A Sight for Sore Eyes

I saw Lily today. And, when I say that, I don’t mean I saw my very sick little girl. I mean, I actually saw Lily today. She took a nap this afternoon, and when she awoke, my happy, giggly sweetheart was back!

After seeing nothing but a sick little pumpkin struggling to breathe, a listless little honey who didn’t care what was going on, and a cranky little cutie who just wanted to be left alone with her mommy for about the last week, she was a welcome sight for my Lily-deprived eyes!

The evening has gone mostly well. Lily had a great dinner--gobbled it right down in a matter of minutes! [Love] We read stories, watched movies, talked, and giggled. She rested, she finally pooped (can’t believe I just blogged that), and we had a friend stop by for a visit. [Fun]

The only downer was that Lily’s IV finally infiltrated (we think). To be honest, Lily is very hypersensitive about IV’s anyway. This one had been puffy and a little on the questionable side for days, but it flushed well, so we didn’t want to change it unless we had to. To begin with, Lily has a lot of scar tissue in her veins, which can make her a difficult stick. When the nurse began the flush for Lily’s antibiotic, Lily started crying. SO, we decided the time had come, and the IV had to come out.

Thankfully, the new one went in well and seems to be in a good spot. [Yay]

Oh, and we had our best vest treatment EVER this evening! I held her on my lap and we read the new princess book from Grandma Kathy and looked through the new coloring books she received from our friend, Christie, tonight. We giggled, talked, did activities, and got “All Shook Up!”

Praying tomorrow gets even better!

Comfortable

The last day and a half (Days 5-6) have been a lot more comfortable for Lily. Yesterday she was able to see her sisters for the first time in five days. She watched lots of movies, colored a little, and generally was pretty peaceful.

I, on the other hand, was extremely tired because I usually get up with her for the vest treatments during the night. But, do you think that little girl would take a nap for me, so I could rest awhile? Oh no! : ) Instead, she took a nap while Daddy sat with her for a couple of hours. (I went home with the girls to get some clean clothes. Elise and I read a chapter of Pollyanna while I got some Leah and Elise snuggles and had a little lunch.)

Lily did, however, sleep through her 1:30 am vest treatment, which was awesome because I had to be out of my sleep room by 6:30 this morning (it was a sugery consult room that I remember well from previous hospital visits). Sleeping until 5:30 this morning (the next vest tx) seemed nearly a luxury!

Lily moved back to the ICU step-down unit this afternoon. Discussions were had about moving her to a regular med-surg floor, but I was really uncomfortable with that idea, mostly because of the way this hospital stay has been sort of up and down for us already (quite literally, if you consider all the moving between floors, units, sleep rooms, and such). Lily still definitely has retractions, moments of diminished breath sounds, and times with an elevated respiratory rate, so we feel certain she’s where she needs to be at the moment.

Today has been mostly a good day. Her chest x-ray looked a little better this morning; although, it still isn’t quite back to where it was 2 days ago (when we transferred back down to the PICU. Her respiratory rate seemed to be perhaps a little higher than yesterday, but nothing too disconcerting. She has moments of perkiness, but they are relatively short-lived. Her energy level is still pretty low and she tires easily.

Daddy and the girls came by for a short visit today and brought a balloon with them. Watching Lily bat that balloon around and giggle when it hit Elise in the head brought smiles to our lips. Having the opportunity to see the sisters interact, even for just a few minutes, was heartwarming. Afterward, Lily was ready for a nap though.

I’m hoping Lily will be stable enough to eat a little something later. She’s been so hungry (one of her complaints) but was on a full liquid diet this morning. A full liquid diet when you’re a vegetarian is rather limiting in the hospital, so Lily had tomato soup and rice milk for breakfast. She didn’t seem to mind though! And, the tomato soup seemed to hit just the right spot.

So, we’re doing okay, but we still have a long way to go. Thank you all for thinking of us and praying! Thank you doesn’t seem enough to convey our gratitude to each of you for taking the time and energy to care for our family. Please know how appreciative we truly are!

Winds of Change

I’ve been around hospitals long enough to know that circumstances can turn on a dime. Thankfully, circumstances usually change in our favor. This was not the case today.

