Tuesday, February 01, 2011
Good morning friends!!
I cannot believe it is already Tuesday and that I am up now, writing my blog. However, things will fall into place quite soon as I tell my story of the past couple of days.
Sunday was our annual meeting at church and it was quite long. Our church is in pretty good shape given the size of our active congregation and the average age of people who attend regularly. However, I worry and wonder what we are going to do to keep everything in that magnificent building in tip top shape as things like tuck pointing are becoming needed. That is a big, expensive job. I trust that we can take care of things as did generations before us and the people who sacrificed to build something that beautiful during their own tough financial times.
I got to get to the pool for the first time since Megan became sick on Sunday and my body found it to be heaven even though my pleasure was diminished by all of the kids there doing a bit of everything with the regular less than active Sunday lifeguard int he place. That girl really bugs me because she doesn't even put on the facade of doing her job anymore. Repeated talks with management haven't gotten me anywhere either, so I know it is time to put some of it in writing. I'll add that to my list of things to do in my "spare time."
Monday was my first full day back at work and I logged over 18,000 steps on my pedometer. I was all over the place getting in good lessons with all ofmy kids and a lot of work on the computers. I also had two parent activities last night and in spite of the weather, I had one family show up for the early one and one family for the late one. I left work around 7:15 and the snow was pretty tough to drive in at that point in time.
The alarming thing was what started happening on the way home. My lower back on the right side--not the left as usual, started in with these frequent spasms that made it hurt to breathe. I tried to eat dinner when I got home but the pain was too sickening for eating. I took my pain meds and finally they put me to sleep. I feel concerned to have something different going on than I am used to. It is a good thing that I have that appointment with my back doctor today, maybe he will have something to say. If not, I will find a new doctor this afternoon. My appointment with him will be followed by physical therapy on my shoulder and then another doctor's appointment. My therapist was booked solid for the entire month, so he added in some time slots late int he day for me. That is a thoughtful guy, especially since I am muddling through so much right now.
Finally, we have some word back on Megan and I now have some more to consider. My doctor was very good with her and is doing her follow up care. Her INR was up to 2.8 yesterday, yay!! That means she no longer has to take the injections and now she can get into the routine of taking the Coumadin and having her bi-weekly labs done. The scary news is that the report from the geneticist is back and it turns out that this was caused by a marker on an alele (on one of her chromasomes.) The report indicates that all of our other children have a 1 in 2 chance of carrying the same condition and that Megan may have difficulties during the third trimester if she were to become pregnant. I have to follow up on all of this and have the other kids tested and it is particularly a worry for Marissa as well. I don't know if anything preventative can be done about it, but it is a tough bit of medicine to swallow right now as I figure out what needs to be done next. All I can do is give thanks that Megan got medical care at the right time and that all of the other pieces fell into place. A true tragedy was averted and the rest of this is going to fall into place as well. That genetics report was a bit of strange reading, apparently 3-5% of the population carries this genetic issue and it is typically found in Caucasians of Scandinavian descent.
With the snow that came down and was coming down when I fell asleep and out forecast of up to 16 inches the last I heard, the real Tuesday could be very different than I am thinking it will be like. the bulk of this snow isn't supposed to come until this afternoon, so I hope my appointments will not be lost. I have one more to make--my darling 12 year old son got a referral at school yesterday for giving someone the finger (another student.) I know it is wrong and have handled it as such--but given the fact that he has never done such a thing and has 7 older brothers and sisters to share such naughty behavior with him, I'm thinking it is the least of my worries. However, the principal needs to talk to me and talk we shall. I'm thinking that this must go into the "boys will be boys" and even more the "adolescents will be adolescents" category and as soon as the conversation is over and he does a little pennace around here, it is over.
Saturday, January 29, 2011
When I left the hospital to go to work yesterday at 11:15, they had told us Megan would be there for the weekend. Then, the insurance company became involved. When I got to her room and against what the doctor wanted, he told us that if her INR continued to increase on Saturday, the way it had on Friday (it was up to 1.4 from 1.1 the previous day) that she could go home. An hour later, the doctor was discharging her against his will. The insurance company made it happen.
She wanted to come home and I wanted her to come home, so this seems like a perfect intervention, right? Almost. I am now worrying myself sick because the doctor really didn't want this. That puts the burden of her care on us and I am fearful of any repeat blood clots. They can be fatal and this is a big deal. The insurance company simply didn't want to pay for the care anymore. I am not sure that they should be able to dictate what the doctor chooses for a patient, as a matter of fact, I am sure that they should not be able to do so. They don't know a particular patient the same way the attending doctor does.
