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

Fire Up the Engines . . . Oh Wait, Not Yet

As of Tuesday, 7/10 we had a launch date of Monday 7/16 to bring JD home. Well . . . today is Wednesday (7/18) and the engines are powering down. 

Sleep Study Results

It started on Wednesday (7/11) afternoon with the bowtie wearing sleep doctor. 

The Good news: the second Sleep Study showed improved breathing.

The Challenging news: it was not the improvement we were hoping for.

The Break down: When JD transitions into REM sleep his oxygen levels start to drop on the way to a desat. Once he dips he brings himself back up to his normal baseline meaning his brainstem is working to wake him up. However, that still means he is struggling to breathe and he is not getting into a strong sleep rhythm. The first study showed he had 44 episodes/hour (WOW) but the second study was around 14 episodes/hour showing a vast improvement. Two elements were different with the second sleep study. 1) He no longer had the OG tube in his throat. 2) Halfway through the test they added a nasal cannula at a very, very low flow leading to improved breathing.

What does this mean? It means we need to find the safest way for him to come home so we can all sleep soundly. The Sleep Doc feels he would be safe to come home with a nasal cannula at a low flow when he sleeps. This would include coming home with a monitor to observe his saturation levels and heart rate. Let me be honest, Nate and I will sleep much better with a loud oxygen compressor in the room along with a monitor than without one. Please ignore the huge bags under our eyes for the next 18 years. 

The cannula cannot hide those cheeks

Game Plan

JD’s saturation levels in the high 90s were fantastic for the first few days post surgery. No nasal cannula, no desats, great rhythm. However, as each day passed by his numbers dropped slowly settling right around 92 - 94 once again. By this point in the week we had already started to formulate a plan to bring JD home. At night the nurses would start to put the cannula in to ensure a comfortable night of sleep.

That took care of the breathing concerns for the time but we still needed to ramp up to full feeds via the G-tube. His feeds were going very well. By Friday morning he was up to full feeds with no issues. Over the weekend the surgery team wanted to monitor him for a few days on full feeds. All signs pointed to JD snuggling with us at home by Monday (7/16) night.

Problems Arise

On Friday (7/13) afternoon as Nate worked from the hospital and I made my way to Lurie’s some problems started to brew.  It started with JD choking on the secretions in his mouth. Normally, he struggles but eventually swallows whatever is in his mouth. This time was different. He was really struggling and needed to be suctioned out with a powerful machine. Hmmmm, that was new.

From the first day back at the hospital I have mentioned to the doctors and nurses he has trouble swallowing. This part is not new, yet the needing to be suctioned out is new. When the nurse looked into the tube there was a thick mucus-like substance that was new for JD. Right about this time I walked in with a huge smile on my face only to be greeted with this new information. There goes my smile. After a few hours, it happened again. Choking leading to suction. This time the nurse tried to use a manual blub syringe, as that is what we have at home . . .it did not work at all. The doctors were called in to discuss ordering us a home suction machine to ensure his secretions can be cleared.

At this point in the story we were still on track to monitor his feeds and breathing over the weekend and head home on Monday.

What’s Wrong Little Buddy?

On Saturday morning, 7/14, Nate and I walked to see JD looking extremely sick. Each time I walk into his room, no matter what is going on, I am reassured he is a strong fighter . . .not this time. This was the first time my heart sank and the tears started to flow quickly.  JD was pale and sweaty with red, red eyes that looked swollen. Every doctor was called into the room immediately to help get a diagnosis on what to do. The attending on call was very attentive and intensely listened to our concerns with a very calm plan. From what we hear she was more concerned behind the scenes than she let on but you would never know. Thank you, we needed a soothing doctor at that moment.

There was a worry he may have a virus starting or something else brewing. It was decided we would do chest x-ray to check on his lungs, take some blood to look at his hemoglobin/white blood cells, and take a nasal swab to check for a virus.

After we settled in for the morning JD started to look more comfortable. By 10:30am I had a decision to make . . . should I stay with JD and Nate or go to lunch with Charles “Peanut” Tillman. I began to prepare to cancel on the lunch when Nate told me to go. This was a wonderful opportunity, Nate was at the hospital with JD, there was nothing I could do, and I would be just down the street if anything happened. With feet dragging I went to meet the rest of the group.

Our New Favorite Chicago Bear #33

Charles “Peanut” Tillman is a cornerback for the Chicago Bears. Over the past few years he has become one of my favorite Bears player. In interviewers he is smart and witty while on the field he is aggressive and feisty and knows how to intercept and force a fumble or two.

