First stop was the hematology lab for a finger poke. Because they don't need a lot of blood for a CBC Nevan will now have to go for a finger poke. My stomach was in knots for him knowing how much he hates pokes. Nevan will have to do a finger poke every week now for 2 years. We walked into a busy waiting room and what seemed to me to be quite chaotic. The other parents didn't seem to look stressed however, so we took a seat and waited. We have to keep track ourselves of who walks in the 'poke' room next. Each child was in different stages of chemo and all different ages. Nevan's hair has not yet started to fall out however he has not once asked why so many of the other kids in the hospital don't have any hair. I thought for sure he would ask, but until he does, we will just deal with his own situation as it comes.
Each child went in for their finger pokes one by one, the 2 kids before Nevan were a little younger and cried as they came out... My stomach tensed a bit harder with each kid. Finally it was our turn and Craig shut the door so that Nevan wouldnt scare the kids after him. The nurse explained what she was going to do and Nevan was not happy. Like the brave little kid he is though, he handed over his thumb and she poked it. Nevan let out a small little whimper and then let her do her thing. She got what she needed, put on a bandaid and told him he was awesome. I felt a little guilty at that point for doubting his strength, I was so relieved for all of us.
Next, was clinic. We walked up to the 3rd floor and checked in with the receptionist. Nevan got a bracelet, which he will get every time and we walked to the back.... We opened the door to an enormous room that was packed wall to wall with games, books, blocks, TVs, video games, posters, activity tables and big comfy chairs.....this was clinic!?! It is like chuckie cheese in the hospital! All the kids that we were waiting with for finger pokes had settled in playing their favorite game or watching their favorite show. This is where we wait for his blood results and to receive his chemo or transfusions if needed. The perimeter of the room is lined with exam lanes and private rooms. On one door there was a poster with a list of kids names and numerous stickers beside them.... They are counting down until they are done their series of intramuscular injections.... A very painful procedure that is required to keep the cancer from returning. One of Nevan's nurses informed us that Nevan should be receiving this chemo by IV.. Thank God.... Looking at that sticker poster gave us such a sense of relief... Relief was short lived....
We met Nevan's clinic nurse and she went over Nevan's treatment regime with us. A short time into the conversation, she started describing the muscular injections....I stopped her quick and told her Nevan was supposed to be receiving that drug through his PICC. She looked a bit confused and told me that unfortunately, the nurse was referring to those kids that are involved in a study they are doing to see the effects of the IV drug verses the muscle injections and Nevan is not part of that study. My stomach was now as low as it could have gotten. Nevan will have to get these shots after all.... 30 of them to be exact.... 30!!! Ugh... After talking a bit more about why, I was comfortable with this decision. As much as I don't want him to have to go through it, this method is proven effective, while the IV method is still questionable. Knowing this, even if we were offered the study, I doubt Craig and I would have consented for his involvement. So 30 shots over 30 weeks... There will be a big reward for Nevan after that phase is complete! The older kids have said that after the shots are done, they begin to feel like new people... Better, healthier and their hair starts to grow back. We can help Nevan through this.... Better, healthier.... A perfect reward for all of us!
Over night Nevan's stomach ache got worse. Nevan got assessed by Dr Breaky for this and they decided to send him home with another medication. Nevan took this pill in a spoonful of chocolate pudding no problem, but his pain did not go away. We tried to keep him comfortable over night but as the pain got worse, Nevan stopped eating or taking meds and vomited what ever liquid we could get him to drink. Back to emerg we went....
Nevan's heart rate was around 155 (normal is between 70 - 90) when we reached emerg and he was again severely dehydrated. They gave him two bolus' of saline and administered a much stronger ant-acid into his IV. He was also given an anti nauseant and given his treatment meds to catch up for the day. They did bloodwork and noted that all his counts had dropped. His immunity had dropped down from an already very low 0.1 to 0 (normal is between 1.5 - 8) and his platelettes were 10 (normal is between 150 - 400). They transfused him platelets and monitored his heart rate.
After a few hours, Nevan's heart rate would not drop and he spiked a fever. Immediately they put him on antibiotics administered Tylenol and took blood to culture. Every fever requires a blood culture to find out whether the infection is bacterial or viral. If viral, all they can do is support his body through trying to fight it itself and bacterial they will need to administer the correct dose and type of antibiotics if not already doing so. The antibiotic is a 48hr treatment and this is also how long it will take for his blood culture to be done so they admitted us back up to the ward for at least this time period... Possibly longer.
There were 7 kids waiting for beds in the ER so we ended up spending the night there... Never did I think I would miss my 'chair bed' as much as I did at that moment. I spent the night in a regular chair beside Nevan who was finally comfortable and fast asleep!
Cute Story of the Day
1:00am
Nevan: "Mommy wake up!! I need to push my button! I need a nurse right now!"
Me: "Oh my gosh Nevan, just push it then!! What's wrong?? Do you need to throw up? Pee? Are you hurting?
