Friday, July 18, 2014

One week in the PICU

Day 115 overall, 7 days in the PICU - Go William Go!

Friday 7/18/2014 12:30 AM: After we got home I called to see how he was recovering from the filter change. William's nurse Emma asked if we or if she could call back because they were in the middle of replacing the ventilator he was on. She said it was not because of William but rather because on issue with the machine.

Friday 7/18/2014 1:50 AM: William's nurse Emma called and said that William was back on the ventilator and looks great.

Friday 7/18/2014 8:00 AM: Beth is William's nurse today and she said he is doing well. They were able to wean him down to 75% on the FiO2 and he was satting in the low to mid 90's(93/94). Overnight they had gone up on the Vaso again but came back off when he didn't need it. Last blood gasses looked good. Praise God!

Friday 12:30 pm: William is doing better. Down to 60% FiO2 and saturations @ 92. They went up on the treprostinil to 6 and went down on some of the vent settings. 

Friday 8:30 pm: William is still doing good - They have gone up and down on the O2 settings a little as needed. We met and talked with some of the parents with kids in the PICU. There are plenty of other warriors on the same floor with ours! William looks a little bit less puffy overall compared with yesterday. They said that overall his fluid has been negative which is where they want him so he gets rid of the excess fluid. 

Saturday 7/19/2014 8:30 am: William is doing good - They have gone up on the treprostinil to 7 and increased the vasopressin to 1. Overnight they switched him back to a conventional ventilator at 70% FiO2. When I called he was just finished cares and had been temporarily turned up to 100%. 

Saturday 7/19/2014 12:00 pm: William had his ET tube changed to one that has a balloon to seal. He was leaking a little last night and they decided to put him back on the occilating ventilator. His FiO2 was 75% and sats were in the 80's

Saturday 7/19/2014 6:30 pm: William had an up and down day. He is still on the occilating ventilator. His FiO2 was 80% and sats were in the 90's. They are up to 8 on the treprostinil and off the flolan and up a little on the vaso. The ventilator settings were increased some. 

Saturday 7/19/2014 11:00 pm: William has been good so far this evening. He is still on the occilating ventilator. His FiO2 was down to 60% and sats were good. They are still at 8 on the treprostinil and off the flolan and still on the vaso. Apparently he had too much fluid come off too fast and it upset the balance with the blood pressure so they are making slower adjustments. 

Day 117
Sunday 7/20/2014 6:30 am: William has had a stable night. He is still on the occilating ventilator. His FiO2 was kept at 60% and sats were 92 when I called. They are still at 8 on the treprostinil and still at 1? on the vaso even after they went up on the lasix. They are making a little progress on the fluids. 

Sunday 4:00 PM: The PICU just called and said they are having trouble getting William's oxygenation where it needs to be with 100% FiO2 and they are not finding any reason for the change. 

They did take away the flolan yesterday so they are adding it back to see if it makes a difference. So William needs prayers for oxygenation and the hospital staff needs prayers to help them make the right decisions to help William.

Sunday 5:45 PM He's come up into the 80's since the last update. They did add the flolan back. His blood gasses have still been on the low side with PO2 in the 40's

Sunday 8:00 PM Thanks everyone for the prayers. Current status is saturations are in the upper 80's and lower 90's (92 last I saw) still on 100% fio2. Apparently he's not ready to give up the flolan. 

Sunday 11:45 PM "doing well" Same settings, Same meds. Gas at 8PM was PO2 of 53, getting another @ 1:30 AM


  1. So glad to read William is improving. Our little warriors can be so amazing.

  2. William- Go, baby, go on that ventilator! Must be all that Horton :-) You are the strongest boy I've ever known and you keep showing everyone the fight you have in you! I'm still checking on you on this blog your Pop-Pop writes everyday and all of the nurses and RTs at Bayview are always asking about you and checking in as well. You show the PICU that twinkle in your eye that lets everyone know the warrior that is inside of you, and at the same time you are 100% love and snuggles. Fight on, baby boy!

    Mike- this blog is such an awesome way to keep up with William, just wanted to thank you for all the updates and pictures you continue to add. We love having the ability to check in on our boy when we're wondering "I wonder how William's doing.."

    - Nurse Lauren K