Day 2 NTU Evening Update

Natalie was more awake today than yesterday, but clearly dealing with pain from the surgery and more nausea. Swelling has increased around her right temple, eye and ear. We’re using cold packs for her face and head, Dexamethasone to help control swelling, Zofran and Reglan for nausea, and Morphine and Tylenol for pain.  If we can get her to eat tomorrow she should be able to move to Lortab, with Zantac added to the mix of drugs. She’s miserable. My heart was breaking to see her almost crying today.

There were 3 highlights today – one was permission to move from the PICU to the NTU because the CT scan came back clean. The other two were surprise calls from her elementary teacher Ms. Sundell and from Grandma to see how she was doing. Those calls were important for her, she held on to every word!

Natalie is out of bed!

Amanda is one of the techs working with us, and the first person to have two shifts with Natalie. Amanda worked with Chris and saw Natalie on Wednesday, then came back today to work with us again today. She’s been awesome, and was the one who found the pink wheelchair for us.

Day 3: a Morning Update from the NTU

The morning started out bad, but has improved significantly. Nat got sick at about 4AM when no-one was there to catch it. The nursing station has a laundry so we were able to get her blankets washed and back on the bed. Her headache continued in the morning, but right around noon it seemed to lift away.

Her catheter was removed this morning and she was able to walk assisted to the bathroom.  The nurses also disconnected her from the IV fluids  but warned us that if Nat doesn’t start drinking or eating more then it’s going back on again.

Angela ordered a lunch of chicken nuggets, french fries and a chocolate shake for Natalie, who was finally able to eat!

 

 

 

 

 

 

 

 

 

Natalie is able to take the Lortab now, which will replace the intravenous morphine (Lortab has the same pain reducing effects but is orally administered, and lasts longer).

Natalie had a bed-bath this morning, and is now wearing her own pajamas again, which is must better than the hospital attire she had to wear for surgery. Angela also made sure to brush her teeth. We were able to get her into a wheelchair and take her out to the 3rd floor playroom, where she drew a picture and played the Candyland board game. We went down to the first floor and spent a few minutes outside before going back in and visiting the hospital gift shop, where Natalie found “Squiggles” the elephant to bring back up to her room. That excursion exhausted her so we’re currently back in her room. She’s asleep.

I can’t ask for better kids….

I’m so thankful for my patient and understanding kids. Marisa – thanks for your beautiful picture of Natalie!

 

 

 

 

 

 

 

 

Day 2: NTU Evening Update

It was a good afternoon but I think we pushed it too much. The Leal’s came to visit, which was just awesome.

 

 

 

 

 

 

 

 

Natalie is resting again after getting her “dinner” of Sprite, Oxcarbazepine, Dexamethasone, Zofran, Zantec, an un-named laxative, and Motrin for the 101 degree fever. The real dinner went into the fridge. I’m really hoping this kid gets some rest and feels better again soon.

I guess 6 hours was a little too long after the first dose of Lortab.  The headache came back, so we’re going to follow a four-hour regimen from now on.  So far no seizures have surfaced after the surgery. I’ve been watching her heart rate pretty closely for any telltale signs of activity, but so far nothing unusual.

A Visit from Elliot the Therapy Dog

Elliot the therapy dog came to visit Natalie this morning. Elliot is a Labradoodle who works with Intermountain Therapy Animals at http://www.therapyanimals.​org/, he even has his own Facebook page at http://www.facebook.com/el​liot.therapydog.  Joe is Elliot’s handler, and is a down-right good guy.  Natalie was motivated to get up and sit on the side of the bed, then walk out to the NTU therapy gym with Elliot at her side.  It’s the furthest she has walked since the Tuesday surgery.

Natalie and the Wonderful, Improving, Very Good Day

Natalie’s day 4 NTU evening update – we had a really good day today. We have switched off of the narcotics to a blend of Tylenol and Motrin, and are tapering off of the steroids. Natalie was able to get out of bed several times throughout the day, mostly assisted, but walked on her own to the therapy gym and later much further down the hall to have a bath. The swelling in her face is down considerably from yesterday.

A clear highlight of the day for us was opening up a care package sent by Stacey Nofsinger, a former and much-loved teacher who craftily coordinated building an album filled with pictures and letters from many of the teachers and staff who have worked with Natalie at Terra Linda and South Jordan Elementary schools. The album was beautiful, and the letters were all very touching – Angela was so touched that she was crying as she read the letters aloud to Natalie, and I had to read the last three because Angela was breaking up so much. Thanks to Stacey and John  Nofsinger, Mrs. Clayton, Mrs Kimber,  Ms Tamayo, Ms Sundell, Mrs Lilly, and Mrs Degn for some beautiful and fun letters for Natalie.

