Life never gets boring

Jess and the girls were home Wednesday.  I drove the car to work so that could get home quick after.  When got to the car I saw that the driver's side window was busted and some one had stolen our GPS.  So instead of getting home quick, was late because had to clean up glass from the car.  I cleaned up enough to drive home and help put the kids to bed.  I then cleaned up the rest. A shattered window makes a big mess.

I called the insurance company and they got us in touch with a glass place.  Unfortunately they weren't able to come on Thursday so we have to wait until Friday to get the window replaced.  Sarah's appointment is on Friday morning so we had to go and rent a car.  Luckily there is a Hertz place right around the corner.

When I came home from work on Thursday, Jess wanted to take Lilly to the urgent care.  She has had a fever on and off all day.  So after dinner, I got Sarah and Gus to bed while Jess took Lilly to the clinic.  Lilly has a double ear infection.  She got some medicine and hopefully by Sunday our family will be mostly healthy.

Sarah's will start her next round of treatment on Friday, if her ANC is above 750.  We don't think that will be the case since she was barely over 300 on Tuesday morning, but we will see what tomorrow brings.

Thanks for all the love and support.

Home Again, For Now

So Jess took Lilly and Gus to the doctor this morning because Lilly's cough still hasn't improved much.  The doctor thought it was pneumonia and ordered a chest x-ray.  The x-ray showed that it wasn't pneumonia yet, so she isn't on antibiotics, but she might be heading that way.  It is possible that this is still just the virus that Lilly is fighting.  Gus was fine and has gotten over most of his cough.

Sarah has been developing a cough over the past few days and has gotten worse today.  I asked when the doctor's rounded today, and they said to watch it.  Her chest sounded good so they weren't too worried.

Sarah finished up her last treatment around 6pm.  We packed up and headed home.  Another round in the hospital wrapped up.  Sarah has gotten really good at letting the medical people do stuff to her.  The nurse who de-accessed her said that Sarah was the best patient she has ever seen for de-accessing a port.  She is a good kid and tries to be patient and follow what is being said.

So for the next few days our house is a sick bed.  Hopefully kids will all get better and we can go back to our normal lives, except I don't remember what normal is anymore.....

Thanks for all the love and support.  We feel it and it strengthens us.

Monday, April 23

A short post today.

Sarah had a good day today.  She is getting better at her treatments.  She has gotten a cough today that makes me worry a little.  Hopefully it doesn't become much more than that.  We should be getting out of the hospital tomorrow evening after her afternoon treatment.  It will be nice to be home.

Thanks for all the support that you have given my family.  We feel it and appreciate it.

Sunday, April 22, 2012

Sunday was a quiet day.  Sarah did pretty well today.  She is starting to show similar mood swings to when she is on her steroids.  She is getting albuterol 3 times a day, so I guess it isn't too surprising.  For lunch, she got a cheeseburger, and found out that they had pickles, so we had the nurse get some brought up for a snack.

Sarah eating a pickle

Jess came to drop stuff by and didn't make until after Sarah's treatment had started.  Sarah was sad that Mom wasn't able to come in the room, but it is better that way, since Jess is taking care of Gus.  She is planning on coming and spending some time tomorrow evening.

We had a visit from our home teachers this evening as well.  It was fun to see them.  Sarah knows who they are and likes when the come over as well.

Thanks for all the love, support and prayers.  It helps keep our spirits up.

A family trip to the hospital

Today was a long day.  Lilly's cough got worse this morning and Jess figured it was time to get her seen.  Since I was already at the hospital, Jess decided to try out the urgent care clinic here. She brought Gus and Lilly and arrived around noon.  In the rush to get out of the door, Jess had forgotten the diaper bag for Gus.  Not having diapers was something we could work around but it also contained his lunch and toys to play with.  I helped by going back and forth between Sarah's room and the clinic to help with Gus.  It ended up being 4+ hours for Lilly to get through her appointment.  The doctors thought it was asthma causing her coughs and wheezing.  They gave her albuterol and some steroids but she didn't improve as quickly as they liked so they kept her longer to watch her.  This caused a lot of frustration, because Gus was ready for a nap and didn't want to be there.  Toward the end of the appointment, I made arrangements to be with Lilly, while Jess took Gus home.  As luck would have it, before Jess got home, Lilly was done and Jess had to turn around to come and get her.  Frustrating to say the least.  We made it through and hopefully Lilly has turned the corner and won't be as bad tomorrow.

