The Middle Weeks

WEEK 3 

Our third week started with a few ups and downs for Caroline.  There was a new Infectious Disease doctor on rotation and this woman, Dr. Edwards, seemed to be the Queen of ID doctors.  She has written the textbooks for it and has about 50 years of experience.  Just the way the other doctors and nurses spoke about her, we knew we were in very good hands.

Monday morning, Caroline's bloodwork came in and her ANC number was low - this was her first line of defense against her infection so this was concerning.  The ID doctor said that if it did not go up by Wednesday, they would have to change her to a different medication.  Caroline has MSSA and Nafcillin is the powerhouse antibiotic for that.  If she had to switch, it would still be an effective drug, but just not the best for her sort of infection.  We called on all our friends to pray for her number to go up.  The ID doctor also decreased her dosage from 2000mg 4x a day to 1600mg 4x a day.  Caroline was at the high end for the therapeutic range.  1600 mg was still therapeutic.  Wednesday, I got notified of her bloodwork at 5 a.m., so I checked her ANC number at that time.  It had gone up.  It was immediate happiness and relief.  It was still low overall, but at least it was trending in the right direction so she could stay on the current medication.  That felt like a major victory.    But then, when Caroline woke up that morning, she did not feel well.  She could not keep food down.  Her headache had returned.  It was quite unnerving for us to watch.  This wasn't expected after so many good days in a row.  Todd was with her that day and he said the pediatrician stopped by the room a number of times to check on her.  By the evening, she was feeling better and the next morning Caroline texted me that she felt amazing.  Whatever the cause, she is back on track with everything and symptom-free again.  

Todd was able to spend Wednesday through Friday with her and this time they ventured out of the unit and explored the hospital.  They went up the elevator to the fish tank, they took the elevator down to the library.  They explored the cows statutes.  

Angus has come by nearly every day this week as well.  

Caroline has moved onto new games.  We broke out the Trouble game and really enjoy that one.  We play magnetic Hangman and she seems to beat me nearly every round.  The Children's Minister at our church, Ms. Leslee, came to visit and brought a goodie bag as well.  In it was a mini Simon game from the 80s.  Caroline has had a fun time learning that.  A few days later, Ms. Leslee sent homemade chocolate chip cookies with another church friend.  She and Caroline had talked about how they prefer the barely-baked cookies best.  When she sent them, she had labels on the bags: "Delicious for Caroline" and "Burned for Erin".  She also gave a container of cookies for the boys.  The 'burned' ones were the best.  

Caroline finally found something at the hospital that she likes to eat - sausage biscuits.  Now she gets them every morning for breakfast.  She also discovered that they do make French fries.  They are not on the menu, but one of the food service people that comes by to take her order mentioned it.  Her eyes lit up, What?!!  It was a game changer.  Now, some meals consist of fries and broccoli.  At least she like broccoli...

Henry has been the official quesadilla maker.  Last weekend, he brought Caroline four quesadillas.  He cuts them up into strips just the way she likes, then he put the strips in the shape of a heart.  Another day, he shaped the strips into a "C".

The boys are still at home trying to keep up with their school work.  In CC, Henry gave a presentation on birds.  He chose the kiwi, and part of the assignment is to draw what you wrote the report about.  I liked his kiwi bird.

Josiah finished out his week going to a birthday party for a friend that is moving out of country in January.  They are pretty good friends, so Josiah drew a posterboard size picture of his friend dressed as Steph Curry and Josiah dressed Sgt Pepper's style.  The parents were brave to have twenty-seven 14- and 15-year old's show up for a pool party.  Josiah said most were church friends and it never got out of hand.  

Todd had a big week of his own.  He got his stent out from his kidney procedure, he stood up and immediately felt 100% better than before.  It was causing a lot of pain, so he was quite relieved to get it out.  

He also had his last day at Houston Christian University.  He is onto bigger and better things at Southern Wesleyan University.  It also gets us quite a bit closer to family.  

Our whole CC community sent Caroline love through connected hands.  One family sent her a Spot the Difference book that was a definite favorite.  

WEEK 4

This was to be our final week at the hospital.  Alas, plans were changed...  

Todd and I switched places on Saturday.  When we drove up to the hospital, our neighbor friend tagged along to visit Caroline. He came bearing gifts.  

Caroline has been given so much from our friends and family.  She, and we, have been showered with everyone's kindness and generosity!  Showered!  

Week 4 started off with Caroline's skin not liking the PICC line bandage anymore.  Her whole arm was bumpy and itchy.  There were bumps under the PICC line bandage that the doctors kept a close eye on.  Different creams were tried throughout the week.  They debated whether it was contact dermatitis or a yeast infection.  When the culture taken from the most intense bumps did not grow, contact dermatitis won the day.  Zyrtec was started as well as an anti-itch medicine.  They changed her PICC dressing to the hypoallergenic model.  Even with all that, it got worse before it got better.  They discussed taking the PICC out and finishing her meds with a regular IV.  At first that was not a bad idea because she only had a few days left in the hospital.  The medicine is very rough on veins and it burns going in, which is why the PICC line was ideal.  It also became necessary to keep the PICC when Caroline's stay got extended.  The third steroid cream has helped the most, so she's been continuing with that.  

