Erica - Week 1

I thought I'd start documenting the past week.  It's all running together in my head.  It goes into some detail, so if you get queasy easily, you may not want to read it.  For those of you getting daily email reports, this contains the same information.

 

Sunday night:

Well, actually Saturday.  Erica seemed fatigued and wouldn't do much.  But she's lazy like that sometimes.  By Sunday night, after dinner, James noticed she wasn't using her left side.  So he did some tests and verified that her left side wasn't working.  So we called a friend to watch the other kids and took her to the emergency room.  Luckily, they let us right in.  The CT scan verified that her shunt wasn't working and pressure was building up in the right side of her brain, thus causing problems with her left side.

 

Monday:

Shunt surgery.  The shunt was working, but was placed so that scar tissue was in the way of drainage.  So it was moved, and everything looked great.  She spent the day in the PICU and was doing fine.

 

Tuesday:

Awake, alert, answering with 1 or 2 words to questions.  About lunch time ate a couple of french fries.  A few hours later, while sleeping, she threw up the french fries.  From then on, she was choking quite a bit and her responsiveness level went down throughout the night.  It was hard for her to breath.

 

Wednesday:

Continued decline.  They put an oxygen mask on her and she was moved back down to PICU.  They gave her treatments for breathing (vapor medicine in a mask) to help her breathe.  She was diagnosed with aspiration pneumonia, brought on by fluids or food going into the lungs.  Had a hard time drawing blood because her veins kept collapsing.  She ended up with 10 pokes for her 2 IVs.

 

Thursday:

A breathing tube was put in.  She went to surgery in the afternoon to place an external shunt in her brain help drain the excess fluid and to measure the pressure in her brain.  After the surgery she didn't wake up.  Her vitals all looked great, but her body looked bad.  A brain MRI and CT scan looked great and showed absolutely no problems - no infection, no signs of stroke.  So statistically, she looked great.  Clinically, she looked awful.  The doctors were stumped, as well as several colleagues that they had contacted.  They put in a IV in a central vein because both IVs had collapsed.

 

Friday:

Woke up in the morning.  She squeezed fingers and nodded her head a few times.  The xray for pneumonia looked a bit clearer, but it could still get worse before it gets better.  They gave her some sedation because the breathing tube seemed to be bothering her gag reflex.  An NG tube was put in to start feeding her through her stomach.  They put a line in her artery to constantly monitor her blood pressure.

Saturday:

Erica was doing a lot better today.  She was moving around more and was trying to lift up her arms, although she couldn't get them past her waist.  But even the effort still shows progress!  She was also a bit more communicative with her yeses and nos.  She did have a problem with sudden spiking in heart rate, blood pressure, and head pressure.  They did a CT scan, but it looked no different than the previous one, so the doctors are pursuing the seizure idea again.  If she spikes again, they will immediately give her an anti-seizure medicine which, if it is a seizure, will show immediate improvement.  The doctors ordered a 24-hour EEG to monitor brain waves, but don't know when it will start because it is a holiday weekend.  She's doing well with the feeding tube and is almost up to the amount they want to give her.  They're trying to wean her off the respirator, to see how she does breathing on her own.  The chest x-ray showed no change in the pneumonia.

The ward has been absolutely wonderful in taking care of us. We have had meals provided and our other children have been taken care of.  They even mowed our lawn.  We thank them profusely for their generosity and support.

Amid the chaos and struggles of life...

there's this:

Zachary's not a giggler, so this is a rare treat today. 

(For those of you who get this via email, I think you have to click on the image to get to my blog and view the video.  If that doesn't work, go to kristiandjames.blogspot.com to see the video).

Saturday is a special day, it's the day....

...that we get up before 6 AM! Why, why, why do my children always arise so early on the non-school days! James had to be at work at 7:00, so he started taking care of Jess and Erica. I was grateful that he was letting me sleep in, but when Zachary cried at 6:06, he was all mine. Great.

This morning we saw two foxes in our backyard. Eldon claimed before that he had seen one, but it was hard to believe. But sure enough, I happened to look out the window when two were walking through. We live in the middle of a residential area, no real woods or anything, so I was surprised to see them. I wish I had gotten a picture of them, but there wasn't enough time. But I did get the kids to the window in time to see them. I was surprised at how small they were. At first I thought it was a cat wandering through our yard.

Another random happening, today at snack, Erica dropped her cake onto the floor while sitting at the table. Then on the way to the table, Jessie dropped hers. Then on the way to the table, Eldon dropped his popcorn.

We're still trying to potty train Jessica. Very smart girl, doesn't care a lick about being potty trained. It's not going well. She can do it, she just doesn't want to. How do you deal with that? If I knew, I could potty train her, eh? Well, we're sticking with it this time. She is 3-1/2 after all.

