Freshest From The Hand Of God

Sunday & Monday


Sunday marked a huge turning point.  Saturday was meaningful because his chest tube came out and he smiled.  Sunday was just as magical.  All of a sudden we were able to get 2 ounces of food into him and by the end of the day he was able to take 4 ounces.  That's my lovebug!!!


Mind you, as I write this, we are on day 8 of being up in Ann Arbor and only an hour ago he puked all over his freshly bathed self, pajamas and the carpet.  Yikes.  I'm hoping it was a fluke.  We tried some 6 ounce bottles today and our new scientific approach is to go back to 4 ounce bottles.


Back to Sunday!  Almost all of the wiring was gone and the day started out with a chest x-ray.  This was exciting because it was just one step closer to discharge and it was also Joey's first outing since checking in last Wednesday.  We put him in a funny little hospital cart and headed to the x-ray.  This was also when we realized that while diapers and babylegs were perfectly good for his crib in his room, we were probably going to have to start putting "real" clothes on him soon-- the only problem with real clothes, though, is that I'm afraid I'll forget about his incision and pick him up the wrong way.

Joey's chest x-ray came back clear and the magic of Sunday continued!  It was a quiet day at the hospital.  After all the bustle of the hospital all week it was calm and almost peaceful.  We also felt like we could start to finally breathe a little.


Around 10:30 our first visitor of the day arrived and she traveled a long distance to get here.  Coming all the way from Akron, arms full of king size candy bars for Tom, bottled water/apples and a Grande Americano for me....Miss Kelly!!!

Kelly has two little ones and a third on the way, so to come all this way was so kind.  She came in and had Tom and I giggling in no time.  I told her about me being "that" mom the other night and she told me that not only is she also "that" mom, but that she starts from a position of "guns ablazing".  This set us off into gales of laughter.  The picture of pretty and petite Kelly with her "guns ablazing" was too much.  Now we are pretty much obsessed with "guns ablazing" and I have to find multiple ways to use it a day.  


Speaking of giggling...why did I not know about this???


What doesn't belong in the following photo?

If you guessed the skin tone vibrator, then you are correct.

Why, yes.  That is a vibrator in my nine-month-old son's crib in the hospital on the cardiac floor.

I did a lot of research.  I mean a lot.  If there was a blog about open heart surgery, then I read it.  How did I miss this?  Mothers out there-- beware-- if your child has open heart surgery, there may be a "regular"/"adult" size (ie: not a pocket size) vibrator for your child.  This provided endless commentary about stress relief, but alas, at the end of the day, there was a legitimate medical purpose other than making us all giggle (Tom suggested slipping it into every person's purse who visited).

We actually put this under Joey's back to help break up the fluid and keep things moving when he was sedentary.  Why they don't have more kid-friendly versions, I'm not sure, but it did give us some much needed comic relief.

And speaking of comic relief, we found a lot of it in Joey's hair.  Some days it seemed bright blonde and other days, it was closer to a rooster.  We haven't ever seen his hair this often because it is usually covered up by his helmet.  Apparently it has been growing like a weed under there and now Joey is working on his rooster 'do that is starting to rival Tommy's faux-hawk.

Sunday continued on a lovely note and our friends Jessica and Jim came to meet Joey.  Jess and I went to law school together at OSU and she and Jim were in Detroit/Toledo this weekend and were kind enough to squeeze in a visit to the hospital (Tom and I still don't know how they managed to do this with their packed weekend, but we were thrilled!!!). They are getting married this year and they are one of those couples that just make you happy because you know they are perfect for each other.  

After Jessica and Jim left, we decided to take Joey for a longer walk around the hospital.  By the end of Sunday he only had his central line leads still in his neck, so he was much more mobile.  We "checked" him out of his floor (alarms go off if you don't check your child out) and we walked around the hospital, read signs and enjoyed both the freedom and the quiet. 

During our walk we found this sign that really says it all and epitomizes our stay at the U of M C.S. Mott Children's Hospital-- it says, "We approach the problems of children with affection.  For theirs is the province of joy and good humor.  They are the most wholesome part of the human race.  For they are freshest from the hand of God."

It was by far the most peaceful day so far.

Monday

Monday morning started off with a sedated echo.  Another crucial step towards freedom.  The bad part was that Joey had to fast for six hours.  Then we had to try and thicken the chloral hydrate so we could get him to take it without aspirating.  That was the rough part.  He cried, sputtered, protested.  Finally, I tried a lick of the stuff just so I could have an idea of what it tasted like-- yep, Joey, pretty nasty stuff.

He finally fell asleep and made it almost all the way through the echo (got to see his heart again!) when all of a sudden his eyes blinked open and he grabbed the hand of the man doing the echo!   It was quite dramatic, Mr. Joey.  He woke up happy, so that was at least a relief and it was also quite entertaining to see him surprise the echo tech.

We went back to the room and got the word from our nurse that pending the results of the echo, we would be discharged later in the day.  It was a lot of sitting and a lot of just waiting, but it was a good time to take some photos of the room we had been in for so many days.

Before we knew it, Nurse Ann was back and we were getting ready to board the freedom train!!!

We took a photo with Ann (41 years of nursing experience).  We loved her!

We stopped by the pharmacy and headed back for one more night at the Med Inn (just to be on the safe side-- we want to get through one night on our own before driving all the way home).  

It's crazy-- I feel jubilant--like we won the lottery.  For over a year now we've been anticipating this very event and now the surgery is over.

There will be some hard days to come.  I'm a little intimidated by his new medicines and the schedule of them, but I'm excited.  Excited to start challenging Joey.  Excited to start taking him out more and to hit is OT, PT and Speech Therapy really hard in the coming months.  

I've said it before, but I have to say it again-- for all the cards, calls, texts, emails, messages, notes, packages-- for all the prayers, words of encouragement, war stories, family, friends, nurses, surgeons, doctors-- for it all-- we are so humbly grateful.  This beautiful little boy who continues to amaze and teach also thanks you for believing in miracles and in him.

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!