Yesterday's trip to the clinic was actually a short one. It was a very nice break! What was soooo nice about it was we didn't have to be there until 10AM. This was very helpful because with getting the kids off on the bus and having everything ready to go, I still had time to get Benson to take his antibiotics and do a nebulizer treatment before we had to leave.
Kayla did very well with putting her "sleepy cream" on. It was the first time that Bryson didn't have to hold her down. She let me do it all by myself and just held still. This was definite progress. She still doesn't like it because it is cold, but that is one less fight we are dealing with now. :)
We dropped Benson off at a friend's house and headed to the MSTI clinic. Kayla did so well with her port access. She wasn't happy about it, but she didn't even cry. Just a little whimper was all. Nice....fight #2 is getting better.
They absolutely HAD to get her height, though, since she has never let the nurse get it before. Kayla wanted me to hold her, but that doesn't work with height like it does with weight. ;) So, after about 10 minutes of trying to convince her to stand straight against the wall (it's really not THAT difficult) we took her into an exam room, held her down on the bed and they marked her feet and head like they do to measure babies.
Then, Kayla screamed the amazingly ear-piercing scream that she has that literally rattles my ear drum (and everyone else's within a 1/2 mile radius).
And then we were good. :) We waited in the room to talk to Marnie, the NP. I asked her about kiddie pools. With it being so hot, the kids have wanted to go swimming or run through the sprinklers. We can't use the regular sprinklers that water our grass because it's irrigation water. But, we can use a sprinkler on a hose from the house. I did want to get a little pool to put in the yard, but Marnie said that anything with standing warm water was a breeding ground for growing bacteria and probably wasn't a good idea. Bummer.
Kayla did good getting examined and then we went into the chemo suite. She was only getting the vincristine, so we were only there for about a half hour. She didn't need any extra fluids and the vincristine only takes about 10 minutes. So, then we were done and ready to go home!
It was nice to have another short day. Next week, and most weeks will be the all day visits, but every once in a while we will get a break. I haven't looked closely at the schedule since she started, but I have a sheet with all 60 weeks mapped out. I'll have to check that out again.
Friday, April 27, 2012
Great Friends
On Wednesday my wonderful visiting teachers came over with bagfuls of goodies. They had sent an email asking if anyone wanted to help out to make our Thursdays at the clinic a little better. So, in they came with all of this stuff! Snacks, toys, games, coloring, and just about everything else you can think of were now sitting in our kitchen. THANK YOU to all of my wonderful Relief Society sisters. They never fail to fill any kind of need that arises. I am not used to being on the receiving end of things but it has filled me with the love and spirit of my sisters.
Kayla has been very excited about everything. It was seriously like Christmas morning around here!
Thanks, again, everyone!
Tuesday, April 24, 2012
A Day of Doctors
Well, yesterday I was able to go to my first appointment for my pregnancy. I am 16 weeks today. I have a feeling this is going to go by really fast. Especially since my second visit will be the ultrasound. The kids keep asking me if it is a girl or a boy . . . Kayla does at least two or three times a day. For her sake, I hope it is a girl. She has been coming up with all sorts of girl names and talks about when the girl baby comes out and saving clothes for when they will fit the girl baby. :)
Everything is great and looking right on schedule for me. My due date is October 9th. Luckily, my pregnancies are pretty smooth and easy. I don't think I could handle any complications right now anyway. :)
So that is how I spent my morning. Bryson was able to stay home with the kids and leave for work when I got back. It has been very handy to have him self-employed.
The afternoon is another story. . .
First I'll give a little background. Benson woke up with a runny nose (eek) on Saturday. Sunday, right as I got to church with the kids (Bryson and I take turns staying home with Kayla) he started coughing. With a runny nose and a yucky cough, I was going to feel really bad taking him to nursery, so I took him back home to Bryson.
Sunday night, Benson kept waking up . . . almost every hour from when I put him down at 7PM. Once when I went in to check on him at around 2AM or sometime around that and he was throwing up. Great. So, I stayed in his room the rest of the night while he tossed and turned and threw up about 4 or 5 more times. He wasn't feverish, but what worried me was his shallow, wheezy breathing. He finally settled down and seemed to be done throwing up and ready to just sleep some more about 7AM, so I got up and got ready to go to my doctor's appointment and went to it.
When I got back, Benson was just waking up. He was pretty lethargic and his breathing was still shallow and wheezy. So, I called and made him a doctor's appointment for that afternoon.
At the doctor's office, we saw the nurse practitioner because our doctor was already booked for the day. Benson was crying and screaming throughout the entire visit, so the nurse didn't get a good listen to his breathing, but was able to tell there was an ear infection. When she was done trying to examine him, she gave him a sucker and he stopped crying right away. (We should have started with that). Anyway, she got a quick listen to his breathing before he started crying again and decided that he needed chest x-rays. Great.
So, we went down to the lab and took x-rays. We had to wait for a little bit for 2 nurses to help hold him down because I couldn't be back there with him (pregnancy). When that was over, we went back to the room and waited for the results. The nurse came in and said that it wasn't pneumonia (yay) but that it was bronchiolitis (not good). So, she prescribed a nebulizer (I'm pretty sure I spelled that wrong) and antibiotics.
While we were there, our regular pediatrician came in to see us. He saw that we were on the schedule and wanted to check in and see how Kayla was doing. I thought that was really nice of him. He had called us while we were in the hospital at the beginning of all this to say that they were thinking about and praying for us. What a great doctor!
Anyway, we did a nebulizer treatment before we left the office because Benson's breathing was so bad. It really helped him a lot. Despite all of the crying and screaming, when we left, he waved and said bye-bye to the nurses. Then we went down to the basement where Norco was and got the nebulizer and we were finally going home. We had to stop at Walgreen's for his prescriptions first and by the time we got home, he was pretty happy and fairly normal. Now the challenge would be to keep him away from Kayla!
He slept all night last night (yay!) and has been doing great today. I have done some more nebulizer treatments on him that have helped and if I bribe him with a treat, he will take his antibiotics (although when he sees them he immediately pushes them away and says, "Yuck!"). So far Kayla has been good, so lets pray she doesn't get sick!
Everything is great and looking right on schedule for me. My due date is October 9th. Luckily, my pregnancies are pretty smooth and easy. I don't think I could handle any complications right now anyway. :)
So that is how I spent my morning. Bryson was able to stay home with the kids and leave for work when I got back. It has been very handy to have him self-employed.
The afternoon is another story. . .
First I'll give a little background. Benson woke up with a runny nose (eek) on Saturday. Sunday, right as I got to church with the kids (Bryson and I take turns staying home with Kayla) he started coughing. With a runny nose and a yucky cough, I was going to feel really bad taking him to nursery, so I took him back home to Bryson.
Sunday night, Benson kept waking up . . . almost every hour from when I put him down at 7PM. Once when I went in to check on him at around 2AM or sometime around that and he was throwing up. Great. So, I stayed in his room the rest of the night while he tossed and turned and threw up about 4 or 5 more times. He wasn't feverish, but what worried me was his shallow, wheezy breathing. He finally settled down and seemed to be done throwing up and ready to just sleep some more about 7AM, so I got up and got ready to go to my doctor's appointment and went to it.
When I got back, Benson was just waking up. He was pretty lethargic and his breathing was still shallow and wheezy. So, I called and made him a doctor's appointment for that afternoon.
