Sunday, February 27, 2011

Our Cute Little Blair

Blair is trying to walk more and more each day. Here is a video from Saturday. She's got the whole front room of our house to practice walking with no obstacles because Spence took our furniture to stage a house we have for sale. He said it'd only be gone for a short time, but that was at the end of December...

Valentines Day

We celebrated Valentine's Day on Friday at our house. The kids were excited to make Valentines for Dad and Blair used more glue on her daddy's valentine than anyone else would use making ten. We made heart shaped rice crispy treats and had a fun night as a family. My mom's friend made these cute shirts for the kids.

Thursday, February 24, 2011

Better Each Day

Blair is doing better each day. Today we had a follow up doctor appointment and everything looks pretty good for now. We have another appointment in two weeks and they'll do a last chest x-ray to make sure her lungs are looking good.

She is getting more and more confident standing and walking a little bit on her own. She can stand up for a second if she's getting off a chair or a step and she's getting better at standing up from the middle of the floor. Yesterday, she could only take one or two steps before falling, but today she's put together a few more steps a couple of times. She's doing great with sitting up and using her arms. She only had one potty accident today and I think we're going to try wearing underpants to bed tonight. She's being a pretty good sport considering everything she's gone through lately.

Our cute girl crawling around. Yes, her bangs need to be cut in a big way, but it obviously isn't on my priority list right now.
Happy to be walking
Davis wanted to show me how he walks too. He always says, "Blair can't stand much. I stand much." He is being very nice and helpful to his sister now though.
Sorry the video is so shaky. I was trying to get her standing and then move back without missing anything.

Wednesday, February 23, 2011

First Day Home

We had a pretty good night last night. We woke up to all of the alarms for medications and Blair took them like a champ. I've got quite the list going of what needs to happen each hour, but I don't want to miss anything that needs to be done.

I've been pretty worried about how Blair would get around at home, but she's doing better than I thought. Yesterday during her physical therapy, they worked on crawling with her. She doesn't do awesome with it because her arms are pretty weak too, but she can sure get where she wants to go by crawling. When I put her in bed at 9pm (much later than the normal 7:30pm bedtime, but earlier than her hospital bed time), she came downstairs and into the kitchen before I knew it. It turns out that she can slide down the stairs on her belly just like she did as a baby. It's a little crazy watching her get around like that, but at least she can move around the house on her own.

We were all so happy to see Davis this morning and he was thrilled to be home with us. He went right upstairs and woke Blair up when he got here. They've been playing together great all day long. I've had to have a little talk with Davis because he said, "Only babies crawl" and he told me to put her in time out when Blair had an accident, but he's understanding a little better now. We're all learning to adjust and I think things will be back to normal in a couple of weeks. Right now, we're just thankful for all the blessings we've been given lately.

Tuesday, February 22, 2011

Day 21: We're Headed Home

Our cute girl happy to be in her own PJs
Ready to get home
Today Spence needed to go to work so Blair and I hung out all day. It was a lot harder without Spence around because Blair doesn't like to be in her room alone even for a minute. Also, she's starting to try to move around a little more, but has no balance, so she'll sit up and try to move and about fall out of her bed. I ran downstairs for some breakfast while she was sleeping, but other than that, I didn't leave the room all day.
Blair wanted her own PJs on today, so we put them on her, but she had an accident and had to go back to the hospital gown. The poor little girl is so confused from going back to a diaper for three weeks after being potty trained for so long. Also, when she was first ex-tubated, they needed her to go in her diaper and she wouldn't. She'd hold it and wanted to go potty, but she couldn't get out of bed, so we spent all day trying to convince her she should just go in her diaper. Now we're working on getting over that and back to going in the potty 100 percent of the time.
Blair is doing great with her breathing, but they're still working on weaning her medications. They did, however, decide we could finish the weaning process from home. Tonight we were able to come home. It was a little crazy today because this morning, the doctor told us to plan on going home tonight, but later tonight, she wasn't so sure anymore. I had a total meltdown. Three weeks is a long long time and Blair is doing so great with everything that it's a major job entertaining her all day in the hospital room. They have playrooms and things for the kids to do, but since she has RSV, Blair isn't allowed to leave her room. She gets pretty tired of her bed sometimes.
It was finally decided that we could go home tonight. After a bunch of packing and getting all of the orders clear from the doctor we were on our way home at 7pm. It took a long time to go over what we need to do at home because the medication schedule and amounts given change each day during the weaning process. When I stopped at the pharmacy at the hospital to pick up her medications, the person helping me jokingly said, "It must have been a big year, you've already reached your out of pocket maximum on your insurance. You don't owe anything tonight." Yeah, I'm pretty sure due to the ambulance ride, the ER in Layton, and the helicopter ride, we reached our out of pocket maximum before we even got to Primary Children's Hospital. Thank Heaven for insurance.
Blair is in bed now upstairs by our room, I've cleaned out the fridge since mostly everything had gone bad while we were gone, I've gone to the grocery store to re-stock, but I haven't put everything away from the hospital and other random things that were left out the two times we were home for a few hours. I'll work on that in the next few days.
Tonight, we've got to set an alarm for 12am, 4am, and 8am (we're on a little bit of a late schedule from the hospital) to get up and give Blair her medicine. It's a little crazy, but I'd much rather set a few alarms and deal with waking up in the night than stay in the hospital any longer.
We are home and getting settled. Grandpa Erickson will drop Davis off in the morning and it will feel so good to have all four of us together at home.
Thank you all so much for your concern, prayers, and support during this stressful time for our family. We love you all and appreciate everything you've all done. We are not, however, going to be able to have visitors at our house for the next couple of weeks. Blair is still pretty weak and needs more time to heal. Thanks for your understanding.

