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.
Monday, January 24, 2011
Right now I am sitting at the hospital in my daughter's room. Megan was at the movie with a friend when she called and said she was coming home to get our insurance cards. She had a severe pain in her back and it was starting to hurt up to her shoulder. She and her friend went to the ER around 8 and at 11 PM, she called us to tell us that they were transporting her to the main hospital. I was already in "bed" and doing my late night posting on SP--I got dressed quickly and my husband and I got to the hospital before the ambulance had even left with her. It turns out that she has a blood clot in her lung. I know little about this (yet) but it is pretty serious. She has been poked and prodded. They are giving her injections that according to the nurse cost "thousands and thousands" of dollars--they are some kind of blood thinners and she will be on them and medicine for some time to come. Right now they have her on oxygen and a heart monitor and are trying to get to the bottom of everything.
Miles had a nice birthday on Saturday. Several of the kids ended up going out, so we didn't have birthday cake until Sunday (before the hospital issue came up.) I had a small piece before I looked up the Weight Watchers points on a 3" square piece of iced cake--9, holy cow. Oh well, I don't eat such stuff often--and I didn't even eat the entire piece, so it was okay.
I am going to attend to my daughter now--even at 22, she is still my baby.
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