At the beginning of last week I received a call from the NICU Chaplin inviting me to a luncheon for the Charles Tillman Cornerstone Foundation. As I mentioned we really like Peanut so I was ecstatic and honored to be invited to the event. Through my involvement with the Ronald McDonald House I was aware Mr. Tillman’s daughter had received treatment at the old Children’s and the Tillman family stayed at the Ronald McDonald House during her treatments. However, that was all I knew about the Tillmans. So I assumed this luncheon was his way to give back to the hospital that helped his daughter. It turns out he does SO. MUCH. MORE.

In May of 2008, Charles’ 3-month old daughter was diagnosed with Dilated Cardiomypathy. In July 2008 at the age of 6-months old she received a heart transplant. Charles says God blessed mothers with “tender hearts and patience” yet the fathers were given the gift to “fix it.” When his daughter needed a heart transplant he wanted just to buy a heart and “fix it.” He quickly realized there is a whole lot more involved. Yet, his wife was strong and caring. Charles rapidly realized the mothers were at the bedside everyday working hard to keep their little ones fighting.

With the mothers in mind, he started the TendHER Heart Luncheon each spring. Charles invites mothers of critically and chronically ill children from Chicagoland hospitals to honor them for the sacrifices they make in caring for their ill child. I was honored to be invited to attend the luncheon. Only 3 other moms were invited from the NICU (only about 100 moms were invited overall) so I have to believe I was recommended by one of our nurses. Maybe they wanted to get rid of me for a few hours because I am always around.

That brings me back to Saturday afternoon when JD was no longer at his peak. I am continual amazed at how life lays out little steps that help you understand your path. During our very tough Saturday morning Mr. Tillman’s luncheon showed me how blessed we are to have JD in our life. Not only was I able to rub elbows with Peanut and his very pregnant wife, but I had the opportunity to hear other moms’ stories and journeys. I even met a few other moms from the NICU who I can chat with while choking down the terrible hospital lunch in the future. I look forward to working with the Charles Tillman Cornerstone Foundation to find ways to give back and help others who need the support.

Next time you watch a Bears game give an extra shoutout for #33! Plus, Peanut is really good at math - check it out for yourself HERE

This story is getting long and there are many more details so I will leave you with this. By Saturday afternoon, JD looked extremely better and more comfortable leaving us even more puzzled by Friday and Saturday morning’s events. The blood work and swab came back negative and the chest x-ray showed a tiny bit of something in the left lung but nothing to create more concern. As for me, I have newfound respect for Charles Tillman and a bigger excuse to allow Connor to watch football on Sundays.

On Sunday (7/15) JD was back to his comfy self on the cannula. We decided to keep him on the cannula 24 hours/day all weekend long to ensure he was breathing better. The next step was to turn down his oxygen flow to see how he manages. By Monday afternoon we were back to our plan of having the cannula in at a low flow only when he sleeps. The doctors ordered another x-ray for Monday to check on his lungs again. According to the doctors the x-ray definitely showed a bit of something in his left lung although I looked at it did not see anything. Conclusion: JD must have been getting over something such as a cold, which is why he was having trouble swallowing the excess mucus.

More Puzzles

On Monday (7/16), he had another suction episode but it was more easily managed. Tuesday (7/17) brought us our first Brady in weeks. Bradys are not good, however, if you are going to have a Brady it is best for all your other numbers to stay the same  . . . that is exactly what JD did. His heart rate dropped to 77 but he brought himself back quickly without a drastic saturation drop.

Sunday and Tuesday started a pattern of new alarms we have not seen in the past. The monitors alarm but all the numbers look okay then a yellow box pops up in the top that says “Missed Beat.” Hmmm, Missed Beat? Our nurse on Sunday said most of the time the monitor is not reading correctly so we thought nothing of it. Yet, with a Brady in the morning on Tuesday and a second “Missed Beat” I made sure to point it out to the doctors. They have the ability to review his numbers from days prior to see if there is a pattern. At this point, this is not a concern but something we are keeping our eye on.

Getting a little sun with mom

Plastics

With all of these breathing issues, Dr F feels it is time to bring in plastics to discuss his small jaw. There are actually procedures they can to do pull his jaw forward which in turn would pull his tongue forward as well. The consensus seems to be his recessed jaw pulls his tongue back making it difficult for JD to breathe and swallow comfortably.

Plastics looked at JD and will work with ENT to agree upon next steps which then need to be taken up to Dr. A at neurosurgery. Once again, we are looking for solutions to ensure he can come home safely without unnecessary concerns.

