again.

September 11th started out as a normal day.  I spent hours folding laundry, while the boys played, Caroline "helped" me, and I watched documentaries about 9/11 on The History Channel.  Caroline had a bit of a runny nose, but was a happy girl, eating, running around, and being herself.

By early afternoon, I knew it was happening again.  She was having a hard time breathing, her chest was retracting, and there was some tugging in her throat.  I started giving her breathing treatments, hoping this time it would make a difference. Rick had been out-of-town all week, but ended up coming home later that afternoon. When he walked in the door, he took over while I ran Emma to ballet, and gave her a couple more breathing treatments. I was praying hard that she wouldn't have to go in the hospital again, and these treatments would kick in. When I got home an hour later, she was worse.  Nothing was working, and I could tell she was on a fast downhill path.  I'd been down this road before, so I put on some yoga pants (last time I was in my pajamas), packed my purse with a few granola bars, my iPad, my computer, and my chargers.  Just in case.  

It was only three weeks earlier that we had been through these same motions.  Instead of going to our local hospital, where I learned last time after our ambulance ride that they weren't equipped to handle the situation, I drove straight to downtown Buffalo, to the Women & Children's Hospital.  It's about a 45 minute drive, but I knew it would be better overall.  We got to the emergency room, and it was packed.  Fortunately, they saw her distress, and immediately took us into triage.  After a few minutes, and after learning she had been here for the same thing just three weeks before, we went straight to a waiting room.  They were SO fast.  The doctor was in there quickly, nurses were in and out, a respiratory therapist came, and soon she had an IV and getting a treatment.  It was apparent very quickly that nothing they were doing there was making much of a difference, and her chest was severely retracting.  She was working so hard to breathe that her head was bobbing, and she was really upset.  After less than two hours of arrival, she had been admitted to the PICU.  

Their  first line of attack was what they did last time she was there--a cannula in her nose that would give her oxygen, and also deliver strong doses of medicine.  She also received steroids and fluids in her IV.  It didn't even touch it.  She was still getting worse.  

The next step was something called RTX Ventilator, or the "turtle shell". It literally looks like a turtle shell, clear in color, that straps to the front of their chest.  It applies negative pressure to the chest when patients breathe in, which helps expand the chest. It also applies positive pressure to the chest wall when they breathe out. It's actually fairly new, and this hospital has impressed me with their cutting edge technology. They started her on this to avoid intubation, which they never do unless they absolutely have to.  After only a few hours of wearing it, while upping her meds at the same time, she was deemed to be in Severe Respiratory Failure, and they decided she had to be intubated. She could no longer breathe on her own. It was 5:30am, and we had only been there since about 10pm.  

Normally parents don't watch the intubation, but I insisted. About five doctors were in attendance--the fellow did the intubation, while several residents of varying levels were there, plus her nurse.  They prepped, double checked their supplies, and gave her a short-lasting paralytic through her IV so she wouldn't move at all while they were intubating her.  It was very controlled and smooth, and it went really well. She looked so calm, but I can't explain to you how unsettling it is to see your baby asleep, with tubes everywhere, and knowing she is so sick that she's on life support--because she literally can't breathe on her own. She was on several types of narcotics to keep her sedated, because it's imperative that the patient is totally still with the breathing tube in. 

After only a few hours, she proved to be a difficult patient when it came to sedation.  The doctors were doing rounds, and had just finished discussing her. They had moved to the next curtain over, and were just about 10 feet away (which proved to be a huge blessing) when all of a sudden, one of the nurses noticed her hand go straight up in the air.  He dashed to her crib, but he wasn't fast enough--she had pulled out her breathing tube.  All of a sudden, the place literally went crazy.  At least 10 people immediately surrounded her crib, and were talking fast and loud.  They told me to leave--that I could not stay, but that someone would come get me when everything was okay.  I don't know exactly what happened, but I do know that they had to emergently replace her breathing tube, which simply could not be done as smoothly and quietly as it had the first time.  It was more traumatic, and other complications could arise. I had managed to stay pretty calm until then, but I totally lost.  It freaked me out that they wouldn't let me stay--and it was quite brusque when they talked to me.  I could tell that the situation wasn't good, and that scared me.  

