Five Minute Friday

Five Minute Friday – Surprise

Back again to join Five Minute Friday this week.  Each week I can’t decide if it feels like it has been forever since the last FMF or if it feels like I just wrote it yesterday.  This is another one of those weeks.  But, such is life.  This week’s prompt is “surprise!”

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Surprise!  Usually it is something we think of as enjoyable.  But, there are also those unwelcome surprises.  And that is what we got this week.  We went to the hospital as planned, after two enjoyable days in Monterey, expecting a pre-op appointment for my DD’s pacemaker placement.  When we arrived, the woman at the desk asked if I had received the message the day before and when I checked my phone, there it was.  A voicemail from our transplant doctor saying there had been a change in plans and to call him.  I had not received it because we were at the aquarium, then my phone died from all the picture taking and I didn’t check my voicemail that evening.  So, there we were, at an appointment that no longer existed.  Surprise!

They called the transplant doctor and he came to speak with us.  It seems that my DD has only one access point for doing biopsies (I knew this before, but had forgotten) and the pacemaker team had not been told that. Surprise! So, their plan was to put the wires through the only access point she has for biopsies.  Not a great plan.  So, they cancelled the planned procedure and scheduled a different procedure.  This one will require an actual incision in her chest again. Surprise!  Hopefully, it will be done without actually opening her sternum again (requiring an unwiring and rewiring) and just going in under the sternum and running the wire between her rib bones.  They will look at that to make sure that is what they can do.  She will also have another incision where the battery pack will sit – a “pocket” in her abdomen.  Hopefully there will be no chest tube (again, not sure about that) and there will be a night in the CVICU and then to the step down floor for three to six days depending on how she does.  My usual reaction is to say to plan for three additional days because she can be a tough patient in recovery, or at least has been in the past.  Hopefully she has outgrown it, and I will get a good “surprise”.  But, we shall see.

So, that was our “surprise” this week – one night in the hospital has turned into four to seven and we’ve postponed it until the end of April to allow for our work schedules to be a little more forgiving.  But, not all surprises are good, but they are all…well, surprising!

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Join us for Five Minute Friday this week – link at the top!

 

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Five Minute Friday

Five Minute Friday – Same

I’m back after some time away (which will be explained in today’s Five Minute Friday post) and ready to spend five minutes writing.

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This week’s prompt is “same”…

Things are constantly changing, but they are also always staying the same in many ways.  This past few days we revisited a place where we have spent a lot of time and although we’ve changed dramatically, that place remains mostly the same.  That place is the Children’s Hospital where my daughter had her transplant.  We haven’t been there overnight for over three years, but a hospital room and hospital life is nothing if not the “same”.  I’m happy to say we are back home, but realistically looking forward to additional stays some time in the future.  We have friends who were there with us when my DD got her transplant and they are back for an entire YEAR – not IN the hospital, but staying at RMH and often in-patient for a few days at a time for cancer treatments.  I guess, in some ways, that sameness is a sense of comfort.  The fact that I knew where to go to get sheets and blankets and extra pillows and how to order food for my DD and where to go get food when the Children’s Hospital cafeteria was closed one night and to expect nurses in and out of the room throughout the night to do vitals is all a source of comfort where others would have a lot of anxiety.  So, in that way, the fact that the hospital is the same is comforting.  And I’m thankful for that.  But, it is also frustrating to get woke up every day at 6:30 a.m. to get weighed (really?  they can’t do a weight AFTER shift change in the morning?) and to always have the same menu to look at for food (but, at least it isn’t just some random meal dropped off to you that your kid will never eat, so that part is good).  Always the same beeping of the machines (although thankful we didn’t have to deal with any IV poles or IV fluids this time).  Always the same “hurry up and wait” for news or tests or results.

The hospital is much the same despite the new curtains in the rooms and the new little carts to tote kids around the hospital.  And for that, I am pretty thankful.  Being in the hospital is stressful enough, no need to figure out “new” things while dealing with that.

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That’s it.  Join us over at Kate Montaug for this week’s Five Minute write.  More on the hospital front in a coming blog post.