Lily had been working pretty hard to breathe since the time she woke up this morning. Respiratory rate was elevated, she was having excessive coughing spells, and we were seeing more retracting (pulling/sucking in during breathing).

As I’ve said before, RR in the 60’s don’t really concern me too much because I’ve seen her rate double that before! Abdominal breathing isn’t new to us, and neither are coarse lung sounds. What I don’t like to hear are diminished lung sounds. It means parts of her lungs have to make up the difference for the parts that aren’t working as well. Another thing I don’t like to see is Lily being so worn out that she isn’t interested in watching movies, coloring, or anything else.

Here is the lowdown…

Lily moved back down to the PICU this afternoon. During the overnight on Saturday/Sunday, she had several coughing jags, where she’d just cough and cough and cough (like I’ve seen her do). Unfortunately, coughing is a lot of work. Epi nebs seemed to help her settle down.

During the morning hours, Lily’s cough was less “barky.” She had a few coughing jags, but mostly she was just so tired. So, we watched and waited to see how she was going to do.

While Lily was napping this afternoon, I noticed she really seemed to be “working,” and I decided to listen to her. Lung sounds were diminished to absent in both lower lobes. Combined with everything else, and the fact that she was so tired and only wanted to sleep the entire day, I was pretty worried that she would poop out.

I let the nurse know, and she contacted the pulmonologist who immediately told us to take her to PI[CU].

Lily was understandably freaked out with the moving. She kept asking for me to make sure I was nearby. When we got to the unit, she said, “I want you. Don’t leave me mommy.” I reassured her several times that I wouldn’t leave her. Mark called right before we left the room, and I basically told him we were heading to PI. He asked if he should come, and I said, “Yes,” and hung up.

We got Lily settled in, her nurse kicked the 100s of people out of the room (seriously, there were probably 10 people in there….imagine how that feels when you’re 5 to have all those people in gowns and masks looking at you and talking about you….someone even made some comment questioning whether this was a full moon. I said, “I hope not.” Inappropriate in front of family. It was shortly after that when the nurse kicked everyone out.)

And, it happened. Lily got some very therapeutic rest. When she woke up, Daddy and Grandpa were there. Grandpa told her about how he’d been coloring, playing with play-doh, and putting doll clothes on dolls. Lily giggled several times, and asked for crayons so she could color! That was the first time I’ve really seen her perk up since we’ve been here!

She colored, watched Cinderella, then the Tinkerbell movie. Towards the end, she was pretty tired and hungry. Her tummy is sore, which is probably partly from the vest pummeling her ribs and abdominal area, partly because she hasn’t stooled in a few days, and partly because Tamiflu can be hard on the gut. Could be one, two, or all of the above.

I am in a sleep room upstairs right now, and the nurse will call me when it’s time for Lily’s next vest treatment. I just know Lily will want me.

Prayers are still needed and very appreciated. This H1N1 is some scary shhh---stuff! Even the nurses and doctors are still learning about the best ways to treat it. Plus, it’s a virus, and viruses can take 7-10 days to run their course. We’ve just finished up Day 4.

I hope and pray Lily turns the corner to recovery very soon. She’s on 90% O2 and 9 L of flow through her MR-850. The next step would be Bi-Pap with a mask. She still has a lot of retractions, but overall she seems more comfortable than she did earlier. She’s just not coughing as much out right now, and that concerns me. Better out than in.

Thank you to my special friends Amy and Kathy for coming to see me, bringing me soup and bread, essential oils and cookies, and for letting me cry on your shoulders. Today was a hard day, and I needed that. I also really needed to see Lily perk up, so it was therapeutic for me too!

Praying for a good night, and for the peace of God that passes all understanding to wash over me.

The One With the Barky Cough

Most kids, when you ask them what a puppy says will respond with “Woof woof,” or “Arf arf.” Not Lily. When she pretends to be a puppy, taking lessons from Slink, the dog (Toy Story), she says, “Bark bark!”

I love the way she phrases things. I love how she uses the term “thingie” quite regularly. I love it when she says things like, “Maybe I have to go potty,” or “My nose is hurting,” which means, “My nose is running.” And, I wish I could just bottle her up to play back later, when she’s all grown up.

To update, most of last night Lily had a very croupy-sounding cough. She slept well between nebs and vest treatments, but after her vest, she would cough nonstop until we’d give her an epi neb.

