111 Days Later

I do not envy the doctors. Their job is to understand exactly what is wrong with a little human that cannot communicate  . . .then fix it. Doctors have to take the knowledge they have gained in med school, through real life experience, and gut feeling then roll it all up into a final solution. Imagine how tricky that would be. For 8 years I did the exact same thing at my media/advertising job. If I arrived at the wrong outcome the worst that would happen would be a very angry client (although I never came to the wrong, client-angering decision). However, if doctors reach the wrong solution the consequences can be more severe. I say all this because these past few days consisted of confusing miscommunication between some of the services.

Wednesday 7/18

Plastics were called to check out JD’s recessed chin (medical term: Micrognathia) as there is continued conversation about the cause of his breathing problems. A small chin can pull the tongue into the back of the throat blocking the airway. There is actually a procedure they can do which will pull the chin forward called a Mandibular Distraction. The goal of Plastics was to assess JD’s need for this surgery. Dr. V, from Plastics, decided he would need a CT Scan to understand JD’s bone structure. We have been avoiding CT Scans as they tend to be higher in radiation than other tests they can perform.

As a compromise we asked about MRI (which would mean he would have to go under again) alas in order to get the views of the bones they need a CT. Blast. Nate was not on board with this idea so we waited to hear what ENT had to say.

Thursday, 7/19

JD had lots of ladies coming by to visit as Aunt Lauren and Miss Abby stopped by for some snuggles. During that time ENT came through to take a look at JD and discuss their thoughts. ENT felt JD was breathing okay on his own and the doc would like to see JD grow bigger and stronger prior to any surgery. Therefore, there was no need to get the CT Scan now. Yay! I requested the ENT doc talk to our attending to ensure everyone was in agreement.

A few hours later a resident (not our resident) came in to see if we had agreed to the CT Scan (I had originally told them Nate and I needed to discuss prior to the scan). ENT said we no longer need the scan during this hospital stay and it is something we can do after he gets bigger I happily told the other resident. Great, the resident went back to tell the doctors while the girls snuggled more with JD. No CT Scan.

Friday, 7/20

During rounds the resident said “some unknown person came by to say JD did not need a CT Scan but we don’t know who this person is or why.”

Seriously?

“As I explained to the other resident it was Dr. R from ENT who said we did not need a CT Scan and I had asked Dr. R to discuss his thoughts with Dr. F (the attending).”

To which the resident said, “oh.”

Our attending said “great we will discuss with ENT but if he feels we can wait we will.”

The game of telephone between services is getting a bit old.

Nate and I headed down to lunch for what we hoped would be our last Friday lunch at the hospital.

When Nate and I arrived back to the room JD was looking good and feeling great. Nurse Amy was at lunch so the Charge Nurse came in and said “the resident wanted you know they will take him down for the CT Scan in a few minutes.” I’m sorry, what?!? We were gone for 30 minutes – how did this change? Luckily at this time Plastics walked in and explained why they wanted to get a baseline look at his anatomy. Plastics also explained they were looking to see how much room JD has at the back of his jaw for a mandibular distraction. Finally, he went through the step-by-step process for the surgery which sounds simple enough, but pretty harsh. He ended by saying “I do not want to operate on your son. I am not pushing this surgery, but I have to know what I am working with so the team can stop asking me if we can do the surgery.” Fair enough.

Off we went for our CT Scan with Nurse Amy as JD’s co-pilot. As I have mentioned in the past they created Lurie Children’s to be a very kid friendly non-scary hospital. The attention to detail makes even the anxious parents smile. When you walk into the CT room it allows you to prepared for a ride. What better way to calm the fears of nervous kids  . . . and parents. It sure made Nate and I comfortable.

The CT room is HUGE but really fun

Little Peanut ready to pilot his space craft - he slept through his whole ride

One last thing to monitor is JD’s heart. Throughout the week JD had a few monitor alarms go off which said “Missed Beat.” That has never happened before therefore the team added a few extra leads (the “stickers” attached to his chest to monitor his heart rate and breathing) which would then be downloaded by the cardiology team. Fair enough.

Friday ended as a great day. All signs point to JD coming home by Tuesday, 7/24.

