LONG OVERDUE UPDATE
It has been awhile since I have given an update on sweet Abb. Home has been wonderful and anything back to "normal" the best medicine for her.
February 8 - Abb was able to go to Tyler's basketball game. We just sat up in the top bleachers and she and I wore a mask. One of us will usually wear a mask with her just so it makes it a little easier on her. I just wish people wouldn't stare or say comments, it doesn't help! It was so cute Ty's whole team when they were in the huddle before the game started turned and waved up at Abbey. Of course I got a tear in my eye!
February 9 - We headed in to Logan to meet with a florist about Alyssa's wedding. We had planned that Abb would just wear a mask so that she could be a part of the planning. As we pulled into the parking lot, Abb turned to me and said mom I can't go in they have fresh flowers. I had totally forgot, that is one of the things that she can't be around is fresh flowers because of the standing water that can harbor bacteria. It was so sad she had to sit in the car and face time us on our phones so that she could see what we were doing. Another restriction is fresh fruit and vegetable. Because of the risk of bacteria only those things that can be thoroughly cleaned on the outside and peeled are okay for her to eat. She is craving a lettuce salad and she won't be able to have that for awhile yet.
February 10 - We were just trying to decide how we would juggle the church schedule and who would go to what meetings. Randy and I had went downstairs and Liss and Abb were in Abb's room. Liss said that she could tell something just wasn't quite right when she asked Abb if she wanted to play Just Dance and she said no. Liss yelled mom come here Abb said she doesn't feel good. I can't even explain how my heart dropped. As I asked her what was wrong she said that it was hard to breathe and it hurt in her chest. Randy was immediately on the phone with PCMC. As Abb heard this she started to cry and kept saying I don't want to go back to the hospital. She was also itching a little but I didn't think much of that because she has dry skin but it seemed to intensify. We were told to take her to the ER. We headed for Logan but in my mind I just wanted to keep going to PCMC. As we drove and Liss held her in the back seat she started to complain about her lips and hands swelling. So then it seemed like an allergic reaction. As we pulled up to the ER, we tried to plan out how to keep her away from as many people in there as possible. It was decided Randy would go in first and bring out a wheelchair (sterilized) of course! We went right back to a room and we immediately went into lock down mode! Randy stood guard at the door and told everyone we wanted them to gown and mask and glove before going in. Randy coordinated the calls between PCMC liver team and the ER doctors and I gave them a rundown of her current medications. We racked our brains trying to think if we had done anything different; food, laundry detergent. Nothing stood out. She had never had an allergic reaction to anything before. They quickly gave her a dose of steroids and benadryl and a bag of fluids through her pic line. Her itching had intensified and made a few hives but they said what ever you do don't itch and make an open sore. They drew a set of labs and nothing had changed from our lab draw on Thursday which made us all feel relieved. She stabilized and now we just wanted to get out of there as quickly as possible. We made it home and we changed all the bedding and blankets and started a log of food. I fixed chicken alfredo for dinner and then a couple of hours later Abb started to get red around her mouth and chin. We had a new prescription in case this happened so we gave it to her. So since then we have not introduced her back to alfredo sauce or swiss cheese and so far so good! We only had a few minutes before sacrament meeting was to start and the next thing I knew Randy was ready to go and said he just really felt like he needed to go. After he came home he shared with me that he had bore his testimony and after was just sitting there and all of the sudden he had a warm feeling come over him and an impression that said she has a beautiful liver. These were the words that the surgeon had said to us after Abb's second surgery. We both felt like it was a prompting of reassurance from our Heavenly Father to us. We have reflected on this and felt great comfort in that fact that we can all receive revelation and comfort.
February 11 - This was going to be a girls only trip down to Clinic but we all felt after what had happened Sunday that he needed to go. Randy says that he could have stayed home but I really don't think he could have. Liss made the comment at Clinic that day that her and I were the ones falling apart at the hospital and Randy was the sane one and now it seemed just the opposite. I am amazed at how our minds and bodies work under stressful situations. I know that he lays in bed and is just waiting to hear any movement in Abb's room and he is at the door wondering if everything is alright. I haven't been able to leave her, I am sleeping on her floor in her room. Some nights I have to admit I just sit up by the bed and watch her chest rise and fall. In the hospital you get obsessed with the monitors and following the numbers that it is hard for your mind to find a peaceful place. But I think another tender mercy from our Heavenly Father is that fact that when one of us was struggling it was the other person's time of strength and faith. At Clinic we spoke with Barbie our social worker about our transitions back to work. Abb said I'm afraid they will call every five seconds!! She wasn't far from the truth. It was nice to have her to help us all set some boundaries because I think that Abb needs to have more space from our questions and inquisitive looks. Her hematocrit was a little lower so Dr. Jensen felt like she may be having a vitamin deficiency so he ordered labs be drawn at the hospital. She also had to have the dressing changed on her pic line which has to be done by the IV team. The easy day at Clinic turned into a very long day and we realized this was our first trip from Richmond.
