Jessika was first admitted to ICU, then a day later was moved to a step-down floor, big mistake! A week later she was back in ICU and on a vent. It was determined that the yeast had colonized on a heart valve, where it was made it hard for the medications to get it, and the valve was destroyed which is where the clots were coming from. She needed heart surgery but was too weak.
By Memorial weekend the doctors told us she had about a 10% of survival. The infections were swarming her body, her lungs were full, her only nutrition was through IV. We called the family. They came from Ft. Worth and from LA and Dayton. The older boys were with us, but they went home with their dad after their goodbyes. They wanted to be with their dad if they got bad news.
On June 2nd we were told to get anyone who wanted to say goodbye to the hospital. The boys came back up, her Aunts, Uncles and cousins came, her grandparents came. Bill's family is devout Catholic, they arranged for a priest to come in and do anointing of the sick. We were all there, Jess managed to open her eyes and participate.
Within hours she started to improve, she was still very sick, but her odds were about 15%. By this time she had coded twice and been brought back. This scene was repeated all summer.
I was living at the Staybridge Inn in Springfield, and driving to the hospital each day. During the week this was not a problem as they had valet parking, the staff knew me and had a wheelchair ready for me each day, and a volunteer would push me to ICU. DH would come up when it rained (he was busy trying to get crops in the ground and is now dealing with guilt that he wasn't there more). I went into a deep depression, not only was my only child fighting for her life, I was stuck in a hotel room or the hospital. Because of my health I can't walk but a few feet so unless someone was there to help me that was my only two places I could go. Eventually an online friend moved to Springfield into a duplex they bought, and I was able to lease the other side. This gave me a 2 bedroom house with a patio and back yard. I was also able to have Gizmo, my dog with me. My SIL moved in with me so I wouldn't be alone.
As the summer progressed Jess had ups and downs. A trachea was put in to connect the vent too making it easier to read her lips and make it more comfortable for her. She had periods where she was Jess and then periods of confusion. Once she told us a nurse had stabbed her, then showed us a scar on her chest where she was stabbed, when in reality it was from a surgery she had while in high school. She had a pet raccoon and chased snakes (she was totally bedridden), she tried to convince me to check into the room next door so we could be together.
When I lost my job last year I thought it was the worst thing that could happen. Now I see it was the best. I was able to rebuild my relationship with Jessika, and since I wasn't working, was able to move to Springfield to be with her. I think life sometimes has a way of giving us what we need, even if it doesn't seem like it at the time.
By August, Jess had coded 4 times, the infection was back and bad. It was her damaged heart valve that kept seeding her blood and allowing the infection to take hold. She became very ill and it was decided that the surgery would have to be done. Again, a priest came in and prayed over her. The valve replacement was scheduled for a week, by the time it came the infection in her blood had cleared.
The surgery went well until they were moving her to recovery, then she began to bleed out. She had a reaction early on to the heparin and we bout lost her then. So she couldn't have heparin while she was on the heartlung machine. Nothing else had ever been used in the area so the doctors used that week to look for alternatives. Her organs had all shut down at one point or another over the summer, most were back online except her liver. Because of this the blood thinner was not clearing from her system properly. They had to open her back up and she was that way in the OR for 7 hours until they had it under control. She spent 10 days in the recovery room (instead of the usual few hours), finally she was stable enough to be moved to the coronary care unit.
By now, Jess was down around 85 pounds. She had nothing by mouth since May, all her nutrition was through an IV or feeding tube. Physical therapy began working with her. Her legs had atrophied and she was looking at months of rehab to learn to walk again and do fine movements with her hands.
On September 21st, she was moved to a regular room. The family was very much against this, but we were overruled by insurance. Jessika was finally off the vent, although she still had a trach in. This was due to the large amount of mucous being produced by her lungs and the need to suction every 15 to 20 minutes. On the night of the 23rd, she had a horrid nurse who apparently didn't know how to suction and was stabbing the tube into the trach instead of lubing and gently feeding it in.
We were home in Flora at that time. I had an overwhelming need to go see Jess. Bill agreed and we took the 3 oldest with us. We arrived at the hospital early on the 24th. She was coughing a great deal of bright red blood from the trach. I questioned the nurse on duty, she said Jess's trach was just irritated from the frequent suctioning. We left about noon so Jess could rest. We spent the day running errands with the boys.
We got back to the hospital around 7. Jess was coughing so much blood out the trach I had the boys leave the room and had Bill get the nurse. We got her cleaned up and I asked why nothing was being done. The nurse said she had called a doctor earlier and some tests were ordered. Around 9 they took her to xray so we took the boys back to the apartment.
At 11:30, Jon, her husband, called and said the doctor came in and they were going to take Jess into surgery and cauterize cuts in her throat caused by the carelessness of the nurse the prior evening. A little while later he called back and said they were prepping her. We asked if we should come up, he said he didn't think so, the Rapid Response Team was with her.
OMG as a nurse I knew what that meant. We dressed, told the oldest boy what was going on and took off for the hospital. I knew it was bad. As we got off the elevator a nurse escorted us into Jess's room. They were doing CPR with shock. I held her hand, I screamed at her to come back, don't leave, that I loved her. After several minutes a doctor asked us and her husband to come with him. He said they would continue CPR for as long as we wanted, but she had been without oxygen for so long she would never be Jess again, she would just be. We didn't want that for her, They let us each say goodbye, and I held her hand as she drew her last two breaths and she was gone. My world changed forever at 12:58 am on Sunday, September 25, 2011.
We had her service the following Sunday. We are told that the church where we had it (the one she had grown up in) was packed. Billl and I each wrote something to be read during the service, we cried, we held on to the kids, we held each other. We took a limo to the cemetery so we could be with the boys, their dad and my SIL. The cars made a line 2 miles long. She was laid to rest in the family plot at the Catholic Cemetery. I couldn't get out of the car, I couldn't watch that. All through the visitation on Sat and before the service on Sunday, I sat next to her and held her hand. She was so beautiful. She looked like the angel she now was.
We have tried to go on. It is so hard. I am yet to have a day I don't break down. I don't even have all the thank you cards done. It hurts too bad.
We had a private autopsy done by a forensic examiner. There were extensive cuts in her throat. But what killed my baby was the fucking idiot who put the intubation tube down her esophogus instead of her trachea, which not only filled her stomach and intestines with a painful amount of air, it suffocated her.
She was getting better. She would have come home. But she was killed, her life taken from her. I have to learn to live with that, accept that, learn to live without my only child.
I will never hear the word MOM directed at me again. No more hugs, no more kisses from my baby. I truly thought nothing could ever hurt this bad.
We made it through the holiday by doing what we had never done. We took all 5 kids and went to Ohio to my BIL and SIL's house. There was nothing traditional. We even managed to have a nice time. Now we have to get through December. The next hurdle after that will be March 3rd, her birthday. Also the youngest grandson's. He was born on 3/3 on his mommies 33rd birthday. He will be 3. The oldest is 15, then 13, then 9 and my sweet little princess is 5. These poor kids will grow up without their mother. I ache for them.
So, that;s it. The story of my last several months. Thanks for reading it. Now, now I want to heal. I want to smile. I want out of this darkness.
Tuesday, November 29, 2011
Posted by Deb at 2:17 PM
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