TWO be continued.....
Wednesday, January 25, 2012
Monday, January 23, 2012
This too shall pass
This past Saturday night... Everything was going pretty well. We decided to give the NG tube another shot. After some Zofran and Adavan, the nurses got it in place and Tenley didn't even throw up. I was feeling confident this time would be better.
After an evening of snacking on sour patch kids and watching Princess and the Frog, I got her bottle and was ready to put her to bed. She drank most of it and didn't get an upset stomach. So far so good! The nurse was great and had explained how they would do things differently from the night before to avoid our previous problems. - They were going to start the feed at an even slower rate and not boost it up more than once throughout the night.
One little glich... as the nurse tried to pull back some sort of stomach fluid from the tube, just air came back. After pushing some air back in, she was pretty sure it was in the right spot because of a bubble noise that came right after from Tenley's stomach.
Fast forward to 12:30 am.
I woke up to Tenley gagging and the nurse wrestling with her. I jumped up and yelled, "What is going on!!" I couldn't even hear what the nurse was trying to say because Tenley was such a wreck. The tube was out, there was throw up everywhere, and I finally lost it.
I started crying and yelling saying I was so done with all of this!! No more torturing my child! I have had ENOUGH! They were trying to get the tube in once more, and the throwing up continued, so much so Tenley couldn't even catch her breath. It was beyond awful. I was bawling and yelled, why are you ruining everything! I just fed her a bottle before she fell asleep, an 8 ounce bottle of milk! You people keep sticking S#%* down her throat and making this impossible!!!!!!!!
I have never freaked out at a nurse through this whole ordeal. Not once. I hardly even cry in front of them.
They told me I had every right to have them stop and not insert the tube. I grabbed Tenley and she could not calm down. She was so tired and upset and was hitting and scratching me and screaming her lungs out. I cried right along with her. The nurses cleaned up the mess, and I somehow got Tenley's pajamas off, held her in a blanket, and after another dose of Adavan, she calmed down and fell fast asleep.
I couldn't stop crying. The nurse came back in and sat down by me in the dark. She took off her mask and told me how sorry she was... that this was all her fault and it should not have happened. She said she had tried to pull back fluid to be sure the tube was in the right place before starting the feed, and still nothing came up. This made her unsure to start the feed, and decided to try and move the tube a bit. Well once she tried that it made Tenley gag and wake up. No wonder she was so upset. What a horrible way to be woken up!
We talked for a long time, and she listened to me cry and tell her all my worries and frustrations. She sat there patiently listening, agreeing, understanding... and it felt so nice to let it all out.
The rest of that night went smoothly. The nurse hardly came in, and never bothered Tenley or woke her again. Tenley stayed asleep until 10 the next morning, with only her diaper and a blanket on.
I woke up and knew that I had to stand my ground and not let that tube go down Tenley's throat ever again. At least not now, not this round.
I went out and bought every snack food she has ever liked. I was determined to get her to eat on her own. After a little break, I went back and she was in a much better mood. Hoping she had forgotten the night before, I started to offer her the different snacks. We didn't have much luck. After a couple of hours passed, she was acting pretty tired, and I could tell her head was getting warm. Sure enough a fever was coming.
One problem to the next.
Stay strong I thought, this is to be expected. Fevers are almost a given at this stage. After some tylenol and starting antibiotics, it was starting to go down. My sister in law came to stay the night so I could have a break. I needed it badly. I headed out and the nurse made sure she had my number in case she needed to get a hold of me.
At 1:00 am my phone rang. It said Primary Children's. My heart seemed to stop as I answered. The nurse said right away that Tenley was fine. She just wanted to tell me her fever had spiked and was at 104.5. She went on to tell me her vitals were all good and steady, and her heart rate was a little high, but there wasn't anything I needed to worry about. She was watching her carefully and started her on another antibitic (that's three now)
How the heck was I suppose to sleep now? I called Robbie in tears. I asked him to pray over the phone. I was spent, and my heart felt heavy. Then I called my sister and she told me I had to get some rest, and to trust the nurses and know that they were doing everything they could and if I needed to go there, they would let me know.
I prayed my heart out... prayed I could rest and know that angels were with my little girl. Comforting and protecting her. My mind was at battle with my heart. I let my heart win and finally drifted off to sleep.
I only woke up a couple of times, and at 7am, the nurse called to tell me the fever was still lingering, but not quite as high. She reassured me that all was well, and her vitals were all still solid. She told me the plan for the day. Tenley's platelets had dropped down to 10. Yes, that's it... a normal platelet count would be somewhere around 150-400. Also, her potassium was running low.
I got to the hospital around 9, and Tenley definitely had some tired eyes. As I picked her up, I could tell she was still pretty warm. They gave her a fluid bolus that adds a lot of electrolytes, fluids, and helps her vascular system.
We had a very easy going afternoon. A lot of snuggling, and cat naps. The fever never going under 100.
She's also had a lot of diarrea. Not your normal poop... it is insanely stinky. Everytime she'd rest her little eyes, it would seem like I'd have to change her diaper right after. Finally around 2:30 she fell asleep and had a nice long nap. She needed it. This evening she was starting to get her personality back. Her temp is slowly going down, and she is taking a few little bites of crackers.
Every little bite counts.
Dr. Wright came by earlier in the day and said, "let's go ahead and start her on TPN." She was very easy going about the idea, and understood that the tube was not an option at this point. I am so thankful for doctors who listen to me, and that keep a positive attitude. I feel a lot of comfort knowing they are pleased with how well Tenley has done.
Tenley taking our picture saying cheese!
After an evening of snacking on sour patch kids and watching Princess and the Frog, I got her bottle and was ready to put her to bed. She drank most of it and didn't get an upset stomach. So far so good! The nurse was great and had explained how they would do things differently from the night before to avoid our previous problems. - They were going to start the feed at an even slower rate and not boost it up more than once throughout the night.
One little glich... as the nurse tried to pull back some sort of stomach fluid from the tube, just air came back. After pushing some air back in, she was pretty sure it was in the right spot because of a bubble noise that came right after from Tenley's stomach.
Fast forward to 12:30 am.