At the doctor's office, we saw the nurse practitioner because our doctor was already booked for the day. Benson was crying and screaming throughout the entire visit, so the nurse didn't get a good listen to his breathing, but was able to tell there was an ear infection. When she was done trying to examine him, she gave him a sucker and he stopped crying right away. (We should have started with that). Anyway, she got a quick listen to his breathing before he started crying again and decided that he needed chest x-rays. Great.
So, we went down to the lab and took x-rays. We had to wait for a little bit for 2 nurses to help hold him down because I couldn't be back there with him (pregnancy). When that was over, we went back to the room and waited for the results. The nurse came in and said that it wasn't pneumonia (yay) but that it was bronchiolitis (not good). So, she prescribed a nebulizer (I'm pretty sure I spelled that wrong) and antibiotics.
While we were there, our regular pediatrician came in to see us. He saw that we were on the schedule and wanted to check in and see how Kayla was doing. I thought that was really nice of him. He had called us while we were in the hospital at the beginning of all this to say that they were thinking about and praying for us. What a great doctor!
Anyway, we did a nebulizer treatment before we left the office because Benson's breathing was so bad. It really helped him a lot. Despite all of the crying and screaming, when we left, he waved and said bye-bye to the nurses. Then we went down to the basement where Norco was and got the nebulizer and we were finally going home. We had to stop at Walgreen's for his prescriptions first and by the time we got home, he was pretty happy and fairly normal. Now the challenge would be to keep him away from Kayla!
He slept all night last night (yay!) and has been doing great today. I have done some more nebulizer treatments on him that have helped and if I bribe him with a treat, he will take his antibiotics (although when he sees them he immediately pushes them away and says, "Yuck!"). So far Kayla has been good, so lets pray she doesn't get sick!
Thursday, April 19, 2012
April 19th (Treatment #5)
Each week that we have gone to the clinic has improved. This morning when we woke Kayla up to put on her "sleepy cream" she knew what needed to be done, but wanted to do it downstairs. It was still a little struggle, but not too bad.
We got Nathan and Lily on the bus and then dropped Benson off at a friend's house. Kayla was tired so she slept in the car on the way to the clinic. She did great getting her blood pressure and weight (with me holding her still). She did really well getting her port accessed, too. Still a little struggle, but definite improvement.
We talked to the nurse practitioner (Marnie) and Kayla did great. She is starting to answer her questions and didn't fight when she examined her. She was pretty happy the whole time.
I asked Marnie questions like is going to the library okay?
- She said it is one of those risks that we can decide if it is worth it or not. We actually went the other day and just got a couple of books and I wiped them off with a Purell wipe (thanks, Cori--I take them everywhere!). I will probably try to avoid going during busy times and not check out too many books if I can help it.
Another question was about gardening. She shouldn't play in the dirt at all, but she can help plant as long as she wears socks and shoes and changes her socks and shoes when she is done. We have to be REALLY careful about mold and fungus. It's one of those things that if she gets contaminated by it, it could turn into a life and death situation.
One thing that the doctor and nurse have been trying to work out is dental work. Kayla has a couple pretty nice cavities that I was waiting to take care of until she felt better. Well, now it complicates things. Marnie told us today that they are hoping to get it scheduled for sometime in the next two weeks. They need to schedule with the dentist (a certain one that has privileges at St. Luke's) and Dr. Lee (the ophthalmologist) so they can all do their thing while she is out. This might be tricky, but I am hoping to get a phone call this week or next week so we can get this done.
A cub scout troop donated these really cute homemade bags full of fun things for the chemo patients. Our friend, Jenn, the child life specialist, came in and gave one to Kayla. It was full of crayons, coloring pages, stickers, a crown (see pictures below), rings, squinkies, pencils and an eraser. It also had a card where each member of the troop signed the card and it had a picture of them inside. This was such a neat thing for her.
Here's a picture of her today:
She is only getting one of the drugs, so our visit is significantly shorter (hooray!) She is also getting the Pentamadine (antibiotic) which has given her a yucky taste in her mouth, so she has been sucking on dum dum suckers and trying to hide the taste.
Our appointment was at 8:30AM again this morning, but we should be leaving before noon (it's 11:23AM right now). 5 down, 55 to go!
Tuesday, April 17, 2012
A Great Big Thank You!
I think I am pretty much up to date! Yay! I will be updating regularly on Kayla's progress and treatments as well as other family stuff. Thanks for all of your support and for taking the time to read this giant book I am writing.
The one thing I haven't mentioned is how much help and service we have received this past month. I have had so many dinners brought in by friends in our ward that I have hardly had to cook. Family members and friends have been mailing gifts for Kayla and the family which we have greatly appreciated. Some of my in-laws are paying for weekly house cleaning to help me out. It has been a huge blessing to have my bathrooms scrubbed down each week! And, it is a good friend of mine and avid cleaner who is doing it.
Bryson and I were talking about what we should do with our chickens. Kayla isn't supposed to be around farm animals and they didn't even want her checking for eggs, so we were trying to figure out if we should have fresh chicken for Easter dinner, or do something else with them for the next year. The very next day a friend in our ward called me and asked if we would want them to take our chickens for the year. They came and picked them up, along with our coop and took them home with them. They call themselves the "chicken tenders." :)
So many friends have watched my kids and many more have offered to help! I know I will have no problem each week finding someone to take Benson for the day on Thursdays, or Nathan and Lily after school. I have even had friends come over to pick up my laundry (unfortunately, I had just finished folding it! ).
Several friends have been making hats for Kayla and we love that. A quick hair update: it has been 4 weeks now since her first treatment and her hair has not even started to thin out! They told me to expect it at 2 weeks, but we have been blessed so far! I will take it for as long as we can keep it.
We have had so much support and even more prayers from those of you who are too far away to help out and even those of you who don't know us! We are so grateful for how blessed we are with wonderful family and friends. I feel truly strengthened by all of your support. I know that the Lord won't give me something that I can't handle, but if it weren't for all of you, I would definitely be having a pretty hard time right now.
THANK YOU!!!
The one thing I haven't mentioned is how much help and service we have received this past month. I have had so many dinners brought in by friends in our ward that I have hardly had to cook. Family members and friends have been mailing gifts for Kayla and the family which we have greatly appreciated. Some of my in-laws are paying for weekly house cleaning to help me out. It has been a huge blessing to have my bathrooms scrubbed down each week! And, it is a good friend of mine and avid cleaner who is doing it.
Bryson and I were talking about what we should do with our chickens. Kayla isn't supposed to be around farm animals and they didn't even want her checking for eggs, so we were trying to figure out if we should have fresh chicken for Easter dinner, or do something else with them for the next year. The very next day a friend in our ward called me and asked if we would want them to take our chickens for the year. They came and picked them up, along with our coop and took them home with them. They call themselves the "chicken tenders." :)
So many friends have watched my kids and many more have offered to help! I know I will have no problem each week finding someone to take Benson for the day on Thursdays, or Nathan and Lily after school. I have even had friends come over to pick up my laundry (unfortunately, I had just finished folding it! ).
Several friends have been making hats for Kayla and we love that. A quick hair update: it has been 4 weeks now since her first treatment and her hair has not even started to thin out! They told me to expect it at 2 weeks, but we have been blessed so far! I will take it for as long as we can keep it.
We have had so much support and even more prayers from those of you who are too far away to help out and even those of you who don't know us! We are so grateful for how blessed we are with wonderful family and friends. I feel truly strengthened by all of your support. I know that the Lord won't give me something that I can't handle, but if it weren't for all of you, I would definitely be having a pretty hard time right now.