The Weekend

JD had a great weekend. He looked good, he was comfy, and we even got a tiny mouth movement in the upward direction (just like with Connor we are tough on these milestones – we need a real smile before it goes in the books no participation medals here). Connor spent the weekend in the ‘burbs with Gramps + Lita and Grandma Sue + Grandpa Doug leading to a perma-smile all weekend. Nate and I went out to pick up Connor on Sunday with a short stop at the Gawels pool. The whole family came out and it was a great end to the one-boy-at-home/one-boy-at-the-hospital chapter of our lives. Next time we have a family party it will be plus one.

Just keep swimming, just keep swimming

Gawel cousins minus the 14 year old teenager inside reading - too cool to swim

Monday, 7/23

Nate went in for what we hoped was the last 6a hospital snuggles. Yet, at 7a I received a text from Nate saying JD was stuffy and uncomfortable. WHAT!?!? Not again. The nurse suctioned JD and he seemed fine for the rest of the morning.

By the afternoon he was back to his comfy self, sating with great numbers in the mid-90s. I think he was showing off for Auntie Cheryl the last guest to visit JD in the hospital – so we hoped.

The doctor came in to give us an update from all the tests over the weekend. Neurosurgery was so impressed with the C-Spine alignment that JD was given the go ahead to have the collar off for three hours everyday. Plastics had not yet read the CT Scan but based on our previous conversation this was a baseline look at his anatomy. Therefore, there are no next steps for now. CT Scan = good to go.

As for the extra heart monitors cardiology downloaded his waves for the whole weekend. They reported everything looked great. Throughout the weekend they noticed one blip and it was a monitor error not an issue with JD’s heart. Heart monitors = good to go.

Now we just need to have a good night and we will be cleared for takeoff.  Engines are fired up and the countdown is on.

Tuesday, 7/24

Nate took the day off to prepare for our newest arrival. As we waited for rounds Nate and I discussed how blessed we are to have had such a wonderful experience with an amazing little boy.

“Today is day of life 111 for Mr. JD” said the resident during rounds. As she rattled off the numbers and JD’s information we waited for the nod, the go ahead, the smile from the attending. Finally, Dr. F looked at us and said “I feel comfortable JD has enough reserve to go home safely with wonderful parents. He will do great at home but we will miss you guys.”

That’s it! That is our cue to gather our things and once again become a family of 4 in our own little condo. We are so lucky to have had the care of the team at Lurie’s and we know JD will continue to be in great hands as the team follows us through many more challenges. But this is our time to exit and allow JD to grow with us at home.

One more feed, one more assessment, and one last picture with Nurse Amy before we make our grand exit. Nurse Beth, our other primary, stopped by to give one last kiss to JD and one more hug for me. Nurse Beth has been such a great advocate for JD throughout our stay. She took great care of JD and has helped to teach the best way to keep JD comfortable at home. Lurie's would not be the same without Nurse Amy or Nurse Beth.

One last assessment from Nurse Amy - looks good

Good-bye Nurse Amy

In the movies there would be a line of all the nurses we have  had clapping and patting us on the back shouting “congratulations” or “you will do great at home.” Instead we had Nurse Amy walking as out as our favorite front desk girl wished good luck. And that’s exactly how we wanted it.

This will be our last extended stay at Lurie’s as we are ready to make our own schedules and spend time playing in our living room rather than the Family Center. I will miss the nurses and some of the doctors and Connor will sure miss driving the Fire Truck but we will make our own excitement right here at home.

Thank you Lurie Children’s Hospital. We will see a lot more of you but only on the outpatient floors. Our new journey begins.

**Side note: the brown tape on the side of JD's face is called Duraderm. It is used to protect the skin from the tape we use for his nasal cannula. We are working on a better way to keep his face clean of tape. Not many babies still look handsome with tape on their face but James sure does.

Good-bye Room 1427

One last hospital snuggle

Get me out of this place

One last day with our family of bracelets

What's with all the pictures

Cozy at home

No monitors

No IVs

Big Brother wants to play Little Piggy

Good looking boys

PT with some chubbs legs

Finally relaxing at home with three whole hours of collar free time