Prayer for William

Prayer for William at Lighthouse Church.

Week 3 in the PICU

Today is Tuesday morning 7/29/2014 that I am starting this post. Today is day 126 overall and day 19 in the PICU. The past few days have been good. They have been able to come down on the FiO2 in the 65%-75% range and he was satting well. They went up on the Treprostinil from 8 to 10. Blood pressure has been stable for the most part without any medicine.
They placed a new ND tube further down into his intestines and started feeding him pedialyte at first and now formula. They had talked before about a blood clot history and there had been some difficulty in visualizing it. Apparently it is near the tip of the inferior vena cava in the right side of the heart. The concern is that if it would break free it would travel to the left side of the heart and could reach the brain and cause a stroke so they started a course of heparin to dissolve it.
There was an additional sedative medicine (pheno-something) started a few days ago and that seems to have worked well for stabalizing heart rate and oxygenation. They were talking about adding Dexmedetomidine but haven't needed it.

Wed AM 7/30 They reported a good night overall and FiO2 was down to the lowest it has been 60% They did give a 2nd dose of cidofovir and probenecid, the antiviral and the antibiotic to protect the kidneys Tuesday.
Fluid levels - Overall the past few days have been fluid negative which has reduced his weight and his appearance overall had looked better. Tuesday was the exception because of the fluid required with the cidofovir.
There was a fracture of his right collar bone that was difficult to see on the xray so the doctors are not convinced that the diagnosis is conclusive. He has had so many xrays, it's hard to imagine it was missed before but the focus of those fils was on the lungs and ET tube/ND tube placements so who knows.

The ophthalmologists gave him an eye exam Tuesday night and there are basically no issues from the ROP. He said his blood vessels are almost fully formed and no need to see him for another 4 weeks.

Wednesday PM update 7/30: His FiO2 was up a little bit (70-75) They had one issue with the ET tube being down too far and one lung was not inflated fully, but they repositioned and retaped the tube. You couldn't tell though. When I left he was satting 99-100!!
He was back to fluid negative ~70 for the day and looking better overall fluid wise. He was moving a little bit which Courtney his nurse said was fine as long as heartrate and blood pressure were good. I was holding a hand on his head and foot and felt him pushing his foot and moving his head a little and his eyes were kinda blinking and moving his eyelids. I could also see some movement in his torso/chest.

Thursday AM update 7/31: Doing well still - has a short blood pressure drop and bumped up on the O's but is settled back down to 60% and He is getting all his nutrition in his gut now through the ND tube - no IV nutrition. Emma is his nurse again and she said he is 1 Kilo smaller than the last time she saw him (a good thing-fluid loss)

Thursday PM update 7/31: PM Update - Today was good! FiO2 ~60 most of the day and satting in the 90's, they were able to wean some ventilator settings and blood pressure was stable, went up on the lasix, switching to lovenox from heparin.

Friday AM 8/1:  Technically this is starting the 4th week in the PICU but I'm keeping this post going. Had a good night, 1st gas was off at 7PM last night so they went back up on a wean they had done earlier. He was a little fluid positive for Thursday, but that was expected some with the feeds at the target amount. Apparently the fluid from feeds is better than the fluids from IV nutrition. Hemoglobin was 10.7 so he got some blood, not unexpected from all the blood draws for labs. Megan was his nurse.

Friday PM 8/1: Had some ups and downs today. Sats when I was there were anywhere from 81 to 93. O2 had been up to 90 but came down to 70% I think. We read some books. He seemed pretty sedated, but heart rate was creeping up a bit into the 150's - He does better in the  130's,140's.  Just before I left he had a diaper that could have peeled the paint off the walls P...U. Treprostinil was increased from 10 to 11.

Saturday AM 8/2: (This is week 4, but I'm editing this post still.) Pretty good night overall with Shannon his nurse. Said they went up and down on the ventilator settings currently:  MAP 21 Delta P 34 Hz 8 60% FiO2. Sats in the mid 80's. Fluid  +40 for yesterday so better than Thursday. At 3am his blood pressure and heart rate were up so they gave some PRN's.  Treprostinil was increased to 12 - I was surprised they are going to 20. Beth is his nurse again today.