THANK YOU!!!
Our Visits to the Clinic
For this next post, I thought I would combine our last three visits to the MSTI clinic where she gets her treatments. They were all pretty similar.
First of all, we have to put the numbing cream on her port two hours before our appointment time. Our appointment is at 8:30AM, so at 6:30AM, I get up, put a large amount of cream in the middle of a square of Glad Press and Seal and put tape around the edges of the wrap. Bryson helps to hold her down and I put the whole thing on as quickly as possible. It is cold to her and she doesn't like being woken up that way--and I don't blame her!
We get Nathan and Lily on the bus at 7:10AM and then quickly get everything ready to go. We drop Benson off at a friend's house and try to be on the road by 7:45AM. We have to go to downtown Boise, right next to St. Luke's, so it takes a good 45 minutes with the morning traffic.
When we get there, we check in and wait to be called back. The nurse takes her blood pressure and weight (by her weight, I mean I hold her and stand on the scale and then Bryson holds her while I get weighed so they can get her weight). On our first visit, she would not let go of me and screamed the whole time I was getting weighed. She did much better the next two times, but I still have to hold her. They have yet to get her height--she will not stand next to the wall, so I just tell them her height from the hospital the one time we were able to get it.
Then we go back into the waiting room until another nurse calls us back. This time they take us back to access her port. This is still a big struggle. Kayla holds on to me soooooo tight that I can hardly turn her around so her chest is facing them. Bryson has to hold her legs down as she tries to kick, I try to keep her arms around my neck so the nurses can lift up her shirt, take off the Press and Seal and tape, wipe off the cream, and stick a needle into her port that is attached to tubes which they then secure with a huge square of tape (by the way, aside from medicine, tape is her next biggest dislike) - the tubes then connect to the IV that is on a pole with wheels so she can get around. Whew. The first couple times were especially ear piercing. . . Kayla has a very high-pitched scream. This last time was a little better. She still cried, but several of the nurses out in the hallway commented on how well she had done because they hadn't heard her screaming.
After that whole ordeal, she gets a gold token to put in a little machine to get a toy.
Next, we got in to meet with either the doctor or nurse practitioner. They (try to) examine her, ask us questions, we ask them questions, etc. This is where Dr. Hanson told us about the other options to Septra. There is a breathing treatment that she could do once a month of Pentamadine (I am probably wrong on the name and the spelling, but it is something like that). This would mean putting a mask on her and having her breath in air that puts a horrible taste in her mouth for 5 minutes. Yeah. . . right. The other option is an IV form of Pentamadine. Ding ding! The only major downside to this is that it is the LEAST effective method to prevent the pneumonia. . . BUT, it is better than nothing and since she is getting nothing, we are going to start with that.
After our meeting there, we go into the chemotherapy suite (nice name, huh?) and get all settled into a little corner with a bed, TV and a couple of chairs. They have a cupboard full of movies, a music lady who comes and shares her cool instruments, a Child Life specialist who brings crafts for Kayla to do and makes sure we have what we need. She gets to order lunch, which is usually Mac n Cheese, grapes, and root beer. And then we just sit and wait and try to keep her entertained.
When we come each week, I feel like I am packing up half the house. :) First, I am trying to bring things that will keep her busy and entertained all day, then I am packing food to last all day for a hungry pregnant lady and her hubby. Plus, Kayla seems to be hungry all day on these days, too. She ends up going through all my food before we are even halfway done. So, by the end of the day, we are pretty much just tired and hungry.
In the meantime, another nurse comes every now and then to change her IV from fluids to each of the two chemo drugs and then back to more fluids. Oh, and they always give her IV Zofran at the beginning and at the end (which means we have to be there for 6 hours in between doses).
On our first visit, they just gave her the initial dose of Zofran and we went home when her fluids were all done. But, she woke up throwing up at 4AM the next morning and was going strong until noon. I almost had to bring her back into the clinic to get hooked up again and get IV Zofran, because, of course, she would rather be throwing up than take a tiny little dissolvable tablet. I did put one in the middle of a Starburst and gave it to her. She chewed it for a few seconds until she realized it tasted bad and ran for the garbage can. I tried to block her and then she just spit it out on the floor. I think she got a little bit of it in her, though, because she stopped throwing up after that.
So, on the following two visits, we made sure to stay long enough to get a second dose of Zofran through her IV. She seems to do fine with two doses.
It is normally around 3:30PM when we are finally leaving the clinic to head home. What a day! This will be what every Thursday is like for the next. . . 56 weeks.
First of all, we have to put the numbing cream on her port two hours before our appointment time. Our appointment is at 8:30AM, so at 6:30AM, I get up, put a large amount of cream in the middle of a square of Glad Press and Seal and put tape around the edges of the wrap. Bryson helps to hold her down and I put the whole thing on as quickly as possible. It is cold to her and she doesn't like being woken up that way--and I don't blame her!
We get Nathan and Lily on the bus at 7:10AM and then quickly get everything ready to go. We drop Benson off at a friend's house and try to be on the road by 7:45AM. We have to go to downtown Boise, right next to St. Luke's, so it takes a good 45 minutes with the morning traffic.
When we get there, we check in and wait to be called back. The nurse takes her blood pressure and weight (by her weight, I mean I hold her and stand on the scale and then Bryson holds her while I get weighed so they can get her weight). On our first visit, she would not let go of me and screamed the whole time I was getting weighed. She did much better the next two times, but I still have to hold her. They have yet to get her height--she will not stand next to the wall, so I just tell them her height from the hospital the one time we were able to get it.
Then we go back into the waiting room until another nurse calls us back. This time they take us back to access her port. This is still a big struggle. Kayla holds on to me soooooo tight that I can hardly turn her around so her chest is facing them. Bryson has to hold her legs down as she tries to kick, I try to keep her arms around my neck so the nurses can lift up her shirt, take off the Press and Seal and tape, wipe off the cream, and stick a needle into her port that is attached to tubes which they then secure with a huge square of tape (by the way, aside from medicine, tape is her next biggest dislike) - the tubes then connect to the IV that is on a pole with wheels so she can get around. Whew. The first couple times were especially ear piercing. . . Kayla has a very high-pitched scream. This last time was a little better. She still cried, but several of the nurses out in the hallway commented on how well she had done because they hadn't heard her screaming.
After that whole ordeal, she gets a gold token to put in a little machine to get a toy.
Next, we got in to meet with either the doctor or nurse practitioner. They (try to) examine her, ask us questions, we ask them questions, etc. This is where Dr. Hanson told us about the other options to Septra. There is a breathing treatment that she could do once a month of Pentamadine (I am probably wrong on the name and the spelling, but it is something like that). This would mean putting a mask on her and having her breath in air that puts a horrible taste in her mouth for 5 minutes. Yeah. . . right. The other option is an IV form of Pentamadine. Ding ding! The only major downside to this is that it is the LEAST effective method to prevent the pneumonia. . . BUT, it is better than nothing and since she is getting nothing, we are going to start with that.
After our meeting there, we go into the chemotherapy suite (nice name, huh?) and get all settled into a little corner with a bed, TV and a couple of chairs. They have a cupboard full of movies, a music lady who comes and shares her cool instruments, a Child Life specialist who brings crafts for Kayla to do and makes sure we have what we need. She gets to order lunch, which is usually Mac n Cheese, grapes, and root beer. And then we just sit and wait and try to keep her entertained.