After about an hour, they came to get me in the parent waiting room.  When I came back to her crib, she looked very peaceful again, and I just stood and held her hand until I couldn't stand anymore.  I was so tired--I hadn't slept all night, and it was about 11:30 in the morning, but I couldn't rest.  Not yet. Finally, after lunch I fell asleep, but it didn't last long.  I woke up to the most horrible sound, and saw Caroline, purple-faced, awake, and coughing hard. It was a silent cough, because of the breathing tube, and it looked horrible. Her face was contorted, and it looked like she was choking to death.  Her nurse ran over, and I had to hold her down while the nurse suctioned out her tube.  The coughing is actually a good thing--it gets rid of the secretions in her chest--but because of how sick she was, it was making her breathing worse.  They upped her sedation, but she soon proved to be extremely difficult to sedate.  It happened over and over again, all day long, until they finally decided to medically paralyze her, so she couldn't cough, and get some rest.  

I slept for a long time after that, finally knowing she would be okay, at least for the time being.  Rick came that night, and brought me my things, so I could shower.  He also brought dinner, and stayed for a little bit before heading home.  He couldn't leave until after the kids went to sleep, and with a 45 minute drive each way, couldn't stay too long, but it was good to see him even for a little bit.

The next couple of days were about the same, but once she went off the paralytic, we were back to holding her down every time she coughed. I couldn't leave her side--not to eat, or even go to the bathroom very often, and I just waited until Rick got there each night.  They were still working on her sedation, but she was stubborn! She even woke up when I had dashed to the bathroom, and tried to flip out of her crib!!  Thankfully, the grandmother of the patient next to us saw her, and yelled to a nurse (the same nurse we had the day she took out her tube), and he came running over. I came back to more doctors and nurses, trying to figure out how to keep her sedated.  They didn't want to paralyze her again, because she really needed to cough to get the incredible amount of secretions out of her chest--it was what would help her improve. The nurse's name was Frank, and he was a favorite.  He was a big guy, a dad, and in his late 40's.  So funny, and SO good at his job.  We loved him. 

 The second day they inserted a central line, which is an IV inserted into a central (large) vein, as opposed to a peripheral line, which goes into a peripheral artery (the most common type of IV). It requires a sterile environment, and stitches to keep it in place.  They put hers in her femoral vein, near her groin.  Again, I asked to stay, and after telling me I couldn't faint, and me telling them not to worry, they let me stay.  I had to mask and gown, and I watched as they gave her another paralytic (short-acting, to ensure she wouldn't move at all) as one of the fellows did the procedure. Peripheral lines don't last as long, and a central line makes it easier to draw blood and give meds without worrying they would lose a line.  The kids were really worried about her, but they couldn't come see her.  They asked to FaceTime with me, so they could see her, but I was worried about them getting scared because of all the tubes and machines.  Her kind nurse covered them up with a blanket, so nothing showed, and then we were able to talk for a little bit.  It really helped them feel less anxious.

They also finally diagnosed her with Bronchiolitis (which is called viral pneumonia when they're over two years of age), and she after two blood cultures came back positive, with Bacterial Pneumonia.  She was immediately on an antibiotic through her central line, and would remain on it her entire PICU stay. She also got a bath!

After three days, she was ready to come off of the ventilator--at least they were going to give it a try,  Her  chest was sounding really good, and they felt like she had improved enough to see what would happen.  Immediately after they took her off, her head was bobbing again, and severe retraction in her chest, and tugging in her throat.  This time it wasn't her chest or lungs, it was her upper airways.  It was due to the damage done when she self-extubated, because it ripped her airways on the way up.  She also thrashed a lot when she would cough, and when they were trying to keep her sedated, which also roughed up her airways.  They were so tight and closed, that very little air was passing through.  She had a severe stridor, which is like a squeak, also due to the closed airways.  They really didn't want to intubate her again, but they told me it was a possibility. They tried a couple of things that didn't work, and finally tried CPAP.  They strapped it on her head and across her mouth and nose, and I didn't think there was any way she would keep that on, since she was constantly pulling out the cannula from her nose  But she was quiet and calm, and completely relaxed--finally, she could breathe.  She worse that for 24 hours.  Her little face got puffier and puffier, and soon I could barely recognize her. But, she was getting better, and that's what mattered.  

After the 24 hours were up, she was like a different girl.  Still breathing hard, but not enough to require the CPAP anymore.  One step forward...one step back.  I also noticed that morning that one of her legs was quite swollen, from her feet all the way up to her leg.  It was also mottled in color, and very different than the other one.  The nurse called the doctor, and an ultrasound was ordered.  Within a couple of hours, the attending physician from hematology came up to talk to me, and told me that she had a good-sized clot in her right leg, which more than likely occurred because of her central line.  They immediately started in her twice daily shots of Lovenox, which will continue for a minimum of three months.  Poor girl--just when we got one thing solved, another came along.  