February 8 - Abb was able to go to Tyler's basketball game. We just sat up in the top bleachers and she and I wore a mask. One of us will usually wear a mask with her just so it makes it a little easier on her. I just wish people wouldn't stare or say comments, it doesn't help! It was so cute Ty's whole team when they were in the huddle before the game started turned and waved up at Abbey. Of course I got a tear in my eye!
February 9 - We headed in to Logan to meet with a florist about Alyssa's wedding. We had planned that Abb would just wear a mask so that she could be a part of the planning. As we pulled into the parking lot, Abb turned to me and said mom I can't go in they have fresh flowers. I had totally forgot, that is one of the things that she can't be around is fresh flowers because of the standing water that can harbor bacteria. It was so sad she had to sit in the car and face time us on our phones so that she could see what we were doing. Another restriction is fresh fruit and vegetable. Because of the risk of bacteria only those things that can be thoroughly cleaned on the outside and peeled are okay for her to eat. She is craving a lettuce salad and she won't be able to have that for awhile yet.
February 10 - We were just trying to decide how we would juggle the church schedule and who would go to what meetings. Randy and I had went downstairs and Liss and Abb were in Abb's room. Liss said that she could tell something just wasn't quite right when she asked Abb if she wanted to play Just Dance and she said no. Liss yelled mom come here Abb said she doesn't feel good. I can't even explain how my heart dropped. As I asked her what was wrong she said that it was hard to breathe and it hurt in her chest. Randy was immediately on the phone with PCMC. As Abb heard this she started to cry and kept saying I don't want to go back to the hospital. She was also itching a little but I didn't think much of that because she has dry skin but it seemed to intensify. We were told to take her to the ER. We headed for Logan but in my mind I just wanted to keep going to PCMC. As we drove and Liss held her in the back seat she started to complain about her lips and hands swelling. So then it seemed like an allergic reaction. As we pulled up to the ER, we tried to plan out how to keep her away from as many people in there as possible. It was decided Randy would go in first and bring out a wheelchair (sterilized) of course! We went right back to a room and we immediately went into lock down mode! Randy stood guard at the door and told everyone we wanted them to gown and mask and glove before going in. Randy coordinated the calls between PCMC liver team and the ER doctors and I gave them a rundown of her current medications. We racked our brains trying to think if we had done anything different; food, laundry detergent. Nothing stood out. She had never had an allergic reaction to anything before. They quickly gave her a dose of steroids and benadryl and a bag of fluids through her pic line. Her itching had intensified and made a few hives but they said what ever you do don't itch and make an open sore. They drew a set of labs and nothing had changed from our lab draw on Thursday which made us all feel relieved. She stabilized and now we just wanted to get out of there as quickly as possible. We made it home and we changed all the bedding and blankets and started a log of food. I fixed chicken alfredo for dinner and then a couple of hours later Abb started to get red around her mouth and chin. We had a new prescription in case this happened so we gave it to her. So since then we have not introduced her back to alfredo sauce or swiss cheese and so far so good! We only had a few minutes before sacrament meeting was to start and the next thing I knew Randy was ready to go and said he just really felt like he needed to go. After he came home he shared with me that he had bore his testimony and after was just sitting there and all of the sudden he had a warm feeling come over him and an impression that said she has a beautiful liver. These were the words that the surgeon had said to us after Abb's second surgery. We both felt like it was a prompting of reassurance from our Heavenly Father to us. We have reflected on this and felt great comfort in that fact that we can all receive revelation and comfort.
