Background

UPDATED – UPDATED – UPDATED. See update below!

Barb is recovering nicely, however, I am still working part-time in order to care for her. Unfortunately, even at the increased hours, I now make too much money to qualify for Medicaid, but do qualify for what is called “Free Care” at LSU Interim Hospital (University Hospital) and no insurance company will touch us. Because we are no longer on Medicaid we have to pay full price for Barb’s ostomy supplies. These supplies amount to about $500 a month. If the Lord has pressed upon your heart to assist us at this time, please follow the Donate link below.

Barb and I thank you so much for visiting.

I know that this post is long, but please to get a scope of what is happening, please read the whole thing.

Barb has Crohn’s disease. She has had it since about 2001, but not diagnosed until 2003. With medications she has live a fairly normal life with occasional flares that were either dealt with medications or short hospital stays.

Fast forward. We were married in July of 2008. In November of that year things started to heat up. She had more and more flares, complications such as acute pancreatitis (worse than kidney stones or child-birth, pain-wise), and infections, etc.

She has spent about 170 days in the hospital for various infections and flare ups until November of 2010. When she started having extreme nausea, gut and back pain. After many antibiotics and the loss of nearly 40 pounds, severe malnutrition and what we thought was another gut infection, we went to the hospital. See, the Crohn’s had flared so severely that her body was unable to absorb any nutrients and thus her body was starving.

So, at the beginning of January, I admitted her to University Hospital (UH, the old Hotel Deux, part of the LSU medical system) in New Orleans. Our GI specialist, Dr. Bryan DiBuono, is our doctor and not only an awesome doctor a great friend as well.

A side note. For over a year, Crohn’s was treated with Remicade (a common and very effective Crohn’s/Arthritis med). But in August, because the regular dose of 5mg/kg was not working, the decision to increase to the maximum of 10mg/kg if the regular regiment was ineffective was given the go ahead. One of the side affects of Remicade is a weakened immune system. At 10mg/kg, even more so. Therefore, her immune system had gotten trashed and she had at least 3 severe gut infections since early August.

During the office visit in December with Dr. DiBuono, he and his staff decided that it would be best to take her off of Remicade because it was not working and reeking havoc with her immune system; he would need to try something else, such as Cimzia, or methotrexate.

It was determined that she had another severe gut infection and Dr. D ordered a CT scan. The CT showed she had several fistulas that were feeding some very large abscesses and that her colon (large intestine) had several severe restrictions. So much so that it was no wonder that she was so malnourished.

They admitted her on January 12 and started IV Cipro (ciprofloxacin) and Flagyl. She was there for 8 days. At which time the hospital was getting a ton of severe flu cases. Dr. D felt that she was at risk of getting the flu there, something that her immune system could not handle at the time, and sent her home with the antibiotics.

She was not at home but she was getting worse. We had a follow-up with Dr D. on that January 28th. We arrived at his office and within 20 mins of seeing her and consulting with his team, he ordered an ambulance to take her to Tulane Medical Center immediately. They had consulted with Tulane’s GI surgery team and GI/Crohn’s specialist. It was determined that her only recourse was surgery: colon resection with probable ileostomy. Meaning that they were prepared to remove 90+% of her large intestine and some of her small intestine, including her ileum.

We went to Tulane right then. They ordered her CT scans from UH, plus ordered their own along with ultrasound, and MRI’s. This is where Dr James Brown, the GI surgeon, determined that she might need a 90% resection. But first they needed to stabilize her nutritional health via IV with a liquid called TPN (total parenteral nutrition). TPN has tons of vitamins, fats, proteins, etc. Plus in addition to the other antibiotics they added a third: Tazocin.

Dr. Brown said that he would have normally had her on TPN, and the 3 antibiotics for at least another 8 weeks (yes weeks) to get her nutrition level up and the infections down a bit, but that she didn’t have 8 weeks. She would be dead in just a few weeks. So, he scheduled her for surgery on February 8th.

That day came. We had many faithful and true friends and family visit to stay our family in the OR waiting room. Even her best friend and her maid of honor at our wedding, dropped in from Toronto, Canada for a visit. The ones I know that were most important to her were her mom, dad, and daughters, Amy and Rachel (Rachel had just moved back from Canada to the area) and son, Luke.

