D's Hospital Stay {Part 2}

Monday, May 4, 2015

If you missed {Part 1} you can find it here.

When we were released from the hospital on Wednesday, they had scheduled us for a follow up appointment at our Pediatrician's office the following morning.

At that appointment, his lungs still sounded pretty bad, the wheezing was still there and his pulse ox would not get over 89. We were prescribed some oral steroids, they put in an emergency referral to see a pulmonologist (the closest one is at Shands in Gainsville) and recommended that, in the mean time, we follow up with the allergist/asthma doctor. Thankfully, we were able to be worked in with the allergist immediately following our appointment at the pediatrician. Because his pulse ox was still low, the allergist (after conferring with the pediatrician) decided we should be re-admitted until we could get in with the pumonologist. Better safe than sorry!

Unfortunately, we were sent back to the ER and waited there to be re-admitted to the pediatric floor. While in the ER his pulse ox would not get over 87 and was dropping into the 70s so they put him back on "blow by" oxygen.

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Once we were settled back on the pediatric floor, they put him back on the oxygen cannula and did a chest xray. They xray came back that he now had pneumonia in the right lung, so they started an IV in order to start some IV antibiotics. Unfortunately, the only decent veins they could find were in his left hand, which happens to be his thumb sucking hand. He typically sucks his thumb to fall asleep so not having access to it took a little adjusting, to say the least.

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The following day, he had not improved and the doctors were still at a loss on what the underlying issue was. They planned to keep him in the hospital through the weekend and into the following week in hopes we could get an outpatient appointment with the pumonologist within in a couple of days. We found out mid-day on Friday that the soonest appointment we could get was in August, so unless he was an inpatient at Shands, we would have to wait until them to be seen.

Because this had been going on for so long and because we really didn't have an resources for help outside of the hospital (his pediatrician and allergist both referred us to the pulmonologist, we made the decision to transfer him to Shands as soon as possible. We left Friday night around 10pm and arrived at Shands around 12:30. Dayton did great on the ride, didn't make sound and just stared at all the lights. I, on the other hand, had a hard time and got really car sick. Fortunately, I made it there without episode but it was close.

Jason and his mom followed in their vehicles and arrived to our room just about the same time we did.

Side note, the sweet EMT that drove us there was also a 28 weeker (born in 1983) and was a tall, healthy guy who was proud of his former preemie status! I love meeting former preemies and seeing how great they are doing!

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We didn't get settled in and asleep until around 3am so our 7am visit from the nurses and doctors came really soon. The big man was his normal happy self and did so great with all the poking and prodding by a new group of medical peeps.

Whenever a child is hospitalized for unknown respiratory issues, they are put on contact & droplet isolation which means that all medical personnel who go in and out of our room had to wear gowns, gloves and a mask. It had to be weird to wake up with masked people over your bed looking at you, but Dayton didn't miss a beat. The kid has never met a stranger.

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Saturday morning they took us down for another chest xray which ended up showing Atelectasis in the right upper lobe, which the pulmonologist believes was the cause of the lower oxygen levels.

(Atelectasis (at-uh-LEK-tuh-sis) — a complete or partial collapse of a lung or lobe of a lung — develops when the tiny air sacs (alveoli) within the lung become deflated. It is one of the most common breathing (respiratory) complications after surgery. Atelectasis is also a possible complication of other respiratory problems, including cystic fibrosis, inhaled foreign objects, lung tumors, fluid in the lung, severe asthma and chest injuries.
The amount of lung tissue involved in atelectasis is variable, depending on the cause. Signs and symptoms of atelectasis also vary. Atelectasis can be serious because it reduces the amount of oxygen available to your body. Treatment depends on the cause and severity of the collapse.)
So, with the new diagnosis they began more (different) breathing treatments, chest physiotherapy and began oral steroids. 
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The rest of Saturday we just hung out and let all the meds start working. Within 12 hours of being on the steroids we started to see some improvement. His base oxygen levels creeped up to 91-93, then by Sunday it was 93-95 and slowly worked it's way up to 98-99 by Monday.

On Saturday, Jason's Dad & step-mom (Grandpa & Grammy Jan) came to visit. They are only about 15 miles from the hospital so it was easy for them to come over and sit with D for a while and also give us all a little break from being stuck in a hospital room.

That night, Jason's Mom (Grandma Buzz) stayed with D so Jason and I could grab a quick bite to eat. The short break was much needed and we were so appreciative to have a few minutes alone (even though all we talked about was Dayton...lol.)

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By Monday afternoon, he was feeling better, looking better and keeping is oxygen levels high enough that they decided to release us the following day (Tuesday). Jason had gone home due to work obligations on Sunday, so he drove down on Tuesday morning to pick us up. We were so happy to leave.

While we still don't know what caused the Atelectasis, they speculated it was from a virus of some type. They also believe that he has Chronic Lung Disease of Prematurity, which likely contributed to everything. This also means he is more susceptible to infections and respiratory complications in the future. Needless to say we are back to being (more) cautious about germs!

Now that we are home, he is on a control medication given by inhaler twice a day and we have additional steroids and albuterol for emergencies. We will go back to Gainsville for a follow up and chest xray on the 13th and we pray everything is clear. 

There really is nothing worse than seeing your child sick and, not only not knowing why, but not being able to help them. I can't stress enough how important it is to follow your instincts when it comes to the health of your child. We knew for so long that something was wrong and our persistent demands for answers finally paid off and we were able to get the care he needs. 

We are hopeful he will grow out of the Chronic Lung Disease but for now, we just continue to do what we have in order to keep him growing and happy. 

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