Monday, April 23, 2012

Grayson's Hospitlization Part 2: The PICU

So when we last left off, we were being wheeled up to the PICU on a gurney.  Once we got to the doors of the PICU, we were informed that we could not be in the PICU while they were admitting him and we had to wait in the waiting room until someone came to get us.  They said it should be around 10 or 15 minutes.  At that point I had to get off the stretcher and lay him on it to be wheeled back.  It was so sad and scary to see my tiny 19 day old laying on a stretcher by himself and not being able to be with him.  At this point we didn't know what he might look like when we saw him again because we still did not know whether they would have to intubate him or not.  They opened the big double doors and wheeled him away and we went into the PICU waiting room.  It was so surreal.  This is the first time that I really  let my guard down and let the enormity of what had happened over the past two hours sink in.  I just sat in a chair and cried and cried.  Some nice family member of someone who had a child in the PICU brought me some tissues and the receptionist for the PICU came out and asked if we needed anything or wanted some privacy.  Obviously, every family that was sitting in that waiting room had been in the exact same place that I was and could relate to what I was going through, but it is a bit like being in a cage.  You can tell that you are being watched and it is human nature to wonder what has happened to send you to the PICU, lord knows I wondered that about every face I saw in there.  The receptionist took us back to the family counseling room and told us that she would let them know we were in there.  Once in the family room I calmed down considerably, but then I realized what room I was in.  In my mind, the family counseling room might as well be called the room they take you to to tell you your baby is going to die.  I didn't think that that was going to happen, but it still freaked me out and I wanted to get out of there as quickly as I possibly could.

After we had been in there for about 20 minutes, I sent Stephen out to find out why they hadn't come back to get us and when we would get to see him.  After he left, a social worker from the PICU happened to walk by and see that the door was opened.  She poked her head in and asked what I was doing and if I had a child in the PICU.  I told her that my newborn was in the process of being admitted and I had sent Stephen to figure out what was going on.  I am so glad that she stopped in the room because she was able to tell us about the PICU and what to expect.  I will admit I was really nervous.  I had obviously been in the NICU before but I was scared about what I would see in the PICU.  In the NICU, you obviously know that there are critically ill babies in there, but the most you hear is the sound of a newborn crying.  The PICU is a whole different ball of wax.  Your 19 day old could be across the walkway from a 19 year old who is next to a 9 year old etc.  Let me promise you this, a 9 year old or 5 year old or whatever age is very aware of pain and being scared and the sound of them screaming and crying was more than I could handle.  I will never forget what that sounds likes and I hope I never have to hear it again.

The social worker explained how the PICU worked and told us to just focus on our baby and to not look around at the other babies too much because that would make it too hard.  Of course, again it is human nature and of course as soon as you step through those doors you are staring at every other child in there and wondering what is wrong with them and what their story is.  The PICU at Children's is one big open room and there are beds and cribs lined up in rows with curtains in that can be pulled in between them, so you see and hear everything that is going on around you.  Very unsettling.  After the social worker had explained everything to us, she said that she would take us back to see Grayson.  We walked through the PICU doors and rounded the corner and the first thing I saw was my dad standing there.  It was such a tremendous relief to know that he had been there with him while we were not there.  My dad didn't realize that we were not allowed in with him during admission so he just walked right in and they pointed him to his bed.  That is the miracle of the white coat.  If I ever have a child in the hospital again, I am going to borrow a white coat because you get to go wherever you want to go, no questions asked.