Mid-week, Caroline had her follow-up MRI to see how things had progressed.  This was all in anticipation of her Oct 1 discharge date.  Caroline was very nervous about the MRI because she had been sedated for all the other ones and she was concerned she wouldn't be able to stay still as long as they needed.  This hospital had VR type goggles and she was able to watch a movie during the test.  They did advise her not to pick a funny movie because then her body would move if she laughed.  I was able to sit in the MRI room with her and she did great.  I never saw a single movement except a foot that twitched just twice.  

Infectious Disease gave us the results the following day.  The clots in the jugular were gone.  There was one remaining clot in her brain that was almost all the way dissolved which meant Caroline would not need to stay on blood thinners when she was discharged.  (We were originally told she would be on blood thinners for months, so this was huge.)  However, there was still an area in her brain as well as her nose that lit up on the MRI.  The ID doctor said it could just be inflammation because it takes such a long time to fully go away, but in case there was still lingering infection, she wanted to keep Caroline another week on IV antibiotics.  Now it was five weeks inpatient and our new discharge date became Oct 8.  

The silver lining was that meant one more week of Angus visits.  

This week we finally made it to the library when Angus was there.  Caroline learned that he got to be off-leash in the library and she really wanted to hang out with him when he was "free".  The two of them sat on the floor together.  Caroline started scratching him and he promptly gave her his belly to scratch as well.  

I went to CC with the boys this week, so our friend went to have lunch with Caroline so she wouldn't be alone all day.  While she was there, Angus came to visit.  They not only had their normal bedside visit, but they got to go up to the 5th floor and play fetch.  The 5th floor has an extra long hallway and Caroline had a lot of fun throwing the ball to Angus.  She also got to hide behind a pillar and play hide-and-seek with him.  

This week, we had the volunteer dogs stop by.  It is a group of four dogs that visit the rooms like Angus, but they are not officially trained therapy dogs, just regular volunteer dogs that enjoy this sort of thing.  Caroline enjoyed Mini, Tootsie, Luke, and her favorite, Willow.  (Mini below.)

This week Caroline and I have gotten out to explore the hospital several times a day.  We've started going to the 5th floor to walk their long hallway which overlooks the city (way in the background).  We go to the first floor (when it's not busy) and play on their activity wall.  They have memory and sliding puzzles.  The second floor has a circular pathway that we walk, as well as a domed area that has a crazy echo sound in the middle.  That's been a lot of fun.  We've checked out the gift shop.  We've been everywhere we're allowed.

When the boys visited this weekend, we tried out the robot frozen yogurt machine.  The kids said it was very good yogurt.  

Caroline also took them around the hospital to show them all the places we walk.

We've had more people from church visit, as well as friends from our CC group that had moved to Louisiana, and were back in town for the week.  

Speaking of Louisiana, that's where Todd's car currently resides.  He left early in the week to drive to his new job in South Carolina.  11 miles into Louisiana, he hit a deer.  Unfortunately, the damage made the car inoperable.  The tire was flat, the passenger door wouldn't open, there were pieces of his car dangling.  The state trooper offered Todd an antler as a souvenir.  Todd declined.  (I would have taken the antler.)  Then he spent the next several hours while the nearest dealership, who could not fix his car, drove him around looking for a rental.  He was incredibly appreciative of their help.  He finally got back on the road five hours after the crash and made it to his destination a bit later than expected.  On Wednesday, he pulled into Southern Wesleyan and moved into his dorm room.  He got a suite - both sections of it, so he has good space.  He was given a meal plan and has enjoyed the food.  The campus is pretty, the temperature is pleasant, the hills are rolling.  He's been able to take many walks to enjoy it all.  His first day of work was this past Friday.  

This past week, we were given a fancier menu at the hospital because we have been there for so long.  Mid-week, we enjoyed Adobo chicken with rice.  It was incredibly good, but even more so because it was different.  We're really hoping they bring us the fancy menu again this week.  We're still here people!  We want Adobo chicken!  

And, after much time, Caroline has named her current IV pole, Harold.  Her IV pole at the hospital downtown was Jerrold.  She went with the rhyming names.  

The boys have been doing a good job with meals at home.  Henry's texted me a few pictures of the dishes he's made.  I've been impressed.  The last picture included a salad which I knew I bought a while ago.  Afterwards, when he said his stomach was hurting, I asked him to check the date on the salad.  Sept 16th.  Two weeks expired.  Not good.  Keep in touch about the whole stomach issue....  Our CC friends are going to bring the boys some dinners this upcoming week so we can hopefully stave off any foodborne illnesses.  

The boys had a good week at CC.  Henry's class had an ice cream party.  I  was told it had to do with something they were studying, but I have yet to hear what the actual connection was.  

In Josiah's class, all the boys decided to wear the same outfit (black shirt & jeans) as a "coincidence" because there are two girls in class that always "coincidentally" wear the same clothes.  They had a lot of fun with it.  

The boys and I finished out the weekend with a very loud game of Trivial Pursuit.  They both beat me, but I think it may be time for them to graduate from the kid cards to the adult cards.  Every time we read a kid card, we'd preface the question with This is so easy.  

Week 5 here we come.  Stay caffeinated.