ICU Day 5

Mom had a rough night. She didn't get much sleep. The nurse kept coming in because of her breathing. She is back up to 100% oxygen. They will consider moving her to regular hospital care when she gets down to 50% oxygen. It sounds like she is going to be here awhile. She is having an emotional day today. She doesn't understand how she got sick so fast and she doesn't understand why she isn't getting better. She keeps saying, "This isn't me. Usually I bounce right back". I told her it is going to take some time and she needs to be patient and allow time for the medication to start working. She said, "I almost died!" Yes mom, you probably would have died if dad didn't bring you in when he did. She keeps wondering if she could have done something different to avoid getting to this point. She said, "maybe I stayed in St. George too long." She wants to go home really bad. We told her we want her to go home to. She has not been home for 4 months because she has been down in St. George with me during the winter months. She told the nurses to leave her alone so she can get some sleep. She didn't eat breakfast and all she had for lunch was some chicken broth and a few bites of jello. She is starting to lose her appetite. After she took a little nap I helped her use the bedside commode. I have put my CNA skills to use. I wiped my mothers bottom for the first time then I gave her a bed bath. When I was a CNA I knew the time would come when I would have to assist my aging parents but I never expected it would be when my mother was at the young age of 59. It breaks my heart to see my mother like this. I feel so helpless. I told her I would take it all away if I could. I would rather be the one suffering. I'm starting to feel like I'm dreaming. It feels like I'm stuck in a nightmare and I can't wake up. It is starting to take a toll on me and I have almost reached my breaking point. It is so depressing being here. I miss my husband and kids. I want to go home yet, I want to be here with her. I hope to see some progress soon because I'm starting to lose hope that she is going to get better and I'm starting to lose faith because my prayers are not being answered.

ICU Day 4

They were concerned that her kidneys may be effected because there was blood in her urine. Today the doctor said her kidneys looked better. Her breathing is still the same. I'm glad it's not worse but it's frustrating that she is not getting better. The smallest tasks are so hard for her. She took her oxygen off to wash her face and comb her hair while still laying in bed and her oxygen level immediately dropped down to 65 when it should stay above 90.

Two rhumatologist came in to check on her. I asked when she could leave the ICU. They said her lungs took quite a hit. She is still on a high flow of oxygen. When she can graduate from the high flow mask to the regular oxygen nose piece then she can go home but to plan on her going home with oxygen. It will take a while for her lungs to heal. They said it takes about 3 weeks for the immunosuppressent to start working. It's a matter of how and when her body responds to the drugs. They are waiting for the biopsy slide from St. George so the rhumatologist can examine it and have the pathologist here test it as well.

She is awake a lot but takes several cat naps in between all the people coming in and out.  It's hard for her to eat. The oxygen tube gets in the way and I guess it's hard to breath while eating. They did an ultrasound on her legs today to check for blood clots as a precautionary to laying in bed so much. Everything looked good.  Her friend Cindy and the bishops wife came to visit her but she was asleep so I wouldn't let them in. I told them she needed to rest. Shortly after they left her friend Ginger stopped by. She didn't stay long; about ten minutes is all. She was awake by this point but not really in the mood to have a conversation. She hasn't been up to conversing for about 2 weeks now. She mostly just nods her head yes or no.

ICU Day 3

Dad and I arrived at the hospital around 8:45am. A little later today. We are physically, mentally and emotionally exhausted. When we walked in the room Mom said she was just about to go to sleep. She mumbled while saying "I just kicked the doctor out. They had just brought me breakfast and he came in to talk but I was having a coughing fit while trying to eat so I told him to leave". I could tell she was tired. I told her to take a nap while I sit and update my blog. So here I sit quietly listening to my mother breath while she sleeps. The machine keeps beeping because her oxygen level keeps dropping under 90. I have noticed it seems to drop more while she sleeps. This morning when I woke up I prayed specifically that the inflammation in her lungs would go down, she would be able to keep her oxygen levels up and be able to breath on her own. At this point we have to sit and wait for the steroids and the immunosuppressant drugs to take effect and help bring the inflammation in her lungs down.

