Our Family in a Snapshot: 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.