Monday, February 21, 2011

Day 20

Nothing really big happened today other than the fact that Blair took at real bath for the first time in what seems like forever- really only 20 days. It felt so good to have my little girl really clean. It was much faster and easier than a sponge bath and hair wash in her bed.

Last night, they decided to turn off her feeding tube for a while so that she'd be hungry enough to really eat something. After they stopped feeding her through her tube for a while, she ate a pretty good dinner at 6:30 and didn't throw anything up. The doctors still decided that they wanted to put some more food in her belly though the tube though. At 8:45, they started pumping food in her tube. About halfway through putting in the allotted amount, Blair said her belly was full and she didn't want any more food in it. The tech that was doing the feeding talked to the nurse, but the nurse said to go ahead and she'd be fine. About 3/4 of the way through it, Blair said again that she didn't want any more and her belly was too full for more. They finished the rest anyway and Blair said she didn't feel good. About a half an hour later, she threw everything up all over the place. When she was throwing up, there was so much force that her feeding tube came screaming out of her nose. That was the one part she was happy about in the whole throwing up episode. They decided to let her leave the tube out for the night and they'd make a decision about it in the morning. This morning, she's done well enough, that they didn't put it in again.

After her bath today, they also decided that she didn't need her vitals measured constantly, so they took the leads off of her chest- another cord off of her body. This afternoon, they took out her PICC line (the long IV type thing running from her elbow to the large vein going into her heart) and now all she's hooked to is the oxygen saturation monitor. She is doing awesome. She stayed high on her saturation last night and they said if she was going to have a problem, it would likely happen during the night. It feels like she's over the breathing problems.

They're working on weaning down some more of her medications and if she does well through the night and tomorrow, we could be going home tomorrow night. I think this should happen no problem. We'll see though, she's surprised us before...

Blair is doing so much better with her physical therapy. Today she will sit up on the edge of the bed herself for a pretty long time. She's still pretty shaky, so I don't let her sit there when we're not right by her, but she's holding herself up. She's also doing a little better standing and walking. She can confidently stand while holding on the bed or the chair and she's requiring a little less support while walking. It's been interesting watching her learn to use her body again. For some strange reason, when she stands, she feels like she needs to lean back really far and she's totally off balance, but she doesn't realize that. I think that with a little more time and a little less medication, she'll be getting around by herself. I'm still pretty nervous about the stairs at home though. I think she'll be sleeping upstairs in the room next to us for a while, not in the basement with her brother.

My cousin Dawn came over today and brought the kids some cute books and stayed for a great visit. She is so awesome and so thoughtful and I love anytime I get to hang out with her. It made a long, uneventful, would be boring afternoon, fun.

Blair played with toys, play dough, and read a ton of books. She loved ordering whatever she wanted to eat whenever she wanted it and getting all the juice and slushies she wanted. She also discovered chocolate pudding. She hasn't had it before, but the word 'chocolate' made her want it and she was ecstatic about it. It was pretty funny to watch.

Her voice is getting better and we can understand most of what she says when she tries to talk loud. The last few days of playing with her non-stop have been pretty fun. If only we had her brother here...

A cute girl after her real bath. She's loved playing with the stethoscope and a syringe. She's the doctor to her daddy and her stuffed animals and dolls and they need to be checked often. She also likes looking like a doctor in her special hospital clothes.

Blair and Dad enjoying some of the treats that Dawn brought us.

Sunday, February 20, 2011

Day 18 & 19: We're Moving On Up

Yesterday morning, Blair was having a hard time. She had woken up before we got back to her room and she was upset that we weren't there. When we came in her room at 7:15am, she reached out to give me a hug and said, "I want to stay with you all day today. Don't go ANYWHERE!" Since then, we've been taking turns going downstairs to eat so one of us was always with her. Last night, she refused to go to sleep unless we were sleeping in her room, so we scooted her over and I slept next to her and Spence slept in the fold-down chair. She must be feeling much better because she moved enough to kick me in the side the whole night. She did wake up a few times and was happy we were there.