All morning Lily has been working a little harder. She’s had retractions all over, elevated respiratory rate, and increased O2 needs. Her labs look a little better, but her chest x-ray is mostly unchanged. So, she’s not better, but she’s not necessarily worse; there are just moments when she’s more comfortable than others. When she’s working hard to breathe, I can’t let her eat anything, and she gets pretty upset about that.

It just takes time. I would expect us to be here at least a week (today is day 4), and likely longer, depending upon how Lily does over the next few days. For now, I really haven’t seen much improvement in her breathing. On the other hand, I know how quickly she can turn around for the better. So, I hope for that quick, positive turnaround, but I’m content, knowing that we are where we need to be for now.

Pizza for Breakfast

In the last 24 hours, Lily has been a lot more comfortable. Her heart rate and respiratory rate are down, almost normal for her during an illness, 90s – 120s for heart rate and 50s-70s for respiratory rate. We had weaned her O2 down as far as 40% and 8L; however, during the night we went up as high as 80% during a spell. She’s back down to 55% O2 now.

She moved up from PICU to the ICU step-down unit, and she was able to eat for the first time in a couple of days. Poor little sweetie was so hungry. And, doggone it, if she wants pizza for breakfast, then I guess pizza it is (she’s eating fruit and drinking lots of fluids too). (I do miss my own healthy cooking, but there’s something to be said for room service too!)

As I mentioned, Lily had a spell during the night. Her lower lobes had diminished breath sounds throughout. In fact, for a time, we couldn’t hear any breath sounds at all, just a few crackles here and there. The RT and nurse gave Lily an epi neb (epi is adrenaline,…the way it works is that it holds the trachea rigid, so people can be more effective coughing out the mucus). At that point, Lily really wasn’t moving any air in her lower lobes, so we gave her an extra, slightly more aggressive, vest treatment.

Have I mentioned that Lily really doesn’t like her vest treatments? She doesn’t mind so much at first, but by the time they reach the last (most aggressive) setting, she’s ready to be done and says her tummy hurts (from the pummeling). If I sit behind her during the treatment, she seems to tolerate it somewhat better.

So, following the vest, her breath sounds were still diminished, but at least Lily was moving air a little bit more.

Her labs look good.

Her chest x-ray shows a little more cloudiness on the left today. Lily is definitely not out of the woods yet. We just have to keep being aggressive, and hope and pray she doesn’t get any worse.

Yesterday was a good day. Today, I’m tired. I might be coming down with something too. I’m drinking tons of tea, pushing fluids, and using my neti pot, but this lack of sleep isn’t going to keep my immune system up for long.

Mark and the other girls (especially Mark) are feeling pretty rough at home. Elise is managing okay, but Leah feels achy and uncomfortable. Mark is completely miserable.

Oh, and for as sick as Lily has been, she’s also been using her potty very well! Aside from a couple of accidents overnight (which I expected due to the fact that she’s getting IV fluids all night), she’s been completely dry!

We've really appreciated all of the thoughts and prayers...more than we could ever say! Thank you!

Be Still

Many of you know that Lily is very sick and in the hospital PICU right now. She’d had some mild cold symptoms for a couple of days, but nothing terribly worrisome. At 2 am on Wednesday, she crawled in bed with me and woke Mark and I up with her croupy coughing. The nebs seemed to help, but 2 hours later her respirations were 100. After another neb, they were down in the 60s again. (I know 60 seems high to many people, but it’s not so bad compared to 120!) We continued nebbing every 2 hours, and Lily managed okay.

Wednesday around bedtime, I noticed Lily’s respirations were staying in the 70-90 range pretty exclusively. After her 10 pm neb, I started seeing retractions, which I hadn’t noticed before. At that point, I packed a bag, knowing we were going in.

The ER experience was perfect! We had a great doctor who was very on top of things, an excellent nurse who got the IV in on the first try. And, we were in our PICU room within 2-1/2 hours of arrival. I think that’s practically unheard of!

We got Lily settled into her new bed, vitals were taken, cardiac monitors were hooked up, I was standing by Lily’s bed, holding her hand, when I noticed the HR on her monitor shoot up to 200+, and I quizzically remarked, “Is that reading correctly?” The nurse turned around, pushed a button, and said 4 words no parent ever wants to hear: Bring the crash cart!

