Monday, January 19, 2015

January 2015

1/1/2015 Happy New Year William!
I have had a cold since the past weekend and have not been to see him and it's driving me crazy but I can't get him sick!! On top of that he's been having a rough week of ups and downs. Earlier this week they sent cultures and did find staph in the secretions and have him on antibiotics for that. He really didn't have a fever or symptoms, but he's had a few fairly big desat episodes the past couple of days and he's been on 90-100% fio2 again  this morning they had to go back up on the paralytic and his rate on the ventilator. The rate isn't a big deal but the paralytic is lousy because I know he's "awake" under that stuff. They don't seem to have a cause.
We have a family meeting tomorrow. We haven't had one in a while. I hate having it when he's having a bad week.
William is definitely having the worst week he has had out of the last 3 months. We didn't get a lot of positive news at the family meeting. Basically they are saying he hasn't improved as much as they were hoping with getting the trach.

I agree to a point, but it's easier for them to say that when he's having a rough time.

1/3/2015: Yesterday he was struggling to get his sats up over 80 on 100% fio2. They are calling this episode just a progression of his lung disease, but to me it's too much of an acute change.

I'm praying for a treatable problem to be revealed if they can find one and for lower oxygen requirements and higher o2 saturation.

I'm up visiting and he was on 90% fio2 when I got here satting low 90's and they even weaned him to 85% and so far he's tolerating it. He's been sleeping and is prone. I got a few peeks from him though.

I love this guy so much. I hate seeing him up against the wall.

1/5/2015: Tom who knows William from came up to visit William tonight and prayed for him. William and I appreciate it very much.

The docs did get one more clue with the recent blood work. White cell is normal. Hemoglobin is a little low 10.2 ( they won't treat usually until it gets to 7 but with him they would probably help him out at 9, but I feel like he would benefit from a higher hemoglobin like 12-14) anyway, his proBNP (marker of inflammation of the heart) has been @ 300 and its up sharply to 700 so the changes they made today were to go up by 2 on the trepostrinil and increased his lasix. He was on 85% and satting 85/86. He even tolerated a blowout diaper (code brown) that trashed all his sheets and required a joint effort to clean up from. Secretions still seem a bit heavy to me from last week.

1/7/2015: The last 2 days haven't been good. For the most part William the warrior has been on 100% FiO2 and sats have been in the low 80's and a few times even getting below 80 for a while.
Lighthouse Church is praying for William

I went to our Church ( last night for the night of prayer. There were not many people there that braved the weather, but a few of them told me that William was the main reason they were there and they did bring up William's story and prayed for him, then we broke into groups and did more prayers. It was good.
The other day, the chat with the doctors was basically that they think William is heading in the wrong direction and while that doesn't mean there is no hope, that He wanted to make sure we understood how serious this was becoming.

Last night William was still on 100% Sats were mid 80's and as high as 90 but he also had an episode into the 70's that required some extra meds to get him to settle. He's still prone.
Go William Go!

1/9/2015: Despite the good oxygen sats last night he has been having a desat episode for the last couple of hours sats have been as low as the 50's and were in the 60's when I just called again. Apparently this was related to trying to reposition his head so they are taking more care to do what he needs.
Today has been mostly low 80's and a few dips in the 70's but after the morning trouble he hasn't needed PRNs and he has been having a little evening rally and had his sats in the 90's again for 90 min and is now 80's. Been here all day. Going home now. Praying for a safe night well protected by our savior. Go William Go! As I write this he's back in the 90's

1/10/2015: Satting 88-92 on 90% Fio2

1/12/2015: The last 48 hours have been a little better overall. Sats have been a little more relative to this bad past week or so. 
He's been on 90-100% fio2 and sats for the most part have been mid to upper 80's. I think on Saturday they went up a bit on the morphine and midazalam drips because his desat episodes seem to come in waves and they give a bunch of PRNs and he's zonked for a few hours. They thought better to keep the background medicine higher. They didn't increase the paralytic. 
He was even on his back last night and this morning on 90% fiO2 and satting good so that's an improvement. 