When we come each week, I feel like I am packing up half the house. :) First, I am trying to bring things that will keep her busy and entertained all day, then I am packing food to last all day for a hungry pregnant lady and her hubby. Plus, Kayla seems to be hungry all day on these days, too. She ends up going through all my food before we are even halfway done. So, by the end of the day, we are pretty much just tired and hungry.
In the meantime, another nurse comes every now and then to change her IV from fluids to each of the two chemo drugs and then back to more fluids. Oh, and they always give her IV Zofran at the beginning and at the end (which means we have to be there for 6 hours in between doses).
On our first visit, they just gave her the initial dose of Zofran and we went home when her fluids were all done. But, she woke up throwing up at 4AM the next morning and was going strong until noon. I almost had to bring her back into the clinic to get hooked up again and get IV Zofran, because, of course, she would rather be throwing up than take a tiny little dissolvable tablet. I did put one in the middle of a Starburst and gave it to her. She chewed it for a few seconds until she realized it tasted bad and ran for the garbage can. I tried to block her and then she just spit it out on the floor. I think she got a little bit of it in her, though, because she stopped throwing up after that.
So, on the following two visits, we made sure to stay long enough to get a second dose of Zofran through her IV. She seems to do fine with two doses.
It is normally around 3:30PM when we are finally leaving the clinic to head home. What a day! This will be what every Thursday is like for the next. . . 56 weeks.
Our Struggles with Medicine. . .
Many of you, especially if you are on Facebook, have known that Kayla will not take oral medication. Sigh. She has four prescriptions:
Our first Saturday trying to give her the liquid antibiotic was very exhausting to say the least. I started out trying to be sneaky. First, I put it in raspberry kefir. Kefir is a drinkable yogurt that has a very tart taste. I was sure that this would work. She took one sip and pushed it away saying it was gross and that she wanted strawberry kefir. So, I put a second dose in the strawberry kefir. I got the same reaction. Next I tried root beer. Nope. Root beer with ice. Nope. Bryson made popcicles out of it. Nope. I tried coaxing and bribing. Nope. Later on that day, we tried the force method. That resulted in her throwing up immediately afterwards. I was kind of at a loss.
I called the doctor and was told to take a break for a day and then try again. Okay. So, I did. The next day I tried cranberry juice. Nope. I put it in chocolate milk. Nope. Hot chocolate. Nope. Chocolate ice cream with chocolate syrup. Nope. I tried telling her that if she wouldn't take them, we would have to go back to the hospital and maybe even get a shot. We even got in the car. She would give in, but before actually taking it, she would change her mind and we'd be back at square one.
So, I had a big present I had found on clearance and was saving for the girls for Christmas. I got it out, set it up, showed her how cool it was and told her that if she would take her medicine, she could play with it and have it. She was very excited about it, but still said, "I'll wait until Christmas to play with it."
I called the nurse and got a new prescription for the pill form of septra. I crushed it up and put it in applesauce with a lot of cinnamon and sugar. She took a few bites, but still said it tasted gross (by the way, I never told her when I was putting it in something). I couldn't get her to eat any more. She was seriously screaming crying for over an hour while I was trying to convince her that she had to eat it.
The next day, I crushed up another pill and cooked it in an omelet. I put it in half of the omelet. She took one bite and ran to the garbage to spit it out because it tasted gross. She ate the other half of the omelet just fine. I now was at a complete loss of how to get this stubborn girl to take her meds--which were now more than half gone. . .
Well, I will continue this on in another post to update you on what is happening. On a happy note, she can't even tell when I put Miralax in her water and has had no problem with that! :)
- Septra: an antibiotic to prevent pneumonia (PCP, a specific kind that she will be vulnerable to with a low immune system) that she needs to take twice a day on the weekends.
- Zofran: anti-nausea medication for after her treatments--the carboplatin causes nausea.
- Miralax: laxative--the vincristine causes constipation
- Ummm. . . something like Lordicaine (if I had energy, I would run downstairs and check to see what is called) --it is a numbing cream that we put on her skin over her port so that when they stick the needle in, she won't feel it.
Our first Saturday trying to give her the liquid antibiotic was very exhausting to say the least. I started out trying to be sneaky. First, I put it in raspberry kefir. Kefir is a drinkable yogurt that has a very tart taste. I was sure that this would work. She took one sip and pushed it away saying it was gross and that she wanted strawberry kefir. So, I put a second dose in the strawberry kefir. I got the same reaction. Next I tried root beer. Nope. Root beer with ice. Nope. Bryson made popcicles out of it. Nope. I tried coaxing and bribing. Nope. Later on that day, we tried the force method. That resulted in her throwing up immediately afterwards. I was kind of at a loss.
I called the doctor and was told to take a break for a day and then try again. Okay. So, I did. The next day I tried cranberry juice. Nope. I put it in chocolate milk. Nope. Hot chocolate. Nope. Chocolate ice cream with chocolate syrup. Nope. I tried telling her that if she wouldn't take them, we would have to go back to the hospital and maybe even get a shot. We even got in the car. She would give in, but before actually taking it, she would change her mind and we'd be back at square one.
So, I had a big present I had found on clearance and was saving for the girls for Christmas. I got it out, set it up, showed her how cool it was and told her that if she would take her medicine, she could play with it and have it. She was very excited about it, but still said, "I'll wait until Christmas to play with it."
I called the nurse and got a new prescription for the pill form of septra. I crushed it up and put it in applesauce with a lot of cinnamon and sugar. She took a few bites, but still said it tasted gross (by the way, I never told her when I was putting it in something). I couldn't get her to eat any more. She was seriously screaming crying for over an hour while I was trying to convince her that she had to eat it.
The next day, I crushed up another pill and cooked it in an omelet. I put it in half of the omelet. She took one bite and ran to the garbage to spit it out because it tasted gross. She ate the other half of the omelet just fine. I now was at a complete loss of how to get this stubborn girl to take her meds--which were now more than half gone. . .
Well, I will continue this on in another post to update you on what is happening. On a happy note, she can't even tell when I put Miralax in her water and has had no problem with that! :)
Monday, April 16, 2012
Our Spring Break Miracle
With Lily and Benson at grandma's house, it was fairly quiet around here. Nathan was home from school for spring break and I am SO grateful to the wonderful friends that I have who let Nathan come and play with them and kept him from being totally bored all week hanging out at home with me and Kayla. This gave Kayla and I A LOT of time together. :)
She has always been very much a mama's girl. . . and now that has really increased. I couldn't get up and walk more than a few feet away without her trailing behind me asking me where we were going. It was nice to have some one on one time with her and she sure kept me busy! I am past the really tired pregnant stage, but I am still the regular pregnant tired. . . but Kayla was full of energy. We baked cookies, took walks around the block, played games, read books, cleaned house, etc.
One night while I was reading stories to Kayla, I asked her if she could pick out any letters on the page that she knew. She had to look hard, but she was able to point out several letters that were fairly small that she knew! This made me so happy! In the hospital, the doctor had mentioned that we may need to start learning braille for her, just to be prepared.
Over the next few days, I really started noticing improvement in Kayla's vision. She was comfortable to ride her bike around the block, she was running around, jumping on the trampoline, and having no problem seeing her food. Every once in a while I would notice that when she would reach to grab something small, she would miss, but there was still huge improvement in her eyesight. Did I mention how happy this made me! She could function pretty much normally. She was sitting far across them room from the TV one morning and started laughing. I asked her what was so funny and she described to me exactly what had happened on the cartoon she was watching. Yay!