I woke up to Tenley gagging and the nurse wrestling with her. I jumped up and yelled, "What is going on!!" I couldn't even hear what the nurse was trying to say because Tenley was such a wreck. The tube was out, there was throw up everywhere, and I finally lost it.
LOST IT!!!!
I started crying and yelling saying I was so done with all of this!! No more torturing my child! I have had ENOUGH! They were trying to get the tube in once more, and the throwing up continued, so much so Tenley couldn't even catch her breath. It was beyond awful. I was bawling and yelled, why are you ruining everything! I just fed her a bottle before she fell asleep, an 8 ounce bottle of milk! You people keep sticking S#%* down her throat and making this impossible!!!!!!!!
I have never freaked out at a nurse through this whole ordeal. Not once. I hardly even cry in front of them.
They told me I had every right to have them stop and not insert the tube. I grabbed Tenley and she could not calm down. She was so tired and upset and was hitting and scratching me and screaming her lungs out. I cried right along with her. The nurses cleaned up the mess, and I somehow got Tenley's pajamas off, held her in a blanket, and after another dose of Adavan, she calmed down and fell fast asleep.
I couldn't stop crying. The nurse came back in and sat down by me in the dark. She took off her mask and told me how sorry she was... that this was all her fault and it should not have happened. She said she had tried to pull back fluid to be sure the tube was in the right place before starting the feed, and still nothing came up. This made her unsure to start the feed, and decided to try and move the tube a bit. Well once she tried that it made Tenley gag and wake up. No wonder she was so upset. What a horrible way to be woken up!
We talked for a long time, and she listened to me cry and tell her all my worries and frustrations. She sat there patiently listening, agreeing, understanding... and it felt so nice to let it all out.
The rest of that night went smoothly. The nurse hardly came in, and never bothered Tenley or woke her again. Tenley stayed asleep until 10 the next morning, with only her diaper and a blanket on.
I woke up and knew that I had to stand my ground and not let that tube go down Tenley's throat ever again. At least not now, not this round.
I went out and bought every snack food she has ever liked. I was determined to get her to eat on her own. After a little break, I went back and she was in a much better mood. Hoping she had forgotten the night before, I started to offer her the different snacks. We didn't have much luck. After a couple of hours passed, she was acting pretty tired, and I could tell her head was getting warm. Sure enough a fever was coming.
One problem to the next.
Stay strong I thought, this is to be expected. Fevers are almost a given at this stage. After some tylenol and starting antibiotics, it was starting to go down. My sister in law came to stay the night so I could have a break. I needed it badly. I headed out and the nurse made sure she had my number in case she needed to get a hold of me.
At 1:00 am my phone rang. It said Primary Children's. My heart seemed to stop as I answered. The nurse said right away that Tenley was fine. She just wanted to tell me her fever had spiked and was at 104.5. She went on to tell me her vitals were all good and steady, and her heart rate was a little high, but there wasn't anything I needed to worry about. She was watching her carefully and started her on another antibitic (that's three now)
How the heck was I suppose to sleep now? I called Robbie in tears. I asked him to pray over the phone. I was spent, and my heart felt heavy. Then I called my sister and she told me I had to get some rest, and to trust the nurses and know that they were doing everything they could and if I needed to go there, they would let me know.
I prayed my heart out... prayed I could rest and know that angels were with my little girl. Comforting and protecting her. My mind was at battle with my heart. I let my heart win and finally drifted off to sleep.
I only woke up a couple of times, and at 7am, the nurse called to tell me the fever was still lingering, but not quite as high. She reassured me that all was well, and her vitals were all still solid. She told me the plan for the day. Tenley's platelets had dropped down to 10. Yes, that's it... a normal platelet count would be somewhere around 150-400. Also, her potassium was running low.
I got to the hospital around 9, and Tenley definitely had some tired eyes. As I picked her up, I could tell she was still pretty warm. They gave her a fluid bolus that adds a lot of electrolytes, fluids, and helps her vascular system.
feeling yucky
Every little bite counts.
Dr. Wright came by earlier in the day and said, "let's go ahead and start her on TPN." She was very easy going about the idea, and understood that the tube was not an option at this point. I am so thankful for doctors who listen to me, and that keep a positive attitude. I feel a lot of comfort knowing they are pleased with how well Tenley has done.
not in the best mood... watching Lion King
These are all the medications and fluids going to her central line
A lot of machines at work tonight!
To give you an idea of what happens after receiving chemotherapy, these are what Tenley's counts are today...
White Blood Count 0.7 (normal 6.0-17.0)
Hematocrit 28.8 (normal 34.0-40.0)
Platelets 10 (normal 150-400)
ANC 100 (normal 1500-8500)
(Soon this number will be 0. This is her nutrifill count. It stays at 0 for at least a week.)
Once she shows signs of her counts recovering, we get to have our next break at home.
For now, we wait out the storm, but as always... this too shall pass.
For now, we wait out the storm, but as always... this too shall pass.
Saturday, January 21, 2012
Running the race
I've never run a marathon, but I have run some pretty tough races.
The one I'm in now is no exception. It is by far the hardest race I've ever been in.
Right now I feel like I'm not quite close to the end, but have made it past the half way mark.
Still at a point where quitting is possible, but haven't yet received the exhilaration of knowing the end is in sight.
Each race I've ran in, I have never quit. Never given up. No matter how badly my knees are aching... trembling... and at some points, not even bending. I managed to see it through to the end.
My knees are aching now, and if I stop I know they will become even more painful and it will be impossible to start running again.
Yesterday was a long hard day.
I woke up with Tenley and we got our day going by ordering some breakfast and turning on Disney Junior. Our nurse came in, one we've never had... but I could tell she was going to be great. I could tell just by Tenley's coloring that she would probably be getting some blood. Her hematocrit had been getting pretty low, and when that's really low, red blood cells are in need. We also had to change her dressing over her central line. It was coming up on the bottom, so it needed to be replaced asap.
Tenley was doing really well and hardly cried when we started taking off the old dressing, but then she decided she was getting sick of it and started to scream and yell. That turned into her coughing... then gagging... then throwing up. All while her chest was exposed. Thankfully I had her head tilted away and we rang in another nurse to help us. We got the job done, but this was just the beginning...
