My last infusion appt was yesterday. It was rough going, even with the best nurse in the clinic helping.
I got there early and got both arms heat packed first thing. I have one vein in my left arm that we have hit several times. It came right to the surface, only to disappear when the needle went in. Try #1 was no good. Erin had left my other arm heat packed in the event we missed. She worked my arm over good, just trying to find a spot that would be good to go. She found one, but it went in and collapsed. Try #2 was no good, and Erin was done too. The rule on the floor is that each nurse only gets 2 attempts and then they have to turn it over to someone else.
They heat packed my arms again, and really cranked things up, and called in another nurse from the floor. All the while the sweet nurses from the clinic walking by with expectant looks on their faces, only to have them be as sad as I was that we hadnt gotten a line in yet.
Attempt #3 was made with a larger gauge needle with the hope to get it in to stay. It was very painful and ended up another failure. My other arm had remained in heat packs just in case. Attempt #4 was enough to make me about jump right out of the chair. The nurse had to keep digging a bit too. The vein froze up, but hoping it was actually in, they let it sit for a couple minutes and I tried to relax. Erin came back over to run the line, and the saline taste in my mouth told them it was probably good to go. Erin got everything hooked up, and even though it stung like crazy, it was in, and we went for the rest. All this took about 90 minutes to finally get things in place.
I was hoping to get some work done, but after the line ended up in my right arm, it was out of commission. I tried to read for awhile, but just couldnt concentrate. I have noticed this week that I have been extremely fatigued, sluggish, and that my brain has just been extra fuzzy. I was also freezing yesterday. Erin piled on the heated blankets and got me a pillow and I took a nap for about an hour - I have never done that before. I tried to read a bit, but just couldnt concentrate on anything. By 1230pm I was finally done. Both arms were very sore, and I am sure that they will be for awhile. It will be interesting to see what kind of bruises show up.
Thankfully I will get a little break from getting poked again. Dr Lee's medical assistant was in the clinic and I was able to check in with him about the plan for my labs and next appt. Dr Lee put my lab appt out until March 1 and my appt on March 7. This will give me a good couple of weeks to rest and recoup a bit before the lab draw - which is a big, difficult one. Another blessing came with the names of the best IV people in the lab from the clinic nurses. Brownwynn made a special trip to the lab just for me to make sure I had the names of the best people to help me next month.
It has been a very hard 6 weeks. I am hoping that all that I have been through will strengthen my weaknesses in many ways, and not just physically. I have been very blessed to have the most wonderful nurses and care during my appts. I have also gained a great empathy and understanding of those who have even greater health needs than I do. I wont know until next month what my labs look like. It will be a bit hard to wait, wondering and hoping that what I have been doing is making a difference. Patience is something else that I am trying to learn.
I am very thankful for all the amazing care I have received, but I know that I am also thankful to be done with appts. I will write again about medical etc after my other appts next month.
Showing posts with label Medical. Show all posts
Showing posts with label Medical. Show all posts
Saturday, February 12, 2011
Wednesday, February 9, 2011
Iron Infusion # 4 & #5
I havent gotten a chance to post for awhile. Need to catch up on last couple of appts.
Two weeks ago, we got lucky. The hot packs helped my veins cooperate and the line went in on the first try. The trick was keeping it going while it was in. It started throbbing in my arm and the nurse had to disconnect and re-flush the line - which sent the taste of the saline directly to my mouth. It was very unexpected and not pleasant at all. She ended up adding another bag of saline to the line and running it slower. Once that was done, the rest was pretty uneventful. The one unexpected thing came after I got home - normally I bruise at the IV site itself. This time the bruising occurred where the throbbing had been so bad - totally away from the injection site. It was a fairly long bruise and when I showed it to the nurses last week they were very surprised. I continue to baffle them with all the odd occurrences I seem to have with everything.
I wish I could say that we had as easy of a time last week. Friday was Colton's birthday so we had him come down with me, thinking it would be a fun 2hrs to eat a yummy breakfast and play games. Our day didnt quite go according to plan though.
Preston came and got Colton to go get breakfast, thinking they would get back after my IV was in and going. When they got back, however, one attempt (with lidicaine) had been made and had failed. A 2nd try was made in my wrist, with a painful no go. During all this time, we tried to eat breakfast and start a game. By the 3rd try, though, I think that Preston & Colton had enough of watching me get poked and preston took him out to the waiting area to make some phone calls.
A long wait started again, with BOTH my arms hot packed with wet washcloths and heating pads and an extra nurse from the floor was called in.
When the hot packs came off, finally, one vein came to the surface. The new little nurse did a pretty quick job of things, again using the lidicaine, and got the line in and running clean.
By the time the line was in, we had gotten a surprise phone call from preston's parents that they had flown in early and were coming to get colton to go to lunch. Dad took Colton to lunch and then home, and mom stayed at the clinic with me. Preston went back to work, knowing he would be staying late because of how the morning went.
Things were pretty uneventful for remaining 2 hrs, other than needing and extra saline pouch and it seeming like it was taking forever. Mom & I just chatted and planned for the activities and menu for Colton's big day.
I think I really gave the gals a run for their money - 6hrs, 4 tries, 4 nurses, extra meds, etc made for a VERY long day for all of us.
I think that the nurses on staff, as well as myself, will be glad that this week is our final go of things (at least that is our hope) I have really caused so much concern each week for them, and rattled more than one nurse there in the clinic. I am not looking forward to my appt on Friday at all. Will just try to be prepared to do the best with what I have to take on and hope the rest of the weekend is more quiet.
Just a little PS - I havent written at all about my PT appts that started several weeks ago. My progress has been slow and painful. I was sent home this week with a portable electric stimulus machine to try to keep the pain levels more bearable between appts. I talked with my specialist again today about what the next plan will be. If he does not see considerable improvement in the next few weeks, x-rays, CT's and MRI's may be on the schedule. I am grateful that he is so kind and patient and that the cute gals on his staff are all wonderful. It makes things a lot easier knowing I have help and support when I need it. I will try to keep current on posts about PT etc, esp if I end up needing more in-depth tests run.