The Light and The Tunnel

Our attending, Dr F would like to monitor him over the weekend. They will be watching to see how he breathes with and without the cannula. As well as how he can manage swallowing his secretions. The goal is to send him home with the same plan we had a week ago . . . nasal cannula at night only. Home health care has delivered everything we need and this little 8lbs 7oz man has more stuff than the rest of us combined.

When Nate and I bought our condo we thought it was a great size – then we added a baby and it got smaller – then that baby started moving and it got even smaller – then that baby turned into a non-stop toddler making the condo smaller yet– now we have added a second child that is not even home but has already taken over most of the condo. Our once spacious condo has turned into what feels like a 200 square foot New York City studio. 

Just a few of our items for JD

BUT, we will take our tiny place if it means JD gets to come home. For now, we sit idle with the engines off staring at the very small light at the end of, what seems to be an ever-growing tunnel. But the light is there, we can see it. One day that light will be fully shining on us and the tunnel will be the teeny thing we see in the distance behind us.

Collar free time

Loving my pacifier which looks bigger than it really is

Sleeping with one eye open to look at the crafty sign mom made during NICU scrapbooking - don't make fun of her too much, she's kinda nerdy

Recovery

From the moment we found out we were pregnant with Connor we started receiving advice from everyone. Lots and lots of advice. Yet, the best piece of advice we received came from my wonderful mother-in-law, Sue:  “At the end of the day don’t listen to anyone but yourselves. Trust your own parental instincts.” This little morsel of wisdom has been very true with JD.

Nate and I have been very vocal about our feelings regarding the OG Tube. For months we felt once we removed the OG tube from JD’s throat he would be much more comfortable. We agreed with waiting on the G-tube the first time around (we wanted him to be bigger) but this time we knew the G-tube would be the game changer. And we were . . . right.

JD is recovering magnificently. While he was in a bit of pain in the beginning he handled it like a champ. Less than a day after surgery he was breathing so well they took out the nasal cannula. Once the cannula was out his saturation levels were around 98, 99, 100 ALL BY HIMSELF. We have not seen those numbers without a cannula in a long time. He is a brand new baby. His heart rate is right on target, his respiratory is more consistent, and his oxygen  . . . well it is outstanding. Before surgery we were lucky to have his saturation around 94 at the high end. After surgery he hangs out around 97 at the low end.

Plus, it is well known I am not a fan of ophthalmology and their horrible eye poking pen-like machine they shove into JD’s eyes. However, after they did their test in the OR his eyes are better. They did not do a procedure just a test and yet his eyes seem to be more in sync. It does not make sense to us but his left eye appeared to be larger than the right eye before surgery . . . and now the left eye appears to be more even with the right. Honestly, a brand new baby.

Finally, within 24 hours post surgery JD’s physical development soared. He started pulling his hands midline to grab toys and blocks. These are little things taken for granted when babies hit developmental milestones along the way. But the minute a baby is even a day late hitting a milestone any parent will start extra “playtime” in the hopes to “catch up.” While we know JD will develop slower than scheduled that does not mean we don’t expect the best from him. When we are in the hospital it is easy to forget he needs the same playtime experiences as Connor needed. Therefore, when JD holds a soft block in his hand for 5 seconds I will continue to call in every nurse and PT employee I can find to show off. This kid will do amazing things in the future but it starts with holding a block (no pictures holding the block I was too excited to grab the camera).

Why is mom so happy I am grabbing this silly bear - it's not that hard

The King Has Spoken

Neurosurgery stopped by yesterday to give us some good news - we can start weaning the collar! Hip, Hip Hurray!

Step One - Take an x-ray to get a baseline look at his neck

Step Two - Take the collar off for one hour each day this week

Step Three - Increase the collar-free time to two hours each day next week

Step Four - Order another x-ray of his neck to compare against the first x-ray

Step Five - Create a collar plan with Dr. A moving forward

JD does not know what to do with himself when the collar is off. I think he is worried if he makes any sudden moves we will put the collar back on. Instead he looks around slowly while I try to encourage him to put his hands up to his face. Oh my goodness, he is one handsome little peanut.

Updates from Rounds

As I sat on the ground playing with JD in his bouncy seat the doctors came in for rounds. Monday introduced us to our 5^th new Attending, Dr. F. We have actually encountered this doctor in the past with really good results. I have faith this is will be our last attending while in the NIUC.

Sleep Study: Preliminary results show JD still has mild to severe obstructed sleep apnea (a slight improvement over the last test). The sleep study started without the nasal cannula then halfway through they added a cannula to test the difference. The attending would like to discuss the results further with the sleep doctor rather than rely on just reading the report. Bonus points for Dr. F!