After the food came, Tenley was back to feeling happy and we began eating. I ordered one of my kids favorites, "sparkly toast." We named cinnamon sugar toast this when Taryn was little. Tenley ate two whole slices of the stuff! Yes, I was so happy. She has been on a calorie count for the past few days. Knowing her counts were heading down, and her appetite would be as well, the nutritionist asked us to write down every little bite she takes. So this was big success.
That cute nurse came back in with the stuff that makes my anxiety rise.
Oral meds.
Tenley HATES taking them and fights with all her might to spit them right out.
After I squeezed her cheeks, and the nurse put the syringe full of medicine in... Tenley started coughing, then gagging, and it all came right back out, with the sparkly toast.
Our morning was shortly turning into a very barfy one.
The nurse practitioner and the nutritionist came in and we talked about Tenley's appetite. After tracking her calories, she was only getting 1/4th of what she needed. So, they brought up the option of an NG tube. (feeding tube) - Now, I know my Tenley, and she has a lot of fight in her. This idea of a tube being there on her face wasn't something I thought would go well with her.
We tried one day last round to do the NG tube just to get her oral meds in, and it was very traumatic. I can usually deal with the screaming fits and holding her down, but that was one time I had to turn away and just cry. It was awful.
So of course this idea was not one that I liked. The type of nutrition they have supplemented her with before is called TPN. It runs through her central line into her blood stream, which is harder on her system and can cause liver problems. The doctors and nurses all prefer the NG tubes because it's a more natural form of receiving nutrition, straight into her tummy, and has less risks for infection.
So why the need to change??
Well, the last two rounds of chemo Tenley has had mouth sores that go all the way down her throat and stomach. Shoving a tube down there would have been 100 times worse. So far this round there have been no signs of mouth sores, just a weak appetite. So the benefits of the NG tube seemed to outweigh the TPN.
All of this talk was too much for me to handle. The nutritionist said they could wait until later to place the tube. My mom came up and brought Taryn. Hearing Taryn's voice made Tenley perk right up. Even with the low energy of needing blood, and her yucky morning, she gave Taryn a huge smile. They snuggled right up together and it was a priceless moment. Tenley's blood was ready and they hooked it all up. Immediately I could see her coloring come back and her energy rise.
These moments are what keep me running.
After eating some lunch, and the girls getting some ice cream cones, I told Taryn it was time for us to head out and that grandma would stay with Tenley. Well apparently Taryn had a different plan in mind... She ended up screaming the entire way out of the hospital. The kind of screaming that brings everyone to a halt.
I couldn't believe her freak out. As soon as we got outside, I grabbed her cone and threw it telling her naughty girls that throw fits like that do not get ice cream! After dragging her flailing screaming body to the car, I started bawling and told her she couldn't act that way. We both cried together and after a few minutes, we got over ourselves and she said she was so sorry and would be nice and really really wanted her ice cream.
So, after feeling like the the worst mom ever, I went back inside and got her a new one.
I called Kim and told her this day was getting more and more insane. She told me to come right over and at least let her have Taryn for awhile so I could go home and rest/shower.
After complaining all about my crazy life, and letting the kids get settled watching a movie, we decided to touch up my super dark rooted hair. It was just what I needed. Who needs a shower when they can get their hair beautified instead?
I was feeling so much better. The kids were having so much fun playing together. We snacked and gabbed while my foils were cooking on my head, then ate delicious brownies, and gabbed some more. For a bit, life felt normal again.
As Taryn and I left, I felt rejuvenated and ready for what the night might bring. We drove back up to the hospital to switch off with my mom. As we made our way down the hall I could hear Tenley screaming. They were putting in the tube. I rushed Taryn over to play in the toy area, and ran to the room to be there for my baby. They were just finishing up getting the tube in place and thankfully it all went pretty well. They had given her Adavan, which is similar to Benadryl in making her drowsy and forgetful, but that did not stop her from gagging over and over again until she finally threw up. Imagine this tube running down the back of your throat. Just thinking about it makes me feel gaggy. The gagging came and went for the next hour, which the nurse said was to be expected.
Taryn was so concerned for her sister. We explained what the tube was for, and how it would help Tenley grow and get her medicine. After my Mom and Taryn left, (this time without all the drama) we got settled and watched some shows, read books, and played. Tenley seemed content, and was playing her little laundry game, helping me fold and unfold her blankets. Finally after 8:00, it was time to start her nutrition, and see how well she handles it.
Because this tube is going into her stomach, which is not a sterile area, it is pretty easy to hook it all up. No alcohol wipes... no gloves... just hook the two tubes together and it's set. They set the rate very very slow to start. If it goes too quickly, the gagging and throwing up issue starts again. Throughout the night they planned to up it in small increments.
At 10:00 we were all ready for bed. I started rocking Tenley and she kept pointing to her bottle. I had the nurse get her some milk and after she drank half of it, she pointed to the crib. I started to lay her down, and just then she threw up. A ton. Everywhere.
It was a huge mess, and the tube they had put in just hours before had come right out. She was so overly tired, and all of this was just too much for her to deal with.
I can soooo relate.
After she threw a major fit, and did NOT want me to change her clothes, her bedding, or her pillow, I finally gave in and she slept in most of that mess. I am not even kidding. She was asleep, and I was exhausted from the day. I realized I never even had anything to eat for dinner. After talking and crying to Robbie, I called Kim yet again, and she was out with our friend Tiffany. They came up from Fort Union and brought me a burger and fries from In 'n Out.
Again, a lifesaving moment. More tears came as they arrived, and laughter followed soon after. I made my way back to the stinky barf room, and couldn't have fallen asleep any faster.
Today we woke up to a new day. The rest of the night went well, thankfully, and I felt like the worst was over. After an easy going morning, the throwing up started again.
Not again I thought.... what is the point of this tube that is suppose to give her the nutrition she needs, if she is just going to throw up constantly!? I have been on the fence all day with how to handle this situation. On one hand, I just want to say, "No more! We are done with this tube, and it is just not working!" But on the other hand, I want to do everything possible to keep her from becoming weak and make sure she receives the nutrition she needs.
Who knew these would be the worries I would have. I want the worries of wondering what to make for dinner tonight, and which laundry detergent is best. Those are suppose to be the normal mom day to day worries.
