Aaahhhh.....where does the time go? In the past few weeks it seems like time has stood still and the world just passed by me.
So here is a quick update from the first part of the month. On Friday June 10th I went to work and then went to a surprise party for a collegue and good friend of mine from work. Jessie's friend Lacey came with me since my mom was at the hospital all of the time with Jessie and I really need a little break. So we went to the party, met new people, ate some great food and then headed back to the hospital. At this time Jessie was staying at the neuro unit in the hospital. She was still having seizures and the her neurologist Dr Bigley was trying to get her meds figured out to stop the seizures as she kept having them on a pretty regular basis. Well, this Friday night Jessie had a major seizure. It was horrible! The seizure lasted over 5 minutes and she was then unresponsive for almost over an hour! The nursing staff had to call their rush team to work on Jessie and they didn't know what to do. Eventually Jessie came back around but it was just horrible for Lacey, mom and me. My mom always says that it is harder on the family than it is on the patient. The patient a lot of the times doensn't know what is going on and sleeps through a lot. But the family is aware and awake and see it all and it is just a mental and emotional anguish. Dr Bigley came back to the hospital at midnight to see Jessie and had her sent down immediately for a CAT scan. He said that he didn't know the cause of the seizure but would talk to the surgeon and see what the next step would be.
The next day (Sat) I headed back to the hospital. Mom was staying there 24/7 and was always by Jessie's side. When I got the hospital mom said that Dr Bigley and Dr Morgan agreed that surgery for a shunt is the only thing we can do at this point in time. They had to take Jessie off of the blood thinner meds so her body will be prepared for surgery. So that meant she would go in for the procedure on Wed 6/15. For the next few days Jessie didn't talk to us or eat or anything. She was basically unresponsive. When it came time for the surgery mom and I were at a loss. We didn't know what we could do. Dr Morgan (Jessie's neurosurgeon) explained the procedure and what was going to happen. He said it would only take 30 minutes to put in an external shunt. The shunt would drain fluid from her brain into a bag outside of the body. They would then test the fluid for tumor cells. If it was positive they don't want to recycle it back into her body. That makes sense. If the fluid is negative they will do another procedure and put in an internal shut. This would mean that the fluid would recycle back in the body and re-absorbed. Dr Morgan also explained that both he and Dr Bigley felt that the chances the fluid being the cause of pressure and seizures was low; the chances of it being related to tumor or tumor growth was high. With tears in my eyes, I had to explain to my mom what was going on. I then turned to Dr Morgan and said we don't have any options right now. Mom and I need to hear Jessie speak to us and open her eyes and acknowledge us. She is basically a vegetable to us and that is no way to live. Dr Morgan understood and said that he would do whatever he could. Mom and I said that we know that Jessie's in good hands.
So we left the pre-op room and said our silent prayers. We waited in the waiting area, wishing and hoping for a miracle - that God would turn things around for Jessie.
About an hour later Dr Morgan emerged from the operating area. He said that the surgery went well and that Jessie would be in the recovery area for a while and then go to the ICU for observation due to the external shunt. Mom and I smiled at Dr Morgan and felt a small weight lift off of our shoulders. Since we had to wait to see Jessie we decided to go to my in-laws to visit and grab a quick bite to eat. Mom got to meet my niece and nephew and it was nice to be able to get out for a few hours.
When we went back to the hospital, we saw the result of the surgery. Jessie was awake and talking! She was really upset and confused. She didn't know what was going on. When I told her she had surgery, she got really upset and wanted to know why. She had been so unaware as to what was going on, she thought she was still home. She didn't remember the seizures, the REMSA ambulance trip, the hours at the ER or her hospital stay. Goes back to mom saying we suffer more than her. She spent the next week in the ICU recovering from the surgery, saying crazy stuff due to the drugs. Sample of things she said:
* I know who is going to win the Super Bowl! Who?? Nobody :)
* Give me my rainbow drug monkey so I can push the button!
* What does the feed tube stuff taste like? A hotdog.
* Hey! I want to go with you help me out of this boat. Is my butt hanging off the boat? I don't want a crocodile to bite my butt. They can bite my leg since I can't feel that.
At least she has her sense of humor while on the drugs....