Two weeks ago, we got lucky. The hot packs helped my veins cooperate and the line went in on the first try. The trick was keeping it going while it was in. It started throbbing in my arm and the nurse had to disconnect and re-flush the line - which sent the taste of the saline directly to my mouth. It was very unexpected and not pleasant at all. She ended up adding another bag of saline to the line and running it slower. Once that was done, the rest was pretty uneventful. The one unexpected thing came after I got home - normally I bruise at the IV site itself. This time the bruising occurred where the throbbing had been so bad - totally away from the injection site. It was a fairly long bruise and when I showed it to the nurses last week they were very surprised. I continue to baffle them with all the odd occurrences I seem to have with everything.
I wish I could say that we had as easy of a time last week. Friday was Colton's birthday so we had him come down with me, thinking it would be a fun 2hrs to eat a yummy breakfast and play games. Our day didnt quite go according to plan though.
Preston came and got Colton to go get breakfast, thinking they would get back after my IV was in and going. When they got back, however, one attempt (with lidicaine) had been made and had failed. A 2nd try was made in my wrist, with a painful no go. During all this time, we tried to eat breakfast and start a game. By the 3rd try, though, I think that Preston & Colton had enough of watching me get poked and preston took him out to the waiting area to make some phone calls.
A long wait started again, with BOTH my arms hot packed with wet washcloths and heating pads and an extra nurse from the floor was called in.
When the hot packs came off, finally, one vein came to the surface. The new little nurse did a pretty quick job of things, again using the lidicaine, and got the line in and running clean.
By the time the line was in, we had gotten a surprise phone call from preston's parents that they had flown in early and were coming to get colton to go to lunch. Dad took Colton to lunch and then home, and mom stayed at the clinic with me. Preston went back to work, knowing he would be staying late because of how the morning went.
Things were pretty uneventful for remaining 2 hrs, other than needing and extra saline pouch and it seeming like it was taking forever. Mom & I just chatted and planned for the activities and menu for Colton's big day.
I think I really gave the gals a run for their money - 6hrs, 4 tries, 4 nurses, extra meds, etc made for a VERY long day for all of us.
I think that the nurses on staff, as well as myself, will be glad that this week is our final go of things (at least that is our hope) I have really caused so much concern each week for them, and rattled more than one nurse there in the clinic. I am not looking forward to my appt on Friday at all. Will just try to be prepared to do the best with what I have to take on and hope the rest of the weekend is more quiet.
Just a little PS - I havent written at all about my PT appts that started several weeks ago. My progress has been slow and painful. I was sent home this week with a portable electric stimulus machine to try to keep the pain levels more bearable between appts. I talked with my specialist again today about what the next plan will be. If he does not see considerable improvement in the next few weeks, x-rays, CT's and MRI's may be on the schedule. I am grateful that he is so kind and patient and that the cute gals on his staff are all wonderful. It makes things a lot easier knowing I have help and support when I need it. I will try to keep current on posts about PT etc, esp if I end up needing more in-depth tests run.
Saturday, January 22, 2011
Iron Infusion #3
Things went slightly better this week, I think.
When I got there, I had a new nurse assigned to me. I started off with extra low blood pressure again. Now that I think about it, I didnt get it checked before I left...We also started off with piling on the heated hospital blankets. I woke up freezing to the point of shivering, and couldnt stop at all. Those blankets sure are wonderful, so is hot chocolate which they have on hand for patients. She got me all settled and the IV nurse came over to get things started.
Deb gave it the old college try (extra heat, extra sm needles, extra everything) - and came up empty. After a painful poke in the left arm, and trying to thread the catheder, she tried to flush the line only to make me about jump out of the chair. She pulled the line back out, only to discover the catheder hadn't gone in at all...
Good thing (for me and her) was that she stopped with that try and called Erin to do the rest. Erin tried my mid arm on the right again. I about jumped out of the chair anyway, and even with a cute new nurse trying to distract me with chatter, I was not doing so well. The 2nd try didnt go either.
After applying more heat and letting me rest a bit, Erin started hunting on my right wrist. Not a good sign, esp since my left wrist is still bruised and tender from LAST week. It took everything I had to sit in the chair and not move while she poked and dug to get that dumb needle and line in. She finally got it in, though not without both of us being very distressed. She was visually unnerved when she was done, and I was already exhausted. It took an hour to finally get a line in.
She ran the iron with 2 pints of saline over 2 hrs. She ended up having to brace my arm in one position like last week too, as well as securing the line in several places with tape. I tried to sit really still and just read. It was a really long 2 hrs.
When I was finally done, we went through the fun of getting the line back out-undoing all the tape, flushing the line, etc. Being in my wrist it was extra painful coming back out. It also decided to bleed more too. Erin had to put pressure on it longer than usual before she wrapped it up. I know that both of us were still feeling very unsettled.
Both arms were very sore and it was a challenge to get them into a comfy position to drive home. I ended up being so worn out that I took some IB after I got home and slept for 2 hrs. Also really struggled during the evening. My arms were really shaky and I felt pretty crummy. I was back in bed when I put the little peeps down at 730. It took until after 9pm to finally fall asleep though. I am glad that our Saturday is going to be quiet and I can rest as needed. This appt was just plain hard.
This is appt #3. Half-way done. Not sure that Erin or I are looking forward to the next three....Hoping that my arms will be healed enough to give them somewhere to work next week.
When I got there, I had a new nurse assigned to me. I started off with extra low blood pressure again. Now that I think about it, I didnt get it checked before I left...We also started off with piling on the heated hospital blankets. I woke up freezing to the point of shivering, and couldnt stop at all. Those blankets sure are wonderful, so is hot chocolate which they have on hand for patients. She got me all settled and the IV nurse came over to get things started.
