Sunny Afternoons, a Glorious Walk and a Sleep Study

After two weeks it seems like JD was never even home. We have easily fallen back into our hospital routine with Nate going in the morning before work while I head down in the afternoon after spending the morning with Connor. The biggest challenge we have right now is spending enough time with Connor yet being at the hospital when the doctors round. They round in the morning and are much more difficult to catch in the afternoon. Yet, Connor takes a long afternoon nap so in order to optimize time with him I have to miss talking to the doctors in the morning and hope to track them down in the afternoon. But every parent knows what it is like trying to balance life.

Lots of little updates from the past week:

Sunday, 6/17 – Happy Father’s Day

After having an uneventful week (in a hospital an uneventful week is the kind of week you want) JD desated on Sunday evening (early Monday morning) where he needed a “blow by.” A blow by is when the nurses lightly wave the oxygen mask over his face to help bring his oxygen levels back up. Normally when he desats his numbers pop right back up which is encouraging. This was the first time he has stayed down since we have been back at the hospital so it was frustrating. 

Happy Father's Day

Monday, 6/18

It has been 3 weeks since Dr. P started on our rotation, which means a new attending started – oh joy. Everyone knows how much I love when a new attending starts on our rotation. But Dr. M seems to be ready to take on JD. Within the first 30 minutes of his new rotation he had already spent more time talking to us than other doctors in the past. Whew, thank goodness. Of course, I first launched into how I am not comfortable with a Nissen and I don’t think it is reflux and let’s just get a g-tube, yada, yada, yada.

Dr. M handled it (me) very well. He told me he needed to do his JD homework before he could make any decisions. . .but if he can find strong evidence of reflux we will have to discuss the Nissen Fundoplication – ugh. I am sure a few weeks from now I will be writing trying to find a way to justify why the Nissen was right for JD.  However, until then I will say UGH.

That night my phone rang and it was the NICU (never a number you want to see on your phone). It was the on-call doctor letting us know they ordered a sleep study for JD.

Earlier in the day, the resident and I were discussing any patterns we could find with JD’s desats. Nothing stood out as they happen before a feed, during a feed, long after a feed, while he is filling his diaper, etc . . .yet the one piece that jumped out was most of his desats happen in the early morning between 2a – 5a. AHA, said the girl who has no idea what to do with that info. Maybe he gets into a very deep sleep and stops breathing? The resident said, “umm, yeah, maybe” with a look that said “nice try but wrong.”

So when the doctor called to tell me about the sleep study it made sense. It is a very easy test where they just add a few more monitors to him to check his breathing and his reflux. The hardest part is getting all the electrodes attached.

Okay, let’s do th . . .wait! They only do one sleep study a night and we have to get scheduled in so it could be awhile. Oh boy, more waiting.

Tuesday, 6/19

Sleep study has been scheduled for Sunday evening. It takes two days for the results so hopefully by Tuesday, 6/26 we will have a better plan. However, Dr. M told us he is breaking one of his rules by ordering this test. What does that mean? He said he never orders a test without knowing exactly what he will do with the results – he knows what he will do if the test comes back normal and he know what he will do if the test comes back extreme but he is unclear as to what to do if the test comes back in the middle. Dr. M believes JD may have a blockage of some sort which is making it hard for him to breath . . . or he believes it may be reflux. Yet, if the test does not clearly point to either we will most likely get the g-tube and go from there.

Chillin' in his bouncy seat with good numbers

Reading time snuggles with our little Bulldog (we think he has the cheeks of a Bulldog)

Wednesday, 6/20

Pretty good day until the late afternoon. Nate worked from the hospital in the afternoon and we both noticed JD seemed uncomfortable. He was not desating but he was just uncomfortable. As we left I felt something was off.

Thursday, 6/21

Same routine, Nate headed to the hospital while I prepped for taking Connor to the Shedd Aquarium with my parents. Connor woke up super crabby so the morning was a bit of a struggle to begin with. As Nate was walking out the door I proclaimed “I think JD had a bad night.” He asked why, I said “he just seemed extremely uncomfortable yesterday and I don’t think he had a good night.”