Shunt surgery

Erica's CT scan on Thursday showed that the ventricles in her head were enlarged, meaning that her shunt wasn't working properly. So the doctor scheduled surgery for Tuesday the 28th. We told Erica about the surgery and she took it in stride, but was apprehensive about getting an IV. So she came up with a plan. Erica said that she would tell the nurses to do a headstand. When they did, they would drop all their needles, and she would take them and shoot them away. When we told her she would be asleep when they gave her the IV, she said even though she'd be asleep, she would put her hands up to stop them.

When it was time to go, Erica was very resistant. She kicked and hit me all the way to the car, but finally acquiesced when we got to the car. We got the hospital and when to pre-op. She was very cooperative and got to watch a Tigger movie while she waited, which made the wait not so bad.

The doctor came to me to talk about the procedure. Of course, we'd talked before, but there were many questions still left to be resolved. Erica could have a shunt revision, which means that she could have the parts of her shunt not working replaced, or she could have an ETV (endoscopic third ventriculostomy). A friend of mine chose the ETV for her daughter and was very happy with the results. But every time I thought of it, I just felt sick. After discussing it further with the doctor, I still didn't feel good about it, so I decided on a shunt revision.

I went with her to the operating room for sedation. They put the mask on her (covered in chocolate chapstick - per her request). She was unhappy about it, but complied. I was then ushered out of the room.

The surgery from start to finish took about 2 hours. The doctor told me all went well. None of the shunt was working, so they had to replace all of it, which meant she had three incisions, 2 in her head and 1 in her belly. It's always been hard to get a vein in Erica, so I usually let the anesthesiologist know this. The past few times, it's only taken one poke, so I didn't mention it this time. When she came out of the OR, I counted 13 holes in her arms. It's a new record (it used to be 11). Guess I'll be mentioning it next time so they're aware!

She woke up in post-op, very unhappy. She downed a popsicle and got transferred to her room. She was upset at having an IV in her hand. She kept saying, "My hand looks terrible!" But she got to watch a lot of Dora movies and she loved picking food from the menu and getting food delivered to her to eat in bed. She always has a hardy appetite after sedation.

She recovered quickly and we were able to home the next day, which she was very happy about. She seems fine. I've noticed a big difference in her eyes. I had noticed her eyes becoming more crossed, and they look so much better now. She wants to go to school, but we haven't been able to wash her hair yet (tomorrow we can), so she's home for now.

Erica was with me as I was writing part of this blog, and she wanted to include her side of the story: "They cut me open and when I was asleep I forgot to put my hands up. I was unhappy about the surgery. I wanted to make a plan. Next time I saw Dan, which was the doctor who put the IV in me (note: really the nurse), his punishment is next time I see him I am going to lock him in the hospital room and leave him there forever. And that is how I am going to be mean to him. I was going to lock the door and run out of the hospital fast and my mom would come with me. We were going to run in our car and go home fast."

We got checkups for Zachary and Eldon today. Zachary is now 16# and 26" long, growing 3 inches and gaining 3 lbs in the past 2 months. Eldon is now 44# and 48", growing 3 inches and gaining 3 lbs in the past year. Hmmm, what's wrong with this picture? Eldon miserably failed on the eye test, so it's off to the eye doctor for us. Oh boy!

Spring Break

Day 1:
In the interest of keeping myself sane during Spring Break, I decided to tackle one major project a day and do at least one fun thing with the kids. So, the project of the day was to clean out and organize the hall closet. We were successful! We threw out 2 grocery bags of junk and have a neat, clean closet that will last for at least a day. ;) (See Mom, I *can* tidy up!)

For our fun thing, I picked something out of the latest Family Fun magazine. We cut pictures out of a magazine and glued them onto cardstock. Then we shuffled the cards and told a story with the picture. The kids didn't know what we were going to do with the cards when we finished, so they got a lot of interesting pictures and told good stories. Even Eldon enjoyed it, because he begged to tell more stories, but at the same time telling me it wasn't any fun. I think he's trying to grow up and pretend he's not interested in what we're doing, but he really is. Oh boy, we're starting to grow up! P.S. Later that night, I heard Eldon telling James about the incredibly fun thing he did making story cards. :)

Day 2:
Laundry Day! Eldon went to his friend's house to play for the day, and we had some friends come over to our house to play. It was a lot of fun.

Day 3:
Eldon went to the IMAX with his friend to see Planet Earth. They also donated some used books in celebration of Earth Day. I went to the first class of a cake class. Lots of fun! My tulips are huge! I took a picture of this one that I picked. It opened up as big as my hand.