So last week Dr Morgan said that she would have an internal shunt put in as there were no tumor cells in her fluid, at least that is what Jessie said. I was confused since I haven't heard anything from anyone. The nurses didn't say anything, haven't seen the doctors so had to go with what Jessie said. And then, mom and I show up to the ICU and see a note in her room that she is going in for surgery Sunday (6/26) morning. Jessie knew what she was talking about! So mom and I and Lacey show up at the hospital bright and early and follow her to pre-op again. We talk to Dr Morgan and he says that they tested the brain fluid TWICE and it came back NEGATIVE!!! Being negative meant that they could proceed with putting in an internal shunt and work on getting Jessie out of ICU and hopefully back to getting some physical therapy and back home. We were so happy to finally hear the news directly from Dr Morgan I personally just wanted to jump up and give him a big hug. I think he knew how we felt because Lacey asked how long the procedure would be and he joked with us and said 14 hours. Then he laughed and said about 45 minutes. We asked if he could have them shave the other part of her head since she was sporting a Flock of Seagulls hairdo from the last surgery. He laughed and said he would see what he could do.
So Jessie now has nicely shaved head and is awake and alert. Dad and Uncle Steve came up yesterday and Jessie was really happy to see them. I don't know if Jessie or Daddy was more happy. Daddy even brought a cute bunny for Jessie. Dad was able to visit while I was work and said that the nurses said that Jessie might be moving out of the ICU by the end of the week. Yet another step towards the right direction.
So that is it for now. We are so truly grateful and blessed to have the small miracles we have had this month from God. Please keep the positive energy and prayers - we need to keep the faith going to build the momentum! Thank you all for keep us in your thoughts.
"Prayer is asking for rain ~ faith is bringing your umbrella"
Wednesday, June 29, 2011
Tuesday, June 7, 2011
Spring 2011 Update
So, it has truly been a while since I have updated this blog. Really the major news to report is about Jessie.
At the beginning of the year, Jessie wasn't able to walk to she was getting around with her wheelchair. Jessie and I would carpool to work to town together since Jessie's car wasn't wheelchair capable for her to drive. So that went on for about a month. Jessie decided to talk to her rehab doctor and see if she could be re-admitted to the in-patient rehab so that she could build the strength she needed to get around better in the wheelchair. Jessie was approved and admitted to rehab the first part of February and spent the month working with the therapist to strengthen her core and arms.
Jessie came home right before her birthday, the first part of March and almost immediately complained of bad headaches. After about a week Jessie went to see her doctor about the headaches and was sent to the ER for observation and testing. It was then found that her tumor had moved to her neck and she had some questionable spots in her brain. This definitely was not the news we were expecting to hear and to say we were sad and devastated is too light of a term. Jessie was re-admitted to the hospital and started agressive treatment for her tumors, which included 5 1/2 weeks of radiation and chemo. Jessie had radiation before so we weren't too concerned about that as we were about the chemo. It is so hard on the body and basically kills everything, good and bad cells. Jessie wasn't able to complete her full schedule of chemo due to low blood counts and a low immune system.
Once all of this was said and done, Jessie went back for a few weeks to rehab and then was released back home the first part of May. However, she came home and a few days later had a major seizure. We were not prepared for that and had to call 911 to get her to the ER. She was at the hospital again for about a week and came home. However, while at the hospital and due to her low immune system, she got shingles. It was horrible to watch her suffer through the shooting pain due to the shingles. It was so bad that she passed out from the pain and we were so concerned already of her high blood pressure that we scared that she might have stroke. So off to the ER again we went. This time, she went to have her heart monitored and then ended up in Oncology, which is weird. I am sure that people that go to the Oncology ward appreciate the doctors and nurses there but with Jessie's case, I was not pleased with the care she received. I feel the attending doctor (who was not anyone we ever dealt with before) didn't listen to our concerns and left the other doctors in the dark. On the last day there, Jessie had a seizure and I explained to the doctor that it wasn't normal for her to have seizures. All he did was give some meds and said that if we take home and she has seizures that we need to contact her doctor to adjust her meds! That was it! No concern about what I said about not having a history of seizures! I ended up calling her neuro-surgeon and got him in the loop.
So home again we go with Jessie (this was last week) and over the weekend she again had a series of seizures. She was having them almost every 10 minutes and then had a major seizure that we had to again call 911. Thank God that the fire station is just around the corner and the firefighters are so caring and professional. It helps to calm us all down when you see they really care and are concerned. So back to the ER we go and now she is in the hospital as they adjust her meds. She is definitely doing a lot better. The doctors are trying to pinpoint the cause, but they do not believe it is tumor growth. They feel it might be residual inflammation caused by the radiation.