But for now, I have to keep up the pace and lengthen my stride. We will get to that finish line soon, Tenley by my side.... and when that finish line comes into view, nothing will hold us back from sprinting across it.
The one I'm in now is no exception. It is by far the hardest race I've ever been in.
Right now I feel like I'm not quite close to the end, but have made it past the half way mark.
Still at a point where quitting is possible, but haven't yet received the exhilaration of knowing the end is in sight.
Each race I've ran in, I have never quit. Never given up. No matter how badly my knees are aching... trembling... and at some points, not even bending. I managed to see it through to the end.
My knees are aching now, and if I stop I know they will become even more painful and it will be impossible to start running again.
Yesterday was a long hard day.
I woke up with Tenley and we got our day going by ordering some breakfast and turning on Disney Junior. Our nurse came in, one we've never had... but I could tell she was going to be great. I could tell just by Tenley's coloring that she would probably be getting some blood. Her hematocrit had been getting pretty low, and when that's really low, red blood cells are in need. We also had to change her dressing over her central line. It was coming up on the bottom, so it needed to be replaced asap.
Tenley was doing really well and hardly cried when we started taking off the old dressing, but then she decided she was getting sick of it and started to scream and yell. That turned into her coughing... then gagging... then throwing up. All while her chest was exposed. Thankfully I had her head tilted away and we rang in another nurse to help us. We got the job done, but this was just the beginning...
After the food came, Tenley was back to feeling happy and we began eating. I ordered one of my kids favorites, "sparkly toast." We named cinnamon sugar toast this when Taryn was little. Tenley ate two whole slices of the stuff! Yes, I was so happy. She has been on a calorie count for the past few days. Knowing her counts were heading down, and her appetite would be as well, the nutritionist asked us to write down every little bite she takes. So this was big success.
That cute nurse came back in with the stuff that makes my anxiety rise.
Oral meds.
Tenley HATES taking them and fights with all her might to spit them right out.
After I squeezed her cheeks, and the nurse put the syringe full of medicine in... Tenley started coughing, then gagging, and it all came right back out, with the sparkly toast.
Our morning was shortly turning into a very barfy one.
The nurse practitioner and the nutritionist came in and we talked about Tenley's appetite. After tracking her calories, she was only getting 1/4th of what she needed. So, they brought up the option of an NG tube. (feeding tube) - Now, I know my Tenley, and she has a lot of fight in her. This idea of a tube being there on her face wasn't something I thought would go well with her.
We tried one day last round to do the NG tube just to get her oral meds in, and it was very traumatic. I can usually deal with the screaming fits and holding her down, but that was one time I had to turn away and just cry. It was awful.
So of course this idea was not one that I liked. The type of nutrition they have supplemented her with before is called TPN. It runs through her central line into her blood stream, which is harder on her system and can cause liver problems. The doctors and nurses all prefer the NG tubes because it's a more natural form of receiving nutrition, straight into her tummy, and has less risks for infection.
So why the need to change??
Well, the last two rounds of chemo Tenley has had mouth sores that go all the way down her throat and stomach. Shoving a tube down there would have been 100 times worse. So far this round there have been no signs of mouth sores, just a weak appetite. So the benefits of the NG tube seemed to outweigh the TPN.
All of this talk was too much for me to handle. The nutritionist said they could wait until later to place the tube. My mom came up and brought Taryn. Hearing Taryn's voice made Tenley perk right up. Even with the low energy of needing blood, and her yucky morning, she gave Taryn a huge smile. They snuggled right up together and it was a priceless moment. Tenley's blood was ready and they hooked it all up. Immediately I could see her coloring come back and her energy rise.
After eating some lunch, and the girls getting some ice cream cones, I told Taryn it was time for us to head out and that grandma would stay with Tenley. Well apparently Taryn had a different plan in mind... She ended up screaming the entire way out of the hospital. The kind of screaming that brings everyone to a halt.
I couldn't believe her freak out. As soon as we got outside, I grabbed her cone and threw it telling her naughty girls that throw fits like that do not get ice cream! After dragging her flailing screaming body to the car, I started bawling and told her she couldn't act that way. We both cried together and after a few minutes, we got over ourselves and she said she was so sorry and would be nice and really really wanted her ice cream.
So, after feeling like the the worst mom ever, I went back inside and got her a new one.
I called Kim and told her this day was getting more and more insane. She told me to come right over and at least let her have Taryn for awhile so I could go home and rest/shower.
After complaining all about my crazy life, and letting the kids get settled watching a movie, we decided to touch up my super dark rooted hair. It was just what I needed. Who needs a shower when they can get their hair beautified instead?
As Taryn and I left, I felt rejuvenated and ready for what the night might bring. We drove back up to the hospital to switch off with my mom. As we made our way down the hall I could hear Tenley screaming. They were putting in the tube. I rushed Taryn over to play in the toy area, and ran to the room to be there for my baby. They were just finishing up getting the tube in place and thankfully it all went pretty well. They had given her Adavan, which is similar to Benadryl in making her drowsy and forgetful, but that did not stop her from gagging over and over again until she finally threw up. Imagine this tube running down the back of your throat. Just thinking about it makes me feel gaggy. The gagging came and went for the next hour, which the nurse said was to be expected.
Taryn was so concerned for her sister. We explained what the tube was for, and how it would help Tenley grow and get her medicine. After my Mom and Taryn left, (this time without all the drama) we got settled and watched some shows, read books, and played. Tenley seemed content, and was playing her little laundry game, helping me fold and unfold her blankets. Finally after 8:00, it was time to start her nutrition, and see how well she handles it.
Because this tube is going into her stomach, which is not a sterile area, it is pretty easy to hook it all up. No alcohol wipes... no gloves... just hook the two tubes together and it's set. They set the rate very very slow to start. If it goes too quickly, the gagging and throwing up issue starts again. Throughout the night they planned to up it in small increments.
At 10:00 we were all ready for bed. I started rocking Tenley and she kept pointing to her bottle. I had the nurse get her some milk and after she drank half of it, she pointed to the crib. I started to lay her down, and just then she threw up. A ton. Everywhere.
