Sunday, June 28, 2015

April 2015

4/1 - So with William doing better with the paralytic weaned off, they asked about reconsidering him for lung transplant. To be evaluated there were a number of things to do - testing and evaluations. One thing was an MRI to rule out any issues with bleeding or a stroke or anything that could have been missed along the way since he was born.

This week he is getting a course of steroids and he has been more stable and lower FIO2 requirements. There is risk of him dying in the MRI. He will have a different trach, be on a different ventilator, be sedated and his ICU team can't be in the room with him. If he crashes, they would have to do an emergency shutdown of the MRI machine and it would take some period (several minutes? Not sure) to get to him. The sooner they can do it the better.

I'm praying for a spot to open up on the schedule this week and for his safety and for the team to account for everything and take the precautions needed.

9PM - A little progress so far the attending physician popped in before I left and said maybe there's a spot open this week for him to go to MRI

4/2 - They call in the morning and ask how fast can we get there - there is a spot open for an MRI now! - 

11AM - He just went back a few minutes ago he was satting well and ventilating well. The only concern was they didn't have the trach tube they wanted so they used a cuffed ET tube cut down and placed where his trach was. 
That that tube stays secure and in place is my biggest concern during the MRI

Prayer for William: Dear Heavenly Father thank you for the opportunity today to get this test done. Please protect William during this procedure and help the doctors nurses and technicians to keep him safe and get the information they need from the scan. We pray always that you find a way to heal him and get him home. In Jesus name we pray for sweet William, Amen

1PM - MRI done and he is back in his room safe and sound. 

4/3 5PM - Another Prayer request: William has a pneumothorax. Sats were 30's/40's and stuck there on 100% FIO2. They gave 2 choices: chest tube or do nothing. Doing nothing meant he would not survive. Chest tube might never come out if he keeps getting these. 

I wasn't going to stop by but I switched my volunteer hours for Parking crew at church with a guy that needed to go to a wedding so I was here for everything. 

They are doing the chest tube now. I'm waiting in the waiting room.
6:30 - Tube is in, checking placement with x ray

He was having a good day, FIO2 had been in the 75% range most of the day then at 2:45 he was desatting and in the 40's/50's and he projectile pooped all over the crib, so they were thinking he just had a big blowout and it was from that. I got there unplanned around 4 something and he was drifting into the 30's and not getting better. They gave PRN's and it helped a little, they paralyzed and it helped a little for a while, but I was thinking this didn't seem like a typical William episode, he looked like crap and was not good, but his Heart rate was still good. 

I asked if it could maybe be a pneumothorax and Andy, the fellow said possibly we can get an xray so they came and took it and I could see some dark areas, but not an MD so they checked it and determined it was a pneumothorax. It's being called progression of the lung disease and a consequence of his dependence on higher pressures to keep him ventilated and the lungs are susceptible to developing leaks/holes. It's one of the many catch 22's here in the PICU. Anything can happen and it can happen in a heartbeat. 

9:00 - He's fixed for now. He was satting 89 on 70% when I first saw him after going back. Then he woke up and was a little more in the 70's so they bumped him a while. Currently 94 sats on 100%
He did good with the chest tube. I think Andy said he got 70cc of air out... Not sure how much that is.

Sometimes the docs like to blame everything on lung disease progression - well I just did some searching and found that steroids can cause a pneumothorax so maybe it was related to the steroids ?

4/6 - William had a pretty good weekend - one issue Sunday morning where I think he was startled by his nurse flushing the toilet emptying his NG drain in the room where he desatted and took a while to come up. They did xray and saw more air and pulled 20cc out the chest and he was better and had a good day and overnight.

I have an Easter Basket for him. 

4/8 - First time seeing 50% FIO2 since December. 

4/9 - Earlier he was smiling at the nurses and making them laugh after he code browned the bedding. 
Pic from head of bed:

 4/10 - Morning: I just called and last night his nurse said his oxygen Sats are 92% on 55% oxygen. She said he's been sleeping and in the evening that he had a bunch of visitors - at first I was like what visitors!? And she said it was all his nurses that wanted to stop and say hi because he was smiling and being playful. He is such a blessing and such a fighter. I love him to pieces.

Evening: Good day. He didn't sleep much, he was taking a nap when I got here and then he woke up feisty. He was a little too agitated and pulling at stuff and arching his back. He seems to be settling down but not sleeping yet.

4/11 - Today's update - Last night William's nurse Katie said he slept a total of 40 minutes! I usually try to leave when he falls asleep, well last night he was up till 12:30am when I left. 
Sounds like he is catching up on sleep today. They have weaned the vent pressures this past few days along with his breathing rate and they have come down on his midazalam IV med twice. That may be why he was a little agitated/restless. 

Anyway here are some pics and a video

4/14 - Another good day and he's slept through my visit and the 8:00 cares again.
Katie said during the day she didn't have to touch his oxygen - 60% all day long. Pretty uneventful other than a major code brown earlier today.

