Extubated and Move to PIC

Monday, March 20th:

Tho had a good night and his morning x-ray showed slight progress. They have turned his PEEP down to 6 and his oxygen is at 25%. They are hoping to wean him down to 21% which is room oxygen. They got the results of his bloodwork and they are still holding off any kind of blood transfusion. There is still no growth on his blood cultures, so we can wrap up antibiotics tomorrow. 

During the late morning Theo was very awake and wants to hold his iPad, roll over, and “go.”

Case Management approached us and asked if we wanted to stay at the Ronald McDonald House. Apparently they have a lot of openings. We applied and they did a background check. We passed that, so Josh will be staying there tonight! 

During the afternoon they started switching on the CPAP setting for one hour every four hours. There is still pressure and airflow, but the CPAP setting allows Theo to breathe on his own. The first round went well, but they did have to increase his oxygen level to 30%.

Theo's PT, Ms. Cody, sent us a gift card for Monical's Pizza. It was delicious! Thanks Ms Cody!

After dinner Josh drove over to the RMH. It's less than a mile from the hospital, which is great! They set him up in a nice apartment which has a couch and TV, a separate bedroom with a queen size bed, and a big bathroom. There are shared common room areas with couches and TVs and three huge kitchens on the first floor. They even have volunteers that come in frequently to cook dinner for everyone! This RMH opened in December 2019 and has been a huge help for the families that visit these large hospitals.

[Our room is sponsored by BCBS 🤔]

Every three hours during the night they would switch Theo over to CPAP mode. He did well and was breathing on his own.

Tuesday, March 21st:

Theo did pretty good with the test during the night. There was one time that he struggled, but they turned down his fentanyl a bit and he did better. 

We noticed that Theo was looking a little pale this morning and we brought that up to the doctors during Rounds. They didn't seem too concerned, but they did bring up the possibility of doing a blood transfusion again. They are going to check his numbers this afternoon and decide then.

Theo’s numbers have been hovering around the transfusion line since he was admitted and the bloodwork from that afternoon showed a slight increase and his numbers. Great news! So the transfusion was cancelled for now.

Theo continued to do well with the 1 hour CPAP test, so they increased it to every two hours for two hours.

Those test went well and he is able to tolerate a lower PEEP number. He is breathing on his own, but they had to increase his oxygen a few times.

That night I went to the RMH and it was great!

Wednesday, March 22nd:

All of Theo’s CPAP trials went great last night. He isn’t looking as pale as he did yesterday and they plan to extubate him after Rounds. He has been on fentanyl for 7 days, so there is a concern for withdrawals and 75% of people on fentanyl for 7 days or more have withdrawls (it's 100% for 9 days or more). Once he is extubated they will put him on a high flow nasal cannula oxygen. He will remain NPO for now since they don’t want him to have tummy issues if there is air getting into his stomach.

[A lot of doctors and nurses in the room during extubation]

Extubation went great and Theo seems so much happier! He will get the shake vest, nebulizer, and cough assist every four hours moving forward. His lung isn't fully healed, but that could take months.

[So happy!]

That night I drove back to Minooka so I could get my allergy shots, workout, and do some laundry. We've also had an appointment to get our Master bathroom shower glass replaced and we didn't want to reschedule. 

Thursday, March 23rd:

The shower guys were quick and did a great job! Our door is now wider (which should come in handy when we need to roll Theo in there for showers) and the glass is taller. I think it turned out nicely!

[Before]

[After]

After I ran all my errands I headed down to Peoria to meet up with Josh and Theo.

PT brought in a chair and Theo did really well sitting up!

His daily x-ray showed an increase in opacities in Theo’s left lung which has the doctors concerned. He just doesn’t have the strength to keep that lung open on his own. So they are going to hook him up to a cuirass ventilator, which is a negative pressure ventilation system (like an iron lung). They put this chamber on his chest and it uses negative pressure to pull his chest open. The device is pretty cool and they can change it’s settings so it can perform the same function as the high-frequency oscillating vest.

Theo had the cuirass ventilator on for just under two hours when his oxygen and temperature dropped. The nurse wasn't able to get a temperature accurately so they had to put in a rectal thermometer. His temperature was 93.7, so they brought in a "bear hugger" and turned the temperature up in the room. It was super strange because he didn't feel cold (just a little cool), but he was hypothermic! 

The "bear hugger" is a big blanket that has hot air circulating through it:

We all just starred at the monitor until his temperature and oxygen levels started to rise. It was super strange! Even after Theo was warmed up he was very lethargic and wouldn't wake up. They decided to take an arterial blood sample to check his gas levels (including CO2). They also did another x-ray.

They MAY try the iron lung again tomorrow, but tonight they will just do the oscillation vest and cough assist.

Friday, March 24th:

I woke up early to a text from my dad. He told us that his mom, our Nana, had passed away. She was such a sweet woman who loved her family dearly. It's been hard to watch her suffer over the last few years. It brings peace knowing she is no longer in pain. She leaves behind her husband of 71 years (our Papa), 8 children, 7 SIL and DIL, and over 100 grandkids and great grandkids. 

We won't be able to make it to her funeral, but we will be there in June for a memorial.

Theo had a great night and woke up just before 6 AM. He is smiling and laughing at his music and trash bags. He is still tired, but his stats are great and everyone says his lungs sound so much better.

They did an x-ray and it looks much better. We can actually see the outline of his heart! They are going to skip the x-ray tomorrow since he is making good progress. 

That afternoon we got Theo up in his chair and gave him a bath. We aren't able to get all the sticky crap from the electrodes out until we get home, but he looks so much better!

After his bath we FaceTimed with his class! They all miss him so much! One of the little girls grabbed the phone and tried to kiss Theo! When Theo saw his bus friend and Ms Jess he really perked up!

He was very tired from all the excitement and ended up sleeping for the rest of the day.

They continued with the shake vest and cough assist every four hours. Theo had a few “episodes” where his oxygen levels would drop and they would have to raise his oxygen flow. But he's still improving.

[Lakers are holding strong!]

Saturday, March 25th:

Theo was up early the next morning and was ready to play with his dada! He was very alert, but he is still having random desats during the day.

They moved us out of the PICU (421) and across the all into the PIC (413). 

Sunday, March 26th:

Theo's alarm went off a lot in the night and since there are less nurses in the PIC it takes them a little longer to respond to issues.

Theo sat up super strong in his chair and had fun playing with some of his peek-a-boo games.

Hopefully we will be moved upstairs to Gen Peds in the next few days as long as Theo's oxygen levels are steady.