We also started encountering withdrawal symptoms that day.  They told me they could happen, and mostly likely would--especially due to the amount of drugs they had to give her to try and keep her sedated.  It was HORRIBLE. I've heard about withdrawals before, but never in my wild imagination did I realize how bad it could be.  This poor girl had been intubated for a relatively short period of time, but she had just had SO MUCH--and several different kinds.  Her pupils were dilated to the very edges of her eyes--they were totally black.  She stared into space, was very agitated, was throwing up, and diarrhea, wouldn't eat or drink, and had severe insomnia.  She did not sleep for 72 hours. It was literally the hardest thing I've ever done.  I slept for about an hour and a half one night, when our nurse had a lighter load and rocked her the whole time.  I didn't eat, didn't sleep, just stood and held her hand.  

After 48 hours of not sleeping, they moved us to a different part of the ICU--a section that's used as overflow. They actually hadn't used it in over two years, because it hadn't been busy enough. But the hospital was CRAZY busy.  The whole hospital was filled to the brim, and the emergency room was more than overflowing.  They were calling in nurses from other hospitals, they were all working double shifts, and kids just kept coming in sick--mostly with respiratory issues, and the nasty virus sweeping the nation. The ICU was so busy, never quiet, and always light and loud.  The main part of the ICU is really just a huge room sectioned into individual rooms with side curtains. The front of the "room" is open to the nurses and desks, hallways, and anyone walking by.  There is a curtain that can close across the front, but they are never closed. The patients are usually critical enough that the nurses have to have eyes on them.  My "bed" was actually a chair that laid almost flat, and was right up against the curtain that separated us from the next room.  One night a life flight came in with a one year old girl, and she came in to that room next to us. It was around 1am, and nurses and doctors and paramedics were in and out all night and morning.  Since Caroline wasn't sleeping anyway, it ended up not mattering, but it was just so loud.  Even if she had wanted to sleep, I don't know if she could have.  Everyone was doing the best they could, and we had fantastic doctors and nurses, but they were swamped.  It was all over the news, and it was so interesting to be in the middle of it, and hear it from a reporter's point of view.  

Finally.  After 72 hours, she slept.  She fell asleep with me in the bed about 8pm, and slept until 8am. It was the BEST night's sleep I've ever had. In my entire life.  She started eating a little, although her throat still really hurt her.  I gave her her second bath (the first was when she was sedated), and the light at the end of the tunnel started to be visible. She was on a drug called Methadone, which was helping with her withdrawals, and would slowly wean her off of them.

Nine days after being admitted, she was moved to the regular floor, which was a GREAT sign!  Not needing critical care anymore was a huge step, and we were glad to be that much closer to her being better and us going home.  It was also SO quiet.  We were at the very end of the hall, the only room there, and Caroline was able to sleep really well.  They wanted to have her sleep in a crib, but I tried putting her in there, and it's like she had PTSD from being in the ICU--she freaked out.  I just couldn't make her do it again. So, we traded out the crib for a bed, and she slept with me.  She was still under restrictions when we first arrived, so she couldn't leave the room.  Entertaining a 17 month old in one room, on a bed, while attached to a million wires, was nearly the hardest part.  One one hand, I was so happy she was feeling better, but it made for very long days.  At least I had a bathroom, although it was kind of funky. It was the same door for the room, and for the bathroom.  Weird, huh?  It just swung open, and then closed into the frame of the bathroom.  So, either the door to your room was open, or the door to your bathroom.  I really couldn't leave once we were here though, because she was always awake, and even when she napped, I was afraid she would wake up while I was gone. I didn't leave that room for 3 days!  

While we were there, they were still weaning her from the Methadone, and we couldn't leave for four or five days until they felt it was totally under control.  They were also trying to get the right dosage for the Lovenox, which meant two doses, then a blood draw four hours later, to check the levels.  Her central line had been removed, and her veins were incredibly difficult to insert an IV.  They had to call the stat team every time to try and get an IV in, or to draw blood.  No one could get it on the first try, and she had so many pokes, I could barely see the tops of her hands, wrists, and inside of her arms because there were bruises and poke marks.  Her feet didn't escape either, although they couldn't  do anything in the leg with the clot.  We also went for a sweat test to check for Cystic Fibrosis, and that was fun.  :)  Thankfully it came back negative, which is what we all thought, but it was good to get it checked off the list.  We were visited by the Lung Center several times, and I told her story at least 45 times.  They called her a "puzzle", and they couldn't figure out why it kept reoccurring.  She met some criteria of certain things, but other criteria (major ones) she didn't at all. Immunology came back clean, which was also a relief. 