It was a huge mess, and the tube they had put in just hours before had come right out. She was so overly tired, and all of this was just too much for her to deal with.
I can soooo relate.
After she threw a major fit, and did NOT want me to change her clothes, her bedding, or her pillow, I finally gave in and she slept in most of that mess. I am not even kidding. She was asleep, and I was exhausted from the day. I realized I never even had anything to eat for dinner. After talking and crying to Robbie, I called Kim yet again, and she was out with our friend Tiffany. They came up from Fort Union and brought me a burger and fries from In 'n Out.
Again, a lifesaving moment. More tears came as they arrived, and laughter followed soon after. I made my way back to the stinky barf room, and couldn't have fallen asleep any faster.
Today we woke up to a new day. The rest of the night went well, thankfully, and I felt like the worst was over. After an easy going morning, the throwing up started again.
Not again I thought.... what is the point of this tube that is suppose to give her the nutrition she needs, if she is just going to throw up constantly!? I have been on the fence all day with how to handle this situation. On one hand, I just want to say, "No more! We are done with this tube, and it is just not working!" But on the other hand, I want to do everything possible to keep her from becoming weak and make sure she receives the nutrition she needs.
Who knew these would be the worries I would have. I want the worries of wondering what to make for dinner tonight, and which laundry detergent is best. Those are suppose to be the normal mom day to day worries.
But for now, I have to keep up the pace and lengthen my stride. We will get to that finish line soon, Tenley by my side.... and when that finish line comes into view, nothing will hold us back from sprinting across it.
Monday, January 16, 2012
Our Everyday
This is a glimpse of our everyday. Amy came up and we captured the little things that go on around the hospital. As crazy as this time is, we are making the most of every "Brand New Day"!
Enjoy!!!
Sunday, January 15, 2012
Consider the sweet tender children
"The Lord shall fight for you, and ye shall hold your peace" - Exodus 14:14
This is one of my favorite songs. It was sung by one of our relatives at my Dad's funeral. It holds a tender place in my heart... today I heard it driving up to Primary's to pick up Robbie. I never payed much attention to this verse, but it really hit me today and made me very teary.
Still does.
"Consider the sweet, tender children
Who must suffer on this earth.
The pains of all of them He carried
From the day of His birth."
I loved hearing this in Conference this past Fall. That was only 3 weeks before Tenley was diagnosed. I can't describe how grateful I am for this Gospel and all the peace and comfort it brings to me. I can't imagine going through this life without it.
"And He will heal those who trust Him,
And make their hearts as gold."
Wednesday, January 11, 2012
The days are long, but the years are short
It's been too long since I've updated about little Tenley.
Well, we had an awesome two weeks at home. It was so great and easy going... nothing to hook up to her central line, just a couple of oral meds a day. Yep, that I can handle.
We did have one little blip... that central line of hers started to act up yet again. This time our home health nurse (oh, we found one that we love!) caught it before it actually had a break, he saw that it was weak in one spot... so we made the trip to Primary's and got it all taken care of by the I.V. team. I am learning through trial and error what works best for us...
Dylan the home health nurse and I.V. team are on our good side.
I was so worried Tenley was going to get a fever at home. Taryn caught a bug and had a yucky runny nose with a cough and a fever the second day after Tenley was home... so I thought for sure we'd be heading right back to Primary's once Tenley caught the bug.
She did catch it, but never once had a fever. It was a miracle. Really it was! Her nose was a mess, and the cough was full of phlegm, but the fevers never hit her like they did Taryn.
...until yesterday....
Yesterday we were admitted to start round 3. The day started off with a visit to the clinic and then to the RTU for her bone marrow aspirate and lumbar puncture. These procedures are done after every round once her counts have reached a certain number to check and make sure she is still in remission.
Everything went nice and smoothly, she came out of anesthesia just fine, and we made our way up to our room in ICS, which happens to be the same one we had last round.
My mom and Lisa helped bring everything in and put things away. Then Tenley decided she was tired and I rocked her to sleep. She would not let me lay her down in the crib. "So we are back to this little game?" is what I thought, but I figured she knew where we were and wasn't going to let me set her down anywhere... not quite yet.
After a short nap (for both of us) I woke up realizing I had been drooling on her head... oops! Then I put a movie on for her while I kept working on hanging things up in her room. After awhile I realized she was being pretty quiet and looked pretty tired and worn out. I decided the room could wait, and I needed to keep holding my baby. When I picked her up she was burning hot. I called the nurse in and sure enough she had a fever.
To consider a temp a fever there, it has to be at least 100.4. They check everything in celcius. So 100.4 would be 38.
She was 38.7
After waiting for blood cultures to be drawn (which they do everytime they get a fever to check for any infection that could be growing) and Tylenol to be ordered, I felt like she was getting even hotter.
Sure enough, I was right. The nurse checked her temp again and it was 40.2
Bad bews... I knew that was a bad number.
For us farenheit people that is 105.4
I was in a total panic! How do we get it down!!! We had already given Tenley the tylenol about ten minutes before, so we got out ice packs and cold cloths to put on her head and body.
She felt like a fire in my arms, and I really was a mess stressing over all her little body has gone through and is about to go through. Thankfully the nurse that was taking care of us is one of my favorites and I trust her completely. She has worked there for over ten years and she is the real deal. She kept telling me that all of Tenley's vitals were good. Her blood pressure, oxygen, and everything else was looking good, so panicking wasn't neccessary.
After 20 minutes or so we checked her temp again, and it was down to 39.1
I felt like I could breathe again.
It jumped up a little and then would go back down, and until she fell asleep around 11 that was how our evening went. Me holding her with ice packs and damp cloths, praying that this would subside, and not cause us any more problems throughout the night.
My Aunt and Uncle came along with their daughter and her husband. My Uncle gave Tenley as well as myself blessings. I prayed that I would have faith in his words and let the power of the preisthood take over and work it's miracles.
Finally at midnight, after we had both fallen asleep in our own beds, her temp was back to normal.
I am so thankful we were there... already admitted to the hospital. If a fever ever does occur at home, and if it lasts at least an hour, we have to bring Tenley in immediately. So to have already been there was such a blessing.
