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.

Sugery and more surgery

Tonsils AKA "Ice Cream"

Leah had her tonsils and adenoids removed on Monday.  We checked into the hospital at 6:15 am, and we were home by noon.  She was very brave.  Several times after finding out she would need to have them taken out, Leah asked me about the surgery and what would happen to her.  I explained the best I could.  Thankfully, or sadly, depending on your viewpoint, we have a much greater understanding of how the surgical process works than the average folk.  I was able to explain to her all about checking into the hospital, anesthesia, (I skimmed over the cutting out of the tonsils pretty fast) to mommy and daddy being able to be with her as soon as she woke up, to getting lots of ice cream and popsicles and pain medicine to help with her sore throat.  

On the day of surgery, Leah told several people that she was going to have her tonsils taken out.  She happily played with Barbies, My Little Ponies, and the doll house while we waited for the OR to be ready for her.  Following surgery, Leah got to pick a movie to watch (she chose Cinderella) while having her popsicles.  Waking up to an IV in her arm was an unpleasant surprise for her, but I am always thankful they don't put them in until the kids are asleep from the gas.   

You know your kids have been in the hospital one too many times when they start counting all the things they want to do WHILE there.  I think Leah had the idea she would be there LONGER.  So, when the nurse told us we could go home if we were comfortable, Leah said, "No, I want to watch another movie and play with play-dough."  She was also rather disappointed that she didn't get to keep her hospital jammies.  (Lily has a couple of pairs of them from our numerous trips and stays).  

All-in-all, we've had our moments, but Leah has been a trouper.  She hates the liquid pain meds though, so sometimes I have to make her take them.  When she starts spitting out her saliva instead of swallowing, I know we've gone too long between doses!  Poor baby.  

Our week has been filled with coloring, rainbow sherbet, PBS, popsicles, Wall-E (it came out on DVD Tuesday), juice boxes, Anne of Green Gables, more popsicles, more sherbet, and lots of snuggling in our jammies.  Oh, and ice packs!  Thank goodness for the ice wraps Mark bought for his knees several years ago.  They've been a lifesaver!  

On to More Surgery

My mom had surgery Monday as well. (No, we didn't plan it that way!)  She had an elbow scope to scrape out the scar tissue that had developed there.  Her surgeon felt that was, perhaps, the reason my mom's range of motion has been exceedingly slow in returning.  Even almost 6 months post op, she still really hadn't been able to increase it.  The pain had gotten much worse too and was radiating into her shoulder.  

It's been a couple of days since I talked to my mom, but even a few short hours after surgery, her range of motion had improved.  She also told me the pain was less than it had been since the injury itself.  We hope and pray this takes care of it, and additional surgeries won't be needed.  

Sick days...pics of Lily from the last couple of weeks

This pic was taken of Lily the Tuesday we went to the hospital.  I took it during the day.  I think it was the only time she smiled the entire day!  As you can see, her O2 sats are only 91% on O2, and her HR is also elevated.  When she's feeling good, her HR is usually 80s to low 100s.

One of the mommies on my mommy board sent Lily this puppy (Bernie) the last time Lily was in the hospital back in Feb (when she was in the PICU for a few days).  Lily loves her puppies.  

This was taken during a neb and vest treatment after we were in the hospital.  As I've mentioned before, the vest basically shakes her up, like she's in the spin cycle of a washing machine.  But, I can't knock its effectiveness!  

All 3 girls in Lily's "doctor bed" playing with play-do.  The Child Life specialists must have the best job in the whole entire hospital.  People cheer when they walk into a room!  :-)

Elise

This is what happens when Lily gets Harlequin Syndrome.  Half of her face (right down midline) gets red (sometimes tomato red, and sometimes faintly red) and sweaty.  It's happened a few times post-op and a few times when she's been outside exerting herself in the heat.  This was the first time it happened when she was sick, and this happened several (maybe 5) times in just a few days.  This time, Lily's face was pretty red, but it's hard to get pictures of.  You can see the line distinctly, but the color is more washed out than it was in person.

Here she is at home with her new MR-850 set-up.  We've only used it a couple of times so far, but I'm hopeful that it will be a good thing to have around over the winter months.  

My understanding is that the flu/RSV season has begun a bit earlier than usual this year.  I hope and pray we have an easier time than last year!  

Hospital

After my last post, on Tuesday, we had to take Lily into the hospital.  I kept her home, doing everything I knew to do, until that evening, but nothing was working.  Lily's respiratory rate (breath rate) was becoming more and more rapid.  Her coloring was very pale, and we just weren't seeing much improvement.  By 3:00 am, Wednesday morning (24 hours after I'd been awakened Tuesday morning) we were settled into our hospital room on the ICU step-down unit (it's really nice there, like the Hilton of the hospital), and both Lily and I got some sleep.  

Lily had a lot of trouble keeping her O2 levels up, especially in the morning.  We ended up doing vest treatments with her nebs, which helped a lot, but wasn't getting her over the hump.  Saturday morning we adjusted her neb schedule, and by that evening Lily had perked up significantly.  Yesterday morning, I asked what we needed to do in order to get Lily home, so Mark would be able to go back to work today.  