This has been a HUGE blessing for us. It is one thing to deal with the whole tumor/chemo thing, but another thing to deal with it with a child who suddenly has impaired vision on top of that. I am so grateful that her eyesight has improved and she can go back to being a normal little girl who loves to color princess pictures and play with Polly Pockets.
She has always been very much a mama's girl. . . and now that has really increased. I couldn't get up and walk more than a few feet away without her trailing behind me asking me where we were going. It was nice to have some one on one time with her and she sure kept me busy! I am past the really tired pregnant stage, but I am still the regular pregnant tired. . . but Kayla was full of energy. We baked cookies, took walks around the block, played games, read books, cleaned house, etc.
One night while I was reading stories to Kayla, I asked her if she could pick out any letters on the page that she knew. She had to look hard, but she was able to point out several letters that were fairly small that she knew! This made me so happy! In the hospital, the doctor had mentioned that we may need to start learning braille for her, just to be prepared.
Over the next few days, I really started noticing improvement in Kayla's vision. She was comfortable to ride her bike around the block, she was running around, jumping on the trampoline, and having no problem seeing her food. Every once in a while I would notice that when she would reach to grab something small, she would miss, but there was still huge improvement in her eyesight. Did I mention how happy this made me! She could function pretty much normally. She was sitting far across them room from the TV one morning and started laughing. I asked her what was so funny and she described to me exactly what had happened on the cartoon she was watching. Yay!
This has been a HUGE blessing for us. It is one thing to deal with the whole tumor/chemo thing, but another thing to deal with it with a child who suddenly has impaired vision on top of that. I am so grateful that her eyesight has improved and she can go back to being a normal little girl who loves to color princess pictures and play with Polly Pockets.
Family Pictures
My mom and Kara offered to take Lily and Benson home with them for a week or so. Spring break was just about to start for us. Plus, Benson had a low fever and he and Lily had bad sounding coughs. Not exactly what I wanted Kayla to be exposed to right off the bat!
Since my mom was going to have the kids for awhile, I really wanted to get family pictures taken. We were way overdue for one and I especially wanted to get one before Kayla started losing her hair. The nurse told me that it usually starts two weeks after the first treatment. So, I called up a good friend in our ward who is a photographer ( http://trijen.com/) and asked him if he could take our pictures the next day. He was good to squeeze us in and took some amazing pictures.
10 1/2 years and counting. . .
Nathan 8 years old
Lily 6 1/2 years old
Kayla 4 1/2 years old
Benson 22 1/2 months
My personal favorite. . .
Home, Sweet, Home
Well, we did make it home! My good friend, Christy, brought Kayla over two cute balloons that she would not let go of. (Side note-- those balloons lasted for almost 3 weeks!) She even slept with them floating over her head. :)
We were very excited to be home. Kayla was especially excited and started going around everywhere. I could tell that her vision was still pretty limited, but that didn't stop her from walking around like she owned the place.
Lily, Kayla and I took a walk around the block and played at the park for a little while. At one point I remember Kayla looking up at the sun (it was pretty overcast, but you could tell where the sun was) and asking if that was a balloon up there.
She takes extra care when climbing up and downstairs, especially, but she wasn't afraid to go down the slide or climb up the curved ladder thing!
She even helped grandma wash our van.
It felt so good to be home (and to have grandma and aunt Kara there to help) and start to figure out what our new normal was going to be.
Sunday, April 15, 2012
Going Home!
This is now Thursday morning. We first came to the hospital on Monday afternoon. I was very ready to go home! Kayla was doing really well, her vision was still very limited, but she was gaining confidence. When she needed to use the restroom, she refused to hold my hand and she wanted to do it all by herself and didn't need any help with finding the sink, turning on the water or washing her hands. This was very encouraging to me. I wanted to help her, but I also wanted her to be as independent as possible. She is a very independent little girl and I knew that would be a blessing to her.
Before we could leave, we met with a dietitian who talked to us about an immuno-suppressed diet. It really isn't that much different than normal. Basically, hot foods need to be hot, cold foods need to be cold, dairy products need to be pasteurized, no sharp or bleu cheese, no raw nuts or nuts in shells, no raw honey, nothing out of the bulk bins at WinCo (the bottom ones where people can stick there hands in), fresh produce needs to fresh, only up to a couple of days old. Generally, just being extra careful with food to avoid mold or bacteria.
We also met with someone from the MSTI (Mountain States Tumor Institute) clinic where Kayla will be doing her treatments. She told us about what her visits would be like there and answered any questions we had. . . I really don't remember a lot about what she said.
After waiting for hours to go home, the nurse finally says we can go. . . and then Kayla decides that she REALLY wants to take a bath. She asked all week if they had a bathtub at the hospital and hadn't had a chance to take one yet. So, we went and she took a quick bath before we went home.
Now it was time to really see how this was all going to affect our everyday life.
Real quick, I didn't mention the visitors we had in the hospital and I was really grateful for them. First of all, our Bishop came and visited us on Tuesday night right as we were getting the news about the whole chemotherapy thing. We had a good visit with him and he helped Bryson give me a priesthood blessing and then he gave Bryson one. The things I remember about what he said was that we would see miracles throughout this year and to write down our experiences. Thus, I am trying to keep a fairly detailed record of what has been happening so I can really remember all that we are and will go through this upcoming year. I know it will be an incredible learning and growing experience for our family.
I had two good friends come and visit on Wednesday night. They were so thoughtful and came even though I told them that we were doing okay. It really lifted my spirits to have them come. One came back the next morning and brought me a bag full of food! That was so nice. Many of the women in our church ward wanted to do something, so they put together lunch for me. It would have lasted another week. I am so grateful to all of those sisters and I don't even know who contributed.
One thing that I have not shared yet is that I am expecting our 5th child right now. At this time I was just over 11 weeks along, so that is another reason why the bag of food was such a blessing!
I am grateful that my Heavenly Father trusts me and my family enough to really try our faith and test us with such a major trial. I know that there were and are so many people praying for our family right now and it has really strengthened me and my family. I am grateful for all of your prayers! Thank you!
Before we could leave, we met with a dietitian who talked to us about an immuno-suppressed diet. It really isn't that much different than normal. Basically, hot foods need to be hot, cold foods need to be cold, dairy products need to be pasteurized, no sharp or bleu cheese, no raw nuts or nuts in shells, no raw honey, nothing out of the bulk bins at WinCo (the bottom ones where people can stick there hands in), fresh produce needs to fresh, only up to a couple of days old. Generally, just being extra careful with food to avoid mold or bacteria.
We also met with someone from the MSTI (Mountain States Tumor Institute) clinic where Kayla will be doing her treatments. She told us about what her visits would be like there and answered any questions we had. . . I really don't remember a lot about what she said.
After waiting for hours to go home, the nurse finally says we can go. . . and then Kayla decides that she REALLY wants to take a bath. She asked all week if they had a bathtub at the hospital and hadn't had a chance to take one yet. So, we went and she took a quick bath before we went home.
Now it was time to really see how this was all going to affect our everyday life.
Real quick, I didn't mention the visitors we had in the hospital and I was really grateful for them. First of all, our Bishop came and visited us on Tuesday night right as we were getting the news about the whole chemotherapy thing. We had a good visit with him and he helped Bryson give me a priesthood blessing and then he gave Bryson one. The things I remember about what he said was that we would see miracles throughout this year and to write down our experiences. Thus, I am trying to keep a fairly detailed record of what has been happening so I can really remember all that we are and will go through this upcoming year. I know it will be an incredible learning and growing experience for our family.