And to have an around the clock nurse that was so on guard and prepared to come in and check on Tenley every two hours, making sure she was doing well, checking her temp regularly, but also letting her get some good sleep. It was a huge relief to me. I felt like I could actually fall asleep.
and sleep we did....
So that was day 1 of round 3.
Round three actually begins tomorrow with the first dose of chemo. It will last 5 days and Tenley will be receiving a much higher dose of a drug called ARA-C. The last two rounds she has been given this same drug, but it has been increased to more than 4x it's strength for this round.
Today was less stressful, and Tenley kept a normal temp... but I could tell the area where they did her BMA/LP from yesterday was painful to her. She did not want to walk, and if she did, she was hunched over and only took a few steps. Seeing her walk in pain brought back a flood of feelings from her being diagnosed. Anxiety rushed over me as those early days and thoughts came back. Such an awful feeling....
I am so glad we are halfway done. I never want to relive those first few days of fear, worry, and heartache that came with it.
We have made it this far, and will continue to fight... this I know. Once again, Tenley is my hero and I will forever be cheering her on. These days may feel long and seem to never end, but the years of young children pass too quickly and I will not let myself take them for granted.
She is here, and that is all that matters today....
Well, we had an awesome two weeks at home. It was so great and easy going... nothing to hook up to her central line, just a couple of oral meds a day. Yep, that I can handle.
We did have one little blip... that central line of hers started to act up yet again. This time our home health nurse (oh, we found one that we love!) caught it before it actually had a break, he saw that it was weak in one spot... so we made the trip to Primary's and got it all taken care of by the I.V. team. I am learning through trial and error what works best for us...
Dylan the home health nurse and I.V. team are on our good side.
I was so worried Tenley was going to get a fever at home. Taryn caught a bug and had a yucky runny nose with a cough and a fever the second day after Tenley was home... so I thought for sure we'd be heading right back to Primary's once Tenley caught the bug.
She did catch it, but never once had a fever. It was a miracle. Really it was! Her nose was a mess, and the cough was full of phlegm, but the fevers never hit her like they did Taryn.
...until yesterday....
Yesterday we were admitted to start round 3. The day started off with a visit to the clinic and then to the RTU for her bone marrow aspirate and lumbar puncture. These procedures are done after every round once her counts have reached a certain number to check and make sure she is still in remission.
- which means there are no signs of any cancer cells from what they can see -
Everything went nice and smoothly, she came out of anesthesia just fine, and we made our way up to our room in ICS, which happens to be the same one we had last round.
My mom and Lisa helped bring everything in and put things away. Then Tenley decided she was tired and I rocked her to sleep. She would not let me lay her down in the crib. "So we are back to this little game?" is what I thought, but I figured she knew where we were and wasn't going to let me set her down anywhere... not quite yet.
After a short nap (for both of us) I woke up realizing I had been drooling on her head... oops! Then I put a movie on for her while I kept working on hanging things up in her room. After awhile I realized she was being pretty quiet and looked pretty tired and worn out. I decided the room could wait, and I needed to keep holding my baby. When I picked her up she was burning hot. I called the nurse in and sure enough she had a fever.
To consider a temp a fever there, it has to be at least 100.4. They check everything in celcius. So 100.4 would be 38.
She was 38.7
After waiting for blood cultures to be drawn (which they do everytime they get a fever to check for any infection that could be growing) and Tylenol to be ordered, I felt like she was getting even hotter.
Sure enough, I was right. The nurse checked her temp again and it was 40.2
Bad bews... I knew that was a bad number.
For us farenheit people that is 105.4
I was in a total panic! How do we get it down!!! We had already given Tenley the tylenol about ten minutes before, so we got out ice packs and cold cloths to put on her head and body.
She felt like a fire in my arms, and I really was a mess stressing over all her little body has gone through and is about to go through. Thankfully the nurse that was taking care of us is one of my favorites and I trust her completely. She has worked there for over ten years and she is the real deal. She kept telling me that all of Tenley's vitals were good. Her blood pressure, oxygen, and everything else was looking good, so panicking wasn't neccessary.
After 20 minutes or so we checked her temp again, and it was down to 39.1
I felt like I could breathe again.
It jumped up a little and then would go back down, and until she fell asleep around 11 that was how our evening went. Me holding her with ice packs and damp cloths, praying that this would subside, and not cause us any more problems throughout the night.
My Aunt and Uncle came along with their daughter and her husband. My Uncle gave Tenley as well as myself blessings. I prayed that I would have faith in his words and let the power of the preisthood take over and work it's miracles.
Finally at midnight, after we had both fallen asleep in our own beds, her temp was back to normal.
I am so thankful we were there... already admitted to the hospital. If a fever ever does occur at home, and if it lasts at least an hour, we have to bring Tenley in immediately. So to have already been there was such a blessing.
And to have an around the clock nurse that was so on guard and prepared to come in and check on Tenley every two hours, making sure she was doing well, checking her temp regularly, but also letting her get some good sleep. It was a huge relief to me. I felt like I could actually fall asleep.
and sleep we did....
So that was day 1 of round 3.
Round three actually begins tomorrow with the first dose of chemo. It will last 5 days and Tenley will be receiving a much higher dose of a drug called ARA-C. The last two rounds she has been given this same drug, but it has been increased to more than 4x it's strength for this round.
Today was less stressful, and Tenley kept a normal temp... but I could tell the area where they did her BMA/LP from yesterday was painful to her. She did not want to walk, and if she did, she was hunched over and only took a few steps. Seeing her walk in pain brought back a flood of feelings from her being diagnosed. Anxiety rushed over me as those early days and thoughts came back. Such an awful feeling....
I am so glad we are halfway done. I never want to relive those first few days of fear, worry, and heartache that came with it.
We have made it this far, and will continue to fight... this I know. Once again, Tenley is my hero and I will forever be cheering her on. These days may feel long and seem to never end, but the years of young children pass too quickly and I will not let myself take them for granted.
She is here, and that is all that matters today....
(my pictures aren't moving to the right spots... so they get to all hang out here at the bottom!)
getting ready to go get her line all fixed!
waiting... and more waiting...
this is the blip I was talking about.
All fixed!
waiting in clinic
our home yet again for the next few weeks...
This is how awful it would be without all our wall art!!