Feeding: Over the past few days they have started his feeding through the G-tube with positive results. It started off slowly with 5mL over an hour every hour for 6 hours. Then up to 10mL over an hour every hour for 6 hours and so on up until 25mLs. Once he reached 25mLs they moved to spread the feedings out to give his stomach time to hold larger quantities of food. Currently he is up to 50mL over an hour every two hours. If all goes well by Thursday he will move up to his full feeds (approximately 75mLs an hour every 3 hours) at which point they will monitor him until Monday.

Follow-ups: As with the first time we left we have many services following us, therefore, we will have many follow-ups. My hope was we would have some of our original follow-ups while we were here in the hospital . . .however, they love JD so much they want us to come back for outpatient appointments again and again and again. Right now, the resident is working on scheduling more of our appointments together in blocks. If the schedule stays as is I will be back at the hospital 8 times in two weeks. Goodness.

On the Launching Pad

The engines are not yet fired up but we are on the launching pad to come home. We will be at Lurie’s at least until next week as they monitor his ramp up to full feeds. Plus, Dr. F wants to talk to the sleep doctor about ensuring he remains safely breathing at home. That teeny tiny light at the end of the tunnel just got a little bit bigger. 

All I need is a gold chain to complete the look

Appreciation

One final thought, I want to send a humongous hug and thank you to my bestie (former) co-workers Tracey and Kristin. Even though the 3 of us have not worked together in almost 2 years you ladies continue to be there for me everyday. From your texts and emails and phone calls and visits and food drop offs you have given me virtual hugs every single day. All the planes rides, late night crunch sessions, the HOURS and HOURS of conference calls, the pages of edits, the thousands of client presentations, the Starbucks venting frustration meetings, PAWS, and lots of wine have left me with extra wrinkles but most of all fabulous friends. Thank you for keeping us in your hearts even without seeing each other everyday. It sure makes all the tough times at work worth it. We will always been family. 

Pre- Op / Post-Op

Today is the day James Douglas is getting his G-Tube along with a host of other services. The goal is to expose him to as little anesthesia as possible making JD’s plate very full today.

Before surgery - he knows something is up

11am

As someone who has been honored with the award of Most Organized I am fascinated by the team’s scheduling of today’s events:

Step 1 – Dr. C will perform the G-tube surgery – this man makes we want to ask for a hug. When JD was just 1 month old, Dr. C was the doctor who out of everyone else recommended we hold off on the G-tube until he got a little bigger. It seemed, from Day One, he had JD’s health and safety and our comfort in mind. Fast forward to today when he came in about 4 hours prior to our OR time to discuss the G-tube surgery again. Even though he had already discussed everything with Nate he took the time to give me the detailed information. Plus, he made sure if for any reason we were uncomfortable with this surgery we could take a step back. Not many surgeons are willing to let you back out just a few hours prior to surgery because their time is very precious. Yet, Dr. C made sure we had no questions before moving forward with the procedure.

Step 2 – The team will call ENT to come in accomplish two goals:

1)    Check his ears, clean his ears, and look for fluid. If there is fluid they will insert tubes to help with his ABR hearing test.

2)    Place a flexible scope down his throat to look for any obstruction, called a Flexible Bronchoscopy. This will be an altered version the ENT Test 2 they originally wanted to perform but was not cleared by neurosurgery. ENT knows they are not allowed to move the neck, which is why this test has the word “flexible” in the title. From what we can tell, this test will not give us all the information the doctors were looking for but it can give us a better feel for what could be causing the obstruction.

Step 3 – Audiology will be called in to perform an ABR hearing test seeing as he failed his two newborn/infant screenings.

Step 4 – Ophthalmology will join the party to perform an eye test to look at the anatomy and structure of the eye. This test can give us our first clues as to what JD may be at risk for in the future.

Step 5 – Anesthesia will monitor his vitals and breathing the entire time as well as slowly bring him out of anesthesia. JD will be intubated during the procedure so he will need to be extubated once he is prepared to breath on his own.

Step 6 – Bring him back to his room to settle in for the night and recover.

2pm

OR had him scheduled for 3pm but called him down early. We were able to stay in the pre-op room with James until they took him for anesthesia. This allowed us to meet all of the doctors and once again Dr. C gave us the opportunity to ask more questions. When they built this hospital the designers truly had kids in mind. The hallways are bright and welcoming with warm colors and beautiful pictures. The MRI rooms and machines are underwater adventures carefully painted to give the feeling of beginning a voyage. And the OR floor has what I call “flight boards” – 50” flat screen TVs throughout the halls listing arrivals, in-flights, and departures throughout the OR. I tried reading some of the procedures and only understand one. Guess I still need a bit more medical training.