I had two good friends come and visit on Wednesday night. They were so thoughtful and came even though I told them that we were doing okay. It really lifted my spirits to have them come. One came back the next morning and brought me a bag full of food! That was so nice. Many of the women in our church ward wanted to do something, so they put together lunch for me. It would have lasted another week. I am so grateful to all of those sisters and I don't even know who contributed.
One thing that I have not shared yet is that I am expecting our 5th child right now. At this time I was just over 11 weeks along, so that is another reason why the bag of food was such a blessing!
I am grateful that my Heavenly Father trusts me and my family enough to really try our faith and test us with such a major trial. I know that there were and are so many people praying for our family right now and it has really strengthened me and my family. I am grateful for all of your prayers! Thank you!
Treatment Begins
I know this is getting very long, but this first week was a very long week. As soon as I get up to day, my posts won't be so long and picture-less. :)
The next morning, right after I finally fell asleep, of course, the nurse came in and told me that it was time to go down for Kayla's surgery. So, I let her know that we were going downstairs and that I was going, also. She refused to ride on the bed (they just rolled it right downstairs), I got to carry her the whole way.
When we got down to the surgery area, there was a little bit of waiting and watching Tangled, and talking to doctors, anesthetists, nurses and others. I got all suited up in booties, a paper body suit thing, a shower cap thing, and a mask and carried Kayla into the operating room. It was nice that I was able to go into the room with her, but it was so hard because I was the one who held her tight in my lap with they put the gas mask on her to put her out. She of course started screaming and kicking until she fell asleep. The doctors and nurses lifted her out of my arms and put her on the operating table. Then I had to leave and go wait in the surgery waiting room until they were done. I have to admit some tears fell during this time, too.
The surgery took about an hour. The doctor came in and told me that they were done and that they would come and get me when she started to wake up. I told her that I REALLY need to be seconds away from her so that when she woke up I could be there instantly. Well, when they came in to get me, she had already woken up and was freaking out again, so I was running down the hall to where she was. It took several minutes to calm her down and I just sat and held her until she relaxed and fell asleep again.
When it was time for us to go back upstairs, I carried her (because of course, she wouldn't ride in the bed) up to her room where Bryson, my mom, my sister, Kara, and Benson were there waiting for us. Kayla was a little tired still, but enjoyed seeing grandma and aunt Kara. They stayed for a while before going back home.
Meanwhile, we had a pretty slow afternoon of watching more movies and relaxing. The nurse came in to start her on some IV fluids later that afternoon. After an hour or two of fluids they gave her her first treatment of chemotherapy. It was really pretty easy. Since she had her port in from the surgery, they had the needle in it and tubes attached already, so all the nurse had to do was change some hoses and start some new bags of fluid. Kayla was eating dinner and we were watching more Tangled and other movies. She was very happy and energetic and it was so nice to see her that way!
Kayla is getting two drugs: vincristine and carboplatin. Vincristine takes about 5 minutes and carboplatin takes about an hour. Once they were done, they gave her more IV fluids. One of the drugs (I can't remember which right now) is hard on kidneys so they want to be sure she is very hydrating when they give them to her. Carboplatin causes nausea, so they gave her a dose of zofran before the treatment and then once it had been 6 hours, they gave her another dose.
They told me that she would probably have a suppressed appetite. But, Kayla was so hungry all night! She asked the nurse three times to bring her some toast and she was eating until 10:30 that night. We took walks and wagon rides all around the hallways for a long time. I was totally wiped out and ready for bed, but she was not. When she finally slowed down, about 11PM, she was out immediately. I think I got a little more sleep that night.
And that's Day 3.
The next morning, right after I finally fell asleep, of course, the nurse came in and told me that it was time to go down for Kayla's surgery. So, I let her know that we were going downstairs and that I was going, also. She refused to ride on the bed (they just rolled it right downstairs), I got to carry her the whole way.
When we got down to the surgery area, there was a little bit of waiting and watching Tangled, and talking to doctors, anesthetists, nurses and others. I got all suited up in booties, a paper body suit thing, a shower cap thing, and a mask and carried Kayla into the operating room. It was nice that I was able to go into the room with her, but it was so hard because I was the one who held her tight in my lap with they put the gas mask on her to put her out. She of course started screaming and kicking until she fell asleep. The doctors and nurses lifted her out of my arms and put her on the operating table. Then I had to leave and go wait in the surgery waiting room until they were done. I have to admit some tears fell during this time, too.
The surgery took about an hour. The doctor came in and told me that they were done and that they would come and get me when she started to wake up. I told her that I REALLY need to be seconds away from her so that when she woke up I could be there instantly. Well, when they came in to get me, she had already woken up and was freaking out again, so I was running down the hall to where she was. It took several minutes to calm her down and I just sat and held her until she relaxed and fell asleep again.
When it was time for us to go back upstairs, I carried her (because of course, she wouldn't ride in the bed) up to her room where Bryson, my mom, my sister, Kara, and Benson were there waiting for us. Kayla was a little tired still, but enjoyed seeing grandma and aunt Kara. They stayed for a while before going back home.
Meanwhile, we had a pretty slow afternoon of watching more movies and relaxing. The nurse came in to start her on some IV fluids later that afternoon. After an hour or two of fluids they gave her her first treatment of chemotherapy. It was really pretty easy. Since she had her port in from the surgery, they had the needle in it and tubes attached already, so all the nurse had to do was change some hoses and start some new bags of fluid. Kayla was eating dinner and we were watching more Tangled and other movies. She was very happy and energetic and it was so nice to see her that way!
Kayla is getting two drugs: vincristine and carboplatin. Vincristine takes about 5 minutes and carboplatin takes about an hour. Once they were done, they gave her more IV fluids. One of the drugs (I can't remember which right now) is hard on kidneys so they want to be sure she is very hydrating when they give them to her. Carboplatin causes nausea, so they gave her a dose of zofran before the treatment and then once it had been 6 hours, they gave her another dose.
They told me that she would probably have a suppressed appetite. But, Kayla was so hungry all night! She asked the nurse three times to bring her some toast and she was eating until 10:30 that night. We took walks and wagon rides all around the hallways for a long time. I was totally wiped out and ready for bed, but she was not. When she finally slowed down, about 11PM, she was out immediately. I think I got a little more sleep that night.
And that's Day 3.
Thursday, April 12, 2012
Day 2 - The Diagnosis
Now that you've experienced the first day with me, I'm moving on to the second day. We hung out in our room and watched Tangled. Kayla's sight was still not very good, but I think she could kind of see the TV, although I'm not sure how well. Doctors came in and out asking more questions and doing more examining. Her main doctor (Dr. Price - awesome lady) told me that they were taking all of the information they had gathered together and were working as a group to figure out what was going on.
Sometime during the day, Dr. Price came in and told me that they were thinking that she likely had a condition called neurofibromatosis (NF). They were going to send off blood work and it would take 5-6 six weeks to get the results. The only thing is, if it comes back positive, she has it, but if it comes back negative, she might still have it, she is just so young that other symptoms might present themselves as she gets older. We are still waiting on the results. . .
We had a genetics counselor come in and talk to us and map our our family tree, because NF is usually a genetic disease. There is absolutely nothing in both Bryson's and my family. So, the other way to get it is to just having a certain gene randomly mutate. If she has this, that is most likely the case.