All of that aside, she is home and got to have one of her favorite meals to start with. (Chicken-rice taco dinner that she has always loved.) She got to lie on our couch and use our bathroom and take her meds when she was ready. This was such a good thing for her that I hesitate to fuss about how she got home. The medication thing was solved by our regular pharmacy. The hospital staff called them and got them to run her Lovenox prescription on thursday and they got the medication in to cover her needs. Again, the insurance company had to approve it, but they did. (I think that was easier than keeping her in the hospital.)
She is making plans to get back to her life. I am hovering to keep her at a reduced level of activity as she recuperates. She has an appointment with my doctor on Monday for follow-up care and I am glad for that. We had gotten her in to be cared for by the new staff member, their nurse practitioner, but this is a far better way to handle this. She can see her for routine things, but seeing the doctor for this "acute pulmonary embolism" gives me a bit of freedom from worry about how her care is managed because I know how this doctor has cared for me during times of present and looming disaster (my spine infection and when I was diagnosed with heart failure) and I know that he will look at every meticulous detail in every way needed. She is int he hands of the "A-Team" now. I also know that the insurance company won't bully my doctor around.
So for the moment, as she is sleeps, I don't have to worry. She has a sub at her job at the fitness center today and I get to look after her.
And, I can catch my breath a bit as we wait for Marissa to return from all-state today. She will return like a bull in a china shop because that is how our 15 year old is.
And I will rejoice to have everyone around!
Friday, January 28, 2011
Hello Spark Friends
This week has been one of complete unpredictability and it seems as if it will continue this way. After waiting for Megan's updated INR, it turned out to have moved from 1 to 1.0 to (drum roll) 1.1--and they want it at 3 for her to be able to be discharged. They increased her Coumadin dose again yesterday but also told us that they are now expecting her to be in the hospital through the weekend because this rate is not increasing adequately. Coumadin (warfarin) is a particularly powerful and interesting drug that got its start as rat poison. I am curious how the researcher connected it to being such an important medical tool in treating major life-threatening conditions.
I am planning to go to work this afternoon so I can see my afternoon students, some who I have only seen once or twice this week to switch out books and to take notes home about my book study for their parents on Monday. I really need to stick to my schedule because I have everything for my National Boards choreographed so I can complete my work on time. If I need to cancel or change things, it will be like knocking down bowling pins and I am not sure I have the energy to rework everything around other activities at school and the like.
I have my own medical things coming in the next two weeks as well that include my appointment with my back doc and my coming stress test to prove that my heart is in good shape. These are very important events in the life of my better health and will both take me away from work for a half a day. It is a good thing that I have been frugal with my sick leave after getting my time back with the new school year. It's a better thing that except for my typical orthopedic issues, I have been so healthy this year.
Anyway, it is good to have a weekend approaching after this week packed with stress and worry. We understand how things need to go for us to have some calm restored to our family life again. Marissa left for all-state on Wednesday and will be back on Saturday. I'm not sure that she got the fanfare she deserved for her accomplishment given Megan's illness--but I am equally sure that she will be full of energy and stories when she returns, so we will get to celebrate her success then. We also have Micah's birthday next week as he officially becomes a teen ager. This just doesn't seem right or possible, but he has been changing in all of the ways that children change as adolescence strikes. He still wants toys for his birthday gifts, so I have my little boy for at least a little while longer.
The nurse just came in, which puts me in position for asking questions here. Thanks to each of your for the support and prayers during this very tricky time. Our children are supposed to stay healthy and young people are not supposed to have embolisms. It just goes to show how unpredictable life really can be.
Thursday, January 27, 2011
Hello Spark Friends
Ok, I'm officially embarrassed--no ashamed of myself. I fell asleep for a couple of hours while I was at the hospital tonight. I am so surprised at myself. Megan had a friend visiting and I moved out of the way and I sat back in the recliner and woke up a couple of hours later. It has been a long few days and I have been sick with a head cold which is moving into my chest. I think I reached a point that my body was going to sleep one way or another.
As a matter of fact, my life and needs have gone by the wayside as I have been mom and teacher this week and have scurried to do my two important jobs at the level I do them at--something has had to give. I haven't been to the pool and I haven't had much "leisure" time. I went to the hospital this morning so I could be there for the doctors. The good news is that they have let me take Megan into the hallways for a walk today. The bad news is that her all-important INR level "changed" from 1 to 1.0 (???) It has to get up to a 3 for her to be able to leave the hospital, so they increased the Coumadin today.
I went to school for the late morning and early afternoon. I actually had time to touch base with all of the teachers who have students I work with and I also touched base with each of the 55 kids I see. I did an update with some of them, collected RSVPs for the parent training I am doing next Monday, and helped them to switch out their take-home books. My older kids all got to use the computers--and I actually got those frustrating machines to work!! YAY. I got in one Reading Recovery lesson as well. Then, I attended the kindergarten and primary team meetings before leaving back for the hospital.