Saturday PM 8/2: Courtney was back with William and when I called it was late so the details are a little hazy. They were up to 14 I believe on the treprostinil and blood pressure was still fine. He was fluid positive again so they combined 2 IV fluids that should save some fluid volume over time FiO2 was 60, sats good.

Sunday afternoon 8/3: Beth had William again today. We visited William for a few hours. He was up and down in his sats and FiO2. Sats from 73-90 and FiO2 80-60. Pastor Paul and Mrs Vicky paid William a visit. (for free) Blood pressure was a little lower today overall. Treprostinil was up to 15. Courtney is back tonight and I will call later for an update. We did take a picture:

Fluid compared to a week and a half ago:

Monday 12:45AM 8/4: Doing pretty good, up on treprostinil to 16, 8pm weaned delta p mid night gas acidotic so unweaned (is that a word) back to original deltaP. 60% FiO2, sats-mid 80's, BP lower 90/50
30 positive end of the day which is better than the past 2. 

PICU Day 118 - 122

Monday July 21 2014

Day 118 overall, 11 Days in the Johns Hopkins PICU - Go William Go!

Monday 7/21- Sats were pretty much in the 70's and 80's. I took a few pictures and he's got a good bit more fluid on him. They were having to give him a little more.

Tuesday 7/22/2014 Day 119 - We met with the doctors today and went over his care in general. The past 2 days have been up and down with sats in the 75-85 range for the most part with an occasional dip into the 60's and 50's for a short time and then up into the low 90's a bit as well. This is all with FiO2 of 100%. They have needed to give him some fluid to increase his volume and that made his sats go up. Sometime today they also gave him some blood to boost his hemoglobin.

While we were here he came up into the 88-92 range for his sats. They started him today on cidofovir which is an antiviral that can be used against adenovirus but there is a risk of renal toxicity so they have a protocol where it is given with probenecid to reduce the risks.

Tuesday 7/22 11:00pm: We called for an update and Elizabeth said he's been doing fine. No desats and keeping himself at 75 and above so far.

Day 120 - Go William Go!!  Thankful for another day with our little warrior. 
Wednesday 7/23 6:30AM: William's nurse Elizabeth said he had a good night. He was up in the 90's with his saturations so they decided to wean his FiO2 to 90%. His Sats were 81 an hour later. His PO2 in the blood gasses last was 39 and they may decide to change the FiO2 if the next blood gas is not improved.

Wednesday 7/23 10:00AM: William is back up to 100% FiO2 after having a little bit of desatting during morning cares so they increased the Dilaudid a little based on that and that he needed a little more overnight. At the time I called he was in the 80's.

Wednesday 7/23 2:00PM: William is back up in the upper 80's low 90's for sats. They were able to go up a little bit on the lasix to try to get some more of the fluid off. So far there are no signs of issue with kidney function from the cidofovir. 

Wednesday 7/23 6:00PM: visited my favorite baby William and read Clifford and Horton. He looked a little less puffy and had warm hands and feet. They had turned up his temperature a little bit. His saturation numbers were 80 when I got there and 85 when I left. His last blood gas was better 47? (I think)

Wednesday 7/23 11:00PM: Emma returned as William's nurse tonight. When I called she said they had weaned the FiO2 to 80% and sats were 90. They went down on the lasix and down on the blood pressure medicine. Keep up the good work William!  Praise God!!!

Thursday 7/24 day 121: Overnight they were able to get The O2 down to 85% 

Thursday 7/24 9:30pm: 

Friday 7/25:  6:30 update: nurse Emma said the art line was working better than she initially expected. They are getting a good wave form on the monitor and are able to get blood from it so maybe it was just spasms from when they first placed it. 