Gus and his smile.  He liked the noise of the camera, so I got a bunch of these shots.

A laugh

Lilly playing on the white board, waiting

When I got back with Sarah, she was midway through one of her treatments and the DVD had made it back to the menu, and she was crying.  I was able to calm her and we got through the treatment.  We have a total of 15 treatments to do, and we are through 6 of them.  That puts us here through Tuesday evening if my calculations are correct.

Sarah has added stickers to the inside of her tent.  We brought some McDonald's toys to play with in the tent.  Once I told her that we wouldn't take them home after she played with them under the tent, she refused to play with them when she was in the tent.  She wants to keep them, even though she has duplicates at home.  Crazy kid. 

We are grateful for all the love and support for our family.  Thank you.

RSV Day 2

Sarah catching a nap the first day in the hospital

So today was a day where we got to know the routine for the treatment for RSV.  The process was a little different from what I thought would happen.  Sarah's treatments are for 2 hours.  They cover all the beds and chairs in the room with sheets, and have Sarah sit/lay on top of new sheets and use new blankets to cover her.

Sarah's room during a treatment

The respiratory therapist starts the treatment with a dose of albuterol and then hooks her mask up to the nebulizer type of machine.  They then put the tent over her and turn on the machine.  She wears the mask for 2 hours, watching a show through the clear tent.  Then the respiratory therapist comes back and and turns off the machine and puts the tent away.  We gather up the sheets and put them in the laundry.  We wipe down Sarah's face and head.  We then have an hour of quiet before the nurses will come in the room to do normal things.  If something comes up the nurses will come in but they try to stay out of the room for that hour.  She gets these treatments 3 times a day or every 8 hours.  Fun Fun.

Sarah's tent over her bed

A better angle of Sarah's tent to see her with her mask

One of my coworkers brought me some yummy BBQ for dinner tonight.  Thanks, Kent.  It was during the last part of Sarah's treatment, so I stepped out of the room and visited for a bit.  Sarah also had her wish buddies from Make-A-Wish come and say hi and bring a gift.  She also got another gift from a family friend.  She loves to get new things.  It is one of those things that I am sure will have to work out of her personality eventually but she can be focused on herself during this time.

I am grateful for my wife Jess during this time, who is able to step up and take care of two kids like a single mom, while I stay in the hospital with Sarah.  She is amazing.  We are blessed to be surrounded with awesome people who care and love and support us.  I am grateful that the Lord puts us in hard circumstances so that we can grow and see the good in people around us.  Amazing.

Back in the hospital and RSV

So around 3:00 am on Thursday, Jess checked Sarah's temperature and found it to be 99 F.  That meant that we needed to check it every hour.  At 4:00 am, her temperature was the dreaded 101 F.  That meant a trip to the ED.  Sarah and I arrived at the ED about 45 minutes later.  After getting a blood draw and getting the results, we found that her ANC was in the 70s.  That meant that we were admitted to the hospital.  Labs were sent out.  Sarah and I made our way to the 2nd floor of the hospital and settled in a room just before 8:00am.

Mid morning Sarah complained about her shirt being wet.  I assumed it was from her drink, but as I looked closer, her IV line was leaking.  It quickly started to have some blood flow out of her port.  We sealed off the port and found that it was just the connector that was loose.

The doctors rounded in the afternoon.  Sarah's labs showed that she was positive for 2 viruses.  The first was rhino virus, which is the common cold.  The second was RSV.  The doctors had conversations with infectious desease doctors and because of Sarah's numbers being low, they decided to treat her with ribavirin.  This is a medicine that is taken with a machine similar to a nebulizer.  She wears a mask and has a tent placed around her.  It also requires a room with negative pressure capabilities.  That meant that we had to move rooms again.  We are on the 3rd floor in the Hem/Oc unit rather than in overflow rooms around the hospital.  The treatment takes 2 hours, where she has the mask on.  They don't like anyone else in the room unless they have a filter mask system on.  Then she needs to stay in for 1 hour after the treatment is done, before the room is ok.  These treatments happen 3 times a day for the next 5 days.  It will be tough.