All day yesterday she played and was a pretty happy little girl. Her diet was upgraded to soft foods, and she was pretty glad to get some applesauce. She did great with the applesauce and a few bites of banana at mid-morning, but she had a few bites of mashed potatoes and part of a roll last night and it all came right back up. This morning she ate some more applesauce and some yogurt and she's done fine.

Yesterday afternoon, they turned off the last of her medications that were on constant drips. She's done pretty well and only had withdrawal symptoms for a little while last night- sweating and fever. Now they're working on weaning her off the drugs that help her get off the drips. She has to be mostly off all of these before they'll send her home.

This morning, they had the doctors from the Children's Medical Unit come and check Blair to make sure they were comfortable with her moving out of the ICU. She's now moved to the third floor Children's Medical Unit room 3045. She's watching movies and eating her root beer slushie and happy as can be. Since she's come upstairs, they've turned off her oxygen totally and she's still got a high oxygen saturation level. Her nasal cannula is still sitting right by her bed in case she desaturates and needs oxygen fast.

When the doctor was in talking to us this afternoon, she said she thought we could go home as soon as Tuesday, but it may be Wednesday. We're hoping for sooner rather than later, but we want to make sure she's totally ready before we take her home.

Cuddling Dad and Mom after a sad morning

Blair has a room service menu that we order her meals from. This was her first meal in almost three weeks. When they brought her food in, she was thrilled. She looked right at Spence and said, "Are you so jealous, Dad?" We both cracked up.
Our clean little girl after a bath- I can't wait until I can just throw her in the tub again. Baths in the bed are such a pain.
Before we moved rooms, she was checking out all of the posters and cards people have sent her. They were a little hard to see when they were on her wall.
Dinner on the way in...
Practicing standing up with Dad
Happily settled in a new room watching Cinderella


Davis is having fun at Grandma & Grandpa Erickson's house this weekend. He even convinced his grandparents and aunts to build a couple of snowmen with him. It looks cold, but Spence, Blair and I would sure like the fresh air- even cold fresh air.

Friday, February 18, 2011

Day 17: Even Better Than Yesterday

Blair is doing so much better. Last night, she insisted that the pink fingernail polish she had on needed to be taken off and replaced with the new light blue she got in a gift. After running around talking to a number of nurses, Dad came to the rescue and found some nail polish remover wipes. Spence took off her nail polish for the first time; he didn't, however, paint them blue. It was pretty cute watching him work so hard to please his little girl. He's been saying for days that he'd be happy to get her whatever she wants and entertain her all day long if she'd just get better.

Last night, she also decided that she needed a drink. Since she just got her tube taken out and she hasn't had anything in her stomach for almost three weeks, they said she could have a few ice chips. She was not thrilled. She cried and cried and told us a million times that she was really thirsty. Lucky for her, this morning they decided she could have clear liquids. She's eaten two slushies, a popsicle, and a few cups of apple juice. She loved the slushies and was super happy the whole time she was eating them.

Today they've worked on weaning her meds more and weaning the oxygen percentage. She went from 100 percent oxygen last night to 40 percent tonight. She's doing great. Once they wean down the oxygen percentage to the 21 percent that we all breathe, they'll work on weaning the pressure in her nasal cannula. They said today that she'd likely leave the ICU when her drips were turned off. It looks like that may happen tomorrow. That would be quite the step. We're crossing our fingers.

Most of the day today, we've been playing and doing activities that the Child Life people have given her. She's loved it all. She gets tired and worn out pretty quickly, but she's acting more and more like herself. She's definitely bossing everyone around telling us exactly what she wants. If we can't understand her or she doesn't get what she wants, she has a total breakdown. I think that's a combination of her regular self and the medications. It's kind of crazy though. She's perfectly happy one minute and totally melting down the next.

One thing that we hadn't thought about in all of this is her muscles and what her body would do laying in bed for so long. They sent a physical therapist in today and she did a few exercises, but she was pretty unhappy the whole time. She was nervous to be sitting on the edge of the bed despite the fact that the therapist and I were holding her and she won't even try to stand up for a second. The therapist held her and asked her to stand for five seconds and she was crying and bending her legs the whole time. She was doing a little better tonight reaching for things and trying to hold her neck up for a few seconds though. Her legs feel pretty strong if she tries to push our hand with her feet, but she's pretty unsure about her ability to do normal things. They did send someone in that was supposed to help her with her hand eye coordination, but she's doing great with that. She fed herself fine today and has been playing with little toys no problem.