He got a little bit of blood and they were able to come down on O2 to 80% and down on the blood pressure medicine (vaso)

12:30 update - Was on 75% FiO2 and they stopped the Flolan at 11am which is one of the medicines for the Pulmonary Hypertention. Julie is his nurse today and she said that she tried to reposition him on his side slightly and that made him mad and his sats went down such that they bumped him up to 100% again but they are going to try to bring that down again slowly.

When I visited at 5:30-6 he was in the upper 70's with his sats and 90% FiO2 and then he had a desat into the lower 70's and Shane from RT and Julie his nurse were planning to take him off the ventilator and bag him for a bit and try to suction but just as they were about to start they got a call to hold off. They let him settle out and he climbed back up into the mid 80's. He was back to 100%

9:00 update. Courtney was his nurse again and said he had been fine and no changes were planned. He was in the 80's and she said he had recovered earlier and had been in the 90's for sats so they weaned him to 90% FiO2. 

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

PICU Day 112 -114

We are thankful for another day with the Warrior!

Tuesday 4AM 7/15/2014: Got an early call this morning to say they lost one of the peripheral IVs and they didn't want to wait for the PICC team and tried to put in a central line but couldn't.
He's bumped up on the priority with the PICC team. Praying for a success in getting a PICC line in and working. This is important because of all the medications he is getting and that they lost one IV.

Tuesday 9:30 AM: PICC team is there, they have consent. The Docs are still trying again with the central line. I am praying for Baby William and the Docs and the PICC team to be successful.
Go William Go!

Tuesday 12:PM: PICC line was successful. They are calling me back with more information. All I got from the nurse is that they had a "busy" morning. They said they added dopamine so I am guessing that his blood pressure needed support. This could be a result of the diuretics - and she said he had some desats and they had to go up to 100% FiO2.
I hope and pray it was because of the procedures and that he settles back down and they can better balance all the meds and focus on getting him stable, not worrying about IV lines and trying to manage all his meds through less lines than required. They said earlier they were having to stop some meds to run other things through.

Tuesday 3PM: I got the call and barely got my questions out before the doc got a call for another kid in crisis, knowing that I wouldn't want him talking to another "parent" when William needed him I told him to go, but He did say he's a little better than earlier and that's all I need to know. He mentioned the fluid and diuretics, basically I think they need to manage the fluid gain better but be careful with the blood pressure. Go William Go!

His mobile came! Amazon prime is good stuff! 4C batteries and some triple A's away from some good tunes you like WtW!!!

Tuesday 7PM: Man we had a rough night. Basically right near shift change he started desatting from low 90's(93) to the 80's and then over a half hour had drifted to 75 and hung there with 100% FiO2 on the occilator. The fellow that was on day shift stuck around for 90 min trying some vent changes and getting a full set of labs and a chest X-Ray, but nothing really showed a problem.

Tuesday 8PM: They gave him blood since his hemoglobin was on the "lower" side @ 10 something I think and after an hour or so he came up into the lower 80's but it didn't last long and he was back at 75.

Tuesday 10PM: They decided to replace dopamine with Vasopressin and start Treprostinil slowly. At some point his blood pressure was steady and they stopped the dopa and the vaso. I rested for a few hours and checked on him

Day 113 - Go William Go! 16 Weeks old today!

Wednesday 2:30AM:  I woke up to check on him and he was in the mid to upper 70's(77,78) and I sat with him and we talked and I decided to read his favorite book (Horton hears a Who) By the time I was done reading he was satting at 84 and steady. Hey if it's this easy I will read that book 10 more times! I decided to get some more rest and let him settle. His nurse Courtney found him some music and got him set up - maybe it helped me rest as well.

Wed 6AM 7/16/2014: I woke up and took a peek and he was back to satting at 94, blood pressure good, heart rate down and looking more stable. His nurse was pleased and said that sometime @ 4AM he had crept back up into the 90's and stayed there. He was a little more stable with all his vitals so I felt comfortable leaving to go home. I hung out with him for a bit and then headed home asking them to call if anything changes.

Wed 12 Noon: William is doing about the same as he was this morning. They are slowly making changes like increasing the Treprostinil.

Wed 6 PM: William is as good or better then when I left him this morning. They went up on the Treprostinil and were able to wean to 95% on the FiO2!!!!

