Well, if you havent already heard-we are back at Childrens Mercy. Friday night Blake woke up crying of pain and wanted to sleep with me. So I went ahead and let him. It was a lot easier giving him his chemo at midnight since I was able to use the bathroom light and he was in a bigger bed. He didnt sleep very well all night. In the morning I gave him his next dose of chemo-and again he cried and sounded like he was in pain. When Phil got home from work later that morning I had him call the Hemoc/Onc on call nurse. She said we should try giving him the anti-nausea medicine. So we did, hoping that it would help him feel better. Unfortunately 30 min later he threw up-twice. Poor kid. The majority of the day we all slept. Blake woke up around noon-after I gave him his next dose of chemo-and wanted to watch "Elmo world"(Sesame Street). So I took him out to the living room to watch it. He felt right asleep, and then I did too. At 2:30 he woke up and sounded like he was sore. I felt his forehead and I knew he had to have a fever. I took his temp and it was 102.2. The doctors told us if its 101.5 or higher its considered an emergency, and to be at the ER within an hour. So we called the on call nurse to let her know we were headed to the ER and to call ahead so they would expect us. Phil worked the night before so he was sleeping. When I went back to let him know he was up and dressed brushing his teeth before I even had a nurse on the phone. lol. Normally he is a hard one to wake up. So we were in the car-bag packed(just in case)and on our way to Childrens Mercy ER. We stopped to get gas and coffee-and still arrived to the hospital within the hour. We were able to go right back to a room, lucky for Blake he only had to wear his mask for a short time. Once we got back to the room they looked him over. We saw that his tummy was swollen where the g-tube was put in. We hadn't noticed it when we were at the house. Over the next several hours they ran an X-ray, CT and accessed his port for the first time without numbing cream. He was such a trooper. I was so proud of him. Finally around 9pm we were taken up to our room. Again we were on 4 Henson and this time room 5 not 3 lol. I gave Blake his last oral dose of chemo for this cycle at midnight. Im glad thats over for now. It was hard on both of us. I know the more I do it the easier it will be-but its hard to get good sleep when you have to wake up to give him the pain med and anti-nausea med and then wait 30 min to give him the chemo-which i have to mix. Im hoping it was hard this time because we just got out of the hospital and I was tired from that. Its really not difficult.
They let me know in the middle of the night the CT came back showing NO absess, and the X-ray didnt show anything abnormal. His white blood cell count was high-so there are several things that could mean. Infection, virus, inflamation, etc. They are giving him an antibiotic-he will have to continue for 7 days. We are still waiting to see if the cultures grow any infection-if by tomorrow they dont find anything, hopefully we will be headed home. So today we hung out in our room. My grandparents stopped by, then my mom and Arlene brought me some lunch stuff, Katie and Lauren showed up that night. I know Blake loves seeing everyone. Christian once again came up to stay with me since Phil has to work. Phil stopped by for a few hours before work-Blake was askin about him a lot during the day. I know he misses him when we are up here and Phil has to work. Then somehow the needle going from the iv into the port became dislodged filling the area around the port with fluid.This was pretty painful for Blake. He cried so hard. They had to take the bandage off and reinsert the needle into his port. It was hard to sit and watch. Then they sterilized the area and recovered it with a new bandage. He was so exhausted after that. They gave him a pain med to help with the discomfort, and finally after fighting it-he fell asleep. Today was pretty exhausting even though we didnt do much. I am so ready to be home and back to normal everyday life. Well as normal as we can get lol. I cant imagine having to stay up here long term like a lot of the families do. I have a whole new appreciation for being able to stay home during Blakes chemo treatments. I know things can always be worse-Im trying to continue my appreciation of all the things positive in our lives and look at all the amazing things that have happened during this time. I know my last couple posts havent sounded as peppy as my previoius ones. Its been a rough week-and im just trying my best to continue taking it one day at a time to get through this week. I am so thankful for everyone who is praying, supporting, and thinking of us during this time. Thank you all! Seriously!
They let me know in the middle of the night the CT came back showing NO absess, and the X-ray didnt show anything abnormal. His white blood cell count was high-so there are several things that could mean. Infection, virus, inflamation, etc. They are giving him an antibiotic-he will have to continue for 7 days. We are still waiting to see if the cultures grow any infection-if by tomorrow they dont find anything, hopefully we will be headed home. So today we hung out in our room. My grandparents stopped by, then my mom and Arlene brought me some lunch stuff, Katie and Lauren showed up that night. I know Blake loves seeing everyone. Christian once again came up to stay with me since Phil has to work. Phil stopped by for a few hours before work-Blake was askin about him a lot during the day. I know he misses him when we are up here and Phil has to work. Then somehow the needle going from the iv into the port became dislodged filling the area around the port with fluid.This was pretty painful for Blake. He cried so hard. They had to take the bandage off and reinsert the needle into his port. It was hard to sit and watch. Then they sterilized the area and recovered it with a new bandage. He was so exhausted after that. They gave him a pain med to help with the discomfort, and finally after fighting it-he fell asleep. Today was pretty exhausting even though we didnt do much. I am so ready to be home and back to normal everyday life. Well as normal as we can get lol. I cant imagine having to stay up here long term like a lot of the families do. I have a whole new appreciation for being able to stay home during Blakes chemo treatments. I know things can always be worse-Im trying to continue my appreciation of all the things positive in our lives and look at all the amazing things that have happened during this time. I know my last couple posts havent sounded as peppy as my previoius ones. Its been a rough week-and im just trying my best to continue taking it one day at a time to get through this week. I am so thankful for everyone who is praying, supporting, and thinking of us during this time. Thank you all! Seriously!
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