When we got back to Grayson's bedside he was like a new baby.  He was resting much more comfortably and was breathing easy enough that he could even suck on a paci.  He was still very sick, but it was evident that we had avoided intubation.  Such a relief.  The had him on 30% oxygen and he really seemed to bounce back well.  We met with the doctors and our nurse and then we just sat at his bedside.  Since the PICU is an open unit, you can not sleep in there with your child.  There was one glider bedside and then they pulled up an office chair for Stephen to sit in.  Stephen and I sat down and started to process everything that had just happened and started notifying people of what was going on.  Eventually, I needed to pump and Grayson was doing so well, that I went downstairs to the lactation room on the ground floor.  After I was done, I was getting out of the elevator when I saw Stephen walking out of the PICU with all of our stuff.  I was confused because the PICU wasn't supposed to close visiting hours for another hour.  It turns out that while I was gone a baby had coded in the PICU.  Not only did they obviously shut the unit down, but it just so happens that the crash cart was apparently located directly behind Stephen's chair.  He said one minute he was just playing on the iPad and the next thing he knew half of the PICU staff was flying over to his chair to try and get the crash cart out.  Stephen was definitely pretty traumatized from that experience.  Luckily the baby pulled through, obviously it was not something you want to witness.

Since the PICU was closed, we went home to see Perron for a few minutes and  clean up and get bags together.  The plan was that I would sleep in the chair next to Grayson and Stephen would stay until the 10:30 PICU closure and go home and come back in the morning.  Well, we got back to the hospital and he was doing so well they were talking about moving him to the regular floor the next day.  We were obviously thrilled and could not wait to get out of there.  The PICU was very crowded when we were admitted and they had to move beds around to make room for us.  Well, at around 9:30 that night they had a 5 year old that had to be intubated in the ER and they needed a space in the PICU.  Grayson was doing so well that they decided that we would be the lucky ones that got to move to a floor.  We were so happy that he was doing so well and so happy to be on the floor in much more comfortable accommodations.  We were smug enough at that point to think that our journey would continue to be easy and short, but boy were we wrong.  The doctor's that would be taking over Grayson's care came up to process the transfer and we were in our room at around 10:30.  Just in time for bed!

When we were admitted if you had told me that we would be there another almost two weeks, I would never have believed you.  The PICU holds 19 total children.  If you had told me on that Monday morning that my newborn would have been one of the 19 sickest children out of the hundreds of children that are in that hospital, I would have laughed in your face.  Things change quickly and our family is blessed beyond measure.  In those few hours in the PICU,  Stephen and I saw things that no parent should ever have to see and witnessed the silent heartache of 18 other families.  It is one thing to know that there are really sick kids out there as an abstract concept.  It is a totally different thing to see them with your own eyes.  Pray for the families that spend their lives up there and the incredible doctor's and nurse's who take care of them.

I will pick back up with the remainder of our stay on the floor in the next post.

Sunday, April 22, 2012

Grayson 1 Month

Dearest Grayson,

How could it be that one month has already passed since you were born.  Well technically six and a half weeks have passed since you were born, but you are going to have to cut mommy a little're first month of life was a roller coaster.  It is hard to believe that you spent more of your first month of life in the hospital then outside of it.  You were a very sick little boy and we were very scared for you, but you are also a very strong little boy and were able to pull through.

It is hard to image our lives and our family without you.  In some ways it seems like this month has passed in a blink of an eye and in other ways it seems like you have always been a part of our family.  You are such a sweet, good baby.  You are so relaxed and content.  I think that after your brother, God knew that we deserved a little break.  You are happy to be held, but you are just as happy to sit in your bouncy seat and observe what is going on in the world around you.  You very rarely cry.  In the hospital while they were repeatedly poking you with needles the most you would ever do was grunt really hard and squirm.  Every nurse would lavish you with praise and tell us what a good baby you were.  We could not agree more.  You will take a paci but you are fully committed to it.  We will see if that changes as time goes by.

I would list some of the things that you like to do, but bless your heart, you have been in the hospital so much you haven't gotten to do much more than lay in a hospital bed or lay in the bunny seat (your bassinet/bed).  I have done a little bit of tummy time with you and you are so strong.  You can hold your head up away from our bodies.  In fact, you are exhausting to hold just like your brother was, because you squirm and practically climb up our bodies and over our back.

