Lost my Love

Forgive my absence and not explaining what happened. Its been a very difficult time.

I want to tell her story in hopes that it may help someone else.

As you may have read in some of my other posts, she was improving a little. She was very bad off and had a very long road ahead. All the doctors and specialists we had seen never seemed to be much help nor the they seem to be very interested in helping to guide us.

It had been over a year since she first came down with GBS. We had told her neurologist that we wanted to try some different medications. Specifically the Baclofen (muscle relaxer) that she had been on since she had been released form the hospital, and something for pain to help make therapy easier for her. Well the neurologist didn’t think she needed any changes and so nothing changed much for a while. We got her primary doctor to start her on Gabapentin for pain. This was a huge help for a while but then it started to not work as well. We were still having problems with muscle contractions.

We started to see a neuromuscular doctor and his concern was that her movements were real slow and her speech had not improved much. Her memory loss was also a concern. Her short term memory loss was very severe and didn’t seem to improve very much over the last year. He also talked about how she had brain damage and that this was most likely the cause. He even noted a couple things it could be from. See did get a never conduction study from him (first one) and he said that her upper extremities were not that bad but that fact that she just didn’t have the speed or ability/want to move her arms very well is what lead him to his conclusion. No follow up appointment was given.

Still we would not give up! Her primary care doctor was really the biggest help in that he was willing to work with us and try different medications. We had discussed increasing the Gaberpinten or changing the baclofen to something else. He wanted to change the Baclofen so that is what we did. Changed it to Flexeril. After about 4 days since she stopped the Baclofen and started on the Flexeril changes started to happen. Big changes. Good changes. It was as if she had just work up from this nightmare. She started moving more, a lot more and just because she could! It was no longer slowed and her coordination was improved. She was so much more active that we didn’t even push therapy (She hated therapy and would often fight us). Talking! Talking! Talking! so much more talking. She still had all the same trouble with speech but if we couldn’t understand what she was trying to say she would spell it out for us. She would smile so big and so would we. Everything came with so much more ease for her. We were so amazed! So Amazed and So Happy to finally turn the corner and start making real improvements. My baby was getting better!

While this was going on, she started grabbing at her throat and would ask us to take it off. She didn’t have anything on her throat. We thought that she was maybe starting have more feeling in her skin or that she was remembering that she had a trach (the trach in her throat had been taken out about 6 months earlier). We would get a mirror and show her that nothing was on her throat and calm her down. We didn’t think too much of it. Also, her GI tube had been out for about 3 months.

So the weekend came and things were going great. Friday and Saturday was the best days we had in over a year. Sunday she wasn’t feeling so well. Honestly, she didn’t know how she felt. We would ask her and she would just shrug her shoulders as if she couldn’t tell. Any way she was throwing up a little. We thought that she was getting a little sick so we were going to take her to the doctor in the morning. Well, later that day she started throwing up a little more so we took her temp and it was really low. It was 95 degrees so we were concerned. She didn’t want to go to the emergency room. Every time we had taken her in the past they always kept her for a week. With good reason usually due to urinary track infections as she still had a catheter. Any way, we finally talked her into going. Once we got to the ER she started to panic. So I started to panic especially when her knuckles started to turn purple. So we got a doctor to look at her right away. He said she was very sick and may have to go back on a ventilator. They started to hook up the heart monitor and when they lifted her shirt we saw that her stomach had swollen real big (we just gave her a bath right before we went to the ER and her stomach was fine). The doctor made us leave the room and they put her mom and I in a room down the hall. After about 5 minutes, a nurse came in to tell us that her heart had stopped and that they were doing CPR. We rushed to see her. For 33 minutes they did CPR, until they got her back. They put a surgery team together and rushed her into surgery. The doctor told us that something had ruptured and that her abdomen was full of air (the reason her stomach swelled so big).

After surgery, they told us that they had to remove her stomach and that what little was left was in very bad shape. The surgeon said her stomach was all necrotic. Her stomach had ruptured and poisoned her body. We were told she was in very bad shape and that it was just a mater of time. She held on for almost another day but never regained conciseness. They did everything they could to keep her blood pressure up but it just wasn’t enough. Her heart stopped 7/16/12 at 7:45 pm and we lost her.

I miss her so much that you cant even imagine. We were together for almost 11 years. She was 35 years old.

This is her story and I pray that it will help someone not have to go through this tragedy.

If you have any questions please feel free to ask. I will do what ever I can to help.