Nevan: "I just need her!"
Me: "Ok, she'll be here in a sec, hang in there"
In walks the nurse: "What's the matter Nevan?"
Nevan: "Can I please have a peanut butter sandwich on white bread..... No crust"
Me: big sigh of relief followed by the biggest eye roll ever! No wonder Nevan loves the hospital!
Each child went in for their finger pokes one by one, the 2 kids before Nevan were a little younger and cried as they came out... My stomach tensed a bit harder with each kid. Finally it was our turn and Craig shut the door so that Nevan wouldnt scare the kids after him. The nurse explained what she was going to do and Nevan was not happy. Like the brave little kid he is though, he handed over his thumb and she poked it. Nevan let out a small little whimper and then let her do her thing. She got what she needed, put on a bandaid and told him he was awesome. I felt a little guilty at that point for doubting his strength, I was so relieved for all of us.
Next, was clinic. We walked up to the 3rd floor and checked in with the receptionist. Nevan got a bracelet, which he will get every time and we walked to the back.... We opened the door to an enormous room that was packed wall to wall with games, books, blocks, TVs, video games, posters, activity tables and big comfy chairs.....this was clinic!?! It is like chuckie cheese in the hospital! All the kids that we were waiting with for finger pokes had settled in playing their favorite game or watching their favorite show. This is where we wait for his blood results and to receive his chemo or transfusions if needed. The perimeter of the room is lined with exam lanes and private rooms. On one door there was a poster with a list of kids names and numerous stickers beside them.... They are counting down until they are done their series of intramuscular injections.... A very painful procedure that is required to keep the cancer from returning. One of Nevan's nurses informed us that Nevan should be receiving this chemo by IV.. Thank God.... Looking at that sticker poster gave us such a sense of relief... Relief was short lived....
We met Nevan's clinic nurse and she went over Nevan's treatment regime with us. A short time into the conversation, she started describing the muscular injections....I stopped her quick and told her Nevan was supposed to be receiving that drug through his PICC. She looked a bit confused and told me that unfortunately, the nurse was referring to those kids that are involved in a study they are doing to see the effects of the IV drug verses the muscle injections and Nevan is not part of that study. My stomach was now as low as it could have gotten. Nevan will have to get these shots after all.... 30 of them to be exact.... 30!!! Ugh... After talking a bit more about why, I was comfortable with this decision. As much as I don't want him to have to go through it, this method is proven effective, while the IV method is still questionable. Knowing this, even if we were offered the study, I doubt Craig and I would have consented for his involvement. So 30 shots over 30 weeks... There will be a big reward for Nevan after that phase is complete! The older kids have said that after the shots are done, they begin to feel like new people... Better, healthier and their hair starts to grow back. We can help Nevan through this.... Better, healthier.... A perfect reward for all of us!
Over night Nevan's stomach ache got worse. Nevan got assessed by Dr Breaky for this and they decided to send him home with another medication. Nevan took this pill in a spoonful of chocolate pudding no problem, but his pain did not go away. We tried to keep him comfortable over night but as the pain got worse, Nevan stopped eating or taking meds and vomited what ever liquid we could get him to drink. Back to emerg we went....
Nevan's heart rate was around 155 (normal is between 70 - 90) when we reached emerg and he was again severely dehydrated. They gave him two bolus' of saline and administered a much stronger ant-acid into his IV. He was also given an anti nauseant and given his treatment meds to catch up for the day. They did bloodwork and noted that all his counts had dropped. His immunity had dropped down from an already very low 0.1 to 0 (normal is between 1.5 - 8) and his platelettes were 10 (normal is between 150 - 400). They transfused him platelets and monitored his heart rate.
After a few hours, Nevan's heart rate would not drop and he spiked a fever. Immediately they put him on antibiotics administered Tylenol and took blood to culture. Every fever requires a blood culture to find out whether the infection is bacterial or viral. If viral, all they can do is support his body through trying to fight it itself and bacterial they will need to administer the correct dose and type of antibiotics if not already doing so. The antibiotic is a 48hr treatment and this is also how long it will take for his blood culture to be done so they admitted us back up to the ward for at least this time period... Possibly longer.
There were 7 kids waiting for beds in the ER so we ended up spending the night there... Never did I think I would miss my 'chair bed' as much as I did at that moment. I spent the night in a regular chair beside Nevan who was finally comfortable and fast asleep!
Cute Story of the Day
1:00am
Nevan: "Mommy wake up!! I need to push my button! I need a nurse right now!"
Me: "Oh my gosh Nevan, just push it then!! What's wrong?? Do you need to throw up? Pee? Are you hurting?
Nevan: "I just need her!"
Me: "Ok, she'll be here in a sec, hang in there"
In walks the nurse: "What's the matter Nevan?"
Nevan: "Can I please have a peanut butter sandwich on white bread..... No crust"
Me: big sigh of relief followed by the biggest eye roll ever! No wonder Nevan loves the hospital!
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