Approximately, 15 minutes after Nate left the NICU popped up on my phone again. Our night nurse was calling to tell me JD had 4, yes FOUR, desats in the early morning. One before a feed, one at the end of a feed, one at the beginning of a feed, then they stopped his feeds and put him on an IV and he desated once with the IV. GOODNESS. What is wrong little man?

We canceled the Shedd so I could head to the hospital and talk to the doctors. He was only getting IV fluids but seemed to be comfortable. During rounds they decided to start his feeds again, slowly. By 8p he was comfortable and back up to full feeds.

Friday, 6/22

By Friday JD was back to his old self, comfortable with his feeds and straight chillin’. The morning was spent with JD while the afternoon was spent with Connor and my wonderful high school friend that now lives in Canada and “AUNT JILL” says Connor at the top of his lungs. We took the kids to Navy Pier and enjoyed the fabulous Chicago summer weather.

Anticipating the Merry-Go-Round

The excitement builds

Morgan

Mason

Connor's first Merry-Go-Round

Driving the boat

Saturday, 6/23

The weekend began with a wonderful family walk from the old Ronald McDonald House near Children’s Memorial to the new Ronald McDonald House near Lurie’s Children’s. It was a brisk 4.5 mile walk along Lake Michigan ending with a enjoyable open house at the new house. September marks my 10^th anniversary of being on the RMH auxiliary board so today I walked a little taller with a strong sense of pride. The new house is spectacular designed to make each and every family feel as comfortable as they would in their own home. Our board (now called The Red Show Society) raised $50,000 (in August 2011 I raised $2,000 as my personal contribution by running the Chicago Rock n’ Roll Half Marathon) in addition to our normal fundraising efforts to create the much needed Volunteer Area for the new house. It was emotional to see the final product after years of hard work. My appreciation for the house is even greater now that I have experienced having a little one away from home. It was a fantastic morning.

Getting prepped for the walk

Our walking team

The Gawels minus one

Lita made a great showing dominating the 4.5 mile walk

Aunt Jill (Connor's favorite on Friday) and Uncle Steve (Connor's favorite on Saturday)

The beginning of the walk at the old house

The end of the walk at the new house

Thank you to everyone who donated to my run

By the afternoon, Nate and I were ready to spend the rest of the day with JD. We both traded off snuggle sessions with our boy but Nate was uneasy. While his numbers looked good he once again seemed uncomfortable. Around 5 I stepped out of the room for a moment and when I came back in his monitors were going off, two nurses were in the room and Nate was holding him. His color started to become more and more gray until he started to turn blue. They gave him oxygen but this was not a blow by this was full on mask which still took him a bit to come back up. It was almost as if he forgot how to breathe. As always with his episodes once he comes back up he completely passes out and his numbers look great.

Sleep Study

Everyone is stumped. These episodes have no pattern or blueprint to explain why he slows his breathing. As of now, the sleep study is still scheduled for tonight (6/24). There are a few different directions we can go based on the results of the sleep study. Good news, if he has an episode during the sleep study it should give us a few answers or at least point us in a direction. Bad news, if he has a comfortable night with no episodes we will continue to be stumped. I never want him to have an episode, yet, I am realistic to know that will not be the case. So, if he has to have another episode it would be better to do it during the sleep study while in the hospital.

Update: As I was updating the post I talked to our night nurse and the sleep study tech was hooking up JD. The test is on and hopefully we will have results in two days.

Everything we read in the WHS community said the first year was the hardest as everyone, doctors and parents, try to understand more about the child. Each child is unique making each diagnosis unique as well. Spending the first 2½ months of your little one’s life in the hospital with lots of ups and a few downs helps the heart grow more and more each day. JD will have many challenges, which in our eyes will always be overshadowed by his many, MANY milestones.

Just keeping you guys on your toes

Lita and her littlest man

Finally comfy and cozy