I write to you now on Thursday morning from home, while Nevan is at the hospital with Craig having an IV dose of Chemo. This is the first time I have missed anything Nevan has gone through since the beginning. Life happens and I am sure it won't be the last thing I am forced to miss, but the first is definitely the hardest.
The reason I am here and not at the hospital... the reason that I have not been able to come close to Nevan at all in the last 3 days is because after nursing Nylah through a horrible cough and helping Nevan get over the Norwalk Virus... I am now fighting off both! I am trying my best to recover, however trying not to vomit while coughing uncontrollably... not so easy!!
Since I have known him, I don't remember Craig ever having a bad cough, so I think he is safe there and he already got a stomach virus about a month ago forcing him to miss some of Nevan's first nights at the hospital, so I am pretty sure he will be saved from getting Norwalk again. Nylah is staying at my parents place just to be extra safe so hopefully the spread of sickness will stop with me.
Because of having 2 sick kids and a sick wife, Craig has had to take on the roll of super dad... which he is handling very well. In one day Nevan is administered meds 12 times a day plus a mixture of feeds and water through a pump while he is sleeping. Nylah is on an inhaler 3 x a day, antibiotics once a day and a narcotic to help her sleep. I am on antibiotics once a day, a cough mixture 4 times a day and gravol twice a day. That's 24 meds to administer in one day plus temperatures to check, heart rate counts, meals to make and fluids to refill. Craig did this yesterday all without skipping a beat and found time in the middle of it all to build a shed pad in the back yard!
On top of dealing with all the new hands dealt to us with caring for Nevan, we moved into a new home about 4 weeks before Nevan was diagnosed. It is larger than our last home which is great, but we bought the house because it had a huge backyard with nothing in it, an unfinished basement and ugly builders grade flooring that we could rip out and make our own. In our old house we worked hard to make so many 'family' areas throughout our house. We built a deck for us and an attached stone pad in the back so the kids could play or ride their bikes. For the winter we finished our basement with a fireplace, oversized couch, TV and attached playroom so again, the whole family could do what they want while still being together. Our plan was to do the same with this house... make it our own and create family spaces throughout. Unfortunately, now when it is even more important to have family space as Nevan will be confined to our home for much of the next 2 years... we don't have a backyard, no family basement and floors that make me cringe when I think about Nevan playing on it. I wish one of those people on HGTV could come in and work their magic for us.
Since being released from the hospital, Nevan's spirits have gotten alot better. He still feels pretty sad and sometimes shows resistance to things we need him to do, but his is far more interactive and we see more glimpses of our normal Nevan than when he was in the hospital. I am very much looking forward to when the Steroid phase stops just to see how much these moods will fade. The one thing I will miss however is his appetite. Nevan is eating more than he ever has. Yes it is Spaghetti for Breakfast, Lunch and Dinner, but I will take it! My good friend Stephanie, made Nevan pasta sauce that includes pureed vegetables like Kale and Zucchini along with organic turkey and Quinoa meatballs.... so eat up my little boy... eat up! Even with this veracious appetite, he is not gaining the weight back as quickly as I would like, so we have him on feeds over night. It is a mixture of Pediasure meal replacement shakes and water. His sensitivity to the NG tube is not allowing us to get in as many calories as we would like, but anything will do at this point. Nevan has a home nurse that monitors him and helps us through with things like meds, feeds and handling his medical equipment.
Nevan's hair has thinned out quite a bit now and he leaves it behind everywhere he sits or lies. We joke that he sheds more than the cat now and we literally follow him around with a lint roller. As soon as we saw that he was beginning to leave hair on his pillow, we decided to have a talk with him about it. I brought up pictures of other kids with cancer on the computer and showed Nevan. We showed him that he wasn't alone and that lots of other kids are battling the same thing. We also wanted to show him that he will lose his hair just like those kids also. He was very quiet through the whole conversation and I wasn't sure how he was going to react. We told him that we could cut his hair now so that he wouldn't have to watch it fall out or we could leave it. He said that he wanted to watch it fall out, which didn't really suprise me since he needs to watch everything... from his blood draws to his dressing changes. While most kids shut their eyes and grit their teeth, Nevan must see all that is happening and asks questions throughout.