We were able to get Lily weaned onto a straight nasal cannula (from the heated humidified O2, MR-850), but our DME (Durable Medical Equipment) company did bring out an MR-850 set up in case we need it.  

Mornings are the worst for Lily, and this morning was no exception.  I did switch her to the MR-850, but it wasn't enough support within the parameters I was given.  I think Lily is finally coming around though, thank goodness.  It's amazing how fast kids can get sick, and how quickly they can rebound!  

I'm just so glad to be home!  Now, hopefully we can stay here and have a healthy remainder of the flu/RSV season!    

And another hospital visit...

Last Thursday night around 11 pm, Lily woke up coughing and coughing again.  I gave her a neb, but it really didn't help.  After waiting a bit, I decided to give her another neb, and try some CPT's (chest physiotherapy....basically pounding on your chest with a little rubber cup thingy...they use it with cystic fibrosis patients to help break up the mucus so it's easier to cough up).  Still didn't really seem to help.  Her cough was so harsh and unproductive.  Her sats kept dipping until she was on 5L of oxygen, and not keeping her oxygen sats above 90%.  I woke Mark up (he was in the other room with Leah because Lily was in our bed with me), and told him we needed to call the ambulance. (We also brought her downstairs and put on the non-rebreather mask, so she was on 8-9L of O2 total, which stabilized her until the ambulance got here).    

By the time the ambulance got here it was midnight. (Worst ambulance trip ever, but I won't go into that.)  It took awhile to get settled into the ER (5 pokes to get an IV in....it WAS in TWICE, but one time I'm pretty sure either the nurse or the EMT helping infiltrated it because they were messing around trying to change the tape and clean the area after they let Lily bleed all over herself....I almost refused to let them try anymore, but I really wanted her to get in a dose of solu-medrol - IV steroids, and the 5th time was the charm, thank GOD).  They did 3 nebs 30 minutes apart, and the nurse was running in saline nebs the rest of the time.  We were able to maintain Lily's sats with 15 L of O2 on a non-rebreather mask.  The doctor said the chest x-ray was unchanged from 2 weeks ago, still pneumonia/fluid in the left lung and areas of atelectasis or partial collapse.

We moved up to the floor, and when we switched Lily over to the MR-850 (heated, humidified O2 that can be bled in at a higher flow through a nasal cannula), her sats dipped into the 70's.  They increased the flow to 12L and 100% O2, so we were basically maxing out on the oxygen we could give her.  Her respiratory rate was in the 80's and 90's, and she was retracting all over, so the nurse called a Rapid Response.  Within a minute we had 2 RT's and a PICU nurse in the room talking about what to do.  It was decided that continuous nebs might be helpful, as it really did the trick last time.  However the intensivist came up to see Lily (this particular one doesn't normally see pulmonary patients), and he felt that her lung sounds were pretty clear.  He said she didn't need continuous nebs.  I explained that she was sleeping, and once she woke up and started in with the coughing and crying, we'd have to work that much harder to catch up again.  He still felt that everything was upper airway, and she just needed to cough it out.  I wasn't very happy with his assessment, but I decided to wait until the other docs came in to relieve the night shift before I said anything else.  

Lily and I slept for about an hour and a half before the pulmonologist came in.  She ordered a chest x-ray, which came back showing even more fluid in the left lung (about 2/3 of her left lung was full of fluid).  She sent us down to the PICU to see whether or not we needed to consider CPAP or BiPAP (CPAP is continuous positive airway pressure...it can be delivered through a mask and is used for patients with sleep apnea, as it helps stint the airway open.  BiPAP will also give you breaths, like a ventilator).  

When we got down to PICU, the intensivist said to me, "She's here because we need to decide whether or not we need to intubate her." (Place a tube through her mouth into her airway to help her breathe) I nearly freaked out at that!  I kind of had to make myself not think about it so I could focus.  He said he wanted to observe her for a bit to see what we needed to do.  Meanwhile he ordered 3 nebs 30 minutes apart - epi, xoponex, and epi.  Epi is short for epinephrine or adrenaline.  It's very effective with kids who have tracheomalacia (floppy cartilage in their airway) because it kind of opens things up and makes the airway rigid.

The epi nebs made an immediate difference.  I noticed that her cough was a bit more effective.  We also started doing some really aggressive CPT's or "vibes" with a special vibrator and something I think they called "tussive squeezes" (not sure if that is the correct name, but basically they squeeze/shake over the lung fields to kind of break up the mucus so it can be coughed up).  All of these treatments were extremely effective, and we didn't end up needing to intubate.  

By Saturday, Lily was asking for crayons.  She colored for 10 hours on Saturday and again on Sunday.  They transferred us to a regular med surg floor on Sunday afternoon, and we went home yesterday afternoon.  (I should say that from Saturday through Tuesday around noon-ish, Lily colored, drew or painted for about 34 hours!  NO exaggeration there!  You should see the stack of artwork I came home with!) 

Lily is still on some O2 (1-3L).  She's on oral steroids for the next 10 days and antibiotics for the next 7 days, but she's doing better.  I'm also doing nebs every 4-6 hours and BDs/CPTs when she's awake.  It's nice to be home though!  Now, we just have to hope and pray she can get over this and give her lungs a chance to heal.  

I'll try to post pics again at some point, but I haven't had much to take pics of lately!