Letting Joey Be Joey

Dimples!

Somehow it's gone from Wednesday to almost Sunday in the blink of an eye.  Again-- time plays such cruel tricks in the hospital.  Sometimes five minutes feels like five hours and then before you know hours and days have melted away and we haven't even gone outside since Tuesday.  I know-- that seems crazy, right?  Honestly-- there just isn't time.  Priorities are made and they involve quick showers and running down to the bathroom (we aren't allowed to use the one in Joey's hospital room-- it's only for patients and is shared between the two patients in our room and then the two patients in the connecting room--it's also incredibly ironic because all of the patients are in diapers, so they aren't actually using "their" bathroom either) when Joey is sleeping.  


My husband has been a rock and I've tried to do my best as well.  I was "that" mom on Thursday night when we got moved to the general floor after only being the PICU for 24 hours.  It was a brutal switch, but they were out of room in the PICU and Joey was doing really well.  Unfortunately, we moved over to the new floor during a shift change and we went from having a single nurse devoted exclusively to Joey to a nurse who had five patients in five different rooms to care for.  I stayed in Joey's room that night and Tom went back to the Med Inn and Joey's roommate screamed bloody murder for most of the night.  Little Joey's eyes fluttered wide opened, his heart rate kept shooting sky high every time she screamed and all of his alarms and monitors went off all night.  I tried to keep it cool, but in all honesty, I was tired, I was stressed and I was really worried about Joey.  I'm really, really glad Thursday is over.  No one likes being "that" mom, but sometimes things happen and you are just "that" mom.  


Speaking of Joey--he is doing amazing!  He has been sleeping well and slowly, ever so slowly, we have seen the sparkle in his eyes return as he was slowly weaned off the morphine.  It seems that with every line and wire that is removed, we see a little bit more of our baby boy.  

Joey's new room on the general cardiac floor.

We tried every different option to get him to eat again.  No luck.

Hi Grammy--I survived the night.

Despite how well Joey is doing, we have to remind ourselves that as much as we want Joey to hurry up and heal as quickly as possible, we need to respect his healing process.  We need to let Joey be Joey.  Although he slurped down a bottle Thursday, starting on Friday he was not able to keep bottles down (or oral medications for that matter) anymore.  


Here's how Friday went-
Liquid Meds-- he took them, aspirated, started puking.
Bottle 1-- he ate it, started crying hysterically, puked.
More Liquid Meds-- we mixed them with the thickener, he took them and then puked.
Bottle 2-- he ate, started crying hysterically, puked.
Bottle 3--you get the idea.... it ended in puking.


We probably should have laid off the whole feeding thing after the first thrown up bottle, but we were so confused-- he had eaten on Thursday.  We talked this all out with the nurse practitioner, and although none of us can mind read and Joey isn't quite talking, we think that on Thursday he was probably so thirsty that he just chugged his bottles down.  He was also still heavily, heavily medicated and he might not have been as sore.  By Friday, his major anesthesia and heavy meds had worn off, and because of the intubation, we're thinking his little throat was very, very sensitive and sore.

This measures all the fluid that his chest tube drains.

Emily stops by to visit Joey during her shift at work.

Dressing is off!  Chest tube is getting ready to come out.

Still keeping it stylish in the hospital.

Hi G-pa!  What do you think of all of this?

Yes!!!!  Chest tube is gone!

G-pa, meet Sophie.

Sometimes children with Down syndrome are more prone to upper respiratory issues and Joey has definitely had his share of upper respiratory stuff.  Croup, RSV, colds that turn into wicked coughs lasting for weeks.  


While we hope that he eats soon, we are also realizing that Joey is healing at his own pace and as his body will allow.  It's tough-- when you have kids you have expectations of when they'll walk, when they'll talk-- when they will do all of those major milestones, but children are amazing in the way they tend to humble us.  We pray that Joey's little throat starts to feel better.  It is so hard to watch him try to eat and then stiffen his entire body up and cry so hard. We really want him to be able to eat so he doesn't have to get a feeding tube, but whatever it is Joey needs is what we are here to help make happen.


On a happier note-- his chest tube came out today!!!  And on another happy note-- he is smiling again!!!!

His hair looks blonder, right? 

Precious angel.

This is the photo above the parent "bed"/couch in Joey's room.  Soothing, right?  Angry, hungry bear-- I feel so peaceful.

Being in a children's hospital where they specialize in major issues like cardiac surgery and cancer can be incredibly sad.  It helps to focus and sharpen priorities.  Down the hall from Joey is a 17-year-old boy who is in congestive heart failure.  He is only 17.  Next door is a newborn baby who had emergency open heart surgery this morning.  Joey's roommate is a two-year-old girl who has just had her third open heart surgery and has been in the hospital for three weeks now.  


The prayers for Joey have really helped him in this amazing journey.  We pray now that he is able to eat soon and that he continues to get stronger and better every single day.  We also pray for all of the children everywhere.  Healthy, ill, happy or sad-- God bless the beautiful children.


Thank you so much for the prayers for Joseph David!