In the next few weeks, Craig and I will be reaching out to all our friends and family to cash in on all those offers of help. We will be organizing a few VERY much needed fundraising events this fall and will need some help with planning, ideas and volunteers to help. The amount of help and support we have recieved so far this past month has been overwhelming and we really want to thank each and every one of you... which we will... in time.
Cute Story of the Day:
Me: "Nevan can we try to eat something other than spaghetti?"
Nevan: "Hmmm thats a good idea mommy, last time I fulled myself up"
Me: " great, what should we make?"
Nevan: " How about different kind of noodles"
Me: "Oh, ok... what would you like on the noodles? How about a bunch of vegetables and some cheese?"
Nevan: " That would be perc-fect! How about some tomatos, and mushrooms, and carrots... but no peels on the tomatoes and I don't want to see the carrots.... and some meat."
Me: "So spaghetti sauce?"
Nevan: "Yes, but not on Spaghetti Noodles!"
Thursday, August 16, 2012
Wednesday, August 15, 2012
NORWALK (dad)
**this blog covers last Friday through Wednesday** It's Friday afternoon and we have been given the go ahead to take Nevan home tonight. Anita and I are exhausted. I can't say that we are exactly excited to come home. Leaving the hospital never comes with the reassurance that he is now cured or even okay. This time it feels even worse than before. Nevan has lost 6lbs. This is hardly a small amount considering he is only 4 years old and already lean (daddy's genes) to begin with. We will need to push eating and fluids to regain what he has lost. He was readmitted the previous Friday. His fluids were very low and he was not eating or taking his meds. We had the NG tube put in the next day to eliminate any nutrition or med concerns. By mid week he had shown signs of weight loss. On discharge he weighed 6 pounds less then when admitted at the beginning of the second week. He now has little to no body fat. He feels fragile to hold, and he is. He struggles to walk. He cannot negotiate stairs and has fallen down twice. We thought the weight loss was due to the vomiting and lack of fluids. It was actually however hours before discharge that his stool sample test results came back. They found that he had Norwalk Virus. From what we can figure he got it from contact with someone or something in the hospital. Anita and I will have to go back and add entries for the first week of this journey. I also caught a Norwalk virus or 24 hour flu bug from the hospital on the first day nevan was admitted when this all began.
It's now Wednesday and Nevan's vitals seem stable. No fever but heart rate still sits around 120+. Vomiting and diarrhea have gone away. Except for one occasion which we will blame that on the 4th bowl of spaghetti he ate back to back. It's his new comfort food. It helps with swallowing his meds. Even after over a week he can still feel fluid passing through his tube and it causes him to gag. We may be able to take the tube out next week but it depends on his eating habits and his willingness to take his medication. He's still pretty lethargic and depressed from the situation. We try our best to engage him but he's not interested.
Anita will write soon. She too has been ill with what appears to be the same virus. This means she cannot have any contact with Nevan. He may have some resistance considering he was just sick with the virus but its not worth the risk. I spend the day with him and administer his meds every time. I do his meds as often as Anita but we switch back and forth to maintain his comfort with both of us for just such an occasion. After dinner he starts crying out of nowhere. I ask whats wrong. He says " I'm sad that mommy's sick". I'm sick of him being sad. Its been weeks since he's been himself. I'm worried I won't be able to help him find himself again when this phase is finished. The tunnel is dark and narrow and will be for the next few weeks, or more. Some people say that these situations can test ones faith. I'll reserve my opinion on religion. A discussion him and I will have in 15 years over an 18 year malt. My patience is being tested and my temper among other things. In the next post I will discuss the financial impact that is being felt by all of this and the stress that follows.
Funny thing of the day. Nevan sees that I bought Cinnamon Toast Crunch. "Daddy did you get my favorite cereal?" ..." You make me so happy"...
It's now Wednesday and Nevan's vitals seem stable. No fever but heart rate still sits around 120+. Vomiting and diarrhea have gone away. Except for one occasion which we will blame that on the 4th bowl of spaghetti he ate back to back. It's his new comfort food. It helps with swallowing his meds. Even after over a week he can still feel fluid passing through his tube and it causes him to gag. We may be able to take the tube out next week but it depends on his eating habits and his willingness to take his medication. He's still pretty lethargic and depressed from the situation. We try our best to engage him but he's not interested.
Anita will write soon. She too has been ill with what appears to be the same virus. This means she cannot have any contact with Nevan. He may have some resistance considering he was just sick with the virus but its not worth the risk. I spend the day with him and administer his meds every time. I do his meds as often as Anita but we switch back and forth to maintain his comfort with both of us for just such an occasion. After dinner he starts crying out of nowhere. I ask whats wrong. He says " I'm sad that mommy's sick". I'm sick of him being sad. Its been weeks since he's been himself. I'm worried I won't be able to help him find himself again when this phase is finished. The tunnel is dark and narrow and will be for the next few weeks, or more. Some people say that these situations can test ones faith. I'll reserve my opinion on religion. A discussion him and I will have in 15 years over an 18 year malt. My patience is being tested and my temper among other things. In the next post I will discuss the financial impact that is being felt by all of this and the stress that follows.
Funny thing of the day. Nevan sees that I bought Cinnamon Toast Crunch. "Daddy did you get my favorite cereal?" ..." You make me so happy"...
Thursday, August 9, 2012
Cheese, cheese and more cheese please!
Since the emotional and terrifying initial transfer that brought Nevan on a stretcher to Ward 3B, walking down the hall to take him back here now brings us a sense of calm... Reassurance that he will be back in the care of the awesome nurses we have grown very fond of.
Nevan was just waking up from sedation after receiving his Intra-thecal Chemo.
Nevan: "Mommy, there is something strange going on with my Bum.."
Nurse looks at me funny because they didn't do anything to his bum
Me: "oh, he thinks his tailbone is part of his bum"
Nurse: "ahhhh.... Ok"
Nevan: "it must be the bugs crawling around down there"
Nurse: "bugs???"
Daddy: "we told him that he has bugs in his blood"
Nurse: " uh huh... Ok... Well I can't let him go until I am sure he isn't hallucinating. Most kids won't eat, but he needs to show me he can take a drink of water as well"
Me: "Nevan can you take a sip of water for the nurse?"
Nevan: "no, but I can eat some flat cheese!"
Nurse: "ummm ok, Not quite sure what to say here, so I'll just walk u back to your room"
Nevan was assigned to room 15 this time, right next door to his special friend. Unfortunately, the fast friends have not played together since their first meeting, when the Drs advised against it because of their compromised immune systems. It has not stopped them from talking about each other constantly and just knowing that he was right next door made Nevan feel a bit better.
Nevan is feeling the effects of the chemo much more now. His moods are drastic and he sometimes gets very sad. He hardly smiles and at times makes no attempt to acknowledge anyone in the room including Craig and I. He spends most of the day eating or staring off into space. It is difficult to watch but we know that when the steroids stop, this temperament will also stop. Nevan has begun to get sores in his mouth as well as pains in his legs. He no longer travels more than a few steps at a time and needs to be held when standing or he will topple over like a toddler learning to walk.
Probably the most physically alarming change (for me anyway) is his weight loss. Anyone who knows Nevan, knows he is of slight build to begin with, but since getting sick has lost about 10% of his body weight. He looks gaunt and emaciated, his spine sticks out and I can count his ribs from the back. His thighs are bony, his hips stick out and he has absolutely no bum left. Nylah, at 2yrs old weighs 12kg and Nevan at 4 and almost a foot taller weighs 14kg. We were hopeful that he would be able to gain some weight because of the fact that the steroids are giving him the appetite of a bear and he literally eats all day and night. But with the stress of his illness and constantly having some sort of pain, he is still losing weight. We decided to give the NG tube another try, this time with a good dose of gravol and a huge reduction in the pace at which he scarfs down his food. Another thing that steroids does is cause food cravings. Nevan's is "Flat Cheese... " Or the processed cheese the cafeteria uses for their egg and cheese sandwiches to be exact. This is NOT a menu item! Nevan must not be the first kid to send their parents 2 floors down for crazy food requests because the ladies behind the counter didn't blink an eye when I ordered "an egg and cheese sandwich with extra cheese, hold the egg and English muffin". Served up with a wink and a smile! Back upstairs I walked with 4 slices of processed cheese on a paper plate.... The first of 4 trips Nevan sent me on in 24 hours! Thank goodness I had the good sense to save some and put it in the nurses fridge because at 3:00am, when the craving hit, all I had to do this time was push the call button!
As I write this, Nevan has tolerated his tube for a record 48hrs! Craig and I bought a stethoscope and the nurses showed us how to check for placement and how to administer meds and feeds. We have also requested that Nevan be put on high calorie night feeds. This is a combination of pediasure and water, pumped in at a very slow pace all night. We hooked him up as he was sleeping to try and avoid his ferocious gag reflex and he ended up tolerating it quite well. We weigh him everyday to see if his weight has fallen any more. So far holding steady....
Nevan was admitted with a fairly high heart rate and the drs and nurses were having some trouble bringing it down. They figured his body was in some sort of pain that they could not pinpoint, so they gave him some morphine to see if it would help. Voila... Down it came! With this last piece of safety in place, Nevan was offered another Day Pass for a few hours. We asked him what he wanted to do and he requested a trip to nana and nanima's house to bake cookies! He was very excited and we were just about to get ready to go, when he spiked another fever; blood cultures, antibiotics and tylenol.... We know the drill now.... and Nana's had to be cancelled. This broke Nevan's heart into a million pieces. Immuno-compromised with a fever is a difficult thing to deal with and he was again in isolation. Nevan became depressed and fell back into a barely responsive state. It took my craziest, silliest efforts to have him crack even the slightest smile after which he got very angry and told me he did not want to be happy! Fair enough.... He has every right to be just as sad, mad, frustrated, scared and nervous as everyone else... More so... and he needs to be allowed to feel this way and process through it. We can't distract the cancer away, so we have stopped trying. We let him be sad for the whole afternoon, allowed to grieve for his own illness, allowed the time he needs to come to terms with these crazy emotions...Many of them chemically induced. When we see even a glimmer of light, Craig and I will pounce on him again.... But until then.. It's his cancer and he can cry if he wants to.
Cute Story of the Day:
Nevan was just waking up from sedation after receiving his Intra-thecal Chemo.
Nevan: "Mommy, there is something strange going on with my Bum.."
Nurse looks at me funny because they didn't do anything to his bum
Me: "oh, he thinks his tailbone is part of his bum"
Nurse: "ahhhh.... Ok"
Nevan: "it must be the bugs crawling around down there"
Nurse: "bugs???"
Daddy: "we told him that he has bugs in his blood"
Nurse: " uh huh... Ok... Well I can't let him go until I am sure he isn't hallucinating. Most kids won't eat, but he needs to show me he can take a drink of water as well"
Me: "Nevan can you take a sip of water for the nurse?"
Nevan: "no, but I can eat some flat cheese!"
Nurse: "ummm ok, Not quite sure what to say here, so I'll just walk u back to your room"
Tuesday, August 7, 2012
sigh "I'm having a really bad day" (dr dad)
I thought I'd start with the funny quote of day for a change. Nevan blurted this out at about 11:00pm on Saturday night. He had started to feel better after the second bolus of IV fluids and was caught up on his meds. Anita and I were exhausted and frustrated from the events of the day. The random comment helped bring us back to reality a little. And that reality is no matter how far he falls away our little boy is still in there. Behind all the puking and pills, medications and mood swings, steroids and syringes and screaming is the Nevan we have known for over four years. It's difficult to remember sometimes. Every day is filled with more unpleasantries than happy moments. No matter how hard we push him he always amazes us and has yet to hold it against us.
It's now Tuesday and Nevan is still in hospital. He has his own room again but this time it's closer to his new friend here. Yet still neither of them are healthy enough to play with each other. It doesn't feel the same here now. It's like we are just visiting I guess, and we are. He definitely is not as comfortable as he was when we were here before. His walls are bare and he doesn't have half of the toys here he had before, still twice as many as most kids have here.
Today is my first day back. I come with a chocolate dinosaur lolly in hand. He makes eye contact with the treat but not me. I asked for a hello and didn't even get that. I don't push too hard. He's been depressed for a few days now. I don't think he realized he would have to stay this long. We went down to the cafeteria and got some lunch. He requested cantaloupe. We say goodbye to mommy so she can have a much needed break after a straight 3 day shift. She will stay again tonight to keep life consistent for his short stay. Most of my visit is a nap for the afternoon. While he's asleep I decide to try out his new stethoscope. We will be required to listen to his stomach at home everytime we use his NG tube to confirm its placement. If its not in the stomach it will be in his lung. It's as scary as it sounds but rarely happens they say. His heart beat is easily double what it should be. I listen to mine. I can barely hear it. I have more body 'fat' than he does. If you know me there isn't much fat! He's so thin you can see his heart pumping and pounding in his chest. You can count his heart rate visually.
We have left over Chinese food together. He eats a few noodles and tons of broccoli heads. He's happy for a while. He even does his meds without a fight. We play some video games for a while. Mommy then shows up with Nylah. My girls.... At this point it's fair to say that what ever problems we have been vocal about in this blog are just the ones on the surface. Every relationship with each other has been and is constantly changing. Nevan and Mommy, Nevan and Daddy, Nevan and Nylah, Nylah and us, our marriage, grandparents, uncles, relatives, friends, co-workers. Soon this will be over and Nevan will come home and stay for the most part. But life will never return to the way it was. Perhaps Nevan will be stronger because of this battle. Maybe we all will too. The world just looks different now. It's important to remember as we take this journey. Cancer kills everything....If you let it.
We have left over Chinese food together. He eats a few noodles and tons of broccoli heads. He's happy for a while. He even does his meds without a fight. We play some video games for a while. Mommy then shows up with Nylah. My girls.... At this point it's fair to say that what ever problems we have been vocal about in this blog are just the ones on the surface. Every relationship with each other has been and is constantly changing. Nevan and Mommy, Nevan and Daddy, Nevan and Nylah, Nylah and us, our marriage, grandparents, uncles, relatives, friends, co-workers. Soon this will be over and Nevan will come home and stay for the most part. But life will never return to the way it was. Perhaps Nevan will be stronger because of this battle. Maybe we all will too. The world just looks different now. It's important to remember as we take this journey. Cancer kills everything....If you let it.
Monday, August 6, 2012
This is Clinic?!
The goal for Friday morning was to get up as early as we could and head to clinic before it got busy. That goal went out the window when no one was able to get out of bed in the morning! So we decided to sleep in a bit and deal with the line ups when we got there.
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!
A New Normal
Well it has been quite a few days since Craig and I have blogged. We blame it on the sheer craziness of the last week. I will try and continue where I left off however.... the tube.
So all of Monday night, Nevan was restless and worried about having this tube inserted. I have to say we were as anxious as he was. But as usual, when you think you can't handle any more, in walks one of the amazing staff to comfort us. Maria is a Child Life worker who's job it is to cheer up the kids and ease their fears about all the things they will be experiencing, however I think most parents in this ward will agree when I say that she does an equally amazing job at calming the parents at the same time. Shortly before Nevan was to receive his Nasal Gastric Tube, Maria came in with a doll, some tubes, a syringe and some colored water. She started by explaining that getting the tube is not because Nevan did anything wrong, or because he didn't take his meds, it was just an option to help him not to have to do the thing he hates doing and keep as many happy moments in his day as possible. She then poked 2 holes for nostrils in this doll and fed a tube through 'into it's stomach'. Nevan then proceeded to use the syringe to feed his doll colored water into its feeding tube for almost 45min. He was having a ball and calmed right down.
Time for the tube. I requested that the team give Nevan an Ativan to calm him further and then Craig and I left the room. We couldn't bare to watch this being done. We walked out of the room with Nevan screaming, but he stopped before we took more than 5 steps. We took a very short walk and came back... The tube was in, Nevan was sitting up watching spiderman and we were all so relieved. He didn't want to talk or eat, but didn't seem bothered by it too much.... Exhale....
Our full intentions were to use the tube for medication purposes only, but the dietitian started him on feeds as well. The feeds, plus eating, plus drinking proved to be too much for little Nevan's stomach and he vomited everything up including the tube only a few short hours after having it inserted!
I asked them to give him a break for the night and re-insert in the morning. They did, and this time we insisted he not be fed through the tube. Nevan tolerated it for a little while longer, but vomited it up once again. It broke our hearts put him through it again so back to negotiating meds. If Nevan could show that he could take his meds, they would send us home. Nevan was excited about this and took his meds In front of all the nurses. They discharged us a few hours later.
Don't get me wrong, Nevan was not the only one excited about this, Craig and I were too. We were anticipating this moment for so long but when it finally came, we didn't feel as happy or relieved as we thought we would. Nevan was in such good hands at the hospital and seemed too fragile to have his care be handed over to us! We would now be his primary care givers and that was petrifying!
We both started preparing by putting together routines, charts, binders, day timers etc. We needed things to get back to Normal.... We just had to figure out what that 'new normal' looked like. Our typical days will now be filled with meds at wake up, breakfast, lunch, dinner and bedtime. Temps need to be monitored every couple of hours and food and fluids logged right down to a single Cheerio. We had to monitor Nevan for rashes, increased bruising and check his PICC line every day. Hands need to be washed constantly and all countertops, door handles, taps, light switches, banisters etc, wiped down with antibacterial cloths daily. "Pee pots", masks, throw up bins and gloves are strategically placed all over the house. Laundry is done constantly to ensure blankies and favorite stuffed toys stay clean. Anything that leaves the house is immediately washed before it is put to use in the house. Just to top up our stress, and almost as some kind of cruel joke, Nylah has developed a very bad cough and cold with fevers on and off. How are we going to keep her away from her 'wa wa' whom she hadnt played with in weeks?
When we walked in the house, there were balloons and streamers everywhere, care of Nana and Nanima. They were the only ones there to celebrate Nevan's home coming as visitors are restricted to 1-2 maximum at a time. Nevan was exhausted and on his last leg at this point but showed some excitement for his animals and his new room. He also insisted that I make him macaroni and cheese for dinner, so that's what I did.
No sooner did we sit down for dinner that I noticed Nevan was developing a rash all over his face. The night went down hill from there. Immediately I called the pediatric Oncologist on call to report his rash. She said to monitor it closely and check for fever and call her back. Thankfully the rash went down over the hour and no fever came on. Nevan was fighting his exhaustion however and his mood just sank. He refused to take his meds again and there was no convincing him. First dose of at home treatment missed. We gave Nevan his first bath in almost 3 weeks and put him to bed. I laid down on an air mattress beside him and our eventful night began. Nylah woke up 3 times coughing and throwing up. Nevan woke up 4 times to use the bathroom and request a midnight snack of sliced cheese. We woke up at our usual 7:00am prepared to take Nevan back to the hospital to make another attempt at the NG tube, except in some sort of sanity restoring miracle, Nevan took his meds no problem! We were so happy and decided not to head to the hospital, but a little while later our problems went from how to get Nevan to take his meds, to how to keep them down! Nevan began vomiting everything he Ingested including his meds. He also developed a tummy ache.
Care for Nylah was arranged and we headed to emerg. We were triaged into isolation right away and Nevan was immediately given fluids to help with his dehydration and gravol for nausea. Instead of putting a tube in again for fear that he would throw it up at home, they gave him an alternative to his prednisone that tasted much better. We were sent home a few hours later and asked to come back first thing in the morning for blood counts and his first clinic day. We drove the 45 minutes home, happy to sleep in our own beds and ready to do it again in the morning.
Cute story of the Day:
Randome statements from Nevan coming out of sedation...
"Mommy, can I have an octopus cake for my birthday tomorrow?" (his birthday is in November).
"Mommy, I miss your grandparents" (Nevan has never met my grandparents)
"Mommy, your so pretty... But don't tell daddy, it's a secret!"
So all of Monday night, Nevan was restless and worried about having this tube inserted. I have to say we were as anxious as he was. But as usual, when you think you can't handle any more, in walks one of the amazing staff to comfort us. Maria is a Child Life worker who's job it is to cheer up the kids and ease their fears about all the things they will be experiencing, however I think most parents in this ward will agree when I say that she does an equally amazing job at calming the parents at the same time. Shortly before Nevan was to receive his Nasal Gastric Tube, Maria came in with a doll, some tubes, a syringe and some colored water. She started by explaining that getting the tube is not because Nevan did anything wrong, or because he didn't take his meds, it was just an option to help him not to have to do the thing he hates doing and keep as many happy moments in his day as possible. She then poked 2 holes for nostrils in this doll and fed a tube through 'into it's stomach'. Nevan then proceeded to use the syringe to feed his doll colored water into its feeding tube for almost 45min. He was having a ball and calmed right down.
Time for the tube. I requested that the team give Nevan an Ativan to calm him further and then Craig and I left the room. We couldn't bare to watch this being done. We walked out of the room with Nevan screaming, but he stopped before we took more than 5 steps. We took a very short walk and came back... The tube was in, Nevan was sitting up watching spiderman and we were all so relieved. He didn't want to talk or eat, but didn't seem bothered by it too much.... Exhale....
Our full intentions were to use the tube for medication purposes only, but the dietitian started him on feeds as well. The feeds, plus eating, plus drinking proved to be too much for little Nevan's stomach and he vomited everything up including the tube only a few short hours after having it inserted!
I asked them to give him a break for the night and re-insert in the morning. They did, and this time we insisted he not be fed through the tube. Nevan tolerated it for a little while longer, but vomited it up once again. It broke our hearts put him through it again so back to negotiating meds. If Nevan could show that he could take his meds, they would send us home. Nevan was excited about this and took his meds In front of all the nurses. They discharged us a few hours later.
Don't get me wrong, Nevan was not the only one excited about this, Craig and I were too. We were anticipating this moment for so long but when it finally came, we didn't feel as happy or relieved as we thought we would. Nevan was in such good hands at the hospital and seemed too fragile to have his care be handed over to us! We would now be his primary care givers and that was petrifying!
We both started preparing by putting together routines, charts, binders, day timers etc. We needed things to get back to Normal.... We just had to figure out what that 'new normal' looked like. Our typical days will now be filled with meds at wake up, breakfast, lunch, dinner and bedtime. Temps need to be monitored every couple of hours and food and fluids logged right down to a single Cheerio. We had to monitor Nevan for rashes, increased bruising and check his PICC line every day. Hands need to be washed constantly and all countertops, door handles, taps, light switches, banisters etc, wiped down with antibacterial cloths daily. "Pee pots", masks, throw up bins and gloves are strategically placed all over the house. Laundry is done constantly to ensure blankies and favorite stuffed toys stay clean. Anything that leaves the house is immediately washed before it is put to use in the house. Just to top up our stress, and almost as some kind of cruel joke, Nylah has developed a very bad cough and cold with fevers on and off. How are we going to keep her away from her 'wa wa' whom she hadnt played with in weeks?
When we walked in the house, there were balloons and streamers everywhere, care of Nana and Nanima. They were the only ones there to celebrate Nevan's home coming as visitors are restricted to 1-2 maximum at a time. Nevan was exhausted and on his last leg at this point but showed some excitement for his animals and his new room. He also insisted that I make him macaroni and cheese for dinner, so that's what I did.
No sooner did we sit down for dinner that I noticed Nevan was developing a rash all over his face. The night went down hill from there. Immediately I called the pediatric Oncologist on call to report his rash. She said to monitor it closely and check for fever and call her back. Thankfully the rash went down over the hour and no fever came on. Nevan was fighting his exhaustion however and his mood just sank. He refused to take his meds again and there was no convincing him. First dose of at home treatment missed. We gave Nevan his first bath in almost 3 weeks and put him to bed. I laid down on an air mattress beside him and our eventful night began. Nylah woke up 3 times coughing and throwing up. Nevan woke up 4 times to use the bathroom and request a midnight snack of sliced cheese. We woke up at our usual 7:00am prepared to take Nevan back to the hospital to make another attempt at the NG tube, except in some sort of sanity restoring miracle, Nevan took his meds no problem! We were so happy and decided not to head to the hospital, but a little while later our problems went from how to get Nevan to take his meds, to how to keep them down! Nevan began vomiting everything he Ingested including his meds. He also developed a tummy ache.
Care for Nylah was arranged and we headed to emerg. We were triaged into isolation right away and Nevan was immediately given fluids to help with his dehydration and gravol for nausea. Instead of putting a tube in again for fear that he would throw it up at home, they gave him an alternative to his prednisone that tasted much better. We were sent home a few hours later and asked to come back first thing in the morning for blood counts and his first clinic day. We drove the 45 minutes home, happy to sleep in our own beds and ready to do it again in the morning.
Cute story of the Day:
Randome statements from Nevan coming out of sedation...
"Mommy, can I have an octopus cake for my birthday tomorrow?" (his birthday is in November).
"Mommy, I miss your grandparents" (Nevan has never met my grandparents)
"Mommy, your so pretty... But don't tell daddy, it's a secret!"
Sunday, August 5, 2012
Iron man (dad)
The next day I visit for a few hours. Mom and I decide she should stay 2 nights while I get some stuff around the house done. My time is short for the visit with having to pick up Nylah from daycare. I try and wake him slowly. He's not happy. He's very upset actually. This has happened a few times now where he doesn't wake up on his own. The drugs make him very irritable. He's non responsive at best. His eyes are pools again and they look larger. He's losing weight now. It takes him 30 minutes to stop glaring at me for daring to wake him. My visit is short but we go for a nice walk and he cheers up.
The next day I come in the afternoon with the plan to stay over night. When it comes time for mom to go home he starts to cry. He doesn't want mommy to go. She finally says her good bye the best she can and leaves. His mood is difficult now and he still needs to take his meds before bed. I play with him for a bit and then it's time for him to take his prednisone. We originally started to give this through IV which is as simple as it gets. Next we move to liquid form administered through a syringe. He hates the taste though. He takes his mouthwashes and other steroids well this way so we have to trust that he truly just hates the taste. We switch to pill form and try and crush and bury it in his favorite apple sauce. I have a long failed battle with him to get him to take his pill. Skip ahead a day and not even mommy can get him to take it. I'll let her tell her story but it turns out the reason he won't take is because it tastes like absolute shit. We are constantly being reminded that Nevan is being very cooperative and when he isnt there is usually a very good reason.
So I try every bribe and negotiation tactic I know but nothing will suffice. He finally cries and tells me he's scared. He won't say why and this drags out for an hour. Mixed in is a ton of "I want mommy's" . So do I. I knew not sleeping here for 2 days would create a dependency for her. If she has to stay every night now it's not a big deal though. We're on the final week. I pick up the phone and call mommy for support. It's a long conversation about how we need to take meds to feel better and leave the hospital. We try and bribe him to take if she comes back for the night. He says he wants mommy to come and won't take meds either. We finally have a lawyer in the family!
Finally I can stop abusing him. It's time to hang out with fun daddy while we wait for mom to arrive. Anita and I have been firm about what Nevan is aloud to watch. Any of the modern day superhero movies are off bounds for our four year old. However after 2 weeks of seeing what he's been through I reassess his fragility. I'll deal with any behavioral issues when they come. We watch Iron Man 2. At the end he says he wasn't scared and he won't have nightmares. He says in a soft sweet voice, "daddy? when I grow up I am going to be like Iron Man. Don't worry though, i'll still be your buddy." I smile and my eyes must have glazed a bit, he pulls me close and says "it's okay daddy". He kisses me and says he loves me.
The next day I come in the afternoon with the plan to stay over night. When it comes time for mom to go home he starts to cry. He doesn't want mommy to go. She finally says her good bye the best she can and leaves. His mood is difficult now and he still needs to take his meds before bed. I play with him for a bit and then it's time for him to take his prednisone. We originally started to give this through IV which is as simple as it gets. Next we move to liquid form administered through a syringe. He hates the taste though. He takes his mouthwashes and other steroids well this way so we have to trust that he truly just hates the taste. We switch to pill form and try and crush and bury it in his favorite apple sauce. I have a long failed battle with him to get him to take his pill. Skip ahead a day and not even mommy can get him to take it. I'll let her tell her story but it turns out the reason he won't take is because it tastes like absolute shit. We are constantly being reminded that Nevan is being very cooperative and when he isnt there is usually a very good reason.
So I try every bribe and negotiation tactic I know but nothing will suffice. He finally cries and tells me he's scared. He won't say why and this drags out for an hour. Mixed in is a ton of "I want mommy's" . So do I. I knew not sleeping here for 2 days would create a dependency for her. If she has to stay every night now it's not a big deal though. We're on the final week. I pick up the phone and call mommy for support. It's a long conversation about how we need to take meds to feel better and leave the hospital. We try and bribe him to take if she comes back for the night. He says he wants mommy to come and won't take meds either. We finally have a lawyer in the family!
Finally I can stop abusing him. It's time to hang out with fun daddy while we wait for mom to arrive. Anita and I have been firm about what Nevan is aloud to watch. Any of the modern day superhero movies are off bounds for our four year old. However after 2 weeks of seeing what he's been through I reassess his fragility. I'll deal with any behavioral issues when they come. We watch Iron Man 2. At the end he says he wasn't scared and he won't have nightmares. He says in a soft sweet voice, "daddy? when I grow up I am going to be like Iron Man. Don't worry though, i'll still be your buddy." I smile and my eyes must have glazed a bit, he pulls me close and says "it's okay daddy". He kisses me and says he loves me.
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