James 5:13
Is any among you afflicted? let him pray. Is any merry? let him sing psalms. Is any sick among you? let him call for the elders of the church; and let them pray over him, anointing him with oil in the name of the Lord: (*James‬ *5‬:*13-14‬ KJV)
I asked the elders in the church to pray for William. One could not make it but found me yesterday outside and prayed with me for William. Some others came up last night. 
During his visit he started moving his fingers and gripping then trying to move his arm a little and eventually figured out how to raise up his arms even with the paralytic. He's like "what paralytic?" 

Video: Link to High Res on Youtube:

1/15/2015: William has been having ups and downs the past couple of days. It does seem unfortunately the downs have been a little more down than the ups. They have increased most of his sedation meds other than the paralytic to dosages that are higher than before the trach.
The past 2 nights including tonight his pop pop seems to have a good affect on him, both times I got here and he was in the high 70's to,low 80's and he has slowly climbed his was up with his sats and down with his HR. Last night he was satting 95 when I left. Overnight was ok, but his morning was rough. He seems to like it quieter in the room. This room is freezing, yet this little inferno is wearing only a diaper and has a light blanket on him. He does not like being hot though, he had a temp for a while last night and sats and HR improved with a cool rag on his head and back.

Lots of prayers and love for this guy.

1/17/2015: Yesterday I would say overall was a good day for William especially compared to the past 2+weeks. The night before one of our favorite attending physicians Kristen stopped by 2+ hours after she signed out and talked with me about William. She was going to check on a few things and review some things in his history and ask one of their lung disease docs about him. She also talked about holding him or a modified holding him and even maybe getting a bigger bed that we could get in to be closer to him. 
Marina is one of the charge nurses that William has own over and she stopped by with some ideas also. She feels pretty strongly about William's response to touch and talking with him and patting his butt/rubbing his head and actually wrote a note to all the nurses approved by the docs that rocking him,patting him and talking to him can have the same effect as a dose of morphine or midazalam. 
Anyway Marina assigned herself to William on Friday. She is great. I got there late morning with my daughter William's Mom. William was on his back he wasn't superstable but they did feel like he needed to spend a little bit of time to give himself a break. His hair was wild:

Eventually he wasn't having it and went prone and was happy sats wise. Later in the afternoon his brother and sister came up with my wife to see him for the first time since he was transferred from Bayview. Initially I was worried a little bit that they might get a little too wild and get his heart rate up but it turned out to be a good visit. There was a point at which is oxygen had been turned down to 90% and his heart rate was in the 120s and he was satting 92!!! The whole time the kids were talking to him and touching and run around after they got over being shy. 
Marina his nurse took a picture of his sats and his oxygen and took it down to the attending physician Kristen and said "see this is what love does..."

Overnight he had a nurse Sara that had him a few months ago. He was her only patient. Marina was telling her he likes his head rubbed and butt patted and she said she said she could do that for him all night I felt he was in good hands and went home earlier than last night. She said this morning he had a pretty calm night and today Candice is his nurse - she's really good so he's in good hands.

1/18/2015: Kids went to see William again. Sats were 71 when we got there 80 when we left.

1/19/2014: Overnight William had another rough night and required additional medication to keep his sats up. He had several desats into the 50's and 60's. When I called at 6:45, he was 80/81 and comfortable.

Wednesday, December 31, 2014

December 2014

William's been good. He's had a rough week with some ups and downs with this infection or cold. After the trach he was doing well, satting 90's on 60% fio2 and even some time in the 50's and Sunday touched 45% for a little while. The next couple days were worse, fevers and satting upper 80's/low 90's on 80/90/95%. Not what I like to see. Plus he was tuckered out.

He did get his trach changed on Tuesday successfully without incident and they even have him a peds size one not the neonatal he had.

Then yesterday I had a mtg at the hospital for work so I visited him at 9:30 and he was on 95% satting low 88/90. I remembered that while it wasn't something the staff seemed thrilled about, that it was possible for him to go prone once they changed the trach. I asked his nurse about it and she Rightaway said it's not something we normally do with babies with Trachs. I asked her to bring it up during rounds anyway to see what the doctors thought about it since it basically was something they could do to prove improve his oxygenation without medicine. I felt like the reason they don't like to do it is that it's more difficult and requires more supervision and monitoring and everything else.