I had a doctor's appointment with my therapist at 4:45, so I left long enough to go there--I was out of appointments with him and he is booked up until the middle of March, so he created some later appointments when he normally isn't int he office for me. I went back and Megan was having dinner and her friend was there--and that is when I went over to the out of the way seat--and fell asleep. Arghhhh, that seems like something my husband might do, but not me.
I also have been making my physical therapy appointments. The PTs are so happy with my shoulder--I'm ahead of schedule for my ability to flex and move. My strength is starting to come back. That seems weird because the only wayI can raise my arm is to do it with my left hand, but they are pleased, so I will be too. I saw my ortho on Monday and he was pleased as well. I also had a heart to heart with him about my back and the things that my neurodoc has told me. I asked him for his professional suggestion on how to handle the neurodoc--this guy zooms out of the room and it is hard to have any conversations with him. The last time I saw him, he gave me the results of some labs and dismissed me saying "There is nothing surgical I can do for you." I explained to my ortho that I wasn't looking for surgical, but that I believed that my back could and should be better, that it shouldn't require for me to hold on to something after I take 8 steps or that I should be able to stand for 3 minutes in therapy and move the ball without my back giving out. He helped me to determine that we should try the neurodoc one more time (they share the office complex) since he has operated on me and knows my anatomy. Then he listed off the names of several of his colleagues and asked me if I had ever seen them. I told him that I hadn't, so he responded by telling me that after I see the other guy that if I don't get a response that I am comfortable with to call him and he will get me an appointment with somebody else.
That seems like a good plan to me--and then, he actually got me a February 1 appointment with the neurodoc--next week. It is unheard of to get in so quickly. I am guessing that he is going to give this guy a head's up that I am in need, so I am going to pray that there is a new plan. I am thinking maybe physical therapy on land to build my strength. The PT thought injections of some kind might help--I'm a bit nervous about that idea, but relief and possibly getting rid of my walker might be the result, so I'll even go there if need be.
We shall see.
It has been a long day and a long week.
I am going to work tomorrow--my husband is going to stay home. I don't know if it will be all day or half a day, because Megan needs me to be there for her. I will figure out the details.
I also have ot have another round with the hospital and the insurance company about Megan's injections. She will need to take them for several more days when she gets to come home. These things cost "thousands and thousands" of dollars apiece. The issue isn't even if the insurance company will let us get them at a rate we can manage--I set that up today. The issue now is that the insurance company wants us to order them at their specialty medication site which means they have to mail the meds--and the hospital won't call inthe prescription ahead of time so we can have them in hand when Megan gets to come home. I cannot make sense out of this--and apparently if we have to get them from a local pharmacy, they will be applied to our deductible and will cost us at least $500 apiece. We don't have that kind of money. I have to force the hospital to do this right. Megan has to have this medication and they need to make it accessible to us. If they need this battle, they will have it and this prescription needs to be called in tomorrow so it will be here by Friday or Saturday (if her INR is up high enough so she can come home by then.)
I have a lot of important work in both of my important jobs. I will be hard at it tomorrow!! We shall see!
Tuesday, January 25, 2011
Standing (or sitting) at someone's bedside is a different kind of work than I am used to--I have so often been the patient. However, what I know from my experience being a patient has helped me to help my daughter to get better information and care. She is coming along, but may be here up to 4 more days. She had a bloody nose this morning that precipitated them removing the oxygen. With all of the blood thinners, anything that might cause a bit of bleeding isn't a great idea. Her oxygen levels have been okay, so yay. She gave herself the shot this morning, so she is ready to do her own when she gets home. She started on Coumadin last night and that is now the big thing. She has to have a high enough level to leave the hospital. That is what we will wait for. They have done a lot of lab work and they are trying to eke out what the cause of this embolism is. They check young people for genetic markers and that is important to our other 7 kids.
As for me, I got my website officially published yesterday and today I completed the other two pages from the drafts that I had them in. I still need to add photos, but until I am back at work and can take some, it is just the templates. The information is good and is the result of a lot of work over the weekend in particular and my own frustration in learning the "how to" stuff. Here is the URL, if you would like to take a look:
This is the main or "about page." On the right is a menu and you can see other pages and the "posts" that are less permanent, more newsy items. They switched from the former format I understood and had a great page to this word press format. I had to learn about it and how to get my information on there, with a lot of weird glitches with the technology in my classroom.
Anyway, it is finally at least up in published format. I went for help on this in November, so it is an accomplishment for me.
That's about it for now--I am going to leave the hospital to go to physical therapy for a short break. I'll get some other exercise in besides walking then. I haven't been to the pool since Sunday, but these hallways make a kind of walking track away from the cold.
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