BORING
- I'll post more pics, but it's late and I am T.I.R.E.D!!-
Thursday, January 5, 2012
I love chick-fil-a so much I am blogging about it!
Yep it is true! I am passionate about this place. Especially the new one located in Murray down the street from Target. Those two places are my home away from home away from home - ya know... target/chick-fil-a... then my Mom's.... then Reno. Home, Home, and Home.
Today just reaffirmed my love for this place.
Normally Taryn and I meet up with Kim and her kids.
Today it was just me and Tar. We walked inside and immediately she started whining saying she wanted to hangabur (hamburger). This was after the crying plea she gave about wanting to go to chick-fil-a!
I tried explaining to her that they only have chicken nuggets for the kids and that's why it has the name CHICK in it. Finally she decided she'd have the chicken strips. We all love their special dipping sauce (and when I say "all" I mean me, Taryn, my mom, Lisa, Kim, and anyone else that has ever tired it) So that's what I asked for....
Once we sat down, and had our food brought out to us, Taryn yet again started to whine saying she couldn't start eating yet. After repeatedly asking her why she finally told me, "Because Kim isn't here yet with Ava and Gage and Vivi!"
Oh boy...
I told her they weren't coming and we hadn't called them to ask if they could come. So I pretended to call on my phone and see if they could meet us and then told Taryn they were taking naps.
More crying came and I tried to just let her calm down on her own, then after a minute I asked if she still wanted to try her chicken strips... well, I had to break them up into nugget sizes for her to give them a chance. She still was bummed about her friends not coming, so I told her we could go pick a new dipping sauce if she wanted, and if she turned her frown upside down she could trade her toy in for an ice cream cone.
Thankfully the drama ended and we had fun eating our yummy chicken and giggling about funny shadows we were making.
All the while, I noticed a 40 something year old guy kind of glancing our way and smiling when we went to make the sauce change... Not in a creepy way, just a... ya I've been there kind of way.
A few minutes later he came over to our table and nervously said, I have to tell you something... I was really impressed with how well you handled your daughter when she was upset. There are so many parents that just yell back and get extremely frustrated with their kids and it's uncomfortable to watch. It was so nice to see you take your time and be understanding. I can tell you are a very loving and good Mom.
Wow... made my day!
Actually I think that comment will forever make me grateful to be a Mom. I am FAR from being perfect, and I know this whole parenting thing does not come with any kind of handbook, but to have a moment like that, it's reassuring to hear that I'm doing an ok job.
Now if you are not a chick-fil-a lover... let me give you some other reasons why you should become one.
1. The customer service is top notch. Seriously, they train those employees to really help the customer first and always. Before Tenley was diagnosed and we were eating there after an afternoon at Gardner Village... I had my hands full trying to carry Tenley and our tray and making sure Taryn wasn't running out of sight. One of the employees grabbed my tray, asked what other items I needed, got us to a table and even got the highchair!
2. Oh, one of my favorite things... they place these plastic sticky placemats on the table for your kids to set their food on. Genius!! No ghetto McDonald's napkin to set fries on here!
3. They always bring your food out to your table if it wasn't ready right when you ordered it... and then without fail they always ask if there is anything else they can get for you or help you with.
4. The peppermint shake. 'nough said.
5. The play area for the kids is perfect in every way. You know they were thinking straight when they kept it a "kids only" type thing. No tables or chairs to make the parents sit in torture to eat a meal or sip a diet coke while sniffing stinky socks and skid marks. Nah-Uh!
6. Plus it doesn't smell like your typical play place. I had to go in and help Taryn get her socks on and I was thoroughly impressed. Just enough space for some climbing, a slide, and a whole little toddler area where they won't get whacked in the head. Oh, and it's all glass walls, so you can always keep an eye on your kids without hearing all the crazy loudness that goes on! Love It!
7. Today I noticed it was actually peaceful there. The music playing throughout was just piano music. Soft and mellow. - wow does that make me old? Whatever, I'm all about peacefulness right now.
8. Oh, and the food there is sooooo good. Like really, I crave those chicken strips. The fries are different, and I like that. For some reason the waffle shape makes them seem less greasy and more healthy? Yes, they have healthy fries.
9. Another great find today.... they have someone come in and do a craft for the kids every other Thursday from 2-3! Really? No, Really!!! I'm Serious!!! This lady came up to me and said, when your daughter is done with her meal, she can come make a mini marshmallow snowman if she'd like.
At first I was thinking, is this like a birthday party and they are using my Mom's trick?? But then she said they come every other week. Whoa! Now I really wish Kim had been there... more time for us to be free from children!
10.....
All in all... I love chick-fil-a. We left in good moods, spirits lifted, an ice cream cone for Taryn, a peppermint shake for me, and a snowman made out of mini marshmallows.
Today just reaffirmed my love for this place.
Normally Taryn and I meet up with Kim and her kids.
Today it was just me and Tar. We walked inside and immediately she started whining saying she wanted to hangabur (hamburger). This was after the crying plea she gave about wanting to go to chick-fil-a!
I tried explaining to her that they only have chicken nuggets for the kids and that's why it has the name CHICK in it. Finally she decided she'd have the chicken strips. We all love their special dipping sauce (and when I say "all" I mean me, Taryn, my mom, Lisa, Kim, and anyone else that has ever tired it) So that's what I asked for....
Once we sat down, and had our food brought out to us, Taryn yet again started to whine saying she couldn't start eating yet. After repeatedly asking her why she finally told me, "Because Kim isn't here yet with Ava and Gage and Vivi!"
Oh boy...
I told her they weren't coming and we hadn't called them to ask if they could come. So I pretended to call on my phone and see if they could meet us and then told Taryn they were taking naps.
More crying came and I tried to just let her calm down on her own, then after a minute I asked if she still wanted to try her chicken strips... well, I had to break them up into nugget sizes for her to give them a chance. She still was bummed about her friends not coming, so I told her we could go pick a new dipping sauce if she wanted, and if she turned her frown upside down she could trade her toy in for an ice cream cone.
Thankfully the drama ended and we had fun eating our yummy chicken and giggling about funny shadows we were making.
