One Step At A TIme

Another week has gone by with minimal forward progress. Ryan is getting used to his new home a little more every day. We can see it in the way that he smiles, plays and the readings that are produced on his machines and monitors.

One of the setbacks that the little guy has been through this week is three separate fevers (see photo). They were considered low grade fevers and did not exceed 100.8 degrees. We have noticed that besides the two bottom teeth that have broken through, there are some teeth on the top that want to come out and join the party. That might explain the fevers.

Another incident this week was a phone call at 4:30 am from the nurse saying that Ryan's oxygen saturation went down lower than normal and he started to turn a little blue. The respiratory therapist was able to bring him back to his normal and from then on everything was ok. We were not able to get a good explanation of what happened that morning from the nurse. We have experienced in the past that the nurses tend to get a little nervous and over react at times, especially the nurses that are taking care of him for the first time. Mom and I don't feel that Ryan was in any danger that morning, but we do appreciate the fact that the nurses will call an emergency if they are not sure of his current state.
I was informed today that they have gone down on his oxygen requirements. The respiratory therapists were able to reduce the O2 from 45% to 44%. This may not sound like a whole lot of change, but Ryan is so sensitive. These little adjustments are the only way he is able to accept change. They have tried to wean on the O2 by 5% in the past and it only seems to set him back even further. It may be slow, but we are happy to take the time in order for Ryan's best interest.

Ryan’s care plan meet was bumped up from 6/26 to 6/19. We weren’t informed of the change or error until the morning of 6/19. We were both able to attend and didn’t feel that we received any information that we didn’t already know. It felt that the managers from all of the departments get together to make sure that everyone is on the same page. Any changes have to come from talking to the doctors, who were not at the meeting.

"There's No Place Like Home"

Today is day 11 at this new pediatric sub-acute facility.

The first few days of Ryan being in this establishment was hard for him, and for us. The way that the staff completes certain tasks is different than what we all are used to. Mom and I are starting to adapt to these changes. Ryan is trying to adapt and we can see that slowly he is starting to adjust.

The forward progress of his recovery is non existent at this point. Even though he has gained a small amount of weight, his oxygen requirements have gone up. At the pediatric ICU Ryan was requiring 37% O2, at this facility he is now needed 45% O2. Maybe it's the change of being in a new place with new sounds, smells and people. At least that's what mom and I are blaming it on.

This facility has recently sent us a letter at home that states on June 26 at 2:45pm they would like to invite us to a "Care Plan Meeting" that the staff is involved with. We will be able to address our concerns in regards to the care that Ryan is receiving. So far we have three topics to bring up. I am sure we will find more as we get closer to the time.

The saying "There's No Place Like Home" declared by Judy Garland in The Wizard of Oz, takes on a whole new meaning for us now that Ryan has not been home since 12/20/11.

A Late Start

This blog should have been started 15 months ago, but due to the complications of Ryan's health it has proved difficult to complete.

We will give a quick overview of the events that have taken place up to this point.

Ryan's adventure started on February 24, 2011 when mom's water broke at 22 weeks gestation. After mom was ordered to strict hospitalized bed rest for 2 weeks, Ryan decided enough was enough and was born on March 8, 2011. He was officially labeled as, what the medical field calls, "a 24 weeker".

Born 1 lb. 12 oz., Ryan overcame the slim odds of survival and was starting to grow. After 6 extensive months in the NICU, 4 surgeries and many different ventilators that helped save his life, Ryan was diagnosed with bronchopulmonary dysplasia (Chronic Lung Disease) and moderate pulonary hypertension, but was still given the OK to go home.

The little guy was finally able to see what the outside world was like. He was able to stay at home for the following two months after his discharge from the hospital. Mom and Dad were just starting to figure out Ryan's routine when he turned blue in the face one night from lack of oxygen. Following a 9 hour visit to the Emergency Room, Ryan was transferred to a pediatric ICU and admitted for respiratory distress and pneumonia. This hospitalization was only 7 days.

1 more week at home and the three of us found our way back to the hospital again for respiratory distress. Again, only a 7 day hospitalization.

We were able to enjoy a two week break from any hospital when December 20, 2011 came along. Little did we know that the two week break from the hospital would be our last time our family would be at home together up to this point. For the third time now, Ryan was admitted to the hospital for respiratory distress. This hospital stay was way more intense than the two previous. There were two very close calls to Ryan's health. Both were extremely life threatening. He was able to bounce back and was able to leave the Pediatric ICU after 6 long months.

Due to the doctors wanting the best for Ryan's safety, they suggested that he be transferred to a pediatric sub-acute facility for further monitoring and lung growth.

Day 3 of the fighter trying to rest in his corner of room 122.

So far the transition has been a little rocky, but the staff is trying their best to make everything as comfortable as possible for him.

We will update with any changes to Ryan's journey. He is not quite out of the woods yet, so there should be more to come.

  - Ryan's M & D