So that is pretty much the news for now. Oh, and due to the fact that Jessie was out of work for so long she lost her job at Harrah's. But, it has been a blessing for her. Her position was being elimiated anyways after the summer so she would have had to look for a job. Plus, due to be let go for medical reasons, she can have extended COBRA benefits so that will help us out a lot. Harrah's was an amazing company and with so many people that really cared for her wellbeing. I will always say good things about Harrahs due to the way they have treated Jessie, as an employee, and myself, as her sister, during these trying times. It makes it so nice to have a wonderful employer that tries to work with you during a medical crisis.
I will try to post more as things progress. Take care, thank you for prayers and positive energy and Thank God for all of the blessings and little miracles we have had thus far. We know He is with Jessie during these trying times.
At the beginning of the year, Jessie wasn't able to walk to she was getting around with her wheelchair. Jessie and I would carpool to work to town together since Jessie's car wasn't wheelchair capable for her to drive. So that went on for about a month. Jessie decided to talk to her rehab doctor and see if she could be re-admitted to the in-patient rehab so that she could build the strength she needed to get around better in the wheelchair. Jessie was approved and admitted to rehab the first part of February and spent the month working with the therapist to strengthen her core and arms.
Jessie came home right before her birthday, the first part of March and almost immediately complained of bad headaches. After about a week Jessie went to see her doctor about the headaches and was sent to the ER for observation and testing. It was then found that her tumor had moved to her neck and she had some questionable spots in her brain. This definitely was not the news we were expecting to hear and to say we were sad and devastated is too light of a term. Jessie was re-admitted to the hospital and started agressive treatment for her tumors, which included 5 1/2 weeks of radiation and chemo. Jessie had radiation before so we weren't too concerned about that as we were about the chemo. It is so hard on the body and basically kills everything, good and bad cells. Jessie wasn't able to complete her full schedule of chemo due to low blood counts and a low immune system.
Once all of this was said and done, Jessie went back for a few weeks to rehab and then was released back home the first part of May. However, she came home and a few days later had a major seizure. We were not prepared for that and had to call 911 to get her to the ER. She was at the hospital again for about a week and came home. However, while at the hospital and due to her low immune system, she got shingles. It was horrible to watch her suffer through the shooting pain due to the shingles. It was so bad that she passed out from the pain and we were so concerned already of her high blood pressure that we scared that she might have stroke. So off to the ER again we went. This time, she went to have her heart monitored and then ended up in Oncology, which is weird. I am sure that people that go to the Oncology ward appreciate the doctors and nurses there but with Jessie's case, I was not pleased with the care she received. I feel the attending doctor (who was not anyone we ever dealt with before) didn't listen to our concerns and left the other doctors in the dark. On the last day there, Jessie had a seizure and I explained to the doctor that it wasn't normal for her to have seizures. All he did was give some meds and said that if we take home and she has seizures that we need to contact her doctor to adjust her meds! That was it! No concern about what I said about not having a history of seizures! I ended up calling her neuro-surgeon and got him in the loop.
So home again we go with Jessie (this was last week) and over the weekend she again had a series of seizures. She was having them almost every 10 minutes and then had a major seizure that we had to again call 911. Thank God that the fire station is just around the corner and the firefighters are so caring and professional. It helps to calm us all down when you see they really care and are concerned. So back to the ER we go and now she is in the hospital as they adjust her meds. She is definitely doing a lot better. The doctors are trying to pinpoint the cause, but they do not believe it is tumor growth. They feel it might be residual inflammation caused by the radiation.
So that is pretty much the news for now. Oh, and due to the fact that Jessie was out of work for so long she lost her job at Harrah's. But, it has been a blessing for her. Her position was being elimiated anyways after the summer so she would have had to look for a job. Plus, due to be let go for medical reasons, she can have extended COBRA benefits so that will help us out a lot. Harrah's was an amazing company and with so many people that really cared for her wellbeing. I will always say good things about Harrahs due to the way they have treated Jessie, as an employee, and myself, as her sister, during these trying times. It makes it so nice to have a wonderful employer that tries to work with you during a medical crisis.
I will try to post more as things progress. Take care, thank you for prayers and positive energy and Thank God for all of the blessings and little miracles we have had thus far. We know He is with Jessie during these trying times.
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