Of course he waits till I'm leaving to wake up.

4/16 - I can't remember if he's actually ever been in this particular chair or not he was once or twice in a bouncy chair but I think this one is more upright and they said it it's a physical therapy chair and helps with neck muscles and core strength.
He's doing good still 60% oxygen and they were able to wean his Dexmedetomidine today. 2.2 to 2.0.

4/21 - He's been good overall. Lots of time on 50% FIO2, they have been weaning slowly. The only issue has been gagging after medicine.

He was not happy last night in the chair - had been there too long I think.

Miserable William

4/22 - Just hanging out:

4/23 - Sleeping

4/27-4-28 Baltimore Riots - JHH had National Guardsmen on site. No issues with visiting.

4/28 - Satting 98% on 60% FIO2. I also removed his DNR tonight. We are back to full code status.

Saturday, June 27, 2015

March 2015 and turning 1 year old!

3/1 - William is doing fine. Yesterday he has a pretty good day, a visit from a guy from church and my brother and sister. My wife and I came up from 6-11:30.
All day he didn't need any PRNs but in the evening he was just miserable and couldn't get settled, kept lifting his head and turning it face down and wiggling. He seemed like he got 4 morphine and midaz PRNs while we were there and they didn't even last long before he was agitated. His temp went up fast and he was all sweaty and mad. We cooled him down with ice packs and he seemed to like it after the initial shock.

His poor nurse Peter had him and another needy kid both on droplet precautions so every time they had an issue he has to gown up and throw it away when done. He probably went through 30 gowns while we were there.

We got him somewhat settled and left around 11:30 exhausted. I hate seeing him like that.
I called an hour or so later @1:00 and peter said he had been doing better and was mostly sleeping, probably having tired himself out. When I called in the morning peter said he had a pretty good rest of the night. He was supine for trach care and a central line dressing change and did fine with it. I wished they had tried to leave him a little longer. They said his sats were 80, but 80 on his back isn't bad.

3/1 - 6PM Today William has been fine. A "peach" says his nurse. Well if that's the case, he was a sour lemon last night...

3/3 - William has been good the past day or so. They plan to put him on his back today to change the trach and GPS is going to possibly resuture his central line and his nurse is going to change his Gtube

Hopefully he will still be good shape after that and he can spend some time on his back. He needs it.

3/5 - I just got this email from his attending physician:
Happy snow day! William has the best chest X-ray I have seen for him...and radiology agrees! I couldn't wait to tell you...
Tuesday they did put him on his back. There was a nasty cut in his neck under the trach flange. I have pictures that I sent the wound care team but they are a little gross.

He did pretty good on his back while I was there but they rounded before I left and I heard the fellow say they were weaning the Cisatracurium again. My gut was saying don't do it but I didn't protest to the fellow. I told his nurse Peter that my preference would be that he stays on his back to heal this wound and if that means going back up on the Cis then I would prefer that to putting him on his belly.

Well I called when I got home and he was on his belly. They said they tried to wean and he didn't like it and even after going back up a little bit I still decide to put him on his belly. I wasn't there but I really feel like they could've waited him out on his back especially going back up on the Cis.

Yesterday I was there and they had put him on his back for the wound nurses to see him and they treated his neck, cheeks, feet, knees. They discussed everything with the medical team and basically decided keeping on his back is a priority more so than weaning so they gave him a lot of extra medicine in the morning and early afternoon but the evening actually went better.

3/6 - I talked to the attending last night and saw the images. Her opinion was that these were the best X Rays since he has been here.

They came down on the paralytic cisatracurium to .16 (.23 a few weeks ago) William is getting used to it - last night he had some desats where he was coughing and coughing better than I have seen, getting stuff visibly out of the trach tube.
Today he has had some pretty big desats (40, 50, 25) but recovered. He's got a really good nurse, but she can't be in two places at once. I'm going to go up there soon to keep an eye on him.

3/7 - Like a million other things in the Picu its a catch 22. Kristen, the attending said he could be mobilizing secretions he otherwise couldn't before so it looks like more coughing and more secretions but it's not overall. She added some additional nebulizer treatments to thin it out.

X-rays were showing more open and darker meaning more air in them. It was also on his back when they usually aren't as good and this was better than the ones on his belly.

She did say it could be worse before it's better coming off the cisatracurium as he adjusts to a different situation. Last night had some big swings up and down.

3/9 - Last night he started the shift change off with a huge desat. He was 65 when I walked in and went to 13! before they put him prone. His heart rate was high @175 and he was mad but didn't look horrible. He came back up pretty quick but it was a little stressful. The whole thing was from pooping! He had super loud gas/loose stool.

The rest of the night was calm and today was as well until they put him on his back. He's been ok with a few 60's and 50's desats but came back up with patting his butt and chest PT and a few extra medicine doses.

