Today seemed like a waste. We went to the hospital at 8:00am for the PET scan as scheduled. A nurse came in to administer Sophie's steroid and prevacid by IV so that she could take them without food; we had been putting them in applesauce up to this point. The PET scan required an empty stomach for 8 hours with the exception of sugar free clear liquids up to 2 hours prior to the exam. As the IV drip was finishing around 9:00, the radiation/sedation nurse came in and told us that we would not be able to do the sedation for the PET Scan because the medicine in the IV was being given with sugar water instead of plain saline! UGH! We were sent home with nothing else scheduled for the rest of the day. Sophie was the only happy one - we made a stop in the cafeteria so she could eat, and she seemed content, and consequently so was I because she stopped whining, "I'm hungry" for the first time since 4:00am!
This mishap was the second time we had experienced a miscommunication among the St. Jude staff. The first was on Friday and involved the same "empty stomach" misunderstanding. We told the doctor that we were concerned that this would delay her starting the radiation treatment, but he reassured us that she will still start on Wednesday as planned and we'll just fit the PET scan in when we can.
The up side to having the day free was getting to spend time with baby Sarah who is growing up before our eyes. We've been so lucky to have family here caring for her and waking up with her (yes, she is still getting up at night too). She is quite the little beast and trying her darndest to get on her knees to crawl. She will be 8 months on Wednesday; it amazes me how fast time goes. Scary considering how precious time is for us these days.
Sophie enjoys seeing her sister too, and we enjoy seeing them together. Sophie's day seemed uneventful until later in the day. We had decided to leave the IV needle in her port so that she wouldn't have to be poked tomorrow morning when they sedate her (once again) for the radiation films. These films are needed to confirm the radiation locations on her head. This was the first time we had left the needle in, and because Sophie's is under her breast in a spot that is hard to protect, she experienced some bleeding through her shirt. It was minimal, but we were a little nervous so we took her back up to the hospital to have the bandaged replaced. She was NOT at all happy about that. Around 6:30pm we noticed some more blood, but after talking with the nurse on the phone, we were told that a small amount is normal, as long as there is not blood in the tubing, or gushing around the needle, we shouldn't worry!
Sophie threw up a small amount of watermelon tonight, and seemed extra fatigued. I'm getting worried about her right hand/arm. Her thumb seems permanently bent, and we've been trying to work with her in an effort to prevent her from losing all range of motion. Her moods were up and down all day. She had a major fit this afternoon complete with yelling, swinging, kicking, and throwing pretzels and blankets because I told her I had to stop rubbing her back for a few minutes due to the tingling in my own arm after having rubbed her for 45 minutes. She finally settled down, but throughout the tantrum I asked myself over and over again, "who is this child?" I definitely can't wait until we can begin to wean her off the steroids.
Well Marc has convinced me to go back to the hotel tonight and leave him here with Sophie. I am a little nervous that she will wake up and want me, but Marc wants a turn to help and I would like a chance to sleep - I'm hoping I will be able to.
We will try to post again tomorrow after the radiation films. Those are not until 1:00, so right now, pray that we may distract her from her hunger pains. Right now the plan is to wake her around 3:00am (she'll probably be up anyway!) and give her something to eat.
We are still trying to take one day at a time, and surround ourselves with positive thoughts which has been hard to do. We keep finding ourselves reading websites of children with the same diagnosis as Sophie, and so many end in the same way - around 12 months after diagnosis. Please pray for all these children and their families who are battling this same "monster" and also for the doctors and researchers so that a cure may be found.
God Bless, and thank you for the prayers. Please keep them coming.
This mishap was the second time we had experienced a miscommunication among the St. Jude staff. The first was on Friday and involved the same "empty stomach" misunderstanding. We told the doctor that we were concerned that this would delay her starting the radiation treatment, but he reassured us that she will still start on Wednesday as planned and we'll just fit the PET scan in when we can.
The up side to having the day free was getting to spend time with baby Sarah who is growing up before our eyes. We've been so lucky to have family here caring for her and waking up with her (yes, she is still getting up at night too). She is quite the little beast and trying her darndest to get on her knees to crawl. She will be 8 months on Wednesday; it amazes me how fast time goes. Scary considering how precious time is for us these days.