Deb gave it the old college try (extra heat, extra sm needles, extra everything) - and came up empty. After a painful poke in the left arm, and trying to thread the catheder, she tried to flush the line only to make me about jump out of the chair. She pulled the line back out, only to discover the catheder hadn't gone in at all...
Good thing (for me and her) was that she stopped with that try and called Erin to do the rest. Erin tried my mid arm on the right again. I about jumped out of the chair anyway, and even with a cute new nurse trying to distract me with chatter, I was not doing so well. The 2nd try didnt go either.
After applying more heat and letting me rest a bit, Erin started hunting on my right wrist. Not a good sign, esp since my left wrist is still bruised and tender from LAST week. It took everything I had to sit in the chair and not move while she poked and dug to get that dumb needle and line in. She finally got it in, though not without both of us being very distressed. She was visually unnerved when she was done, and I was already exhausted. It took an hour to finally get a line in.
She ran the iron with 2 pints of saline over 2 hrs. She ended up having to brace my arm in one position like last week too, as well as securing the line in several places with tape. I tried to sit really still and just read. It was a really long 2 hrs.
When I was finally done, we went through the fun of getting the line back out-undoing all the tape, flushing the line, etc. Being in my wrist it was extra painful coming back out. It also decided to bleed more too. Erin had to put pressure on it longer than usual before she wrapped it up. I know that both of us were still feeling very unsettled.
Both arms were very sore and it was a challenge to get them into a comfy position to drive home. I ended up being so worn out that I took some IB after I got home and slept for 2 hrs. Also really struggled during the evening. My arms were really shaky and I felt pretty crummy. I was back in bed when I put the little peeps down at 730. It took until after 9pm to finally fall asleep though. I am glad that our Saturday is going to be quiet and I can rest as needed. This appt was just plain hard.
This is appt #3. Half-way done. Not sure that Erin or I are looking forward to the next three....Hoping that my arms will be healed enough to give them somewhere to work next week.
Friday, January 14, 2011
Iron Infusion #2
So...today didnt go so well.
My first job of the day was to check my blood pressure. It was not good to see that it was even lower than when I left last week. My main care nurse was concerned, but said we would just keep an eye on things. The big job of the day was to get the IV in, that ended up being a lot harder than any of us would have guessed....
My nurse really struggled with finding a vein that even looked like it was going to cooperate. We pulled out all the tricks - heat pad, hot wet rags, squeezing a foam ball, slapping the surface skin, etc. We did it all, to no avail whatsoever...
The first attempt in my forearm was a total no-go. The 2nd attempt in my wrist got the needle and catheder in, but the vein was so small the nurse couldnt thread it in completely. The third attempt was in the other arm. By this time, I was in tears because the one in my wrist was pretty painful, and the nurse was done trying. The fourth attempt, done by the nurse I had last week, finally went in on my right forearm. Four attempts=1 1/2 hrs.
All this time, Preston sat quietly on the sidelines, not sure how he felt about everything. I had asked him to come sit with me and we could have our "date" (play a game and have a fun bfast together), thinking that by the time he came the IV would be in and we would be good to go. Things didnt quite go according to plan.
We started a game of Cribbage - which neither of us knew how to play before today (not sure we really do yet though) but my wrist was in alot of pain where attempt #2 was made. The nurse brought me some IB, and we tried a heating pad which wasnt working so well. I just kept it tucked under my chin and braced against my body to try to not move it or bump it at all. Shortly after they got the IV going it was stinging alot. I tried not to fuss, but the stinging got more intense and I noticed it was slowly creeping up my arm. I also realized that I had started with a headache like last week. By the time the pain was at my elbow, I was about in tears and asked the nurse to come over and see what else we could do. My main care nurse stopped all the IV's and got a saline syringe to see if she could flush it a bit. When she pushed the saline through I about jumped out of the recliner, and the tears came again, it was not good. She was concerned that the vein was too stressed and recommended that I just be done and come back another time to try again. I knew that just wasnt an option, so without spilling our whole schedule in her lap, we discussed all the options and decided that adding a 2nd saline IV and slowing the infusion down to go in over a 2hr (vs the normal 1 hr) window would be our last try at things.
When I was finally re-settled, I sent Preston out to call the kids and let them know I was going to be a lot later than planned. As I waited for him to return, I just kept looking at the clock - knowing I was going to still be another hour minimum. We decided to go ahead and let Preston go back to work so he didnt miss any more hours. I think we were both disappointed that things didnt go so good, I know I was and I had a hard time not crying after he left. Having him come for a bit was a good idea last night, just didnt go so good today. We will have to see if we decide to try to have him come next week...
After he left, I just sat and read for that last hour. The nurses came and checked on me alot, but I was doing much better, and though I could feel things in my arm, it was tolerable. We did check my blood pressure again before I left, and both of us were pleased to see that it had jumped back up to normal #'s.
There are still things to do today, but I think with the way I feel, I will forgo getting into battle mode with the kids over school stuff or worrying about house etc, and just try to lay low. I will be home with little people all day tomorrow, we can work on more school stuff then. Hopefully, the rest of the day will be uneventful...
My first job of the day was to check my blood pressure. It was not good to see that it was even lower than when I left last week. My main care nurse was concerned, but said we would just keep an eye on things. The big job of the day was to get the IV in, that ended up being a lot harder than any of us would have guessed....
My nurse really struggled with finding a vein that even looked like it was going to cooperate. We pulled out all the tricks - heat pad, hot wet rags, squeezing a foam ball, slapping the surface skin, etc. We did it all, to no avail whatsoever...
The first attempt in my forearm was a total no-go. The 2nd attempt in my wrist got the needle and catheder in, but the vein was so small the nurse couldnt thread it in completely. The third attempt was in the other arm. By this time, I was in tears because the one in my wrist was pretty painful, and the nurse was done trying. The fourth attempt, done by the nurse I had last week, finally went in on my right forearm. Four attempts=1 1/2 hrs.