The physical therapist came in to work with her. First the respiratory therapist had to increase her oxygen because any movement such as just sitting up is so exhausting that it lowers her oxygen. The physical therapist started with simple things. She had her move her feet, point her toes, move her arms, resist the pressure being pushed against her arms. Then she had to sit up, straighten her legs, stand up and take a few steps. By this point she had to get back in bed because her oxygen levels were dropping.

She got a little bit of rest in between all the in and out of doctors, nurses, respiratory therapists, CNA's, social workers, case workers, nutritionists and cleaners. Not to mention all the blood work, finger pricks, insulin shots, IV injections, vital checks, oxygen checks and X-rays. She was able to take a little nap this morning. This time while she was sleeping I had a scare. Dad left to get a drink so I was here alone with her. Her oxygen level was bouncing between 84 and 88. The machine kept beeping but no one came in to check on her. Then it dropped to 83 and the machine started beeping faster. I was watching it to see if it would go back up but it didn't. My stomach dropped and I flew out of my chair so I could wake her and have her take some deep breaths. Just as I was about to wake her it started going back up. Shortly after, a CNA came in to prick her finger to test her blood sugar. I told him what was going on. He got a respiratory therapist to come in. They increased the oxygen flow from 70 to 90. I am seriously terrified that she is going to stop breathing while she is asleep.

She requested to have a priesthood blessing. I was surprised. It makes me feel like she must have a little bit of faith left in her. The bishop stopped by to see her so he gave her a blessing while he was here. Even if she doesn't have any faith I think I have enough for the both of us.

Tonight while driving home I asked dad the question that we both hate being asked.
"How are you dad?" He replied by saying he is worn down.

ICU Day 2

Dad and I got back to the hospital by 7:00am so we could be here for the update that the nurses give when they do a shift change. Mom was wearing a different oxygen mask. Instead of the basic kind that just goes in the nostrils she was wearing both the nostril kind and the kind that covers the whole mouth. They explained that she was not getting enough oxygen so they tried another mask. She is supposed to stay above 90 but she was bouncing around in the 80's. She wore the face mask for a few hours but they had to crank the oxygen machine up to 100% oxygen which is bad for the lungs so they decided to try one more mask that has a high flow. The respiratory therapist had said that if she still does not respond well to the new mask or if she gets worse then they will need to put her on a ventilator.

 They had her on a liquid only diet because they were afraid of her aspirating. She could have things like jello, pudding, broth, juice and ice chips. Just as the nutritionist brought her lunch tray in the nurse took it away. They had decided she couldn't have anything! Not even liquids or a sip of water until they get her oxygen level up. Mom was not happy about that! She was whining and whimpering that they took her food away. The high flow mask really started bothering her. There was so much air coming out so fast it was hurting her nose and drying it out. She also said it was loud and it sounds like she is stuck in the back of a jet plane. She claimed the air was coming out her ears because she has tubes in her ears. She kept sliding the mask down her face because it was bothering her so much. The nurse came in and saw what she was doing and she was NOT happy about it. The nurse told her she needed to put her big girl panties on and suck it up! She assured her that if she wanted to get better than she needed to obey the rules. If she keeps it on long enough to get her oxygen level where it needs to be then they can lower the pressure. Needless to say, mom put it back on.

She had joint pain but the first couple of doses of prednisone helped relieve her pain. In return the high doses have increased her blood sugar so they have started giving her insulin. She started taking an immunosuppressent called cyclophosphamide which is a pretty serious drug used in cancer chemotherapy for auto immune problems. Hopefully she won't have to take it for long. Once she is in remission they can put her on a milder immunosuppressant as a maintenance's drug.

She is still very weak. She has no energy to do anything. Her feet are numb, she can't walk let alone stand. She has to use a bed pan. She is coughing up blood and she has blood in her urine and in her stool. The doctor said it might be attacking her kidney's now too so they took a urine sample. He told us that this disease gets worse before it gets better. He also told us the possibility of her being on a ventilator and the possibility of dialysis to clean the ANCA out of her blood if she gets worse.

It was another long exhausting day. Dad, Courtney and I spent the entire day with her and took turns taking breaks so that there was always someone by her side. We left the hospital around 10:30pm and went straight home and straight to bed. I was hoping that I would sleep better than the night before. I didn't sleep well previously because my mom had my pillow. It's hard for me to sleep without my pillow so I take it everywhere I go. I brought her pillow to the hospital with me this morning but she didn't want it. She said, "your not going to take your pillow away from me are you". I told her she could keep my pillow. If that is the only thing that makes her some what comfortable then she can keep it!