Tuesday Truth

Tuesday Truth

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Well, today’s primary Tuesday Truths are all about sickness and hospitals.

First, it sucks to be sick.  I have some thing going on with my throat that has caused laryngitis and coughing and just misery in general.  Coughing makes me tired and relatively sleepless and laryngitis makes it difficult to teach and talk on the phone or talk to people in your house.  Basically, anything.  So, yeah – that’s where that’s at.  Hopefully my voice will soon return to full strength and this cough takes a hike.

Second, hospitals are exhausting.  I spent all day yesterday in the hospital for my DD’s annual heart biopsy.  She did relatively well, but it is still a long, long day.  We arrived at 7:30 a.m. and didn’t leave until 3:30 p.m. and in between we dealt with pre-op upset, post-op upset and just general frustration on hers and our part.  Trying to keep a six year old laying completely flat for four hours is a bit ridiculous if you ask me, but it is what they want us to do to keep her from bleeding at the access sites.  And she gets super frustrated and we get super frustrated and at some point, I just kind of give up and hope for the best.  Everything went okay.  The sites look fine today.  So, I think we did a good enough job.  Her rejection level was 1A which is a bit of a disappointment after the last few zeroes, but the NP says that is basically the same as a zero (which is obviously not true or they wouldn’t have a zero and a 1A), but we’ll take it.  It means no steroid treatment or change in meds.  So, we’re good.  Everything else looked good as well.  So, hopefully another year before we have to go through that again.

Third, having a sick, aging parent on hospice sucks.  My mom was here all weekend and she was considerably weaker than the prior weekend (just four days later).  And since she went home on Sunday she has gotten progressively worse.  Yesterday she didn’t really get out of bed.  My sister went down there today and says she is not making a lot of sense and seems very disoriented.  She is weak and now they want to get her a hospital bed.  Her caregiver seems to be a little low on the caregiving department since she says she can’t help her get into bed, which I was able to do this weekend.  So, now we may have to look for someone else OR we just need to convince my mom to go into assisted living, which she will hate, but which will probably be good for her.  I’m exhausted after taking care of her the last two weekends not because of having to help her move around, but more because of her emotional state.  I was also getting sick, so I didn’t feel good this weekend, and I think it all caught up to me this week.  Hence, my loss of voice.

So, that’s it – my Tuesday Truths.  Not much positive here, I know.  Its been a rough weekend.  And it has continued into the week.  But, I’m hoping things start to look up.  Maybe my voice will come back, hopefully this weekend will be without a hospital visit AND my mom will get what she needs and be more comfortable.  And, I hope to get some sleep.  And, get some grading done.  And, finish cleaning/organizing my house.  And, go to the fair.  And, read some books.  And, just R-E-L-A-X.  Yeah, right.  What about you?  What’s your Tuesday Truth?

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Weirdness and Worry: My Monday Madness

I can’t think of better words to describe my Monday to you.  Weirdness and Worry.  And lots of it.  I’m not sure how much detail to provide, but here is a tweet that covers half the day and you can decide whether you want to read the in-depth description from there.

And yes, that was only half the day.  The other half, which is bleeding into Tuesday is my mom’s been in the Emergency Room since around 7 p.m. (it is now 11:40 p.m.).  She has had recurring pain that sounds like gall stones to me, but they are waiting for blood results and a CAT scan to come back as she also has cancerous lesions on her liver they are managing with medication (after many chemo and even radiation treatments) and some history of kidney problems.  So, I’m waiting to hear what they find and making plans to have to miss work and basically upend my life for a while if she goes in the hospital for any amount of time.