All this time, Preston sat quietly on the sidelines, not sure how he felt about everything. I had asked him to come sit with me and we could have our "date" (play a game and have a fun bfast together), thinking that by the time he came the IV would be in and we would be good to go. Things didnt quite go according to plan.
We started a game of Cribbage - which neither of us knew how to play before today (not sure we really do yet though) but my wrist was in alot of pain where attempt #2 was made. The nurse brought me some IB, and we tried a heating pad which wasnt working so well. I just kept it tucked under my chin and braced against my body to try to not move it or bump it at all. Shortly after they got the IV going it was stinging alot. I tried not to fuss, but the stinging got more intense and I noticed it was slowly creeping up my arm. I also realized that I had started with a headache like last week. By the time the pain was at my elbow, I was about in tears and asked the nurse to come over and see what else we could do. My main care nurse stopped all the IV's and got a saline syringe to see if she could flush it a bit. When she pushed the saline through I about jumped out of the recliner, and the tears came again, it was not good. She was concerned that the vein was too stressed and recommended that I just be done and come back another time to try again. I knew that just wasnt an option, so without spilling our whole schedule in her lap, we discussed all the options and decided that adding a 2nd saline IV and slowing the infusion down to go in over a 2hr (vs the normal 1 hr) window would be our last try at things.
When I was finally re-settled, I sent Preston out to call the kids and let them know I was going to be a lot later than planned. As I waited for him to return, I just kept looking at the clock - knowing I was going to still be another hour minimum. We decided to go ahead and let Preston go back to work so he didnt miss any more hours. I think we were both disappointed that things didnt go so good, I know I was and I had a hard time not crying after he left. Having him come for a bit was a good idea last night, just didnt go so good today. We will have to see if we decide to try to have him come next week...
After he left, I just sat and read for that last hour. The nurses came and checked on me alot, but I was doing much better, and though I could feel things in my arm, it was tolerable. We did check my blood pressure again before I left, and both of us were pleased to see that it had jumped back up to normal #'s.
There are still things to do today, but I think with the way I feel, I will forgo getting into battle mode with the kids over school stuff or worrying about house etc, and just try to lay low. I will be home with little people all day tomorrow, we can work on more school stuff then. Hopefully, the rest of the day will be uneventful...
Saturday, January 8, 2011
Iron Infusion #1
Just wanted to do a journal post about my experience yesterday. It was and still has been a very emotional experience.
Yesterday morning I checked in at the Corvallis Clinic Oncology desk. There was lots of info to input and then I was taken back to the treatment area. The nurse assigned to me was great, really sweet, kind and patient. She went over some more paperwork and talked with me about the treatment stuff and then we got started.
Getting started for IV or blood draw anything usually requires extra work for the nurses. Since I dont have veins that tend to cooperate. The nurse piled on the wonderfully warm hospital blankets and then wrapped my arm in a hot, wet washcloth AND a heating pad to see if she could bring some veins to the surface we could work with.
In the process of me waiting, several other patients came in. I was about in tears as I listened to and watched one other patient in particular. She spoke about how happy she and her husband were to have a "break" from her chemo during the holidays so she could just enjoy things. The break seemed to have been too much on this end though as she shared how she had become physically sick just thinking about having to start treatments again. She was still strugging while there at the clinic. I watched the face of her sweet husband as he tried to keep a light sense of humor, but I could see the pain and sadness in his eyes as he watched her. I couldnt keep from crying myself. It broke my heart to listen to them, and gave me a great appreciation and a sense of awe for the sweet nurses who devote their lives to helping others in these circumstances.
Several other patients came in with concerns severe enough to require help from the nurses to administer meds/flush out pic-lines embedded in their chests. I couldnt even begin to imagine what struggles they and their families have experienced.
I was there for my own health deficiencies, but watching and listening to others I cried for the fact that even with my struggles, it wasnt nearly as much as these other patients had and were going through.
As I tried to tell Preston about my experience this morning, I cried again just describing things.
I often wonder at the lessons I am supposed to learn at times like these. I was there because my own health has been in jeopardy, and we are just now finding help that we hope will help on my own road to healing. Is my lesson to continue to learn patience, to continue to learn to endure "all that the Lord would see fit to inflict upon me", to learn gratitude for the experience and the chance to endure, or is the greatest lesson to learn one of empathy? Is it something else that I am missing altogether?
In the last 24 hrs I have reflected back on some of the most difficult experiences we have had. I remember the words of blessings that specifically told me that they were not to help me, but to help me empathize with others who would need my help later.
That was definately true when we thought we had lost Ky. So many sweet friends struggled with loss that year. I struggled with guilt, as I struggled to give love and support, not understanding all the why's, not yet understanding that it wasnt my job to understand, only to give what I could, which really wasnt much at all as far as I could tell.
I wonder if again, that this experience is not only for my good, but because this experience is going to be needed later. That as I will sit week after week, watching and listening to others around me, that there are things I am going to need to hear or say or know. It has been heavy on my heart and my mind.
The cute nurse I had finally came over and got things going. She poked and rubbed my arm for awhile before she had a good choice. She was pretty good, esp considering she used the smallest needle she was allowed and had to thread a tiny tube into the vein. She was able to secure it in place and got me going. Knowing my history of extreme reactions to things, the nurses kept pretty close tabs on me. The only snag we really hit was that it stung and that it caused my arm to go a bit numb. They re-positioned my arm, and piled on more blankets. That seemed to help alot. All the activities I had brought with me ended up staying in the bag because moving my arm caused it to hurt. I ended up trying to read a book, but really with not much success at that either. Will have to do some thinking about things I want to take with me next time - maybe music or movies or conference talks or something...