ICU Day 1

This morning around 11:15am I got a text from my dad saying my mom was in the emergency room. She had woke up feeling like she was dying. She refused to eat and she refused to take her medication. Dad informed her that if she wasn't going to take her medication then he was going to take her to the hospital. She said "I don't think I can even make it in the car to get to the hospital". She was so weak she couldn't even stand or get herself dressed. Dad called a neighbor to come over and help him get her dressed and into the car. He took her to the emergency room at the University of Utah Hospital. After an evaluation they found her oxygen level at 70 and it should stay above 90. It was no wonder she was completely exhausted, she was not getting enough oxygen. They asked if she has been on oxygen and when my dad told them no they were shocked. They admitted her into the hospital. They did a chest x ray which showed severe inflammation in her lungs. Doctors from the ICU examined her and talked with other doctors to determine if she should be in the ICU. At this point I decided I should start checking for flights to Salt Lake City so I could be with my mom. I found a flight that left St. George at 3:15 which only gave me about an hour to catch the flight. John called Delta to book the flight while I started packing. I hadn't had time or felt like eating all day. John told me I should eat before I leave. I kept watching the clock but assumed it was not that big of a deal to be too early because it's a small town and a small airport. On my way to the airport at 2:45 I got the news that she was headed to the ICU. We got to the airport at 2:55. St. George is a very small airport with only one gate. I ran inside not knowing where to go to check in. Straight ahead was the security check point. I saw a TSA man standing there and asked him where I was supposed to go. He said "are you on the SLC flight?" I said "yes". He said, " I don't think you are going to make it. I think they already closed the door". Already being on the verge of tears since finding out my mom was in the hospital I literally broke down crying begging and pleading to let me on the plane. I said, My mom is in the ICU. I need to get to her. Please! I have to get on that plane! Please! there has to be someone out there you can talk to". He said he did not have the authority to go out there and told me I was supposed to be here 25 minutes before the flight. I told him I just bought the ticket over the phone an hour ago packed my bags and got here as soon as I could. I said, "the plane is still here and it's not time for it to leave yet so why can't I get on?"  He said it was against federal regulation to open the door once it has been closed. He also said there was no one at the check in counter because they were helping to load the plane. He finally found someone from check in to talk to me. Again, I poured my heart out cried and begged to get on the plane. She made it clear that it was too late. Security was gone, the door was shut and connecting flights would be delayed if they let me on. She said they leave the check in counter 25 minutes before take off to load the plane and help on board because it is such a small airport. As I stood there crying John asked what I could do about getting another flight. We were told that was the last flight for the day, there were no flights out of Cedar City left for the day and all flights tomorrow are overbooked in Cedar City and Saint George because of the Iron Man Competition. I continued to have an emotional breakdown the whole way home. John demanded that he drive me to Salt Lake City to drop me off. He didn't want me driving because I was so upset. He loaded the kids in the car. We dropped Whitney off at a friends house for a birthday party and told her daddy would be back late but he would keep in touch with her and we could find a place for her to go. John planned on taking Caysen with us. I begged him not to take me to Salt Lake because I didn't want Caysen to go stir crazy in the car for 8 hours round trip and I didn't want him driving there and back because he had hardly slept for two days. I begged him to stay home with the kids and let me drive myself. John refused and he was already behind the wheel driving in route so I knew I wasn't getting out of it. I told him to at least pull over so we could find a place for Caysen to go. I called my friend Renae whom has been aware of my moms health problems. She was happy to take Caysen and offered him to spend the night. Now the kids were taken care of and I could focus on getting to my mom. I cried a little more and then began doing some more research about this horrible disease. I kept in touch with dad and my sister Courtney the whole way with any updates of moms condition. Before I knew it, I was there. Courtney and Jeremy had left just before I got there around 8:00pm. I met my dad by the main entrance. With my suitcase and pillow in tow I gave John a kiss goodbye. Just like that he was gone. He headed back to St. George to be with the kids.

Dad and I headed to the ICU. When mom saw me she said, "you didn't need to come". I told her I would never forgive myself if something happened to her and I wasn't there. I told her John is taking care of the kids and this is where I need to be.    