Her he was more awake and smacking himself in the face.

The following is a fundraiser set up after some folks asked about doing something for the other families and kids in the PICU. We have had a number of donations of items for the kids also.

3/21 - Just a short update. William has been doing pretty good this past week. We had been down to .05 for the cisatracurium from .23 and in many ways I would have said this past week was one of the best since December. He's moving, seemed happy generally, no huge desats, not a lot of coughing and sats awake in the 80's and aleeping in the 90's except for one thing - fevers.

He has had a fever every shift since monday. They have done cultures 2-3 times this week with nothing found. I did find last night that he has 2 teeth about to come in. I told the fellow last night and he said hmm I hadn't thought about that. His fevers have been a little high to have teething as the only reason but we are dealing with William and he does things his own way.

Back to the cisatracurium (paralytic), they suggested instead of continuing the .01 weans per day or per shift that we try turning it off yesterday. They did and within an hour he had slipped to 70's awake and 80's asleep for his sats. He was in the 60's when unhappy and had at least 2 times in the 50's.

So far overnight he was a little better and today he's been doing good with sats. I'm hearing some 80's and 90's again.

3/22 - He's had restraints the past week or so and been a little grabby. Apparently he did disconnect the ventilator this morning.

These no no's are nicer than the old ones. They are soft and ventilated. They let him still cross his arms and put them over his head.

This evening I found two little teeth poking through on the bottom.  one is out and the other is just starting. I had a gloved finger in his mouth rubbing his gums and he bit the heck out of my finger. I thought he bit through the glove. Little rascal.

So maybe this mystery fever they can't figure out was teething. He did not have a fever tonight at 8 pm.

3/26 12:46 AM - I got to hang out with William as he turned EXACTLY 1 year old a year to the minute from his arrival. He is a miracle and a blessing. Happy Birthday little buddy:
Got home from the hospital at 4AM. He was unsettled for a while and would not go to sleep. They were getting cultures because of a fever, agitation and lower blood pressures today.

3/26 - (day) After getting some sleep myself, I spent the day with my favorite PICU patient. He's had a lot going on. Right now he is sleeping and satting good. Earlier he was just uncomfortable. 
They are checking everything. Neurology was here and said he looks good from their perspective. They want to do some brain scan eeg? And maybe a cat scan, but are not real concerned. 
Urology was here and he's got the hernia and they had some suggestions but no big issues. 
He got an abdominal ultrasound and they are making sure he doesn't have kidney stones. 
Sounds like they are starting antibiotics in anticipation of an infection. He's just been agitated and not himself the past few days and sats have been lower. 

Birthday pics:


3/27 - He's still been having fevers - they cultured AGAIN overnight, they have yet to find anything, but he's just not himself overall but today for the most part hes been content - That said he had a big desat to the 20's. I talked to the attending and She said it was different with this desat in that he was off the paralytic and they were more able to see his true reaction to it, unfiltered I guess... Again they said his heart rate didn't go down so that's good. Anyway He's sleeping now, sats 80's sleeping 70's to 80's awake.
He got an EEG brain scan, no results but they were talking about a CT or MRI, but I don't know why - I think they are waiting on the EEG. Ultrasounds of the abdomen were normal.

3/29 - Had some trouble overnight desatting teens,20's and then hanging in the 40's /50's for an hour. They gave him paralytic, sedation PRNs and eventually put him prone.

He's better this morning and they went up on the vent rate and added the antibiotic back that they stopped yesterday (the 2 days on it he was better) he's on his back again.

That afternoon they called me and he has a pneumothorax and Atelectasis (some collapsed areas) the treatment is the opposite thing for each of them so they can't really treat either but he's doing fine at the moment. they did get another Xray at 4 and it looked better. It was a Supine vs Prone, but it wasn't showing the pneumothorax. He was also satting well and awake on his back.

So He seems OK, they got him back on the antibiotic for 7 days - we'll see if it helps. I suspect it will.

3/30 - called and he's having a good night for Kate his night nurse. Satting 91 and wiggling.
I'm still Leary of this idea that the pneumothorax is gone because of the supine vs prone X-rays. I hope it's fine

Morning update @6:30am - nurse Kate said he had a "great" night! They even weaned his FIO2 to 90%. Go William Go!

3/31 - William had another good night and they got his FIO2 to 65% for a while and was 70 when I called.

Last night when I was there he was wild and flailing his arms and wiping them across his face the problem was he was loosening the tape that was holding his ND tube in. At first I thought it was just a coincidence but after his nurse got it retaped he wasn't bothering it so I'm guessing either seeing it out of his periphery or feeling the tape loose was bothering him.
After all that moving his temp was 37.7 and that was the highest it was all night so no more fevers. He fell sleep after getting his diaper changed and the tape redone.

Friday, June 26, 2015

Flashes of Hope pictures from January

These were taken during the rough period in January. I am happy with how they turned out.