We met with a neurologist, too, but honestly, I can't remember what all he told me.
Then, out of the blue (it seemed to me, at least) we had an oncologist come in and talk to us. He told us that she did have tumors on her optic nerves. He was very interested to see what the ophthalmologist was going to say (we were going to see her that afternoon), but he starting talking about the possibilities of doing chemotherapy and that really caught me off guard. I was definitely getting the idea that this was not going to be a quick fix and we'd all go home like normal.
Kayla and I went to see Dr. Lee, a wonderful ophthalmologist. She looked at the MRI scans and did her best to examine a 4 year old girl who does not like to answer any questions from anyone. . . By the time we were done, she was talking about chemotherapy, too. My head was spinning by now.
So, we went back to the hospital. By the way, Bryson had been at the hospital as much as he could, he had to leave for different court appearances and stuff. Dr. Hansen, the oncologist, came back in and started to talk to me, but asked if Bryson would be back so he could talk to us both. I called Bryson and he came right over. Dr. Hansen came in and told us that because she did have tumors (They are all along her optic nerves, tangled with nerves in her optic chiasm, and all of the way back to her hypothalamus. It is more a mesh of cells than a ball.), and because her sight seemed to be deteriorating so quickly we needed to start chemotherapy possibly that night (he's telling this to us at about 5:30PM), or in the morning. He said that he couldn't guarantee that her eyesight would improve, but they just wanted to preserve what she had left.
Dr. Hansen spent a lot of time talking to us and going over the schedule of chemo that Kayla would be doing. She would have treatments every week for 60 weeks. He also went over a ton of side effects. Lovely. Hair loss and fertility stuck out to me the most. I was totally going through the hospital's supply of Kleenex.
After Dr. Hansen was done, Dr. C. . . I can't remember her name. . . came in and talked to us about surgically inserting a port into Kayla's chest so that she can be accessed more conveniently for her chemo treatments, IV, blood draws, etc. She explained to us all about how she was going to do it and where she was going to put it and why and that the surgery was going to be at 8:30 in the morning.
After all of this, the nurse came in and told us that we were moving rooms. So, we packed up and moved into the Pediatric Oncology side of the floor. That was another take my breath away moment. This was really happening.
Kayla refused to sleep in the bed, so she slept in the little couch-thing on the side of them room. She also insisted that I sleep there with her. Let's just say it was another sleepless night. At about 4AM I had my first breakdown. It was when I really let the tears flow. And then I felt better.
Sometime during the day, Dr. Price came in and told me that they were thinking that she likely had a condition called neurofibromatosis (NF). They were going to send off blood work and it would take 5-6 six weeks to get the results. The only thing is, if it comes back positive, she has it, but if it comes back negative, she might still have it, she is just so young that other symptoms might present themselves as she gets older. We are still waiting on the results. . .
We had a genetics counselor come in and talk to us and map our our family tree, because NF is usually a genetic disease. There is absolutely nothing in both Bryson's and my family. So, the other way to get it is to just having a certain gene randomly mutate. If she has this, that is most likely the case.
We met with a neurologist, too, but honestly, I can't remember what all he told me.
Then, out of the blue (it seemed to me, at least) we had an oncologist come in and talk to us. He told us that she did have tumors on her optic nerves. He was very interested to see what the ophthalmologist was going to say (we were going to see her that afternoon), but he starting talking about the possibilities of doing chemotherapy and that really caught me off guard. I was definitely getting the idea that this was not going to be a quick fix and we'd all go home like normal.
Kayla and I went to see Dr. Lee, a wonderful ophthalmologist. She looked at the MRI scans and did her best to examine a 4 year old girl who does not like to answer any questions from anyone. . . By the time we were done, she was talking about chemotherapy, too. My head was spinning by now.
So, we went back to the hospital. By the way, Bryson had been at the hospital as much as he could, he had to leave for different court appearances and stuff. Dr. Hansen, the oncologist, came back in and started to talk to me, but asked if Bryson would be back so he could talk to us both. I called Bryson and he came right over. Dr. Hansen came in and told us that because she did have tumors (They are all along her optic nerves, tangled with nerves in her optic chiasm, and all of the way back to her hypothalamus. It is more a mesh of cells than a ball.), and because her sight seemed to be deteriorating so quickly we needed to start chemotherapy possibly that night (he's telling this to us at about 5:30PM), or in the morning. He said that he couldn't guarantee that her eyesight would improve, but they just wanted to preserve what she had left.
Dr. Hansen spent a lot of time talking to us and going over the schedule of chemo that Kayla would be doing. She would have treatments every week for 60 weeks. He also went over a ton of side effects. Lovely. Hair loss and fertility stuck out to me the most. I was totally going through the hospital's supply of Kleenex.
After Dr. Hansen was done, Dr. C. . . I can't remember her name. . . came in and talked to us about surgically inserting a port into Kayla's chest so that she can be accessed more conveniently for her chemo treatments, IV, blood draws, etc. She explained to us all about how she was going to do it and where she was going to put it and why and that the surgery was going to be at 8:30 in the morning.
After all of this, the nurse came in and told us that we were moving rooms. So, we packed up and moved into the Pediatric Oncology side of the floor. That was another take my breath away moment. This was really happening.
Kayla refused to sleep in the bed, so she slept in the little couch-thing on the side of them room. She also insisted that I sleep there with her. Let's just say it was another sleepless night. At about 4AM I had my first breakdown. It was when I really let the tears flow. And then I felt better.
Let's Start At the Very Beginning. . .
It's difficult to know where to begin, but about 3 weeks ago, my husband and I were in the hospital with our 4 year old, Kayla. We were told that she had an optic glioma (tumor on her optic nerves) and needed to start chemotherapy immediately. That came as a huge shock to us and has started our lives down an entirely different path than we ever thought we'd be going down. Here's a little more background:
During the month of February, Kayla spent almost 3 weeks suffering from horrible and constant headaches. We were in and out the doctor about 5 times. She had an ear infection, then pneumonia, but after those cleared up, she still had these headaches. We did a CT scan of her head and it came back normal. So, I was relieved that nothing serious was going on up there. After that, her headaches seems to go away and she was getting back to normal.
A couple of weeks later on a Saturday, our 4 kiddos were at a friend's house and they pointed out to us that Kayla's pupils were very dilated and maybe that was related to her headaches. Kayla had been having a couple headaches that past week. They weren't as bad at all, but I thought that it was a great observation and decided to take her to an optometrist on that next Monday.
Sunday, I noticed a couple of things about Kayla that were a little off. She came to choir practice with me and after she took her shoes off she came into the room and called out to me. It took her a few seconds to realize where I was. She also tripped down the stairs when we were leaving. I didn't think too much of it at the time. On Monday morning, she had a hard time getting dressed. She kept putting her legs and arms into the wrong holes of her clothes. I made the appointment with the eye doctor and then took the kids to the store to get strawberries for Kayla so she would be willing to go to her appointment (she doesn't like going to the doctor!). At the store, she was walking really slow and hesitantly and she had a hard time getting in and out of the car. I was starting to get a little worried at this point.
We got home and ate lunch before we headed to the appointment. I told Kayla to finish her lunch so we could go and she answered, "I can't see it." It was sitting on her plate right in front of her. At this point I was very worried! Her vision seemed to be deteriorating at a very fast pace. I dropped my other kids off at a friends and we hurried over to the doctor.