After my meeting I came back to find three nurses in his room with him on his belly getting situated. I stayed for about another hour and by the time I was leaving his FIO2 was down to 70 and he was satting low 90's   later that afternoon I called to check on him and his nurse mentioned that he was mostly on 60% but she'd even gotten him down into the 50s but she was like it was no big deal like forgetting that he was on 95 early this morning...

They are stopping the antibiotics after today they actually determined that there was not a blood infection but they still were treating him for tracheitis.

Today he was mostly 60 to 65% FIO2 and on his back they never felt like he needed it today to be on the stomach.

Came down on the paralytic and I was just amazed at how alert he was.

Video: Link to High Res on Youtube:

Video: Link to High Res on Youtube:

William decided it was time to change his central line and pulled it out himself this afternoon. They were able to get 2 peripheral lines in and got all his meds started again without a lot of difficulty.
They decided to take him to the OR and place a new central line. He went @4:15. It was a bit stressful as it was not planned and he was desatting a bit into the 70's before he left and was seeming stressed.

Video: Link to High Res on Youtube:

He's back in the room. Job well done William and the staff. They used ultrasound to place this line so less scaring and incisions. Thankfully they put in the larger cuffed line. The one that can stay in a long time if needed. He is back and sleeping but was very awake for just having anesthesia.

12/13/2014: There will be some ups and downs I think as they challenge him and wean things. He came off the Cis paralytic this week. 

Tonight however he is having a lousy time. Fever of 105 and heart rate was in the 220's. They are doing some cultures and gave him Tylenol and ice packs. The temp is down a bit now but they have to still draw some blood and do a urine catheter which they tried twice and didn't get it. He's doing fine with all this poking and prodding so far.

12/14/2014: We left him late last night. His HR was down to about 175 and his sats were in the upper 80s or low 90s. The plan was to put him prone. (On his belly) however when I called this morning he was still not prone they had difficulty figuring out a way to do it and he was sort of on his side which I don't think is any better than him on his back. 
So we are headed back up there after a long conversation with his nurse to express my views that he should be prone unless there's a reason for him not to be prone and yet he hasn't been prone since 10 days ago or 11 days ago. 
Not sure about the fever cause. They were going to do The cultures to see if he had infection.

Today I was able to hold William for the first time in 5 months!!! It was great. 

He does have a blood infection which grew back in the cultures from last night and that's the source of the fever and the high heart relate last night and agitation/higher fio2. 
He is doing better than they expected for what he has going on. They actually think it came from a urinary tract infection since they did find that in the urine culture from a day or two ago

12/19/2014:He's a bit better the past day or so. They did have to go back up on some of the sedation and pain meds and the paralytic is back on.

12/22/2014:He's had the best night of the past week last night 60% FiO2 all night and HR was calm this morning. Antibiotics stopped last night.

12/24/2014:Last night I got the Christmas photo cards. I got two 2lb boxes of cookies from Vaccaro's and delivered them. 

First stop was the Bayview NICU and I was feeling a little awkward stopping there with no kid to visit. You have to check in with security to even get on the labor and delivery floor. Then you get buzzed in the door to the reception area of the NICU. The lady at the desk Andrea looked at me with a look of confusion until I explained what I was doing. I ended up having a nice visit for a half hour or so. There were a number of nurses that had taken care of William there last night and a respiratory therapist. 

After that I went to see William. William was doing good. His nurse Carol Ann had him down to 60% and prone. They finally seem to have a working combination of foam/pads and rolls to safely get him prone. 

 12/25/2014: Merry Christmas everyone. We stopped up last night after church and William was not satting well, but was content. His HR was good. Odd really.

He liked getting his hair combed by his Mimi. My wife got to hold William tonight. He was very awake for our visit. I think he likes mouth care

 12/27-12/31/2014: Everyone seems to have colds and so we are staying away from William for a while to make sure he doesn't get sick as well. It's been frustrating because William hasn't been feeling good this past week either and having some desaturation issues.

Monday, December 1, 2014

Trach Success and Recovery

The trach operation was a success. He has recovered for the past 6 days. He has had a fever here and there so they did do cultures and determined that there was an infection in his blood culture. They are repeating the culture to make sure there was no contamination but they have him on two antibiotics.