Anesthesiologists tend to have big egos (Nate hates when I say stuff like that) but we loved Sam (not even sure that was his name but he looked like a Sam). Ultimately, you want to be comfortable with everyone in your child’s operating room. However, if you are only comfortable with two people in the OR it should be the surgeon and the anesthesiologist. Check and Check.

Not this again

You would be pretty mad too if you were in this tiny isolette

3pm

HUGE storm just rolled through the city with sheets of rain for about 15 minutes. Every doctor that walked by our room came in to look out the window to say “Whoa, that is an intense storm. I guess we need it but I hope I don’t have to walk to my car in the rain.” Well, since we are all here now let’s stay dry by moving into an OR and getting this party started.

Still in the OR pre-op room waiting for “Jeff to verify.” Two things with that:

1      - Who is Jeff? Dr. Jeff? He does not sound very official.

2      - What does “verify” mean? They never have to “verify” anything on Grey’s Anatomy.

3:30pm

Jeff verbally verifies via phone (still have no idea who Jeff is and what he is verifying) making Dr. C (and team) ready to go. Last few kisses and love to send JD off. With Dr. C and Sam leading the charge we feel confident in JD’s team.

3:45pm

About 15 minutes after settling in to JD’s room I received a call from Dr. C letting us know audiology was unable to do the ABR test today. At the same time Dr. M (the Attending) came into the room to tell us the same thing. Dr. M had given the okay to proceed with the G-tube without the ABR test but Dr. C (once again caring about our concerns) told me he wanted us to give the final OK. He said he would not proceed unless we are okay knowing JD will need an additional test at a separate time.

Thank you Dr. C! Yes, please proceed.

5:35pm

Two hours later Dr. C called to say they were done with the G-tube which took a bit longer because he needed a new IV (his IV “went bad” right when they started transporting him down to the OR). In my excitement to hear Dr. C say the procedure was complete I did not ask how the surgery went but my guess, if he said nothing then all went well.

Step 1 – CHECK

Step 2 – In Progress

Step 3 – Postponed

Step 4 – CHECK

Step 5 – In Progress

Step 6 – Waiting

6:15pm

JD is back in his room looking good but sleepy. To keep him warm they have a Giraffe Warmer for him as a precaution. He will stay in the warmer until we can put clothes back on him. Our big JD looks enormous in the warmer compared to how he looked when he was just a few days old. 

6 Days Old

3 Months old

The stream of doctors came in to tell us about the procedures:

Step 1 – G-tube surgery went well with no complications. Currently they are draining any air or fluid from his G-tube so they can start giving him Pedialyte through the tube tomorrow. Hopefully by Friday night they can start his milk and by Saturday he will be up to full feeds.

Step 2 – ENT cleaned out his ears and did not find any fluid. No fluids means no tubes. I have said it before and I will say it again JD runs the show around here. The docs think one thing but JD has his own agenda. Plus, the flexible bronchoscopy showed he has no anatomy abnormalities and his vocal folds look good. We think this is good news but we are not quite sure what Dr. M will say.

Step 3 – No test = no updates. ENT spoke to audiology to let them know they can proceed with the ABR hearing test. Actually, the ABR can be done bedside with no anesthesia as long as it is a quite environment.

Step 4 – Ophthalmology completed their test and in true fashion we have not heard anything from them yet. Ugh!

Step 5 -- Sam told us JD was great with no problems being intubated or extubated. Adding to our love of Sam he placed a truck sticker on JD’s G-tube which made it look super cute and less scary. Yay Sam.

Step 6 – Chillin’ in his giraffe. They have a nasal cannula in to help with his oxygen as he comes out of anesthesia but he should have it off by tomorrow. It is obvious he is in some pain as he cries out with a pained look on his face but overall he is comfy. Watching him slightly uncomfortable makes me even more grateful we avoided Spina Bifida surgery. Counting our blessings today.

Tonight, I will be staying at the hospital with James. I was denied this opportunity on the day he was born making this my chance. So tonight I will snuggle with my boy (as much as I can next to the Giraffe) as we watch the last few episodes of Downton Abbey Season 2. Oh how I wonder if Matthew will go through with the wedding and what will happen to Mr. Bates?

Thank you for the prayers. Keep them coming.  Good night.