The assistant Rheumatologist examined her and started her on an IV with steroids. They are discussing which immunosuppressent drug would be the best for her. Hopefully they can get her started on that tomorrow. I spent the next few hours sitting by her side. She was not up for conversation because it is too hard for her to talk and she didn't feel like conversing. I sat and listened to her whimpers and moans. She looked miserable. My mother will always be beautiful in my eyes but she just looked like she felt miserable. She was also uncomfortable and complaining about the hospital pillow. I lifted her head and put my pillow under her head. She said "oh". That was all she needed to get more comfortable and all I needed to know I was not getting my pillow back.

Dad and I left around 10:30. We went to Applebee's to get some dinner. By this time I was completely exhausted! My eyes burned from crying, I was tired and I was hungry. As we walked in the restaurant the host said "how are you doing this evening"? Dad and I looked at each other and I looked back at the host and said, "I could tell you we're fine but that would be a lie".                                                                                                                                                                                                                    

Summertime

I love Summertime because........I love spending time with my kids. I don't have to be on a schedule. We get to stay up late and sleep in. We get to travel and go camping. The water at the lake is finally warm enough for me to get in and it's pageant season!

This summer we spent our time packing in as much fun as we could squeeze into one summer! School got out on my birthday. We celebrated our 12th anniversary the next day. A week later was Whitney's 9th birthday. We celebrated with a "tea party" with her friends. I competed in the Mrs. Utah United States pageant and made several trips to SLC for rehearsals, photo shoot and dinner Gala.We took the kids to the monster truck show. We spent a week in San Diego at the beach house. Caysen learned to ride a bike. Uncle Fred taught him on the beach and John practiced with him on the boardwalk. We went to Lego Land. Caysen got his teeth fixed with 12 silver crowns and about 16 cavities filled.We spent a week in SLC and took the kids to the Zoo, Taylorsville Dayzz, Lagoon and Park City where we road the Alpine slide and coaster. Caysen celebrated his 5th birthday with a Transformer party at Jumpin' Jacks. My friend Lisa moved to Las Vegas right when school got out. Her and the kids came to stay with us for 4 days and we spent a lot of time swimming and relaxing. I went to Las Vegas to see the Mrs. United States pageant. We went to Brian Head to spend the 4th of July with my new friend Megan at her condo. Two weeks later we went back with our toy hauler and went camping. We rode the razor on a trail to Panguitch Lake. John had knee surgery. Whitney practiced cheer all summer long and made team captain. Caysen started gymnastics. Whitney got her braces off. We went camping for our family reunion at the Lodge Pole campground in the Uinta Mountains then we went to Vernal for a couple of nights with my mom and dad where we took the kids to dinosaur land. My friend Leslie and her family came to visit and we spent 4 days swimming, shopping, boating, 4 wheeling, went to the Washington County fair where we saw the annual demolition derby and the kids walked on water. We had a BBQ, went frog hunting, saw Aladdin at Tauchaun and hiked the narrows at Zion's. After an eventful summer you can see why it's hard for it to come to an end but I'm pretty sure we were able to squeeze in all our favorite things! Now that summer is over I'm trying to be better about being on a schedule. I'm going to make it part of my schedule to update my blog at least once a week.

Family Ties

About a year ago we had a very challenging time in our marriage. Satan is real and he will try his hardest to break our families apart. We have learned how important it is to stay close to our Heavenly Father. We decided to make some changes to help us grow spiritually stronger. Since then, we started having family home evening, nightly scripture study and family prayer. We have grown spiritually, have a closer family bond, a better understanding of the gospel and a stronger testimony. I have so many blessings to be thankful for. I truly am grateful to have the gospel in my life. I am thankful for my Lord and Savior, I am thankful for the atonement and the gift of repentance. I am thankful for my challenges and trials in life because they make me grow stronger. I am thankful for a kind loving husband who is willing to grow spiritually with me. He is a hard worker, a wonderful husband and amazing father. I'm thankful for my children, the gift of motherhood and the opportunity to teach them. They are my life and the air I breath. I love their sweet spirits and do my best to raise them to be respectful, honest, compassionate and to treat everyone equal. I am thankful for life and all it brings; the ups and downs, learning new things, discovering new talents and just enjoying the journey.