Wed 8 PM: William decided to desat a little bit into the upper 80's just as his nurse started the night with him. She didn't increase the FiO2 right away which I thought was a good thing and tried to make other adjustments. His blood pressure was a little low and he seemed to have better sats during the day when the pressure was a little higher. 
They gave him a dose of albuterol and increased the Vasopressin .1, .2, .3 over time. With the albuterol he did pop back up in to the low 90's and I felt he was in good hands all around and went home for the night. 

Wed 10 PM: I called and William was back to cooperating and satting in the high 90's (97) and while they did go up on the O's he was doing well enough that they might have considered weaning him again. They were coming back down on the Vaso to .2. I asked for a call if there were changes and didn't get any calls. I wouldn't say I slept great, but I slept better than the last couple of nights.


Day 114 - Go William Go! 


Thursday 9AM 7/17/2014: William had some trouble with blood pressure this morning after an increase in the Treprostinil. They gave some blood to keep the hemoglobin up, calcium and are doing another echo today to look at pressures and blood flows. 

Thursday 12 Noon: They are planning to transition off the flolan onto the Treprostinil. They started and infusion of calcium. The hemoglobin helped. He had the echo but they didn't have results. His O2 sats were in the high 80's but they increased the fentanyl a bit and they came back up. His nurse did mention that she was able to wean the O2 back to 95%. 

Thursday 5PM: William is stable and they went up on the Treprostinil. Blood pressure has been stable and they were actually able to come down on the vasopressin. FiO2 has been weaned again to 90%

Thursday 8:30 PM: William is stable and they went off of the vasopressin. Blood pressure has been stable and O2 Sats were in the low 90's. He got a dose of calcium in addition to his  infusion. He was at 1.09 and they want to get him to 1.20 FiO2 was weaned again to 85% before we got here and further 80% with stable sat's in the 90's(92) 

Since no night lately has been without some excitement, tonight was no exception - they went to change the filter on his ventilator which should only take a second or two and the filter size was wrong or the adapters were differentand then the ventilator wouldn't restart so they had to bag him by hand for a little while, He did fine with that but once the vent was restarted, it took him a little while to recover. We headed home of the night as he was coming up in the mid to high 80's for his sats.

PICU Day 108-111

After 3 days in the NICU, William ended up in the PICU.

On Friday morning 7/11 they could not get the PICC line and they struggled but eventually got an arterial line placed. They decided they wanted to try Flolan and Midazolam and the PICU was needed for those, so He went down there @ 3PM and Here's the thing... He left NICU at 100% FiO2 (not sure the vent settings) and satting in the mid 90's but when we came up from eating lunch and he was settled in at the PICU, he was at 60% FiO2 and satting at 99! The fellow is thinking infection to blame for the acute changes we have seen today, but there isn't yet an answer on that.

Friday night 7/11: So here we are about 6 hours after the transfer to the PICU and William is doing better than he was in the NICU. HIs current vent settings were 60% FiO2 26 over 10 with nitric @ 20ppm Sats are 99. Going from 100%-60% seems like a big difference in a short time when up in the NICU they were saying he wasn't even tolerating weaning to 95% but here we are 4 floors below and satting at 99 with 60%?

He's still on the sildenafil, steroids, fentanyl, paralytic and they added Midazolam to aid with sedation/relaxing. They also added a nebulizer with Flolan, but just as they started it he desatted to 85 and they upped the FiO2 to 100% and he still desatted to 73, so that brought the whole team in for a visit and they bagged him for a little while and ended up getting an xray and repositioning the breathing tube a little bit. They are still working on getting the right lung inflated better.

Saturday 7/12 morning: Overnight they tried to re-recruit his right lung which was not inflated enough. They said that @ 1AM after we left he was hanging in the low 90's for saturation and @ 2AM he had a little detsat, but after that was satting at 99 and they were able to wean back down to 70% from 100% - He was at 100 after the desatted at the beginning on the Flolan and they did an Xray and repositioned him and his tube a little bit. So overall a stable night compared to the hectic past 24 hours.