You are a wonderful sleeper.  In fact, most nights I have had to wake you up just to feed you.  You eat and then go right back to sleep.  You have been sleeping right next to mommy and daddy's bed.  That won't last forever though, because you are a very loud sleeper.  You grunt and squirm like nobody's business.  I have enjoyed having you close to me though because we didn't keep Perron in our room for very long.

You lost down below your birth weight during your hospital stay, but are up to a little over eight pounds.  We had to switch you to size 1 diapers while you were in the hospital because you were wetting out of the newborn diapers.  You can wear newborn clothes and 0-3 month clothes, but those are still big.  It is so funny though, because you seem huge to us.  You are wearing clothes that your brother didn't wear until he was 3 or 4 months old.

Speaking of your brother.  He loves you very  much.  He always begs to hold you and wants to kiss and hug you all the time.  He is very sweet and gentle with you for the most part and is so excited to have you here.  We have had to cut back on the amount he can touch you and he hasn't been able to hold you since you were sick.  We have to keep you safe.  I love watching the two of you together and know that one day you will grow up to be best of friends.

You are the light of our lives and we can not imagine what our lives without you in it.  If anything, our time in the hospital with you strengthened our love and commitment to you and reminded us to cherish each moment with you.

We love you more than words can say!


Mommy and Daddy

Monday, April 16, 2012

Grayson's Hospitlization Part 1: The ER

Hello there blog.  It has been almost a year since I have seen you last.  I would make excuses, but who has time for that.  The reality is that I am here now and I have a very important story to tell.  This blog, back when it was active, has always served to document our lives, the good and the bad, the exciting and the scary.  Well, a few short weeks ago, I have never been more terrified in my entire life.  It started simply enough.  Perron started coughing over a  weekend.  I wasn't alarmed.  I assumed it was allergies due to the early spring we have had.  Well, by Monday the cough had turned into a fever and a full blown cold.  We toughed it out and I tried to keep the boys separated as best I could.  For those of you with more than one child, especially one child who is a very exciting to big brother newborn, you know that is impossible.  We took Perron to the pediatrician's on a Thursday and he was diagnosed with a sinus infection and put on antibiotics.  All was well in the Crigler household...until Saturday.

We went to the zoo with my parents Saturday morning and I remember mentioning at some point that Grayson was getting a stuffy nose, but I didn't think much of it.  Then some of our sweet friend brought dinner over for us Saturday night.  While they were there I felt Grayson's head and he felt really warm.  I took his temperature and it was only 99.9 degrees, elevated but below the 100.4 cut off.  I called the ped's office and she paged the doctor on call because Grayson was so young (17 days old at this point).  The doctor told us we could hold off on going to the hospital but if anything changed she was sending us to the ER.  He stayed about the same Saturday night and still had an elevated temp on Sunday so she sent us in to get checked out.  We were checked out and at that point there was nothing really they could do so we were sent back home.

Fast forward to Monday.  I woke Grayson up to feed him at about 7 am and he went directly back to sleep.  I had to go to the grocery store since I hadn't gone over the weekend due to his illness, so I left Grayson with the nanny and headed out.  When I got back home he was still sleeping.  I thought he might be wheezing some and I could see his clothes moving as he breathed, so I knew he was working a little hard to breathe.  I called my dad, who is a doctor, and asked him what he thought a newborn wheezing sounded like.  He basically said it sounds like going to the doctor's office.  I don't know why I was so hesitant, but I guess I was afraid that I would look like some paranoid first time mom, even though this was my second child.  Luckily after my mom called and said dad had called her, I agreed and made an appointment for 10:45.

My mom and I took him in and we got to see the same doctor that we had been working with over the weekend.  Our regular pediatrician was in Africa on a medical mission for two weeks.  We saw the FABULOUS Dr. M and she said that although is oxygen saturation was 98 percent she didn't like the amount of work he was having to do to breath.  He was retracting and doing some very slight grunting at that point.  She said she was sure that they were going to laugh at her for admitting us, but she would feel most comfortable admitting him for observation.  She said she was sure we would just be in there for 24 hours and things would be fine.  I completely agreed, because I was sick of being a nervous wreck at home watching him 24 hours a day.  She said that we didn't need an ambulance and we could just go straight to the ER and we could be admitted through there.  She called ahead and let them know we were coming.  I still thank God to this day, and I will forever, that she had the foresight to send us to the hospital immediately.