The respiratory therapists have been doing therapy on her to get more of the junk loosened in her lungs. They turn on a machine that sort of pounds on her chest and back. They told her she could try it on mom and dad and it's actually a pretty good massage- one perk of the hospital, I guess.

Overall, we had a good day playing, reading books, doing craft projects, and being the doctor for her baby and toys. Her voice is coming back a little so we've been able to understand about 75 percent of what she's saying. We had a great day and it looks like tomorrow will be even better.

Dad taking off the nail polish
Less than thrilled with the ice chips she was offered

This morning she decided she needed clothes because she was going to be cold outside- "It's freezing cold out there" she said. Even after explaining to her that we wouldn't be going outside, she liked the idea of the leg warmers, although the top of her legs would be very cold and she needed a shirt too. It was clearly a total meltdown. She was happy again when we found a hospital gown.

Art projects- stickers, coloring, and making cards

Happy to finally have something good- a slushie that she was allowed to eat herself as fast as she wanted.

A paint project they gave her- hasn't Primary Children's heard of washable watercolors??? This was a big mess, but not a bad place to do it. They've got the perfect drop cloths for everything.

What a mess
The baby had a fever too- poor baby, she'll need some Tylenol.
Listening to her baby and her daddy

Her baby also need a few breathing treatments- good thing the mask didn't cover Blair's whole face like it covered the baby's

It's the baby's turn for the arm restraints
Medicine for Zoe and the baby

Blair likes the fact that the hospital provides great treats on demand- At this point, I think it'll work pretty good when she gets home too.

Thursday, February 17, 2011

Day 16: No More Respirator!!!

This morning when the doctors came for rounds they took out the tube in Blair's mouth. She is finally done with the respirator! She has done pretty well without it, but she's still had to work extra hard to breathe. When she breathes, you can see her throat retract quite a bit, but it's been getting better and better. After the extubation, they listened and decided her airways were still pretty swollen so they have done two more rounds of steroids to help her throat heal. They've also done a number of breathing treatments to help open her airways.

When I came back from hanging out with Davis last night and this morning, they had just extubated Blair five minutes before and Spence told me she hadn't tried to talk yet. When I said hi to her, Blair held up two fingers and said "Two nail polishes; I got two nail polishes". Her former nursery leader, Sister Salmond, had sent a gift for Blair with lots of fun girly things and she was very excited about the nail polish. She wanted to show me right away, so she motioned Spence to get out her gift. That's my girl- the first thing she says is "nail polish".

She has gotten better and better as the day has progressed. When they first took out the tube her breathing was pretty loud, but it has gotten slower and quieter. She has more energy this afternoon and she's playing and having a good time. It's still pretty difficult to communicate because her voice is so hoarse that we can barely hear her, but it's much better than it's been the last two weeks.

Right now, Blair just has a nasal cannula and she's been able to have her arm restraints off all day. There is a chance she could pull out her feeding tube, but it's not near as critical as the the respirator tube, so they're willing to take the chance.

Blair will stay in the ICU until they can wean the oxygen percentage blowing in her nasal cannula and the amount of drugs she's getting. She also needs to be able to eat and drink. They aren't planning to let her do this today, but hopefully she can have a drink tomorrow. She's already told us she's very thirsty. Hopefully, she just gets better and better from now on. They did do a test today though and she's still RSV positive.

Right after extubation

Once she was off the respirator, I could hold my little girl. It was absolutely wonderful. It's been so hard to see her in bed non-stop for over two weeks.
Afternoon nap time
This afternoon we got a little more of the adhesive off her face and and combed her hair- she looks like a totally new girl.
Sitting all the way up in bed with no coughing fits!

Playing with her toys tonight- she played with her Snow White magnet dress ups, read books, played with Fancy Nancy stickers, colored, and more. It's so fun seeing her more like herself.

Done with pictures

As much of a smile as we could get- What a cutie!
It was so good to see Davis last night. We let him come see Blair for a couple of minutes before we went home. He was required to wear a doctor's mask in order to come into the ICU. He thought the mask was pretty cool, but I don't think he knew what to think when he saw Blair. He just looked and stared for a minute and then started checking out the new stuffed animals.
Davis and I went home and did some puzzles our friends have give him. He had an absolute blast. When it was time for bed, he said the sweetest little prayer.
"Heavenly father, thank you for this day. Thank you for our blessings and for our family. Thank you that I could see Blair tonight- she's my sister and my friend. Please bless that the doctors can take care of her and make her better. Please bless that she can come home and play with me because she's been gone a long, long, time and I love her....Amen."
What a little cutie pie. I'm sure the part about the doctors taking care of her came from something he's discussed with grandparents, but I love all of his other thoughtful little comments. Those two kids will be so happy when they can play together at home again.