The PICU "atmosphere" is a little more like Bayview NICU compared with NICU upstairs.

Saturday 7/12 6PM update: We found out today he's got an infection, so the Fellow was right and they adjusted the antibiotics to combat what they have grown in the culture (3 things) I think they apply antibiotics to the culture to make sure what they are using can kill the infection.

I'm not sure about this, but I feel like it's a good thing that there is something we can fix and blame for the sudden course change vs simply a progression of his lung disease or him growing out of his lungs, etc. I don't want him to have an infection but at least it is treatable. We finally felt comfortable leaving him up there for a while today. Yesterday was a 14 hour day.

Sunday 7/13 morning update: Got a 5am call from the fellow that scared me but she started with "William is fine" but he had had some significant desats and they found his hemoglobin had dropped from to 6.1 and they were calling to get consent for the transfusion.
Otherwise he had been in the 70's for FiO2 and they had tweaked the vent settings and come down on the paralytic. We visited this afternoon for a short time and went to a cousin's birthday party.

Sunday 7/13 evening: William had a visit from Pastor Paul and Vicky. We found out that in addition to the infections, also has adenovirus. He's content at the moment. He even reacted a little bit to us talking with him and being close to him - more than the past few days. I think this is from a reduction in the paralytic.

Monday 7/14 Day 111: Overnight was good. William basically had an uneventful night. They will make another attempt to get the PICC line placed sometime today.

11:30 AM: The switched him to an occilator ventilator. Still no PICC line attempted yet

Monday night (7/14):

Transfer to Johns Hopkins Hospital NICU Day 105-108

I know I have a big gap between the last post until now, but the updates exist and pictures as well, they just need to be organized. So Over the past few weeks at Bayview the doctors have been discussing William's case with the doctors at Hopkins downtown in preparation for a transfer. The main reason for transfer was so that William could be evaluated for a tracheostomy tube, Gtube and Nissen procedure.

William's last week at Bayview was pretty good. He was on the SiPAP and FiO2 was in the 70's and sometimes 80's for the most part. He seemed alert and content when I visited and He seemed to enjoy being held. He was getting some extra love as he was leaving his friends there after 105 days.

Tuesday 7/8 before he left Bayview, he was at 74% FiO2, rate of 15 on SiPAP and saturation in the mid 90's and was dressed, content and alert.

When I arrived to see him in JHH, he was only wearing a diaper and was under the warmer on his back (least favorite position) and not happy and the SiPAP was set at 100% FiO2 backup rate of 20 and satting in the mid to upper 90's. At Bayview he was always in a short sleeve onesie and almost never had blankets on him, certainly not swaddled.

Wed night 7/9, 30 hours after arriving He's still at 100% FiO2 and satting in the high 90's and they said they weaned him to 95 and he didn't tolerate it. They had him swaddled and had 2 blankets on him. To me he seems too warm, but they say his temperature is normal.  I just don't get the O2 being so high.  One thing is the limits here are 92-99 vs 90-99 at Bayview, but I can't imagine those 2% matter that much?

He’s also been really sleepy – He really wasn’t alert much like normal until Thursday, I spent most of the day with him Wednesday and Thursday.

It just seems hard to imagine that a 3 mile trip and change of scenery "alone" could mess him up this much. Thursday they said in rounds they were going to give him Lasix and increase the sildenafil and see if they could wean him at all. I don’t think they were able to and then I get a call (after the fact) from the resident late Thursday night telling me that they had just re-intubated William and put him on a ventilator. They said that despite the things they did Thursday he was desaturating even with 100% FiO2 over the last few hours into the 70's. I expressed that I would have preferred that He had called me a little sooner rather than after the fact as long as it wasn't an emergency.

Friday, they tried unsuccessfully to place a PICC line and stopped feeding him, started antibiotics, are doing blood cultures (other vitals normal)  and have him  on fentanyl and a paralytic because he was breathing over the vent so now he’s not even going to be awake. So his first 3 days here haven’t been fun!