Despite the fevers and now infection He has had his FiO2 down as low as 50% for a few hours and on Sunday he was even at 45% for a short while. Certainly these are numbers we have not seen before. Here are some pictures.

Right after surgery - still paralyzed:

After waking up a little:

More awake:

From later in the week:


12/2/2014 Update: The second peripheral blood culture has not grown back anything as of 6:30 this morning. 
The trach change never happened yesterday. ENT is coming today sometime. 

Saturday, November 22, 2014

Trach Tuesday

We are on the schedule for a tracheostomy tube surgery on Tuesday 11/25/2014! William has been scheduled twice but cancelled due to infection. He is currently on the last 2 days of antibiotics. Short update for now.

Pic without tape

Thursday, October 30, 2014

Mission Supine!

10/20 - Starting I believe Wed, Oct 15th they started trying William on his back for periods of time and the plan was to increase the time by 1 hour each day and see what he would tolerate. The plan was Thursday 5, Friday 6, etc. On Friday he was at 6 hours in and doing so well they extended him for another hour and a half. Saturday I think the plan was eight and he went 19. Sunday they were going to try for 24 hours and now it's Monday and he is past 24 hours and is still doing fine so they are continuing to let him stay on his back. Go William go!

10/28 - 9 Days on his back and doing fine!!
We had another family meeting today. The basic decision was to go forward with the Tracheostomy tube surgery. There was discussion about the Gtube, Gtube/Nissen or G J Tube and hernia surgery, but the feeling was one thing at a time even if that meant more times under anesthesia. The Feeding tube issue was next in the surgical priority. ENT is going to look at him Thursday 10/30.

The one Dr, who is the pulmonary hypertension doctor was a bit pessimistic. He is the one who said at the last family meeting that they were hoping to be able to do the tracheostomy tube surgery but that that was no longer possible and that we needed to start looking at options to make William's end of life as comfortable as possible.
I had asked him at the time of the last meeting what would change his mind and he said the two things I have posted about: 1. Lower FiO2 with higher sats 2. less desaturation episodes. Basically the entire time from that day until now William's sats have been in the high 90's on 60% FIO2 and he hasn't has anywhere near the big swings in sats desatting into the low 80's or 70's at all - the worst it has been was 88,89 and they bumped his FiO2 up to 70% for an hour or so. Nothing even remotely like it had been in the moth or so prior. Plus William was on his back the original 48 hours, then the full 5 days and tomorrow he doubles that to 10 days + with no signs of issues.

So That's the story - I hope ENT doesn't come up with any excuses, this is as stable as he has been ever in the PICU. I wish they were coming sooner than Thursday. I hope we can get the same anesthesiologist as last time. She was good.

I didn't see him today - still feeling a little sick, but my wife did and read to him. 4 straight days missing my buddy

Wednesday, October 15, 2014

PICU 6 Months

It's been a while since the last update and as usual there have been a lot of ups and downs.

9/24/2014 Towards the end of September William was having a good week and they started talking about surgeries - central line and tracheostomy tube. The question that has no clear answer is how William will tolerate the anesthesia and surgery.

The risks with the PICC line in past its lifespan is infection - something He certainly doesn't need. The PICC team already said He probably wasn't able to get another PICC line.

To me this past week or so has been worse than the previous week or two as far as oxygen requirements but the anesthesiologist didn't seem to think the risk was any greater or much more if we had timed it for that window where he was doing better. She said the risk is much higher in a patient with Pulmonary Hypertension overall.

There is the option to just do the central line, but with such a high risk of any surgery, it may not make sense to just do the line and not do the trach.

Currently they are getting ready to try him on his back with more sedation and more paralytic in order to see how he will do both for the surgery.

I stayed late and they decided not to do the tracheostomy tube but they are doing the central line. They want to see that he can tolerate 2 days on his back before doing the trach.

9/25/2014: Surgery was a success!!
They said He did great and he's back in his room, He has a central line and an arterial line. I can see him in 20 minutes! actually 17 and counting!

9/26/2014: At 12:45 AM William the Warrior turned 6 months old!
We have been through a lot these past months and We certainly appreciate all the support and prayers and encouragement along the way.