At the optometrist, they did their best to examine my 4 year old who refuses to be examined. :) They were able to take pictures of her eyes though and the eye doctor showed me that her optic nerves were very inflamed. When I asked her what could be causing this, she told me that it was either extra fluids in her brain, maybe an infection, or possibly a tumor. I didn't like any of those options. . .
We were sent right over to the ER at the hospital across the street. The optometrist told me that they would most likely do an MRI, possibly another CT scan and a spinal tap. I called Bryson and told him to get over here NOW. He met us in the ER and after some confusion, we were put in a room and seen by a nurse and doctor. After examining Kayla (remember, she doesn't like to be examined. . . ), they decided that she did need an MRI, but would need to be sedated and they couldn't do pediatric sedation at that hospital, so they set us to St. Luke's in downtown Boise. They have a great children's hospital. Before we left the room at the ER, Kayla asked, "Who turned off the light?" Oh, boy. . .
They did not send us by ambulance, but they did tell us that we needed to get over there immediately. We made a super quick stop at home to pack a quick bag and get a few necessities since they told us we would most likely be spending the night. Our great friend and home teacher met us at our house to help give Kayla a priesthood blessing before we headed over to the hospital.
We drove over to St. Luke's and were met by a room full of doctors and nurses. As you can imagine, Kayla was a bit tired of being examined and they all wanted to examine her. She was tired and upset by this point and wanted a drink of water. Unfortunately, because they would be sedating her for the MRI, she wasn't supposed to have any food or water for 6 hours. Alrighty. . .she was even more upset and begging for water for the next three hours. It was so hard to see her so uncomfortable. After more doctors and more questions and more examining and more crying and frustration from Kayla, we were left alone to wait until the MRI.
Just to give you a timeline, we arrived at St. Luke's around 5 or 5:30PM. They came in to get her for the MRI around 8:30PM. We went down with her and were able to be with her up until they took her into the MRI room. I handed her off to 4 people who carried her kicking and screaming onto the bed. We watched as they put the mask on her and she soon went limp from the anesthesia. That was hard. . .
Bryson and I just had to wait for a few hours until they were done, so we got some dinner and went back to the hospital. Bryson then went home for the night to be there with our other kids while I stayed at the hospital. I tried to get some rest while I waited. It was about midnight when they came in and told me that she was done. They had done an MRI on her head and a spinal tap, and then went back and did an MRI of her spine. The nurse told me that they would come and get me when she started to wake up.
I told them that I needed to be right there when she woke up. . . but she woke up before they came and got me, so I was running down the hall and found about 8 nurses trying to calm her down and keep her from flailing around. Apparently, her IV had been spurting blood everywhere and she was going crazy because I wasn't there. I held her tight for awhile and got into the bed with her right as she threw up all over us and the bed.
We got cleaned up and she slept very well the rest of the night. I, on the other hand, had a hard time sleeping on a hard couch/bed thing, while the fancy air mattress on Kayla's bed inflating and deflating to contour to her body about every five minutes all night long. . .
During the month of February, Kayla spent almost 3 weeks suffering from horrible and constant headaches. We were in and out the doctor about 5 times. She had an ear infection, then pneumonia, but after those cleared up, she still had these headaches. We did a CT scan of her head and it came back normal. So, I was relieved that nothing serious was going on up there. After that, her headaches seems to go away and she was getting back to normal.
A couple of weeks later on a Saturday, our 4 kiddos were at a friend's house and they pointed out to us that Kayla's pupils were very dilated and maybe that was related to her headaches. Kayla had been having a couple headaches that past week. They weren't as bad at all, but I thought that it was a great observation and decided to take her to an optometrist on that next Monday.
Sunday, I noticed a couple of things about Kayla that were a little off. She came to choir practice with me and after she took her shoes off she came into the room and called out to me. It took her a few seconds to realize where I was. She also tripped down the stairs when we were leaving. I didn't think too much of it at the time. On Monday morning, she had a hard time getting dressed. She kept putting her legs and arms into the wrong holes of her clothes. I made the appointment with the eye doctor and then took the kids to the store to get strawberries for Kayla so she would be willing to go to her appointment (she doesn't like going to the doctor!). At the store, she was walking really slow and hesitantly and she had a hard time getting in and out of the car. I was starting to get a little worried at this point.
We got home and ate lunch before we headed to the appointment. I told Kayla to finish her lunch so we could go and she answered, "I can't see it." It was sitting on her plate right in front of her. At this point I was very worried! Her vision seemed to be deteriorating at a very fast pace. I dropped my other kids off at a friends and we hurried over to the doctor.
At the optometrist, they did their best to examine my 4 year old who refuses to be examined. :) They were able to take pictures of her eyes though and the eye doctor showed me that her optic nerves were very inflamed. When I asked her what could be causing this, she told me that it was either extra fluids in her brain, maybe an infection, or possibly a tumor. I didn't like any of those options. . .
We were sent right over to the ER at the hospital across the street. The optometrist told me that they would most likely do an MRI, possibly another CT scan and a spinal tap. I called Bryson and told him to get over here NOW. He met us in the ER and after some confusion, we were put in a room and seen by a nurse and doctor. After examining Kayla (remember, she doesn't like to be examined. . . ), they decided that she did need an MRI, but would need to be sedated and they couldn't do pediatric sedation at that hospital, so they set us to St. Luke's in downtown Boise. They have a great children's hospital. Before we left the room at the ER, Kayla asked, "Who turned off the light?" Oh, boy. . .
They did not send us by ambulance, but they did tell us that we needed to get over there immediately. We made a super quick stop at home to pack a quick bag and get a few necessities since they told us we would most likely be spending the night. Our great friend and home teacher met us at our house to help give Kayla a priesthood blessing before we headed over to the hospital.
We drove over to St. Luke's and were met by a room full of doctors and nurses. As you can imagine, Kayla was a bit tired of being examined and they all wanted to examine her. She was tired and upset by this point and wanted a drink of water. Unfortunately, because they would be sedating her for the MRI, she wasn't supposed to have any food or water for 6 hours. Alrighty. . .she was even more upset and begging for water for the next three hours. It was so hard to see her so uncomfortable. After more doctors and more questions and more examining and more crying and frustration from Kayla, we were left alone to wait until the MRI.
Just to give you a timeline, we arrived at St. Luke's around 5 or 5:30PM. They came in to get her for the MRI around 8:30PM. We went down with her and were able to be with her up until they took her into the MRI room. I handed her off to 4 people who carried her kicking and screaming onto the bed. We watched as they put the mask on her and she soon went limp from the anesthesia. That was hard. . .
Bryson and I just had to wait for a few hours until they were done, so we got some dinner and went back to the hospital. Bryson then went home for the night to be there with our other kids while I stayed at the hospital. I tried to get some rest while I waited. It was about midnight when they came in and told me that she was done. They had done an MRI on her head and a spinal tap, and then went back and did an MRI of her spine. The nurse told me that they would come and get me when she started to wake up.
I told them that I needed to be right there when she woke up. . . but she woke up before they came and got me, so I was running down the hall and found about 8 nurses trying to calm her down and keep her from flailing around. Apparently, her IV had been spurting blood everywhere and she was going crazy because I wasn't there. I held her tight for awhile and got into the bed with her right as she threw up all over us and the bed.
We got cleaned up and she slept very well the rest of the night. I, on the other hand, had a hard time sleeping on a hard couch/bed thing, while the fancy air mattress on Kayla's bed inflating and deflating to contour to her body about every five minutes all night long. . .
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