Day 4:
What a day. Erica had an MRI, so a wonderful lady in our ward came over at 6:30AM (see, told you she was wonderful) to stay with the kids (side note - and there were many others that would have done it if their schedules had allowed. Such great people around!) Went to CCMC, and Erica yelled at every nurse that tried to talk to her because she did *not* want to get an IV. It was finally our turn (about 8:30) took her into the MRI room where they put the gas mask on her to knock her out. It worked. After the MRI it took her a while to wake up. Drank some ginger ale and pulled out of sedation. When she was ready to go, she tried to sit up and flopped right over to the other side. We put her in her wheelchair and she was ready to go (about 11:00). But she was floppy and loooooooopy! We went to go see the neurosurgeon and the nurse kept asking her how many martinis she'd had. She was silly and giggly and just plain loopy.
The doctor said, yes, she has a tethered cord, but let's check the shunt first before doing an invasive tethered cord surgery. So the wonderful nurse get a CT scan for us that day, we head downstairs for a quick lunch to eat while we waited in the waiting room for our appointment. Erica got pizza, and I cut it up into bite size pieces and put it in a cup so she could hold on to it easier while we waited. She thought it was hilarious to eat pizza out of a cup. Score one for the mom!
Erica was very good and still during the CT scan. Then we were free to come home (about 1:30). Thanked my friend profusely for babysitting, and played with the kids for a while. Zachary went down for a nap, put a movie on for the kids, then *I* went down for a nap. Nice...
Woke up about 3:45 to my cell phone ringing in my pocket. It's the nurse telling me that Erica's ventricles are indeed enlarged and she will need shunt surgery. On Tuesday. This Tuesday. Oh boy. Call James and let him know, then start making dinner.
Eat waffles for dinner. So fast, so easy, and the kids *love* it. James came home from work, I left to go grocery shopping (no, even I can't take 4 kids grocery shopping), came home so James could leave to give a ride to someone. Put the kids to bed and crash on the computer. What a day! I'm done now.

Day 5:
Beautiful day! We took a walk after dinner to enjoy the day. Eldon cooked dinner (spaghetti and garlic bread) for one of his cub scout requirements. He did a great job. He even did the dishes, too. Our one chore/one fun thing a day thing never really panned out, but oh well!

Recent Happenings

I keep thinking I should blog about NY and Easter.  But I feel like I don't have anything interesting to say.  But I suppose I'll do it anyway to get it off my mind.

First, we had a lot family here for Eldon's baptism.  12 of us in the house and lots of fun.  That's what prompted the whole NY trip.  I'm glad we did it.

NYC

Day 1: Drove to New Jersey where our hotel was.  We only got lost once, but quickly found our way via a shady left turn.  No cops around, no accidents, all is well.  Settled into the hotel, went for a quick swim with the kids, and then took the bus into NY to go see Guys and Dolls at a Broadway Theater.  The bus took longer than we expected, so we got into the theater, said, "Whew, we made it," sat down, and the show began.  Literally.  Good show, a bit different than the high school production, in that when high school students perform a burlesque show, it's a bit tamer than Broadway performing a burlesque show.  Imagine that.  Then we walked around NYC for a bit until we caught a bus home.  We didn't stop anywhere for dinner, so we got something at a restaurant in the bus depot.  James - "I came all the way to NY to eat bus station pizza."

Day 2: Drove to Liberty Park to catch a ferry for Ellis Island and the Statue of Liberty.  Saw both.  A bit cold, but good times.  Perk: Having a daughter in a wheelchair moves you up to the front of all the lines.

Day 3: Went swimming with the kids, packed, and drove home.

It was a short trip, but a good one, because now I've been to NY, and I didn't even get mugged or pick-pocketed. ;)

Easter

Saturday morning we had a ward breakfast and Easter egg hunt.  Then we colored eggs at home.  I tried a new Easter egg dye that was at Aldi's.  You paint on the eggs instead of dying them, so you can do more things with it.  Good concept, bad reality.  One, the paint never really dried, it's *still* very sticky.  Two, 3 three kids & 1 paint pallet.  That's all I'm saying.  But they had fun and liked the new way of painting.  They were so sticky that we decided to hide the plastic Easter eggs rather than risk getting sticky goo all over our house.

I made the girls some skirts for Easter.  I got the inspiration from ChristyNelson.net and the directions from Kuky Ideas.  Friday night, while Erica was sleeping, I tried hers on and decided it was too short, so I had to add another layer.  I don't like the four layers, but it had to be done.  When I tried them on Sunday morning, Jessie's about fell off her itsy bitsy hips.  So we got out the safety pins, and they worked fine.

Dinner was the traditional ham (although it was actually leftover from when the family was visiting), potatoes, corn, breadsticks, and Easter bunny blueberry pie.  What, you don't have Easter bunny blueberry pie for Easter?  Neither do we, usually, but it sounded good and it was De.Lish.Us!

My favorite Easter thing: Eldon took me aside as I was going to the store and said, "Mom, since you and Dad are the Easter Bunny, maybe while you're at the store you can get some candy to put in the plastic Easter eggs we got at the ward Easter egg hunt."  Thanks, Eldon.  It's a good thing you're here to help out your completely incompetent parents.

Scouts

Eldon's officially a Cub Scout now.  He earned his Bobcat award last night at the Blue and Gold.  He had to memorize 7 things to earned it, and he did it in two nights.  We're so proud of him!