Dr. Brown said that he was expecting at least 6-10 hours of surgery. But after about 6 hours, he came out to say that it was a success. That he only had to remove about 30-40% of her large intestine. That she did not need the ileostomy. But would need a permanent colostomy (there is a huge difference). He had to remove several sections of colon because the restrictions was so severe that he could not even get his pinky finger thru it. He did not have to touch the small intestine nor the ileum. He was amazed that she was even alive at this point because of the restrictions choking off her body processing food, etc. No wonder she couldn’t eat anything for so long.

One of the problems that happens to people that are bed ridden for so long along with malnutrition, is a syndrome called drop foot. It is when you are in the bed for so long with out the ability to stand because you are so weak, you tend to point your toes down. If this happens for a long period of time the muscles and tendons get pulled and tightened in that position. So when you go to stand you cant because the muscles are so tight.

This is one if the additional challenges Barb had. Next is just plain weakness and muscle atrophy. She had very little protein for so long.

February 2011

March 2011

Second was her left hand. As you can see in the photo, it has a severe twist. It affects her fingers as well. It is very painful to the touch. Louisiana Rehab Products of Metairie built her an adjustable brace to hold it straight out. But even after having it in the brace for 5 to 6 hours her wrist goes back to this position. Her index, middle and ring fingers get all distorted and twisted.

Doctors have no idea what has caused this.

Her physical rehabilitation would be easy if she did not have the issue with her hand and the drop foot.

After her stay at Tulane, she was moved to an LTAC, Long Term Acute Care, facility. This was a complete disaster sto say the least

All Barb wants to do is to come home. Home to where she can take care of Luke and me. But she cannot do that until she can get in and out of bed on her own. Get to the potty-chair or toilet, dressed, and back to bed again. Although she is making progress, it looks like she is going to be there for at least another month, possibly two. Then she would be able to come with home health with PT. But things got worse both for her physically and mentally.

Part of the physical issues was due to the facility itself. The nurse assistant went to apply an antibiotic cream to Barb’s back because of bed sores and accidentally applied the paste used to adhere the colostomy bag to the skin. So, she was glued to the sheets! Which took other staff over 45 mins and a jar of Vaseline to remove. Much pain, and suffering. She already had the bed sores, now they were putting alcohol based removers and peeling off the glued on sheet!

Frankly, I had had enough. We made arrangements with the social worker for Barb to finish out the antibiotics and I would take her home for Home Health PT. On of her PT nurses was awesome, she felt that Barb needed to be in an in-patient facility. So she recommended her to a specialist at St. Tammany Hospital in Covington.

She was admitted for at least 3 weeks of PT. But she did so well that the PT Doctor (Dr. Gollumudi Reddy) released her.

Now, my situation. I work for Church of the King. They have been awesome through all of this. I only work part time, because when we moved to the Northshore I was also doing contract work on the side. Both of these were paying the bills and then some. But when she took ill back in November, not being able to get out of bed by herself and with Luke at school, I found myself spending more and more time a home to take care of her.

The contract work saw that I had to schedule around this and they felt that they would help by not tying me up with their work freeing me to spend time with her. So subsequently, I haven’t been able to do the hours that I need to make ends meet. What does one do in this situation?

UPDATE – UPDATE – UPDATE

Where we are now. We still could use your assistance. Every little bit helps. All this time off work taking care of my wife has left us behind in many bills. Plus now that Rachel has turned 18 and moved out, we no longer qualify for Medicaid and now have no insurance. Medicaid was covering the cost of Barb’s ostomy supplies. They run about $500 a month including her current meds.

So, what I am doing is asking for your assistance. Financial assistance. Yes, I am asking for a handout. I most likely never be able to pay you back. I am asking this for not only me but for my bride. We finally were able to move to a nice duplex in Abita Springs, LA closer to work.

Below you will find a donation button. You can enter any amount you wish. Everything helps. I am very grateful that you have even read down this far. Please take the next step and click the link to help Barb and I continue to recover and doing the work of the Lord and taking care of our family.

Thank you so much for your time.

To help Barb and I through this time while as Barb continues to recover from life-changing surgery and continuing medical expenses, anything that you can assist with is all so much appreciated. This button will take you to PayPal. You do not have to have a PayPal account to contribute. Once you click, on the lower left there is a line that says, “Use your credit card or bank account (where available). Continue.” Just click “continue” if you do not have an account.