HOME!

We're home! A day early! We're thrilled and exhausted and looking forward to sleeping in our own beds tonight. On Thursday Elizabeth lost her IV and it took SIX tries before they were able to place a new one...she was traumatized to say the least and we drew the line and said if she lost another one, they'd have to figure out another option for getting her meds into her. We were able to get the team to agree that if she lost this one, we'd have 7 days under our belts and it was probably safe to go home on oral antibiotics. Then while the nurse was changing her tubing this morning, it clotted off and that was all it took to get the discharge orders rolling! We're so thankful for your prayers, for meals from good friends, for visits and a wonderful arrangement for Ruby to spend the week with her buddy Sophie, for amazing nurses who adore Elizabeth and gave her such gentle (except for the IV incident) care, and that once again God has sustained us with his grace.

Here are a few highlights from the last few days of our stay.

E had 30 minutes in between IVs on Thursday night. We headed to the playroom and she jammed on the guitar.

~Our friend Adam (who's a Pediatrics Resident at Children's) recommended Elizabeth get seen by the music therapist and she had a wonderful time! It was certainly a highlight of our stay and we're thinking of working with her again in the future

~Ruby's super excited to have her sister home

~Part of Elizabeth's fan club...the nurses who've cared for her this week...they fight over who will get her each day, it's pretty cute.

~Elizabeth was ready to go!

Thanks again for your support for our family,
Love, The Harms

What Ruby's Been Up To

This week Ruby got to spend her days with our dear friends the Stewarts. Sophia is 8 weeks older than Ruby and the two are best buds. It's such a blessing to have a safe place for Ruby to play all week. Kristen and Tony & Sophie, thanks for loving on Ruby this week! We love you.

Long Days, Good Friends

After two days of being unable to get email access here at the hospital, I have a brief window. Elizabeth's doing well, though it's clear she's getting tired. Today we painted pictures and enjoyed a visit from friends to help pass the morning. At this point, there's nothing exciting to report, just 4 more days of IV antibiotics and this routine and hopefully we'll get to go home on Monday evening. Ruby's having a ball at her friend Sophie's house but has started waking more at night. I think she's wearing thin as well. We're in good spirits, just all pretty tired. We appreciate your prayers. Yesterday the director of the playroom offered to have a volunteer sit with Elizabeth so I could take a break. Apparently I had "that look". :) Thank God for perceptive hospital staff! Okay, my window is closing, gotta run.

If I can get online I'll continue to send updates...

Blessings,

Sara

Tuesday Highlights

We finally got taken off precautions and isolation and made our way to both the playroom and the roof-top garden today! We had a lovely time roaming the halls, and as usual, Elizabeth charmed the nurses, saying, "Excuse me nurse! I need a graham cracker!" and "Okay, I need to go back to my hospital room now, we will see you later."

She really does set the tone of our stay with her cheerful attitude. She jumps right in to make herself at home. Despite the hardship that it is to be in the hospital, away from each other so much of the day and putting our life on hold, God's grace has been abundant. Today, I actually used the words "easy" to describe this stay so far…with friends jumping in to bring meals and treats, care for Ruby and help out with errands…I feel a little spoiled! We're surrounded by such amazing friends, we have tremendous favor amongst the hospital staff and actually feel quite blessed under the circumstances. Call me crazy, but I feel very, very loved right now…And the more I think about it, the happier I feel. God is so good.

I'll close tonight with a Ruby-ism:

Ruby loves sour cream…with anything. She thinks ranch dressing is sour cream and loves to dip anything in it. Unrelated, she also loves Baby Balm, a diaper cream created by a Dr. friend of ours. She asks for it frequently. Over the weekend, as I was getting her ready for bed, I found her lying on the floor, diaper off, self-applying baby balm and saying, "more sour cream on Ruby's Bum??" This child will take care of things herself, thank you very much.

Goodnight and bless you for continuing to lift us up in prayer.

Love,

The Harms Family

A Good Monday

Today was another good day for Elizabeth. Her cultures are still negative and we expect them to be since she's on such strong antibiotics. We're still on contact precautions, which means no trips to the roof-top garden or playroom, but we get to stay in our private room...technically, since her stool cultures have come back negative for anything infectious, we could be off precautions...but we're not going to bring that up to anyone just in case they decide they want our room. Personally, I think the nurses are in on it but because Elizabeth is such a doll, they're just turning a blind eye. My first clue was that even though she's on isolation, a half a dozen of them take turns coming in to ogle over her. She just charms their socks off like it's no big deal.

 

Sadly, Elizabeth lost her IV this morning. They typically don't last more than 3 - 5 days for her before clotting off, so to lose it on Day 4 is not surprising, but it did mean an extra poke today. The IV transport team (they're the ones that escort kids in ambulances and helicopters etc. and thus are really good at placing IVs) was available, so they came and got her set up with a new one in no time...on the first try!