February 11 - This was going to be a girls only trip down to Clinic but we all felt after what had happened Sunday that he needed to go. Randy says that he could have stayed home but I really don't think he could have. Liss made the comment at Clinic that day that her and I were the ones falling apart at the hospital and Randy was the sane one and now it seemed just the opposite. I am amazed at how our minds and bodies work under stressful situations. I know that he lays in bed and is just waiting to hear any movement in Abb's room and he is at the door wondering if everything is alright. I haven't been able to leave her, I am sleeping on her floor in her room. Some nights I have to admit I just sit up by the bed and watch her chest rise and fall. In the hospital you get obsessed with the monitors and following the numbers that it is hard for your mind to find a peaceful place. But I think another tender mercy from our Heavenly Father is that fact that when one of us was struggling it was the other person's time of strength and faith. At Clinic we spoke with Barbie our social worker about our transitions back to work. Abb said I'm afraid they will call every five seconds!! She wasn't far from the truth. It was nice to have her to help us all set some boundaries because I think that Abb needs to have more space from our questions and inquisitive looks. Her hematocrit was a little lower so Dr. Jensen felt like she may be having a vitamin deficiency so he ordered labs be drawn at the hospital. She also had to have the dressing changed on her pic line which has to be done by the IV team. The easy day at Clinic turned into a very long day and we realized this was our first trip from Richmond.
February 13 - Today is the day I had been dreading, back to work. I know that I didn't sleep at all between worrying about Abb and contemplating what is on my desk waiting. Liss was off of work that day so at least I was leaving "my baby" in good hands. I really felt like I was leaving my newborn baby. Anyway I will admit that I cried most of the way to work. My co-workers welcomed me back warmly with flowers, a cake, cards and genuine love. But it was an exhausting day emotionally, I felt like I was reliving Abb's journey over and over. But as I look back it felt good to have my mind occupied with other things. Abb didn't call or text me all day....so she obviously had a great time with Liss.
February 16 - Today marked 1 month since Abb's surgery to fix her hepatic artery and remove her bile duct. I went on the Utah Donor Registry and officially made myself an organ, tissue and eye donor! We also had the Make a Wish Coordinators visit our house. We were surprised when we were informed in the Hospital that Abb would be able to participate in the Make a Wish program. We certainly feel like she deserves it!
March 4 - Abb has been working diligently to complete a scrapbook with all of the pictures taken during her journey. I remember our social worker telling us to document with pictures and a journal. At first I thought how can I take pictures especially when there were tubes and lines coming in and out of her. But I did it and I am so glad that I did now. I think that the pictures have been therapy for her. She has completed a scrapbook which she was so excited to show at Clinic. I think she has even shared it with her BFF Maddie. I know that it was hard for her to look at, but I think Abb realizes this is a part of her. She also made Dr. Jensen, Sharon and Barbie a parachute bracelet. Abb's biggest hurdle has been boredom! We also had to have a visit at U of U Hospital Nephrology Department regarding Abb's kidneys. Our heads were swimming by the time we had both visits and we had some new concerns. Right now her kidneys are functioning great but long term with the medication that she is on for liver rejection can cause kidney disease. Part way through the visit Abb said, so am I going to have to have a kidney transplant? I felt so sad for her, she has been through so much. It was enlightening and we are going to be a little more aggressive in getting some of her meds reduced. We also decided we really didn't like that doctor and have had our records moved to a nephrologist that we saw during our visit that we all felt comfortable with. I guess this is another thing we have learned, we have to trust our doctors and if we don't feel comfortable do something about it.
March 17 - Abb is now back to school half days and loving it. I went and spoke with the class the day before to try and help them understand Abb's situation. I explained to them that just like they have blue eyes or brown hair that is just like Wilson's Disease Abb was just born with it. She is now cured of it because she has a new liver. Also if they bump her it's okay. If she wears a mask it is to protect her from getting sick and not because she can give you something. A boy in the class who is probably half of Abbey's size raised his hand and said maybe we could be her super powered body guards, it was so sweet. The class clapped and cheered when I said that Abb was going to come back to class. I will never forget how that made me feel. They have also experienced so much through this. I reflect back on hearing about her little girlfriends sitting on the benches in the lunchroom having a special fast for Abb. Friday March 8th was her first day back. She had butterflies and was so excited. After I dropped her off at class I just stood there I couldn't leave and as I walked to the office I couldn't hold it in anymore. I just started to cry, it had seemed like such a big goal to get back to school and she had made it!
To give you an idea of how she is doing. I don't think if you saw her you would even know the journey she has been through. She is jump roping, rip sticking, ice skating, jumping on the trampoline and having friends over. Of course we always check to see if the friend or anyone in their family has been sick. She is happy, beautiful, sweet, bubbly, busy with projects, kind, resilient and ready to give back.
Again, we love you all!
The Owen's
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