My heart leaped into my throat, and my throat closed up. I moved up to Lily’s head, so I could still hold her hand, but also let the doctors and nurses do their jobs. Over and over I prayed that she would be okay. Leaving the hospital without her just wasn’t an option!

Let me get this out of the way now. H1N1 has me freaked out. I read stuff on Dr. Mercola’s site where he says this flu has really been blown out of proportion. Only those with underlying health problems have died from it. People just need to let their immune systems fight it off. Yes, I’ve seen all that, and still, I’m not comforted. You see, the whole “survival of the fittest” mentality really isn’t cutting it for me. This is my baby we’re talking about! Asthma or not, tracheomalacia or not, I want her to grow up to live a long, healthy life!

Before we left the house, I had a near freak out incident while I was upstairs packing my bag. As I was leaving my bedroom, God spoke to me. He said, “Be still and know that I am God.” (Psalms 46:10) Then He said, “Be anxious about nothing…” (Philippians 4:6)

All of last night, those words became my mantra. Anytime I felt myself starting to worry, I repeated, “Be still and know that I am God.” These words were repeated many, many, many times in the course of the last several hours!

Within a minute of her v-tach episode, Lily settled down again and her readings were normal. The intensivist said later that he thought the episode looked “artifactual,” which I presume essentially means “false reading.” The nurse certainly thought it looked real, but only God knows for sure. Either way, I’m thankful the rest of the day has gone well.

Diagnosis is pneumonia, Influenza A, and likely H1N1 (although we don’t have the results back from that test yet). Lily has been on 100% oxygen and 8 L of flow on the MR-850 or high flow oxygen. She is still receiving nebs every 2 hours, and they’ve been doing vest treatments every 4 hours.

O2 was just weaned down to 80%, and she’s tolerating it well so far. HR and RR are both lower, and Lily looks more comfortable overall. I’m not going to say we’re over the worst because I know things could take a turn at any time. For now, I’m just being still in the knowledge that God is God.

I have a new addiction...

....to decorating blogs. Seriously. Smitten.

Here are a couple of favorites...

Thrifty Decor Chic

Centsational Girl

And, this is probably the most amazing re-do I've ever seen! No joke! You must check it out!

Not Me Monday!

Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

Have you ever made little notes in your head about things to include in your "Not Me" post, but when Monday arrived, you decided you were simply too tired to be bothered with posting anything on your blog at all? Yeah.....me neither.

And, a few weeks ago, when I took Elise to the dentist, the dental assistant (and her assistant) did not have to carry Elise back into the office while she (Elise) kicked and screamed, "You are mean people!" Nope, that totally didn't happen, no matter what the witnesses may try to tell you!

Moving on....

Twice in the last week, there is no way I was caught with my pants down unprepared for potty accidents while out on the town. No, I did not reach around to unbuckle Lily from her carseat only to encounter dampness on her jeans, after she had just gone potty before leaving the house. We walked into the clinic, and, thankfully, I never had to usher my 3 children directly to the bathroom in order to change Lily out of her wet items. I did not place any wet items into the sushi wet bag (loaned to me by a friend), nor did I give her a sponge bath with flushable wipes before putting dry undies and rubber pants on her. Last, I am so glad I did not have to think fast and have her step into her hoodie like a skirt, zip it up, and tie the sleeves around her waist. And, Lily did not perform all of her PT exercises pants-less. Nnnnope! Oh yes, I am so glad I am always prepared for these incidents! In fact, I'm a regular Girl Scout! (or is it Boy Scout? What-ev...)

Yesterday, after my daughter told me she'd had a potty accident at the apple orchard, I didn't just let her keep picking apples since she was already wet, allow her to ride in her carseat all the way to our next stop (because I hadn't forgotten about it), then ask my husband, while we were walking in, if it was really obvious that Lily was wet. No, I would never do that! Seriously, I am way more on top of things! And, thank goodness for clean jeans in the diaper bag! Thank goodness for that!

Oh, and I never ate chocolate raspberry cake for breakfast! Not me!

If I could find...

Alternately titled: Leah-ism #5,321

"If I could find a strawberry ice cream cone that could move and talk, I would marry it!"

Now, that would make for a tasty son-in-law. :-D