 

 

 

 

 

 

 

We also got visits from Elliot the Therapy Dog a couple of times during the day, which was another highlight. Elliot is a labradoodle, and he’s a big boy. Natalie must have had a heart attack when he jumped up on the bed and laid down next to her when they first met. He was gentle, he was well-behaved, he was endearing to Natalie. And he has the softest coat – Natalie was petting him and telling us that he felt soft like her blanket, and she wanted us to touch to compare. Elliot’s handler Joe is a good guy who makes rounds with Elliot 3 times a week to different hospitals as part of the Intermountain Therapy Animals program. I saw two other volunteers making rounds with pets on our floor, it’s an active program with incredible effect on the kids they visit.

 

 

 

 

 

 

 

Dr. Kestle (neurosurgeon) and Dr. Van Orman (pediatric neurologist) both made visits with Natalie today. Both were pleased with Natalie’s progress, and Dr. Kestle suggested that we could be out of the hospital by Sunday based on how well Natalie was recovering. This is fantastic news for us.

Natalie is finally eating normal meals now. She was able to finish her lunch of chicken nuggets and french fries although I think the meal knocked her out (she slept for about 3 hours after eating); and also had most of her dinner where she traded her grilled cheese sandwich for a slice of mushroom pizza (and here’s a quick plug for The Pie Pizzeria who will deliver to Primary Children’s). She had some cookie during the morning, and some chocolate kisses from the Leals during the day. She is talking, giving us all a hard time and has made at least one butt-box reference, is making jokes so we think the old Natalie is finally back with us.

We Got the Okay to Go Home!

Natalie’s Day 5 NTU Update – Dr Walker and resident Dr Bowers from Pediatric Neurosurgery came in this morning to look at Natalie. Dr Bowers just came back with 3 prescriptions in hand and told me we could leave anytime today as long as we coordinate with the nurses. I’m sending a few text messages out to friends who were planning to drop by, but we are going to get out of here!

As we leave the hospital grounds you can just see her reaction that we’re actually on our way home.

An Afternoon at Home

We’re home! Natalie has been set up on the couch, has had lunch, and is drawing on a little whiteboard while she controls TV with the remote. This kid is so happy to be home. It’s hard to believe that she’s back so quickly, but we are soooo relieved! Medicine schedule is up on the fridge as a reminder for us to follow the schedule.

It’s hard to stay low-key today.  I had earlier asked the Griffins to come by the hospital so that Eric Griffin could share his surgery story with Natalie because he had a similar operation and had a great scar to prove it.  We arranged to swing them over to the house instead of the hospital, and that seemed to work well.  It was good to hear Eric’s story from beginning to end, and Natalie was intrigued, at least as much as an 11 year old will be.

It got a little busier when the Poelmans came by to visit as well.  At that point we had 5 kids in the house and Natalie wasn’t so interested in sitting with the adults.  For a kid who was having issues walking to the bathroom, she was suddenly going down stairs, playing games on the Wii, and trying to go outdoors with the group.  There is sometimes too much of a good thing.

First Day at Home is a Challenge

Natalie’s Day 6 At Home update: Our first full day at home from the hospital was tough due to nausea. Natalie got sick shortly after the 8AM dose of Oxcarbazepine, Dexamethasone and Motrin; and everything sort of went downhill from there. Anything that went into her came back up within 20 minutes so we couldn’t be sure what got into her system, and in the meantime the headaches came back and laid her out.  There were trips out to pick up the Lortab prescription as a backup to the OTC drugs (I had originally not intended to fill the prescription because we had so much trouble with nausea at the hospital), then for Ginger Ale, then for a new Tylenol that was easier to swallow/not expired.  A reminder about expired medication – you should plan to check your medicine cabinet at least annually to clear out old medications. We weren’t able to find any of the 325 mg tablets that we used previously, but were finally able to settle with the 500 mg tablets after a very friendly pharmacist at Harmons calculated the dosage and verified that her weight was sufficient for that dose.

We had to cancel a visit with some of Natalie’s school teachers because she wasn’t better in the afternoon. We pitched out the steroid because it has a side effect of nausea, and gave up on the Lortab because that wasn’t staying down either. The 2PM dose of Motrin stayed down, and the 5PM dose of Tylenol stayed down too.  The call into Dr. Bowers, the on-call neurosurgeon at PCMC didn’t get us any better advice than what we were already doing or planned to do.  She’s finally keeping liquids down with the pills so it looks like we won’t have to go back to the hospital to push fluids into her with an IV.  So, at 7:30PM the headaches are under control, she’s hungry but doesn’t want to eat, and has enough fluids that I think we’re okay.

The highlight was a visit from our neighbors the Dowden’s. They stopped in to say hello to Natalie and presented her with an incredibly cute pair of striped froggy footies that Natalie is wearing right now. They bought them thinking of the hospital, but they will be put to good use here too. Thank you Anita, Ron and Mary!