by the time I got home. I slept most of the time in the ED thankfully! Partly because of exhaustion, and partly because I had to be pre-medicated with IV Benadryl for the blood. I was falling asleep before they even medicated me though.

On Sunday morning, July 4, I was at LCBC in the first gathering and noticed my pump had stopped and was flashing an occluded error message. I kept restarting it, but figured I was in a mess again. That morning I had tried to flush it and it had been sluggish. I flushed it with Coke and extra well to try to keep it open, but apparently I didn't do enough. Around 9:30 I noticed the message (I had turned off the alarm to avoid disturbing the service if any alarms went off). Finally, I left the gathering and went to an empty, private kidMin bathroom to try to unclog it (take a look in the bags of people with DTP sometime...you'll find interesting items, especially for those on nutritional support!). I wasn't successful, so I left early to come home and try more aggressively. None of those tricks worked, so I reluctantly headed back to the ED expecting a really long day! They almost decided not to do the Clog Zapper at all since it had failed both times before, but as per protocol they ended up doing it. This time was more encouraging almost immediately because the nurse said he felt like he had pushed through a tight spot when advancing the wire for the flush. I also had a much stronger taste of the Clog Zapper in my throat than I ever had before, so I was encouraged that it might actually work! After an hour, they tried to flush it again and it opened right up! Finally a "simple" solution to the clogged tube and a much shorter wait! I was able to be home in time for some of the evening of the fourth!

My nurse was great...he had dealt with a lot of NJ's when he worked in med/surg. He said that one reason it keeps getting clogged is because my rate is not fast enough and it ends up building up and solidifying. I had considered this was part of the problem, but it's not something I am able to change right now because my gut can only tolerate 20 cc's an hour. The other thing he said is that I need to flush it with more fluid and every four hours. This I can change, although it's not real easy. When I am only getting drips of fluid at 20 cc's an hour, a bolus of no less than 30 cc's at once makes me pretty sick. He said technically I should do 60, but 30 would at least get me through the tube. So, since then I have been using at least 40. In the morning and evening I use a little Coke and then water because I don't get out of bed every four hours and hope that will keep it open overnight and clear any formula out in the morning. I flush it more frequently during the day and he recommended that I get a prescription for Clog Zapper to use whenever it does get clogged. That way, I can avoid the ED unless I actually need a tube change. It would also cut a few hours off of ED time if that had already been tried before going in.

So, what's up with my doctors and the status of the potential j-tube? I don't really know except that not much is going to happen until at least mid-August. My transplant coordinator is going to be out of town the next two weeks. She said clinic is looking crazy. She encouraged me to wait until after she comes back so both she and Kareem can spend more time with me. So, my mom and I are scheduled to go back on July 29 to Pittsburgh. I'll discuss my options then and just hang in there with the NJ for that much longer. It's ok...my main rush is I am tired of it getting clogged all the time, but hopefully I have some better solutions on preventing that now and it will function better. plus it's a little annoying to have this thing right in my face, but I figure if an elephant can do it, I might as well not complain about it! It's a little easier to deal with something when you know it is helping though!

So, anyway, getting back on track...I will be attending the Global Leadership Summit which has a Satellite campus at LCBC every year as a host site. This year LCBC Harrisburg will be a host as well! I've been the last two years in Manheim and it's one of the highlights of my year, so I definitely don't want to miss it! That takes place the first Thursday and Friday in August, so I plan to wait until at least then to do anything towards the j-tube since I don't want to miss out on that and won't see Kareem until less than two weeks before. I may even wait until the end of August because G-PACT is holding a DTP Facebook Awareness week at the end of August that I'd like to be part of. Although my friends and other volunteers would be excellent handling it without me, I just want to be a part of the daily events and the whole week too! But I will see how things stand at that point and then decide. G-PACT's 9 year anniversary is August 23, so we have chosen that week to do an annual event through Facebook to increase awareness. We have some cool ideas started :)

On Monday, I was able to enjoy an evening out with one of my friends, Bonita. We went to Best Buy to play with the iPads, then to Panera bread just to sit and talk for almost two hours. It was great to hold an intelligent conversation with someone who has been wrangling with some similar questions and issues in life as I have been recently. It was nice to swap theories, ideas, and opinions openly. Then today (or Tuesday!) I went to see Toy Story 3 with one of my LCBC Life Group friends, Janae. It was a really great movie! I highly recommend it to ANYONE! I often have trouble making it through movies...I get bored, tired, or lose focus, but I didn't with this one!

Other than the medical drama, I've spent a lot of my time on G-PACT and sleeping A LOT! My biggest G-PACT project lately has been trying to get votes for us to win $20,000. We are in the running for it, but it's been really stressful and the competition has gotten tougher! I've been pretty worked up over it because it's really important for us to receive these funds, so it's been nice to have some down "chill" time with friends to kind of keep things at bay. There are 5 days left...I'm stressed because if things don't get better we will lose out on this, but I'll also be glad when it's over...regardless of how it goes...because I'm so tired of pushing it so hard and I have so much else I have shoved aside in order to get this accomplished. I need to get back into my regular, and newly added, work. I hope to eventually get out of the administrative aspect of G-PACT and move into writing and illustrating childrens books about DTP, tube feedings, TPN, life at school, talking to friends, not being able to eat, and other issues kids face and then sell them to raise funds for G-PACT. I also want to work on a book for young adults...humorous, yet serious, on dealing with DTP and include a lot of my Carissaisms. Eventually, I'd also like to write my own memoir. Right now I don't even have the time to keep up with the basic work I have to do! This is good in one sense because it means we have grown so much, BUT it's also frustrating. I am so grateful that there is so much help out there for me now though! We can get so much more accomplished now with about 30 people volunteering! And they are all so passionate and awesome! :)

I've been enjoying time in the Jeep recently with the top off! So much fun! I just love the summer, even though it's been so HOT! I am extra sensitive to the heat this year. I think my neuropathy has worsened because I have so much pain after being in the heat now that I didn't used to have as much. I get home and my hands and feet feel like they are on fire for a long time and I can't feel them well. I know partly it's because my nutrition is compromised more, but primarily most things I have had going on in my body are just deteriorating. I did hear about a doctor at Childrens Hospital of Pitt who knows a good deal about mitochondrial diseases and may be able to get some starter info and point me in the right direction as to whether or not I should pursue it before I actually make a trip out to Cleveland. He may even be able to diagnose me or find some of the markers for it through some genetic testing. I am hopeful that I can get in to see him next time I go to Pitt! My friends who have it have told me that I need to get in to see someone...and soon...because if it is Mito, I am on some meds that are making certain aspects of my condition worse. There are also some things that can be done to help slow things down and help me feel better in other ways. So, based on that, there's more of an urgency for me to get it checked out so we can try some new things and prevent some other potential problems or at least delay them some!

Thanks for your continued support. I'll try to keep posting on a more regular basis, especially since things are changing so often these days! Your prayers are appreciated for:

Wisdom as I make some tough medical decisions

My physicians to come to an understanding/agreement on my treatment so I don't lose support from either team

Increased nutrition and overall improved health status

No more tube (nose) blockages!

Friends who are battling some really tough physical challenges right now, many in the TICU at Pitt

Strength to continue the fight...physically, emotionally, spiritually, and mentally

Opportunities with G-PACT- the guidance I need as a leader and servant to so many people and the vision to remain in tact, especially during the challenging times when we seem to just hit brick walls!