But, I skipped the first part of the day…

Today was my DD’s 50th day of Kindergarten, so they had 50s day and I went to help out with their fun activities that they had planned (progressive party where kids went to each of five Kinder/1st grade rooms and did a fun project there for 30 minutes before moving to the next classroom).  My DD had a substitute (that was planned and I was asked to stay a bit longer today to help through lunch with the activities).  All started out relatively normally.  My DD dressed up:

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I came at 8:30 to help out.  The first group of students lined up to depart the room to go to the other rooms and that is when I saw the police car across the street from campus, lights flashing.  But, it looked like a traffic stop, so I didn’t think much about it.  The group of students left (my DD’s group stayed in our classroom, thankfully – God was looking out for her I think) and some others arrived from the other classes and we started the craft…and then the loud speaker buzzed and the principal’s voice came over and said we were on a “Code Red” and needed to lock all doors and remain in our rooms until further notice.  In this day of school shootings what seems like every week, this is not a pleasant feeling.  The students were fine.  I don’t even think they noticed at first.  But, the substitute was, of course, a bit anxious and needed to look for the information on what a Code Red was and what to do.  We were supposed to close the curtains, but there were no curtains on the window and the police car was right out there.  Police officer with gloves on, going through a vehicle across the street from the school.

So, time marches on and after what feels like forever (but really only about 45 minutes) my DD says she needs to go to the bathroom.  Now, she takes Lasix in the morning, which is a diuretic and about an hour to an hour and a half after she takes it, she doesn’t just have to pee, she has to pee a river.  So, I knew this wasn’t good.  She held it for a while.  Probably another 20 minutes or so, but then she just couldn’t hold it any longer and she peed all over a chair and the floor and her legs and her cute 50s dress.  The other students were listening to a story being read, so most of them didn’t take notice really.  I cleaned it up with Lysol wipes and had her clean herself up as much as possible, but she was crying and I felt horrible and there was no. where. to. go.  Luckily, the code was lifted within 5-10 minutes and I was able to run her home, get her a change of clothes and head back to school before their snack/recess ended.  The sub asked me to stay since they were going to try to finish up some of the other activities before and after lunch and there was a Sock Hop/Root Beer Float party in the multi-purpose room for the last 1/2 hour of school planned.  So, I stayed.  After lunch, my DD informed me she had had another accident.  This is  a big red flag for a UTI, which she has had six of in the last year.  She was very upset at the prospect of going home to change and missing the sock hop, so I texted my husband and had him bring her a change of clothes and we were able to get her changed and back in time for the sock hop.  I then helped make and serve 100 mini rootbeer floats to Kinder and 1st graders.  The whole day was exhausting.

But, it was not over.  I had had my husband call the pede to get an appointment and we went there an hour after school.  It took a while for DD to pee again, but sure enough there was “a lot” of blood in the urine and it was positive for bacteria.  It will be cultured, but they started her on antibiotics again (she just came off of them for the same reason a week ago).   Tonight was pretty rough on her.  Pain while urinating, blood in the urine, frequent feelings of needing to urinate an accident or two more.  I feel bad for her.  She is asleep now and has only woke up once, so I’m hoping the medicine kicks it quickly (it usually does) and she feels better tomorrow.

So, yeah – that was my Monday.  I’m still waiting to hear from my sister as to whether they are admitting my mom or what is going on.  I would not be surprised if they did admit her.  She had to have two IV bags of fluids (I ask her about her fluid intake all the time, but she always says she drinks “a lot”) and they had given her morphine for the pain earlier but it had worn off and she sounded miserable.  My sister was also exhausted.  I have to figure out plan B for my classes if I have to take off unexpectedly in the next week or so.  I need to get caught up on grading so it is done and i don’t have that hanging over my head.  It is now 12:20 a.m. on Tuesday and I teach at 8 a.m.  I still have quite a bit of grading to do and I’m not really prepped for tomorrow’s class (all things I planned on doing today after I helped out in DD’s class).  I am starting to feel that familiar overwhelm of doom…its been months since I’ve felt it.  Since my dad passed last January probably.  But, here it is again.

I’m hoping that it turns out to be something they can easily treat with my mom.  I’m also hoping that DD gets over this UTI quickly and keeps them away.  I’m also hoping that I can hold this all together for a couple of more months and Winter break is here and I can relax a bit.  But, who knows if ANY of those things will actually come to fruition.  Right now, I probably just need to sleep for a few hours.  Maybe get up at 5:00 and grade for two hours before work.  I am always more productive in the morning than at night.  And sleep…it is overrated.  And underachieved.

How was your Monday?