 

We've also learned that once we're done with her current course of antibiotics, she'll go on Penicillin prophylaxis to keep her from getting Strep Pneumonia again. Apparently, this is a common treatment for kids with sickle cell anemia, who also have non-functioning spleens or their spleens have been removed, and it works really well!

 

On the family front, we're all holding up, but the reality of 8 more days here is a harsh one. We're tired already and Matt and I are a little like two ships passing in the night...Please pray for our stamina.and for Ruby's sense of well-being during all the shuffling this week! By way of encouragement, we had a fun afternoon surprise when two sets of friends came, one with coffee, thanks Amy! And one with dinner, thanks Bronners! For a while, the guys took the kids to the garden and the gals stayed in the room and chatted with Elizabeth...it felt normal and really, really, nice.  

 

Finally here are a few pics from today. Ruby realized she could use some Bible Reading time today too...and then thought she could learn a thing or two about parenting from one of my favorite books. We found the cutest toy for Elizabeth...a little girl in a hospital bed, with an IV pole and removable slippers and lots of other fun things...She had a ball playing with her today and even took her to Dora's playground for a treat. I guess she wasn't on contact precautions.

 

Thanks for your prayers, they're our lifeline!  

Finally....sleep!

I guess the third night was the charm. Elizabeth and Matt both got a full night of sleep at the hospital last night! Thanks for your prayers for that and keep them coming.  

 

In the news for today:  This morning we learned the bug had been identified and it is indeed strep pneumonia. This news meant they stopped one of E's antibiotics and now she just gets Ampicillin every 6 hours. As long as she doesn't spike a fever, we'll start counting from her first negative blood culture (yesterday 9/5) and she'll get 10-14 days of antibiotics. We briefly discussed a PIC line (which would allow her to go home with a more stable IV and I would administer her IV antibiotics every 6 hours at home) but her hematologist isn't very hopeful about that possibility. Because she's clotted off IVs in the past, (and hello, she's got a big fat clot in her portal vein even now) that doesn't bode well for her not clotting off a PIC line, so we'd have to bring her back to the hospital and that rigmarole is probably not worth it. We're disappointed to have that off the table but agree with the decision to play it safe.

 

All in all, today was a great day in Rm. 816. A friend decided to share a Dora the Explorer Lego playground with us and it kept Elizabeth busy literally ALL day. She and Ruby had so much fun making Dora go up and down the slide, and swing on the swings...Sami, thanks for sharing your toys with us! I don't have any pictures because Matt was too busy being a stellar dad to remember to bring the camera with him. I can forgive him, because you should have seen the ponytail he gave Ruby...it was adorable! Jenny brought us a delicious dinner and now I'm home with Ruby for the night. It's my last night at home for a while, as Matt will need to sleep at home to get ready for work which starts up again on Tuesday...

 

We'd appreciate your prayers for LOTS of grace for Ruby as she'll likely feel next week's transition most significantly. She'll stay with her friend Sophie during the day and usually she loves it, but on the heels of our big vacation, she's going to need extra comfort. I'm doing my very best to take things one day at a time, and not bring tomorrows cares into today. Will you also join us in asking God for his continued provision for all the details of the coming weeks? Our whole life is once again on hold (execpt for Matt, who needs to compartmentalize big-time and focus on work for a few days) and we need special grace so we don't forget anything important.

 

Finally, we are so thankful for your emails of encouragement. They mean so much to us and remind us that God is at work in the middle of this beyond what we can even see.

Blessings and goodnight,

Sara

Family Day on 8 West

Because it's a weekend, things move slowly at the hospital. We still don't have a name for the bug yet, so Elizabeth is getting frequent doses of "broad spectrum" antibiotics. The sooner we know what bug we're dealing with, the sooner they can narrow the antibiotic down to something that will treat exactly what she has, and we'll be able to cut a few doses out, so everyone will get more sleep. Right now she's getting 4-6 doses each of two different IV antibiotics around the clock...that makes for lots of day and night-time activity since each dose sets off an "almost done" alarm, then an "all done" alarm and then requires a flush, which sets off an "almost done" alarm, then an "all done" alarm...which in the middle of the night wakes up both Elizabeth and Daddy and means a call to the nurse to ask her to come turn off the alarm. It's NOT a great way to spend ones sleeping hours. Needless to say, we'd appreciate your prayers for good rest for all of us. In yet another act of mercy, our friend Jesse stopped by and brought me caffeine this afternoon and brought me back from the brink. Thanks Jesse!

E's definitely feeling better, though the antibiotics are wrecking havoc on her GI tract and I think it makes her tummy feel crummy. Our biggest challenge is keeping up with our healthy toddler in a germy, room filled with medical devices! Ruby's got energy to burn and we're looking forward to E being off of isolation so we can all head to the playroom. When it's not raining we'll also be able to take walks in the 8th floor garden.

Here are some pics of the girls (this is the best smile I could get...I was being upstaged by Angelina on the TV) and our game of candyland this afternoon.

The girls don't get it yet, so Elizabeth was more interested in collecting all the "tickets" and Ruby wanted to take her gingerbread man for a walk...

Daddy and I managed a fierce game over their heads and Daddy pulled out a win thinks to his mad skills and mommy drawing the candy cane at the last minute...

...needless to say, there will be a rematch.

Thanks for your continued prayers for rest and wellness.

Friday Mercies

The steadfast love of the Lord never ceases;
his mercies never come to an end;
they are new every morning;
great is your faithfulness.

Lamentations 3:22-23

Thank you for your prayers for our family. For the first time in a long time we were really afraid for Elizabeth. She was a very sick cookie. Praise God that after a really rough 24 hours, two strong IV antibiotics and some Tylenol, Elizabeth is doing much better this evening. She's chatting up a storm, asking the nurses for games, reminding mom, "You have to order my food!" and generally charming the part of the world that's revolving around her right now. Her blood cultures have come back positive, so we know she's got a blood infection and will now just wait for her cultures to give us more information about which bug it is. Based on early information, it's probable that it's Strep Pneumonia again and therefore likely that she'll be in the hospital for another 10-14 day course of antibiotics.

In case you've been counting, this is her 3rd case of strep pneumo in 2 years and 2nd case in 2 months! It's most likely due to the fact that her spleen is not functioning properly due to her portal hypertension which is caused by her clot in her liver (portal vein thrombosis). That leaves her at increased risk of developing an infection that most healthy people with typical immune systems fight of without knowing it. After my sleepless night last night, Matt is taking over tonight and we'll have "family day" at the hospital tomorrow.

In the middle of all this, we are praising God for his mercies:

*This didn't happen while my mom was alone with the girls and we were on our trip!

*Someone invented a more painless procedure for drawing blood and placing IVs...it really was much easier with a little shot of lidocane

*Earlier this week I'd arranged a babysitter for the girls for Friday morning, so even though E's sickness was unexpected, Matt didn't have to take time off of work

*Elizabeth got sick on Thursday, after Matt's 3 toughest work days, and before a 3 day weekend...childcare issues are delayed for a few more days!

*We have two friends who are on rotations at Children's Hospital right now, and it was so lovely to see their familiar faces in the middle of all the craziness last night and this morning. Familiar Drs and Nurses are nice, but friends are better.

*My grandmother in California, had surgery for colon cancer this morning and appears to have come through safely

*Elizabeth's symptoms were enough to get us on "contact precautions" and moved to an isolation room...Yay! No roomates! (though our roomate last night was a total peach, and we were the noisy ones for sure)

*Dr. Pepper is a satisfactory short-term substitute for no sleep

*Panera Bread Co. broccoli cheese soup for lunch, hand-delivered by my handsome husband...yum.

*The gift shop had restocked little plush Dora the Explorer dolls so E has a buddy in her hospital bed.

*Emily made a delicious dinner tonight...such comfort food

*Our roommate last night was admitted for complications arising from anorexia. She's 12. Elizabeth is 3 and her feeding disorder is well on it's way to being history. She EATS and grows (albiet slowly) and has a happy relationship with food.

*God truly is good, all the time.

Back in the Saddle...I mean Hospital

This is Matt, trying my best to figure out WWSW (What Would Sara Write?)...

Last night Elizabeth complained of abdominal pain and had a low grade fever. This morning, her fever began climbing and managed to get as high as 105! Obviously, we took her to the ER and she's been admitted for another severe infection. It's too early to know where the infection is coming from, but there's no obvious source. The doctors (myself included), worry that she's having another bout of bacteria in the blood stream. Time will tell. After looking very sick for the whole day, IV fluids and antibiotics have Elizabeth looking a little better. She was even strong enough be her brave little self, and thank the nurses who drew her blood. Sara is staying with her overnight in the hospital, and unfortunately, the hospital is full enough that no private rooms are available and she's lost her ear plugs!

In addition to praying for Elizabeth's health, please be praying that Sara will be able to get some sleep too.

Turner Syndrome in the News

Here is a link to a positive informative news broadcast about a girl who has TS and her mom who's written a book entitled, The Miracle of Meghan.

 

When you go to this link....click on the box with the mother and daughter working in the kitchen to the right of your screen to watch the newscast.