They kept an eye on me, checking my arm to make sure things were ok. That 90 minutes was a pretty long time to just sit and try to keep my composure, I was having a hard time. Once the iron was in me, I sat another little bit while the line was flushed with saline. Then we hit a couple more tiny snags. The first was the nurse trying to get me to bleed on purpose back through the line. It didnt cooperate though and she had to do some fancy tweaking to finally get it to draw the blood back out. She said it was really important that she could get me to bleed so that she could confirm that the line was where it should have been. The second snag was when we were all done and I was ready to roll. I felt light-headed and had a sudden headache. When the nurse checked my blood pressure again it had dropped 10 points. She was a bit concerned, but not overly so. She made me sit and drink some more juice and we took things slowly until I felt ready to go. I think she was most concerned with me being ok enough to drive home on my own. I did ok though, and thankfully things were mostly quiet here at home for the afternoon.
I would say that this first experience was a smashing success - esp considering how well I usually DON'T do with stuff like IV's, nurses, hospitals, etc. I cant say that I am looking forward to 5 more weeks of this, or the monster blood draw the week after I am done with treatments. I can say that I know that I will be in good hands and that the nurses will be wonderful, and the care I will be given will be more than enough to meet my needs for the next several weeks.
I can also say that I will be doing alot of thinking about things, and leaving things just open-ended to what I am supposed to learn from all of this. Not sure what that is yet, and maybe I wont for a really long time, but maybe there will be something, just have to be watching for it.
Just a PS about Colton. He has seen the pediatric pyschologist finally, and we are again in holding pattern until we get the results back. We will be 99.9% sure we will have a conclusive ADHD diagnosis from 3 sources now. He will have a speech eval coming up this week, and will be meeting another new medical specialist. Lots on our plate, but hoping with more conclusive results from specialists it will at last give us the "fire power" we need to get his IEP in a final stage to meet all of his educational needs, and be able to seek the rest of the specialists that are currently on hold. Will post more as I have news to share.
Yesterday morning I checked in at the Corvallis Clinic Oncology desk. There was lots of info to input and then I was taken back to the treatment area. The nurse assigned to me was great, really sweet, kind and patient. She went over some more paperwork and talked with me about the treatment stuff and then we got started.
Getting started for IV or blood draw anything usually requires extra work for the nurses. Since I dont have veins that tend to cooperate. The nurse piled on the wonderfully warm hospital blankets and then wrapped my arm in a hot, wet washcloth AND a heating pad to see if she could bring some veins to the surface we could work with.
In the process of me waiting, several other patients came in. I was about in tears as I listened to and watched one other patient in particular. She spoke about how happy she and her husband were to have a "break" from her chemo during the holidays so she could just enjoy things. The break seemed to have been too much on this end though as she shared how she had become physically sick just thinking about having to start treatments again. She was still strugging while there at the clinic. I watched the face of her sweet husband as he tried to keep a light sense of humor, but I could see the pain and sadness in his eyes as he watched her. I couldnt keep from crying myself. It broke my heart to listen to them, and gave me a great appreciation and a sense of awe for the sweet nurses who devote their lives to helping others in these circumstances.
Several other patients came in with concerns severe enough to require help from the nurses to administer meds/flush out pic-lines embedded in their chests. I couldnt even begin to imagine what struggles they and their families have experienced.
I was there for my own health deficiencies, but watching and listening to others I cried for the fact that even with my struggles, it wasnt nearly as much as these other patients had and were going through.
As I tried to tell Preston about my experience this morning, I cried again just describing things.
I often wonder at the lessons I am supposed to learn at times like these. I was there because my own health has been in jeopardy, and we are just now finding help that we hope will help on my own road to healing. Is my lesson to continue to learn patience, to continue to learn to endure "all that the Lord would see fit to inflict upon me", to learn gratitude for the experience and the chance to endure, or is the greatest lesson to learn one of empathy? Is it something else that I am missing altogether?
In the last 24 hrs I have reflected back on some of the most difficult experiences we have had. I remember the words of blessings that specifically told me that they were not to help me, but to help me empathize with others who would need my help later.
That was definately true when we thought we had lost Ky. So many sweet friends struggled with loss that year. I struggled with guilt, as I struggled to give love and support, not understanding all the why's, not yet understanding that it wasnt my job to understand, only to give what I could, which really wasnt much at all as far as I could tell.
I wonder if again, that this experience is not only for my good, but because this experience is going to be needed later. That as I will sit week after week, watching and listening to others around me, that there are things I am going to need to hear or say or know. It has been heavy on my heart and my mind.
The cute nurse I had finally came over and got things going. She poked and rubbed my arm for awhile before she had a good choice. She was pretty good, esp considering she used the smallest needle she was allowed and had to thread a tiny tube into the vein. She was able to secure it in place and got me going. Knowing my history of extreme reactions to things, the nurses kept pretty close tabs on me. The only snag we really hit was that it stung and that it caused my arm to go a bit numb. They re-positioned my arm, and piled on more blankets. That seemed to help alot. All the activities I had brought with me ended up staying in the bag because moving my arm caused it to hurt. I ended up trying to read a book, but really with not much success at that either. Will have to do some thinking about things I want to take with me next time - maybe music or movies or conference talks or something...
They kept an eye on me, checking my arm to make sure things were ok. That 90 minutes was a pretty long time to just sit and try to keep my composure, I was having a hard time. Once the iron was in me, I sat another little bit while the line was flushed with saline. Then we hit a couple more tiny snags. The first was the nurse trying to get me to bleed on purpose back through the line. It didnt cooperate though and she had to do some fancy tweaking to finally get it to draw the blood back out. She said it was really important that she could get me to bleed so that she could confirm that the line was where it should have been. The second snag was when we were all done and I was ready to roll. I felt light-headed and had a sudden headache. When the nurse checked my blood pressure again it had dropped 10 points. She was a bit concerned, but not overly so. She made me sit and drink some more juice and we took things slowly until I felt ready to go. I think she was most concerned with me being ok enough to drive home on my own. I did ok though, and thankfully things were mostly quiet here at home for the afternoon.