All the while, I noticed a 40 something year old guy kind of glancing our way and smiling when we went to make the sauce change... Not in a creepy way, just a... ya I've been there kind of way.
A few minutes later he came over to our table and nervously said, I have to tell you something... I was really impressed with how well you handled your daughter when she was upset. There are so many parents that just yell back and get extremely frustrated with their kids and it's uncomfortable to watch. It was so nice to see you take your time and be understanding. I can tell you are a very loving and good Mom.
Wow... made my day!
Actually I think that comment will forever make me grateful to be a Mom. I am FAR from being perfect, and I know this whole parenting thing does not come with any kind of handbook, but to have a moment like that, it's reassuring to hear that I'm doing an ok job.
Now if you are not a chick-fil-a lover... let me give you some other reasons why you should become one.
1. The customer service is top notch. Seriously, they train those employees to really help the customer first and always. Before Tenley was diagnosed and we were eating there after an afternoon at Gardner Village... I had my hands full trying to carry Tenley and our tray and making sure Taryn wasn't running out of sight. One of the employees grabbed my tray, asked what other items I needed, got us to a table and even got the highchair!
2. Oh, one of my favorite things... they place these plastic sticky placemats on the table for your kids to set their food on. Genius!! No ghetto McDonald's napkin to set fries on here!
3. They always bring your food out to your table if it wasn't ready right when you ordered it... and then without fail they always ask if there is anything else they can get for you or help you with.
4. The peppermint shake. 'nough said.
5. The play area for the kids is perfect in every way. You know they were thinking straight when they kept it a "kids only" type thing. No tables or chairs to make the parents sit in torture to eat a meal or sip a diet coke while sniffing stinky socks and skid marks. Nah-Uh!
6. Plus it doesn't smell like your typical play place. I had to go in and help Taryn get her socks on and I was thoroughly impressed. Just enough space for some climbing, a slide, and a whole little toddler area where they won't get whacked in the head. Oh, and it's all glass walls, so you can always keep an eye on your kids without hearing all the crazy loudness that goes on! Love It!
7. Today I noticed it was actually peaceful there. The music playing throughout was just piano music. Soft and mellow. - wow does that make me old? Whatever, I'm all about peacefulness right now.
8. Oh, and the food there is sooooo good. Like really, I crave those chicken strips. The fries are different, and I like that. For some reason the waffle shape makes them seem less greasy and more healthy? Yes, they have healthy fries.
9. Another great find today.... they have someone come in and do a craft for the kids every other Thursday from 2-3! Really? No, Really!!! I'm Serious!!! This lady came up to me and said, when your daughter is done with her meal, she can come make a mini marshmallow snowman if she'd like.
At first I was thinking, is this like a birthday party and they are using my Mom's trick?? But then she said they come every other week. Whoa! Now I really wish Kim had been there... more time for us to be free from children!
10.....
Tuesday, January 3, 2012
I believe in Santa
This Christmas of course was different than years past.
It was special in it's own way.
It was hard for me to decide on what to do for the special day. I didn't want to weaken the excitement for Taryn.... she is very much aware of Santa and his elves. I also didn't want to miss seeing her face Christmas morning as she walked into the same living room I did for so many years...
I can still remember the butterflies raging in my chest and squealing with excitement.
Robbie and I both wanted to be with her on Christmas morning, and thankfully my mother in law offered to stay Christmas eve with Tenley so we could.
Let me tell ya, Santa did not disappoint.
And by Santa... I mean, the real jolly old St. Nicholas.
You know who you are...
A few days before Christmas we received packages from people we had never met, they work for a company that does a sub for santa to a specific family every year. We were the chosen ones. The gal that shared our story came by the house a few weeks prior to give us some gift cards and make us aware of how much our story had impacted her fellow employees. I feel so thankful to them and the heartfelt gifts that were sent our way.
Another surprise was left a couple days early... one night the doorbell rang and we found a large black garbage sack waiting on the porch with a big red bow and note saying,
It was special in it's own way.
It was hard for me to decide on what to do for the special day. I didn't want to weaken the excitement for Taryn.... she is very much aware of Santa and his elves. I also didn't want to miss seeing her face Christmas morning as she walked into the same living room I did for so many years...
I can still remember the butterflies raging in my chest and squealing with excitement.
Robbie and I both wanted to be with her on Christmas morning, and thankfully my mother in law offered to stay Christmas eve with Tenley so we could.
Let me tell ya, Santa did not disappoint.
And by Santa... I mean, the real jolly old St. Nicholas.
You know who you are...
A few days before Christmas we received packages from people we had never met, they work for a company that does a sub for santa to a specific family every year. We were the chosen ones. The gal that shared our story came by the house a few weeks prior to give us some gift cards and make us aware of how much our story had impacted her fellow employees. I feel so thankful to them and the heartfelt gifts that were sent our way.
To: Tenley and Taryn
From: Santa.
I didn't want to spoil any surprise inside, so we kept the bag as it was until Christmas morning came.
Another night in the hospital a cute pink (large) basket of gifts was given to us by an anonymous friend with a note that read, "you do not know us, but we know you... we want you to know how many lives you are changing... Merry Christmas." There was also an envelope with a great amount of cash. I still have no idea who sent this amazing gift our way.
My very favorite gift was this painting of my girls watching the floating lanterns from Tangled.
I absolutely love it.
There have been many other amazing anonymous gifts and envelopes with cash from secret Santa's.
Each one I feel an enormous amount of gratitude towards.
The only way I can think of thanking them is by paying it forward. I want to change someones Christmas season for the better. I want to make them feel Merry and Bright. I want to know their children as well as themselves will be surprised on Christmas morning as they open exciting gifts with smiles that cannot be rubbed off their faces.
I experienced it, and I want to pass that joy along.
That joy reminds me of the true meaning of Christmas. Even though the fun of St. Nick will always be a tradition, Christ is here all year round. That joy and gratitude is something we can all keep in our hearts if we keep Him the center of our lives.
Paying His message forward.
Our burdens can be made light, and the smiles from that joy knowing He will never leave us will still be going strong.
Tenley's favorite gift has been her baby who gets a fever and takes medicine to help her feel better...
She's becoming quite the little mommy.
May you and yours keep the Christmas spirit throughout this new year.
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