9/27/2014: William is having a good day. Patti is his nurse and she said he has been on his back since 4am and is doing great.
She took our suggestion of putting him on his side and said he loves it. His FiO2 was 50% and she said he has been there for 1.5 hours. The docs suggested weaning more but Patti didn't want to push it. I told her he really hasn't ever been to 45% before and that made her even more reluctant to wean into the "danger zone"

I'm going to try to make it up there this afternoon. They made some signs for his 1/2 birthday

9/29/2014: Well he made it 44 out of 48 hours and they had to flip him on his belly. He's been there for 4 hours and is now a happy camper. They were able to come down on the FiO2 which is a good thing. So He didn't make it the full 48 - they will probably discuss the next steps on dayshift.

He is always preferred his stomach but it just seems like he can't take being on his back very long even though the first two months that he was in the PICU he was on his back
The 48 hours was the time that he needed to be able to remain on his back before ENT would consider doing the tracheostomy tube surgery.
This is because for recovery he has to be able to spend five days on his back to recover and heal the tracheostomy tube. The problem last night was they couldn't get him out of the 70s for his saturation even on 100% oxygen.

10/1/2014: Prayer Request: William is stuck in a place where the doctors are running out of options. The past couple of days have been worse from a respiratory standpoint. He's required more oxygen and more pressures to open up his lungs. They are even talking about going back on the oscillator.

He seemed to be in a good place on Saturday when they were able to get down to 50% FiO2 on his back and 60% for a lot of the day. Since then it's been more difficult. They thing there was some collapse of certain areas of the lung and increased fluid in the lungs while on his back so they are taking some steps to deal with that. The problem is for the Tracheostomy tube He needs to recover 5 days on his back and they are concerned He won't survive it.

We meet with them Thursday and will have pulmonary there as well as ENT to discuss what little options we have. The benefits of the Tracheostomy tube should be lower pressures, lower FiO2, more comfort, less sedation, we should be able to hold him again and hopefully all that will help in contributing to less pulmonary hypertension episodes.

10/2/2014:Overnight courtney his Nurse (back from a month ago - she had him a lot) was able to wean down to 80% by 6AM after going up on some sedation (even though he didn't "look" uncomfortable) Today I just talked to his nurse and he was at 65% FiO2 Satting 98% which is awesome anytime but compared to yesterday is HUGE!! He is more sedated, they did back off on the "Cis" one of the paralytic/sedation meds. GWG! Thank you Jesus! Thanks You Docs and Nurses!

10/3/2014:  Not good news from the family meeting. Here is a basic recap of the past few weeks and the meeting:

William has been through a lot the past few weeks - They thought they were going to be able to do a tracheostomy tube and a central line, but ENT wanted him 48 hours on his back as a test to see if he could tolerate it post surgery. They did the central line and he did good under anesthesia. A few days later they tried him on his back and he made it 44 hours and they had to flip him prone. He was going up on FiO2 even with more sedation.

The past couple of days have been bad for sats. FiO2 90-100% and desats into the upper 70's with yesterday almost 100% all day and sats in the upper 80's they weaned to 95 and he dropped to 79 like a rock. Overnight they went up on all his sedation meds and Cis paralytic and got him down to 80% FiO2 and then during the day (Thurs) he was 65% FiO2 satting high 90's.

The thing is he is really sensitive to any movement or interaction like diaper changes, cares or moving his head to reduce breakdown/sores. The only time he has really good sats is when they take him out of it and go up on sedation and paralytic and let the machine do the work.

So basically they are saying there is nothing more they can do and ENT won't do the surgery because they don't think he will survive 5 days on his back. Now they are talking about his quality of life and that they don't see a way out of this for him and to keep him heavily sedated and paralyzed is not a quality life.

It's hard to take this news - especially when I called just now and he's satting 96 @ 70% FiO2. On one level it seems like he is doing great certainly compared to the past couple of days. They haven't given any PRN's and he even tolerated a head turn without increasing his O's.

Even though they were saying He's heading in the wrong direction, I did ask what he could do to change their minds and the answer was basically get his oxygen requirements down and stop having desat episodes from minor moving and cares.