I would say that this first experience was a smashing success - esp considering how well I usually DON'T do with stuff like IV's, nurses, hospitals, etc. I cant say that I am looking forward to 5 more weeks of this, or the monster blood draw the week after I am done with treatments. I can say that I know that I will be in good hands and that the nurses will be wonderful, and the care I will be given will be more than enough to meet my needs for the next several weeks.
I can also say that I will be doing alot of thinking about things, and leaving things just open-ended to what I am supposed to learn from all of this. Not sure what that is yet, and maybe I wont for a really long time, but maybe there will be something, just have to be watching for it.
Just a PS about Colton. He has seen the pediatric pyschologist finally, and we are again in holding pattern until we get the results back. We will be 99.9% sure we will have a conclusive ADHD diagnosis from 3 sources now. He will have a speech eval coming up this week, and will be meeting another new medical specialist. Lots on our plate, but hoping with more conclusive results from specialists it will at last give us the "fire power" we need to get his IEP in a final stage to meet all of his educational needs, and be able to seek the rest of the specialists that are currently on hold. Will post more as I have news to share.
Friday, December 31, 2010
More Medical Updates
It has been a really crazy week here. We have had lots of challenges and some new info to update for me and Colton.
The beginning of the week started our family with the cold/flu thing that is currently circulating in our area. Caiden and Kels have both struggled with high fevers and Caiden has been very sick the whole week. Kaeli, Preston & I have also had varying symtoms, though not as extreme as the younger kiddos. Preston stocked up on all the med helps we could and added them back into storage. We are keeping our hopes up, that as school starts again next week, that it might miss the rest of the kids.
Yesterday, Colton & I both had extra appointments to see specialists. He did pretty well at OT and made some really good progress. Jeannie wanted to see if he could jump rope to practice strengthening some core and fine motor muscles. At first he didnt quite get it, but then it clicked. His face was beaming (and so was I) as he jumped 30x in a row! He has never been able to jump rope before. It was a great accomplishment for him. The extra large motor activity really helped him focus on his handwriting too. He also practiced tying his shoes again. This is a very difficult small muscle activity for him, and he got frustrated quickly. Jeanie is so patient with him though, and her encouragement and talking in funny voices (arnold swartz/rocky balboa/etc) kept the stress from gaining and he was able to get both shoes tied. This is an on-going trial for him, but he is making good progress one baby step at a time.
We will be in holding pattern now for awhile though. Jeanie has to send in a progress report to Dr Shawn and TRICARE to keep insurance coverage updated. I am hoping that things will go more smoothly this time, and we wont have to wait too long to get him back on her schedule. Last year we missed 2 whole months, and then some, because insurance stuff didnt fall into place well. He is doing so well, I am hoping we wont lose ground while we are waiting.
On a side note for Colton, I had a phone call from Dr Shawn yesterday too. He had finally been in contact with the psych specialist Preston & I visited with several weeks ago. We had a very long conversation about what she is recommending and what future concerns may be. One good thing will be that she is willing to finish Colton's evaluations and between her and Dr Shawn we will most likely confirm a diagnosis for ADHD. This will be one tiny piece we are working through right now, but it may be enough to take to the school to update his IEP again and get some more medical stuff attached to it. Things that should have been there since Sept...I am hoping that we can also get an outside speech eval done as well, so that we will also have that piece to take to the school. It has been very challenging and frustrating to have reports from specialists confirming what Colton needs, only to have the school IEP team totally dismiss all his reports. We have known for months that Colton needed updates and that there will be more in the future, and to have the school almost retain total power over his IEP and what they will/wont do. There is much that should be on his IEP that isnt yet, and I fear with our continued battle that we may not see it finally there until it is too late for this year to do any good. Thankfully, we have Dr Shawn and others who are willing to help us fight for what is best for Colton. We will be talking more with the new psych specialist and with Dr Shawn about seeking out a medical "case manager" that would help us better coordinate and seek out the appointments and help Colton needs, even with the school district. It is just brainstorming for now, but hopefully by Feb we may have some more pieces and people in place to help.
I also had another appt yesterday. I saw my sleep specialists and we talked for quite awhile about all the options out there. He still feels that we have not exhausted all the non-meds possibilities. He is referring me to a cognitive-behavioral sleep specialty team. They will help me be able to know/physically do things to help me get some kind of sleep pattern back in place. It will be more appts for me to travel to Corvallis, but hopefully will be successful. The other plan, for now, is for me to aid that process a bit until I can get those appointments going. I came home sporting some new "shop" glasses with amber colored lenses and some dissolvable melatonin tablets. The glasses help to block out all of the blue light waves, simulating late afternoon/evening light. Trying to tell my brain it is the end of the day and time to get ready to sleep. The melatonin, though in almost miniscule amounts, helps my brain to try to also go into sleep mode by helping what my body is not able to do for itself. I have to have both, starting at 5pm every night. Last night, I was zonked on the couch with Kels by 8pm. Not sure if it was the new stuff, not sleeping hardly at all during this whole last week, or a combo of both. The bummer was that I woke up long enough to have Preston put me to bed, and then lay there for IDK how long before I fell back asleep. I slept off and on for awhile, but finally was laying there with a headache long enough that I just got up.
I am going to try to keep some more consistent records to be able to take back to next dr appointments. Will just keep trying to move forward and try to be as patient as I can. Even though it seems like we are just spinning our wheels, we are knocking out major things and finding answers, even if they are the right ones yet. Maybe this year will help Colton & I both find more answers to help us regain some health and learn new things that will help us both better meet the challenges that are ahead. We both have lots of good people to help us, and that is one thing that can make all the difference.
The beginning of the week started our family with the cold/flu thing that is currently circulating in our area. Caiden and Kels have both struggled with high fevers and Caiden has been very sick the whole week. Kaeli, Preston & I have also had varying symtoms, though not as extreme as the younger kiddos. Preston stocked up on all the med helps we could and added them back into storage. We are keeping our hopes up, that as school starts again next week, that it might miss the rest of the kids.
Yesterday, Colton & I both had extra appointments to see specialists. He did pretty well at OT and made some really good progress. Jeannie wanted to see if he could jump rope to practice strengthening some core and fine motor muscles. At first he didnt quite get it, but then it clicked. His face was beaming (and so was I) as he jumped 30x in a row! He has never been able to jump rope before. It was a great accomplishment for him. The extra large motor activity really helped him focus on his handwriting too. He also practiced tying his shoes again. This is a very difficult small muscle activity for him, and he got frustrated quickly. Jeanie is so patient with him though, and her encouragement and talking in funny voices (arnold swartz/rocky balboa/etc) kept the stress from gaining and he was able to get both shoes tied. This is an on-going trial for him, but he is making good progress one baby step at a time.
We will be in holding pattern now for awhile though. Jeanie has to send in a progress report to Dr Shawn and TRICARE to keep insurance coverage updated. I am hoping that things will go more smoothly this time, and we wont have to wait too long to get him back on her schedule. Last year we missed 2 whole months, and then some, because insurance stuff didnt fall into place well. He is doing so well, I am hoping we wont lose ground while we are waiting.
On a side note for Colton, I had a phone call from Dr Shawn yesterday too. He had finally been in contact with the psych specialist Preston & I visited with several weeks ago. We had a very long conversation about what she is recommending and what future concerns may be. One good thing will be that she is willing to finish Colton's evaluations and between her and Dr Shawn we will most likely confirm a diagnosis for ADHD. This will be one tiny piece we are working through right now, but it may be enough to take to the school to update his IEP again and get some more medical stuff attached to it. Things that should have been there since Sept...I am hoping that we can also get an outside speech eval done as well, so that we will also have that piece to take to the school. It has been very challenging and frustrating to have reports from specialists confirming what Colton needs, only to have the school IEP team totally dismiss all his reports. We have known for months that Colton needed updates and that there will be more in the future, and to have the school almost retain total power over his IEP and what they will/wont do. There is much that should be on his IEP that isnt yet, and I fear with our continued battle that we may not see it finally there until it is too late for this year to do any good. Thankfully, we have Dr Shawn and others who are willing to help us fight for what is best for Colton. We will be talking more with the new psych specialist and with Dr Shawn about seeking out a medical "case manager" that would help us better coordinate and seek out the appointments and help Colton needs, even with the school district. It is just brainstorming for now, but hopefully by Feb we may have some more pieces and people in place to help.
I also had another appt yesterday. I saw my sleep specialists and we talked for quite awhile about all the options out there. He still feels that we have not exhausted all the non-meds possibilities. He is referring me to a cognitive-behavioral sleep specialty team. They will help me be able to know/physically do things to help me get some kind of sleep pattern back in place. It will be more appts for me to travel to Corvallis, but hopefully will be successful. The other plan, for now, is for me to aid that process a bit until I can get those appointments going. I came home sporting some new "shop" glasses with amber colored lenses and some dissolvable melatonin tablets. The glasses help to block out all of the blue light waves, simulating late afternoon/evening light. Trying to tell my brain it is the end of the day and time to get ready to sleep. The melatonin, though in almost miniscule amounts, helps my brain to try to also go into sleep mode by helping what my body is not able to do for itself. I have to have both, starting at 5pm every night. Last night, I was zonked on the couch with Kels by 8pm. Not sure if it was the new stuff, not sleeping hardly at all during this whole last week, or a combo of both. The bummer was that I woke up long enough to have Preston put me to bed, and then lay there for IDK how long before I fell back asleep. I slept off and on for awhile, but finally was laying there with a headache long enough that I just got up.
I am going to try to keep some more consistent records to be able to take back to next dr appointments. Will just keep trying to move forward and try to be as patient as I can. Even though it seems like we are just spinning our wheels, we are knocking out major things and finding answers, even if they are the right ones yet. Maybe this year will help Colton & I both find more answers to help us regain some health and learn new things that will help us both better meet the challenges that are ahead. We both have lots of good people to help us, and that is one thing that can make all the difference.
Tuesday, December 1, 2009
QUESTION: WHAT NOW?
Answer: I don't know....
After many sleepless nights filled with anxiety and dread my sleep study has come and gone.
I wish I could say things went well. The only thing that I guess went well enough was that we were able to rule out severe sleep apnea. I did have some slight breathing concerns, but not big enough to do anything about it. The other good thing was that I was again given the very kindest, nicest, sweetest nurses and technicians ever. That has been a true blessing each time I have needed to go to the hospital for anything.
I spent a mostly sleepless night at the sleep center. At least it felt that way to me. Their results actually clocked me with 6 hours of sleep. I cant even remember the last time I had that much sleep in one night. Even though those 6 hours were interrupted multiple times, it still left me with too much energy to complete the needed REM tests that they held me another 8 hours to do...and they ended up sending me home early with no further information to work with.
I am now just waiting for a phone call from the dr office to schedule a follow up appt. Not sure how far out that will be, or even if we get there, there will be anything that can really be done.
The disappointment was so overwhelming that I cried all the way home from the hospital. It is just one more, on the ever growing list, and I have lost the ability to hold back the tears.
At this point, we are right back to where we started. Still doing everything possible, but with no results and no answers. I really dont know what will come next....only the unknown.
After many sleepless nights filled with anxiety and dread my sleep study has come and gone.
I wish I could say things went well. The only thing that I guess went well enough was that we were able to rule out severe sleep apnea. I did have some slight breathing concerns, but not big enough to do anything about it. The other good thing was that I was again given the very kindest, nicest, sweetest nurses and technicians ever. That has been a true blessing each time I have needed to go to the hospital for anything.
I spent a mostly sleepless night at the sleep center. At least it felt that way to me. Their results actually clocked me with 6 hours of sleep. I cant even remember the last time I had that much sleep in one night. Even though those 6 hours were interrupted multiple times, it still left me with too much energy to complete the needed REM tests that they held me another 8 hours to do...and they ended up sending me home early with no further information to work with.
I am now just waiting for a phone call from the dr office to schedule a follow up appt. Not sure how far out that will be, or even if we get there, there will be anything that can really be done.
The disappointment was so overwhelming that I cried all the way home from the hospital. It is just one more, on the ever growing list, and I have lost the ability to hold back the tears.
At this point, we are right back to where we started. Still doing everything possible, but with no results and no answers. I really dont know what will come next....only the unknown.
Monday, August 24, 2009
TIME TO TAKE IT ON - AGAIN
Just a quick update about my current health. Many of your know that I have battled with kidney stones most of my life now....As of my last labs, my #'s for amounts of oxalates and other internal stuff have actually doubled. Today at my dr appt I had another x-ray where we found good news and not-so-good news. The good news is that the stone that was giving me grief just a few days ago is no longer there, and the right kidney is free from stones. The not-so-good news is that the left still has several large stones, that have moved around inside, and with stone recent activity, my dr has recommended just going in after them. I have surgery scheduled in just a few weeks.
I will continue to keep working on my current supplements and diet and after surgery may also look at another med to help reduce my calcium levels to prevent future stones.
At this point, I will just be in holding pattern until we get details for surgery. Will keep everyone posted as I find out more
I will continue to keep working on my current supplements and diet and after surgery may also look at another med to help reduce my calcium levels to prevent future stones.
At this point, I will just be in holding pattern until we get details for surgery. Will keep everyone posted as I find out more
Friday, July 10, 2009
Rory update
Anybody that hasn't heard about Rory's fight with myriad medical issues must have also sat in the back row at all their classes and been happy with a "D-" on the report card. START PAYING ATTENTION ALREADY.
This week she had another acupuncture session, which I'm sure she will write about when she comes out of shock. As that same appointment, however, her doctor did go over some lab results from some testing they did. Turns out that her Vitamin D level was OFF THE CHARTS. Off the BOTTOM of that chart, that is. This is a strong indicator of a reason for her depression, so we're hoping that the Vitamin D supplements she is starting will help her make the turn.
Another lab result was low selinium (or something like that) which is probably causing her sleep issues. All she has to do is figure out a way to stomach fish oil (remember "cod liver oil" from your parent's growing-up stories?) and oily Brazil nuts every day. If it helps her sleep through the night it's totally worth it. Maybe I can even include the nuts as a medical expense come tax time.
Thursday was also Kaeli's birthday, and she and Rory had been planning a trip to the coast for forever. Sounds like the weather was perfect, and they had a grand time. Watch for updates from her, hopefully to include some photos.
Today was also the ORCA lottery. For those who are only just now starting to pay attention, we've been trying to enroll the kids in a virtual public charter school (a home-based public school program). After weighing all the factors we decided as a family that this was our best choice because of all the awesome courses to choose from, and 99% of the negative stuff kids have to go through at regular public school would be avoided. Then we found out the state legislature was pushing a bill through to basically shut down virtual public charters. After many phone calls, emails, letters, and even a trip to the capitol building, the bill that was finally passed only limits the school's enrollment to the number enrolled at the end of last year. Still not great, but much better than what the teachers' union was asking for. Anyway, Oregon Connections Academy (ORCA) is limited to about 2600 kids for the upcoming school year, but only 500 of those would be available "slots" to new students (the rest are reserved for those returning from last year). Since they had about 1000 applications, they used a lottery system to determine who gets in. One good thing: if a child was selected in the lottery, all his/her siblings would automatically be enrolled too. Well, I got an email saying that WE WON THE LOTTERY. School starts August 27 right here in our kitchen.
I'm still hopeful we can be on the road Saturday headed toward Utah. It's going to be a long day Friday to get everything packed, bulletins printed, Sunday meeting agendas prepared, work wrapped up, etc. Wish us luck!
Preston
This week she had another acupuncture session, which I'm sure she will write about when she comes out of shock. As that same appointment, however, her doctor did go over some lab results from some testing they did. Turns out that her Vitamin D level was OFF THE CHARTS. Off the BOTTOM of that chart, that is. This is a strong indicator of a reason for her depression, so we're hoping that the Vitamin D supplements she is starting will help her make the turn.
Another lab result was low selinium (or something like that) which is probably causing her sleep issues. All she has to do is figure out a way to stomach fish oil (remember "cod liver oil" from your parent's growing-up stories?) and oily Brazil nuts every day. If it helps her sleep through the night it's totally worth it. Maybe I can even include the nuts as a medical expense come tax time.
Thursday was also Kaeli's birthday, and she and Rory had been planning a trip to the coast for forever. Sounds like the weather was perfect, and they had a grand time. Watch for updates from her, hopefully to include some photos.
Today was also the ORCA lottery. For those who are only just now starting to pay attention, we've been trying to enroll the kids in a virtual public charter school (a home-based public school program). After weighing all the factors we decided as a family that this was our best choice because of all the awesome courses to choose from, and 99% of the negative stuff kids have to go through at regular public school would be avoided. Then we found out the state legislature was pushing a bill through to basically shut down virtual public charters. After many phone calls, emails, letters, and even a trip to the capitol building, the bill that was finally passed only limits the school's enrollment to the number enrolled at the end of last year. Still not great, but much better than what the teachers' union was asking for. Anyway, Oregon Connections Academy (ORCA) is limited to about 2600 kids for the upcoming school year, but only 500 of those would be available "slots" to new students (the rest are reserved for those returning from last year). Since they had about 1000 applications, they used a lottery system to determine who gets in. One good thing: if a child was selected in the lottery, all his/her siblings would automatically be enrolled too. Well, I got an email saying that WE WON THE LOTTERY. School starts August 27 right here in our kitchen.
I'm still hopeful we can be on the road Saturday headed toward Utah. It's going to be a long day Friday to get everything packed, bulletins printed, Sunday meeting agendas prepared, work wrapped up, etc. Wish us luck!
Preston
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