Sophie enjoys seeing her sister too, and we enjoy seeing them together. Sophie's day seemed uneventful until later in the day. We had decided to leave the IV needle in her port so that she wouldn't have to be poked tomorrow morning when they sedate her (once again) for the radiation films. These films are needed to confirm the radiation locations on her head. This was the first time we had left the needle in, and because Sophie's is under her breast in a spot that is hard to protect, she experienced some bleeding through her shirt. It was minimal, but we were a little nervous so we took her back up to the hospital to have the bandaged replaced. She was NOT at all happy about that. Around 6:30pm we noticed some more blood, but after talking with the nurse on the phone, we were told that a small amount is normal, as long as there is not blood in the tubing, or gushing around the needle, we shouldn't worry!
Sophie threw up a small amount of watermelon tonight, and seemed extra fatigued. I'm getting worried about her right hand/arm. Her thumb seems permanently bent, and we've been trying to work with her in an effort to prevent her from losing all range of motion. Her moods were up and down all day. She had a major fit this afternoon complete with yelling, swinging, kicking, and throwing pretzels and blankets because I told her I had to stop rubbing her back for a few minutes due to the tingling in my own arm after having rubbed her for 45 minutes. She finally settled down, but throughout the tantrum I asked myself over and over again, "who is this child?" I definitely can't wait until we can begin to wean her off the steroids.
Well Marc has convinced me to go back to the hotel tonight and leave him here with Sophie. I am a little nervous that she will wake up and want me, but Marc wants a turn to help and I would like a chance to sleep - I'm hoping I will be able to.
We will try to post again tomorrow after the radiation films. Those are not until 1:00, so right now, pray that we may distract her from her hunger pains. Right now the plan is to wake her around 3:00am (she'll probably be up anyway!) and give her something to eat.
We are still trying to take one day at a time, and surround ourselves with positive thoughts which has been hard to do. We keep finding ourselves reading websites of children with the same diagnosis as Sophie, and so many end in the same way - around 12 months after diagnosis. Please pray for all these children and their families who are battling this same "monster" and also for the doctors and researchers so that a cure may be found.
God Bless, and thank you for the prayers. Please keep them coming.
7 comments:
Oh Emily, my heart just breaks. Leslie said it for everyone....."thank you so much for your updates." An hour does not go by during the day when I don't check to see if there is one. They have become my obsession. I am amazed at the kindness of people and the prayers that have so quickly spread for Sophie around the world. There truly is beauty in every day so don't stop looking for it. Marcus, well,.....I worry about him so much.... please Emily, take care of him too. I love you sweetheart.
Marc and Emily... your updates are so appreciated. We pray everyday and know that God will give you the strength to handle anything that comes your way. Please give Sophie all of our love and know that you whole family is still constantly in our thoughts.
Geoff and Emily Stover
I check Sophie's (and Maria's) website every morning and night and a couple of times in between-even when my email indicates there aren't any updates! So, yes, thank you so much for using those scarce moments of "free time" to share what has happened in your day. We know that every second of your day is so precious now more than ever. How wonderful to have family there holding you up. I can imagine that you, Emily, need your mommy right now as much as Sophie is needing you; Sophie's little sister is certainly good medicine for her. Today I am praying that the procedures run quickly and without mishap so that tomorrow you can start melting that ice cube! Joining everyone all over the world (look at that map!) in prayer,
Paula Koziol
Emily,
Keep praying for the "others" but try not to dwell on the how those journeys come to a close. I know that is so much easier for someone like me to say who is not experiencing first hand what you are every day, but I can came across a quote this morning and it seemed fitting, "Fear is that little darkroom where negatives are developed". I do believe that if we keep focused on hope, positive things will happen.
I hope that the evening went well with Marc and Sophie. When I spoke with him yesterday, he mentioned what little, if any, sleep you had been getting and I know how badly he wants to help and to take some of the weight off your shoulders. I hope he is able to do so, for the sake of you both.
I love you all!
After reading about your beautiful little baby girl on Maria's website I had to visit this site. I'm sure everyone praying for Maria will pray for Sophie and all the little sweeties with this monster of a disease. God Bless You all, Rosaleen (Ed's Cousin)
May God be with all of you as you begin this ordeal. Sophie is a beautiful little girl, and she seems to be graced with the same fighting spirit as Maria McNamara.
You are in my prayers. I am so sorry that you have to go through this. May you know that others care and are praying for you and your little Sophie.
Avon Lake resident
I am sending you a CD to listen to. You said you are going to explore alternative medicine and that's what it's about. You can get the seeds discussed at asiachi.com They are cheap! It seems so simplistic, but what if it works?? I continue to pray without ceasing for all of you. Marian
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