So mom and I loaded up and headed down to the hospital.  I was perfectly calm and relaxed.  I called Stephen and let him know what was going on.  I told him to leave work and go home and pack us a bag, get lunch, and meet us at the ER.  I called the nanny who was with Perron and let her know what was going on.  I was chatting and having a gay old time in the car.  In fact, I even went the wrong way to the hospital because I wasn't paying attention and was headed back home until my mom asked me where I was going.  Long story short, the entire time were were in the car was probably not more than 15 minutes.  As we were coming off of the highway, I happened to look in my rearview mirror at Grayson and he looked horrible.  He was gray and he was working so hard to breath that I could literally see his head jumping up and down in the mirror.  I asked my mom to turn around and look at him and she agreed that he did not look that good.  At that point, I had her take off her seat belt and turn around in the seat and watch him the rest of the ride to make sure he was still breathing.  It's funny because I clearly knew that he was worse, but I didn't know how much worse and I was not really panicked at that point.

We get to the ER and I take Grayson in while mom gets all of our stuff out of the car.  I head to the triage desk and tell them that we were the people who had been sent in.  The triage nurse asked if he could listen to Grayson really quick.  I pulled back the blanket that had been covering him and he listened to him for two seconds and said that I needed to come back to the triage room.  I quickly got him out of his carseat and the nurse put a pulse ox on his foot.  I looked at the machine and it said 78 (it should be a minimum of 92).  I remember asking the nurse if that was accurate.  He didn't answer me and quickly but the pulse ox on his other foot.  The reading came back as an 80.  The next thing I know he was yelling come with me and we were running through the ER trying to get to a room.  We got to the room and two nurses and a respiratory therapist started working on him.  I will never forget that scene for as long as I live.  Grayson was a horrible grayish, white, his capillary re-fill was 7 seconds (it should be less than two), he was retracting so hard that I could see each of his ribs, and was grunting so loud trying to get air in.  The nurses were trying to get an IV in him and he kept blowing veins left and right.  The respiratory therapist had a mask that was pushing 5 liters of oxygen in him and I was just standing there in total shock.  Not even 15 minutes prior he had been fine and now he is in critical condition in the ER.

The ER attending doctor came in and I told her the story and she said that she needed to get a PICU consult down to the ER because they thought that they were going to intubate him in the ER.  WHAT!!!  That is when it really sunk in how sick he was.  I couldn't believe that they were talking about intubating my 19 day old.  As I mentioned, I was just in total shock and my adrenaline was pumping like a million miles an hour.  Thank God my mom was with me.  she immediately called Stephen and told him to stop whatever he was doing and get to the hospital immediately.  She also called my dad and as soon as she said he was satting in the 80s he rushed from his office to the hospital and met us in the ER room.

They kept giving him breathing treatments, stuck him a million more time to try and get blood because his iv wouldn't return blood, took chest X-rays, and pushed several boluses of fluid to try and get him re-hydrated.  Stephen finally made it to the ER and we just stood there staring at our precious baby as he was being worked on.  The PICU doctor's came down and talked to us about the intubation process and what the criteria were for intubation and then said we had to be admitted to the PICU.  He said they were really full in the PICU so they would have to move beds around to make space for us.  They left us in the ER while that happened and again I can not stress enough that we just stood there in shock.  I didn't really cry the whole time in the ER, I was able to joke with our wonderful RN's and REspiratory Therapist (all males by the way).  The main thing I remember doing is just pacing back and forth over and over.  They finally  let me sit on a gurney and hold him and we just waited to be transferred.  When it was time to be transferred the loaded up his monitors, oxygen tank, and me on the stretcher and wheeled us off.

We were on the way to the PICU.  Stay tuned for part 2 of the story...the PICU.