Monday, March 27th:
Theo had no desats in the night! YAY! PT came by and did some stretches with Theo. He sat in his chair for a while and played Peek-a-Boo Barn and Presents.
Theo was doing so well that they reduced his oxygen to 21% and 2 L, but then he desated twice. The first time he dropped into the low 70s and we had to turn his oxygen up pretty high to get him back into a good range. About 30 minutes after his respiratory therapy he dropped into the low 80s. They had to increase his oxygen again.
He was very tired after these two desats, so he slept for the rest of the day.
The doctors stopped by for Rounds and ordered another x-ray.
Dr Stewart came by! She said we need to be more aggressive with Theo's treatments. She recommended flipping him over during the shake vest. She also increased his cough assist to +20/-20 from +10/-10 (with the option to go up to +35/-35) and Dr. Stewart ordered that the shake vest be turned up to 80% from 50%. She also looked over his CT scan with Radiology in the hopes that they would diagnose Theo with Bronchiectasis. If they were able to get a diagnosis then our insurance would pay for the $16,000 shake vest (they don't want to get Theo a vest, but they have no problem paying $44,000 for a helicopter ride?). The Radiologist said that she couldn't diagnose him while he was still sick. So we are going to have a CT done 2-3 weeks after discharge. Josh has been busy hunting for a shake vest since Theo got sick and we were able to get one second hand from a family in Texas. They only had us play shipping! We told Dr Stewart that it had just arrived at our house and that I was planning on going home on Thursday and would bring it for her to look at on Friday.
Tuesday, March 28th:
Theo slept well last night and didn’t have any desats but they kept his oxygen levels high. Respiratory came around midnight, but not at 4:00 AM. Apparently the orders say not to do respiratory therapy if he is sleeping, but he's always sleeping!
Respiratory came at 8:00 AM and did another treatment. I asked her if she could change the order to say to give him treatment every four fours regardless if Theo is sleeping or awake.
Theo had a great day! His oxygen levels stayed high and they were able to wean him some more.
Dr Stewart was very happy when she stopped by. Her suggestions worked (of course!) and she said we may be able to go home in a few days. She suggested that we bring “The Vest” to the hospital for her to check out and show us how to use it. I told her I would get it on Thursday, but she had high hopes that we would be discharged before Friday. YAY!
We decided that I would drive home that night and come back on Wednesday with "The Vest."
Wednesday, March 29th:
The next morning I got up early and did a long workout (2 hr 45 bike and 1 hr 20 minute run). I'm still trying to train for my triathlon 🤦♀️
After my workout I did laundry, packed, went and got my allergy shots, and then made the long drive back to Peoria.
Theo had good day! He was more awake today then he was yesterday.
That evening Dr Stewart stopped by and showed us how to use "The Vest." She said to set the shaking at 20 (the highest setting) and wean him down if he can't tolerate it. She set the pressure at 2 and the timer for 20 minutes. She said she they were all working on getting us a portable cough assist and suction machine for the house.
That night the respiratory therapist said that Theo’s lungs don’t sound so gunky anymore, but he still needs better airflow.
During the night they tried to keep Theo's oxygen low, but it just kept setting off the alarms because he was bouncing between 89 and 90. I finally asked the nurse to turn it up a bit.
Thursday, March 30th:
At 1:30 AM a nurse came in and told me we would be moving upstairs. I asked her if I should start packing and she said we could move in the next hour or next three hours. I decided to just go back to sleep. 30 minutes later she barged in, poked my leg, and said we needed to move. As I was packing the nurses were just starring at me. I was very grumpy. As we were moving out of the PIC I noticed at least two rooms that were empty. I don’t understand the rush, but this isn’t the first time this has happened. Of course, I only ended up getting about 3 hours of sleep total. It was awful. I'm glad Theo slept through it.
[Using "The Vest"]
[His poor nose!]
Theo did really well today. We talked to Case Management (again) and they are working on getting us a portable suction and portable cough assist.
They slowly weaned Theo’s oxygen today and they took off his cannula at 5:00 PM. His nose is very sore and red. He was good in the mid 90s until he fell asleep and then he crashed into the 70s. They put him on a low flow cannula for the night between 2 L and 4 L.
I was exhausted from the move, so I headed to the RMH earlier than usual. Dr Stewart stopped by and was surprised that we were still there! She said she would be fine with him going home on oxygen as long as he is on less than 1 L.
Lakers are going to make the Play-In! I just know it!
More history:
Friday, March 31st:
NO oxygen during the day except naps and it was only 1/2 L! YAY!
We had a pretty intense afternoon! We knew that our area was at a high risk for severe weather, so we turned on the local news. We watched live as a tornado dropped just southwest of us and started moving our way. We talked to our nurse who brought us a portable oxygen tank for Theo and then she told us to close our blinds. She stayed with us while the storms hit just in case we needed to move Theo into the hallway. We lost satellite during the height of the storm and when it came back online we saw that the hospital was on the news! It looks like the tornado stayed on the other side of the river, so we were safe!
[We are in Peoria - on the border between the red and purple]
[Tornado touchdown]
[Here it comes!]
[All clear!]
Dr Stewart stopped by and she told us to use our vest as much as we can while we are here too. Later that afternoon we used our vest and Theo was coughing a ton! He tolerated it at 20 and 2 for 20 minutes. YAY!
Saturday, April 1st:
Theo had a good night. We had to adjust his oxygen a couple of times, but he stayed between 0.5 and 2.0 L.
The doctor said we should be able to go home today if Theo can stay on room air during his nap. But we aren’t sure if we can get the equipment to go home on the weekend.
Theo slept for 4 hours and stay at 94% the entire time! YAY!
Dr came in and said they can’t get the equipment until Monday. UGH!
Sunday, April 2nd:
Theo didn't need oxygen all night and he hasn't needed any since Friday night!
We are all just hanging in there! We just want to go home!
[Still looking good!]
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