The treatment tonight was supposed to start at 8pm.  They put the order into the pharmacy late, so they were expecting to start around 9pm.  The respiratory therapist check on it about 9:30 and there was a mixup with the paperwork, so the pharmacy hadn't started on the medicine.  It takes about 1 hour to get the medicine ready.  So It is almost 10:30pm and they are just now getting ready to start the first treatment.  We have had to put sheets over bedding since particles will fall out of the air during the procedure.

This will be a hard week.  Please pray for us.  We are grateful for all those who have prayed for us.  We are very grateful for all those who have reached out and helped make our lives easier.

Sunday, April 15th, 2012

The fact that I haven't written for a week should be a good sign that the week was decent.  All of the kids have been trying to stay healthy.  We have all been fighting a sickness in the house.  Sarah has had some minor fevers but nothing to the 101 threshold, so we haven't had to go to the ED yet.  We hope the kids stay well, as this next week is spring break for the kids.  Sarah's numbers are low, so there are no plans to go anywhere.  Jess hopes to go to the zoo later on in the week.

Thanks for all the love and support.  We are amazed at the love and compassion that is shown toward us, and are very humbled and grateful for it.

Sunday, April 8th, 2012

We had a quiet Easter Sunday.  Sarah and I stayed home from church since her numbers don't allow her to be around a bunch of people.  The girls enjoyed the baskets and getting some candy in them.  The rest of the day was calm with a good dinner that Jess made for us.

The end of the past week was mostly calm.  On Saturday, I took all the kids out to the Ballard Locks for a picnic and to see the fish ladder.  There was only a couple of fish to see, but the kids enjoyed being outside and having a picnic.  It was fun to see Lilly and Sarah play out in the sun.  Lilly had a birthday party later on Saturday for one of her classmates.  She went to "Paint the Town."  It was a place where painted a ceramic knick-knack.  She picked a kitty and painted blue with pink polkadots.  She had fun, and was able to eat the birthday cake, since her classmate has similar food allergies as Lilly.

We are grateful for all the love and support that we receive.  We are constantly amazed at your generosity toward our family.  We love you very much.

Wed. April 4th Update

We had an interesting visit to the clinic today.  We thought it was going to be a basic blood check to see Sarah's levels and maybe include a blood transfusion.  The plan was for Jess to take Sarah and Gus and if needed, I could come from work and take over.  Unfortunately, Sarah's port wasn't drawing out blood.  They tried to use heparin to make sure there wasn't any clots but it wasn't working.  That meant that Sarah needed an X-ray to make sure that port was still in the right place.  Gus was getting tired so he wasn't behaving.  I left work to meet Sarah and Jess at the clinic.  The X-ray showed that everything was in the right place.  They gave Sarah some more heparin with muscles.  This is fairly common for a film to form over the port tube so it becomes a one way valve.  The heparin with muscles worked and they were able to pull the blood for the tests.  Jess had left to put Gus down for a nap.  Sarah's numbers came back and her hematocrit was 21.4, right on the border.  She has an appointment on Friday, but they didn't think that she would make it by then, so we went ahead with the blood transfusion today.  So I was there with her for another 3-4 hours after the blood tests came back.  I am glad I don't expect life to be easy.

The rest of this week has been pretty good.  Sarah finished up the Ara-C on Monday, so we are closer to be done with the weekly chemos.  We have like 18 weeks left or so.  After that we move to a monthly schedule which should mean that we gain some sense of normalcy again.  

We are grateful for all the prayers and support.  

Sunday, April 1st Update

This morning, we decided it was time for me to go bald.  Sarah and Lilly both helped to shave off my hair.  I look better that I expected without hair, and it gives me a preview of when I finally go bald.  

Twiners

I rolled my ankle playing church ball on Thursday evening.  I am finally starting to walk normal, again.  The bruises are starting to really come it, and Jess says it looks painfully.  

Priesthood Session was awesome.  There was a lot of focus on duty and the power of the priesthood.  I am glad that I have been able to keep the power of the priesthood in my life.  One of the many quotes that stuck out to me was that nothing in the priesthood is self centered.  The priesthood is for the service of others in bringing others to salvation. 

We are grateful for all the support and love that we receive.  We can feel the prayers and love and it helps to support and sustain us.  Thank you.