After a few days, her restrictions were lifted, and we could leave her room!  They had a playroom on that floor, with a ton of toys and books.  We were literally the only ones in there for days.  Every other child on the floor was on restriction, so they couldn't leave!  I would take my computer with me, and sit and do a little work for a few minutes here and there--it was a good distraction for me, and I was working on a major project (and had been for months) that was set to be released in a couple of weeks.  The bloggers I was working with were completely and totally understanding that I had to take some time off, but I figured if I had a few moments, and Caroline was happy playing, then I could take advantage of it.

She was the belle of the floor. (She had been in ICU too!)  Seriously.  She had the cutest scrubs on, ponytail on top of her head, with a bow, of course.  :) She walked around the halls on her tippy-toes, smiling and charming the pants off of every nurse, doctor, and therapist around.  She had several nurses bring her presents, and the doctors were pretty much eating out of her hand.  Clearly she's not just the queen bee at home, lol.  We walked all around the halls, and she would fist bump or high five everyone she met.  I was just amazed at the total transformation that had taken place in the past two weeks, considering where we started from.

We also made friends in the hospital, starting in the ICU.  When you are in such close quarters with people, and pretty much hear every single thing that goes on, you get to know them quickly.  One particular family has a special spot in my heart, and we are still keeping in touch now.  It's the most darling Amish family--parents with two young boys, age 2 and 5 weeks.  The mom was driving the buggy, and was hit from behind by a large truck.  It threw them all out of the buggy, including the 5 week old baby.  The mom and the 2 year old were okay--a few scrapes and bruises--but the baby was in serious  condition.  He came by ambulance to ICU, with a brain bleed.  I met his parents, brother, and grandmother in the parent waiting room, and we hit it off.  We were soon conversing on a regular basis, touching base about certain tests, and seeing how each of our children were doing. We prayed for each other, and talked a lot about that.  We left the ICU within a day of each other, and ended up just a couple doors away on the 8th floor.  I was so happy to see them!  They ended up leaving the hospital before us, but not before we exchanged information--no phones, just addresses.  I think we were blessed to have each other.  Actually, I know so.  

FINALLY.  Two weeks after admission, we were on our way home!!!  To have her healthy, to breathe fresh air, to see my other kids (that I hadn't seen the entire time), to be HOME--it was wonderful.  We were so blessed that entire time.  I was overwhelmed by all the love and support that poured in. I don't usually post about things like that on Facebook and other social media, but this time I decided that Caroline needed some positive energy coming her way, and any extra prayers that could be spared.  I knew it could and would make a difference.  Messages of love and support just poured in, and I can tell, they were big part of what kept me going.  I would sit there and read them, looking at her lying so still and so sick, and felt peace.  Her name was in at least 30 temples, and probably even more than that. Rick was amazing, and stepped in to handle the home front while I was gone.  He took care of kids, worked all day, did the afternoon/evening routine, then drove each night to bring me dinner and whatever personal items I needed. Women from church took my boys every single day, from 8am to 2:30pm, so Rick could go to work.  Meals were brought in, even though Rick said no. :) He said they couldn't be stopped!  One of Ryan's high school teachers brought dinner!  Yes, I couldn't believe the thoughtfulness.  Our neighbors, that we had only known a week, sent flowers.  The girls' teachers both sent notes to me at the hospital.  Their principal e-mailed me at least three times to check in, and even sent me a picture of the girls on a day they were feeling sad and were giving her extra hugs.  We got notes from kids in their classes, and I received texts and messages from church members I had never hear of before.  I literally had only been to church twice (due to travel and sickness) in the five weeks we had lived here, and knew only four or five people.  It didn't matter--they reached out, and did everything they could to help us through a very difficult situation.  Friends and family were there with extremely appreciated and kind offers to drop everything and come, and I knew that I could and would absolutely take them up on it if we needed it.  Sasha was a lifeline as a doctor, who could explain medical terminology and procedure, talk me through hospital protocol,  and tell me straight out how serious things are--which I appreciated. SO many people, SO many prayers...My heart was, and is still so full of love and gratitude for every single person that helped, whether physically or emotionally.  

Now that we're home, she is still on twice daily injections of Lovenox.  A nurse comes once a week, and we have lots of appointments with Hemaology and also the Lung Center to help figure out what we can do to prevent this from happening again.  I am scared to death of the winter, and hoping that we can avoid hospitalization.  We got the all clear from the doctor, who also told us that we need to live our regular life--that we can't keep her in bubble, despite the fact that I think I would if I could.  

So, we're back to normal.  As normal as we can be. I still thank my Heavenly Father every single night that she is home with us.