This warrior boy has been almost counted out numerous times before and Jesus has been right there with William protecting him- before he was born with docs pushing abortion after pPROM, suggesting my daughter was making a mistake risking an emergency C section for a baby that wouldn't survive the delivery room, surviving the delivery room, surviving the night, surviving the 1st week when things looked bad, surviving the infection, adenovirus, surgery. So I have no doubt Jesus is with him now and I am not really worried. No matter what happens, William wins!

Thankful for every day! Go William Go!

My prayer is: Thank you heavenly Father for sending your Son to die on the cross for William and for all of us. Thank you for William and the blessings and joy he has been to our family and everyone here pulling for him to get better. Thank you for every day with him. I pray for your will to be done. So far your will has been to protect William and I pray for that to continue. I pray for healing of William's lungs Lord, better oxygenation and comfort for him. I pray for the pulmonary hypertension to get better and respond to the medications without harmful side effects. I pray that William gets stronger and can tolerate longer periods on his back so he can get the tracheostomy tube surgery and heal from it. I ask this in the name of your Son Jesus Christ, Amen.

10/6/2014: Basically for the majority of the weekend he was getting 60% oxygen and satting in the 90s. He was even tolerating most of the cares and episodes where they were turning his head or changing his diaper things that in the past have caused him the desat or get mad heart rate goes up that kind of thing

Today around 4 o'clock in the morning they decided to replace his arterial line and in order to do that they put him on his back. They did not manage to get a new arterial line installed but they decided to leave him on his back so as of this moment he's been on his back for about 16 hours and so far you doing great.

When I left him a few minutes ago his heart rate was in the 120s his oxygen was 60% and he was actually setting 96 to 100.

We did have a visit from the chaplain and we talked about a bunch of different things but before he left he prayed with me for William and William had an interesting reaction at the end of his prayer it's hard to describe but it was like it was like he all of a sudden got like a burst of energy and I almost thought for a second there he was actually going to get up off the bed he raised both of his arms up and moved the whole rest of his body and he's mostly been sedated pretty heavily and paralyzed so it was just interesting to see.

10/10/2014: Seems a little better today - when I was there he was mid to high 90's for sats but heart rate was 150. I read a few books and put him to sleep and he was HR 120 and satting high 90's and when I left he was pegged at 99-100 sats all on 60% FiO2. Go William Go!
Edit: Nitric was weaned to 3 today.

10/13/2014: He had a good quiet weekend - Still satting high 95-100% on 60% oxygen. They have weaned nitric I think to 1 ppm. Beth is his nurse today and she had him last 2-3 months ago when he was first in the PICU so I will be interested in her thoughts on his progress since they last met.

Tuesday, September 16, 2014

PICU @ 5 Months old Video

I would like to start doing a better job of updating here. I fell down on the job for a while, but I did put together an update and a video of the last 5 months. I managed to cram it all into one song, but I have a lot more so maybe I will add a song or two and make an longer version with more pics and video.

Update:  Since the pneumothorax, things have been up and down (no surprise right?) Basically after the pneumothorax, he did good for a week or so on the conventional vent, then as things were weaned, he seemed to have some ups and downs. He did finally get over the adenovirus - at the last family meeting, all the docs mentioned that that was both a big setback and a big deal that he was able to get over it. Around this time they weaned the steroids that were giving him a boost and that caused a dip and some instability. Somewhere in there they weaned off the nitric gas as well, but after a few days they had to put the nitric back on.

The new plan was to bring up the treprostinil (works similar to the nitric) even higher and take the nitric down more slowly. It was last weekend I think Sat 9/6 that the nitric came off. William had some bacteria in his ET tube culture so he's been on antibiotics for almost a week.

He still loves his Horton - I posted this on Friday:
"Stopped in after work. Heart rate in the 165 range, sats ok in the lower 90's but with 80% FiO2. They had just put him prone. The good thing was he lasted about a day on his back and had been OK. He had just been flipped an hour or less before I came.
I did some book reading, green eggs and ham and Horton and He was down in the 145's for HR and they were able to turn the FiO2 to 75. I spent some time combing his dry skin and cradle cap and rubbed some lotion onto his head and as I was massaging his head his heart rate kept dropping into the 130's and they were able to wean him to 65 before I left and I just called and he was at 60%."

Horton is usually good for a 20 point drop in HR and a couple of points boost for his sats. Go William Go!

Video: Link to High Res on Youtube: