2/3/2015 - William had a bit of a temp when I got here and a trach leak and his sats were 75 on his stomach. His position was a little off - they had too many blankets over the pad. I had them fix him a little but and he's 82 now and no leak.
He's not been steady enough in the high 80's to 90's to wean yet. They will when they think he can tolerate it. He had the trach change today and was ok, but didn't stay on his back long.
Hair is getting red. He'll have to grow into those ears
2/5 - Tonight William was satting 90% on FiO2 of 95%. Yesterday they got his FiO2 down to 90% and his sats were 80-82. It's good progress.
He also got some PT and they worked with him on some developmental stuff and changed his central line dressing. They found the stitches were out of it and they had GPS come by and resuture him. He did good.
2/9 - This guy was on 80% FiO2 this afternoon when I stopped by. They said it was at least 4 hours. So thankful. He hasn't been able to get down to 80% really since December. When I left he was on 95% because they flipped his head position.
Just called for an update and He's back on 80% Thank you Jesus for every second with this little man. I am praying for protection, healing and growing lungs. Lord find a way to get him home for your glory Amen!
2/10 - Today was a good day overall but he's still having issues on his back. He got a trach change today to one with a flexible extension that will help with positioning but he desatted to 35 during the trach change. YIKES!
He came up a little but they put him prone right away. I was not there for it and they disconnected the vent to put him supine which probably didn't help.
That said he was in the 80's the rest of the day for sats and was on 90% FiO2 when I was there. Which is good.
2/12 - When I got there they said they said He had a rough morning - apparently his breath volumes were low and CO2 high and sats were lower than usual. They got an X-ray and saw underinflated lungs and the trach tube was kinda going into the back of his trachea not down where it belongs so they switched back to the non-flex tube. They also said he had another desat to the 30's/40's during the change and were suctioning blood from the trach tube. Poor kid.
They also did a trach culture and it came back with staph so they started antibiotics again. His day was OK, 2 fevers and generally happy.
Overnight he was OK, but was not tolerating his head repositioning from side to side earlier today. I just called for an update and he's been in the 80's with a few 70's dips, but I'm sure the infection is contributing to this recent dip. THey did a repeat X-Ray and it was improved from yesterday. I didn't see him today, we have a class at church tonight so I will probably see him tomorrow.
Sad news - another family I became friends with - their Son passed away the other night.
2/13 - I went to work, doc called just before 11. I'm at the hospital William sats dropped to 8 as in 08. Looked like some more lung collapse on the quick X-ray they got but his nurse hit the code button or whatever it is. They went up on some vent pressures and got him in the 60s. I got here 11:15 after he was stable. He's 82 as I type.
I may have exceeded the speed limit on I-83 while using a handheld phone sorry!!
So they think it's more pneumonia than just tracheaitis this time and it can all be related The increased pressures will help and they can go down on the rate if the co2 gets too low ( over ventilated)
Edit 2:40 pm Ugh. Just watched William desat to the teens. It was sedation related. They were getting blood and had paused his drips and he literally did a push-up off the bed had his whole head in the air and crashed. He has recovered. I need a drink though.
There is no way I'm leaving him!
10PM - He's been 80's for the most part. Upper 80's for a bit. Seems to be somewhat wiggly at times and a little irritated. No more desats. No fevers. They got a peripheral IV in. One of my favorite docs Eric helped his nurse - they were not sure if it was just going to be a stick for blood or not but they used the ultrasound and got a good vein with an IV so they won't have to stop the sedation meds to give his Cefepime.
2/14 7AM We had a pretty good night overall they tried twice to get a urine culture but they could not get the catheter in him he didn't appreciate it either.
Evening: Tonight has been such a roller coaster. His sats are in the high 80's and he seems comfortable and resting. Then all of the sudden he starts coughing and arching his neck and back and turning red and clearly agitated and his sats drop at least to the lower 60's and as low as 34 one of the times. It seems like if the nurse is here to check on him and auctions right away it stays in the 60's to 50's. Then it takes a lot of butt patting and head rubbing and talking to him to get him back into the 80's.
We have been doing this every 30-40 minutes for the past couple of hours and it wears on you. I would appreciate it William if you could turn in for the night and I would be more than happy to resume this in the morning.
2/15 - Morning update: Better as the night went on. He was also having a lot of poopy diapers. I think the cefapime upsets his bowels - poor guy.
I went to bed @1 something after another desat that his nurse Michelle was in the room for and because she caught him coughing and suctioned right away he went from 88-60ish but didn't totally drop to the 30's,40's. So I felt better about that (and was super tired)
I did wake up @5 to them getting ready to lift him and turn the padding and rotate his head and the vent circuit but it sounded like it was going fine so I resisted worrying or helping and they did fine.
Getting a recap from Michelle, she said he basically settled out after 1:00 with the exception of one giant #2 diaper she said she heard him going from out in the hallway! She said he freaked out a little and desatted with that but otherwise was good and didn't require as much suctioning and even had a few "episodes" without the desats or ones where he recovered on his own.
At shift change though like the past 2 on the 7:00 hour he did a desat to 61, but recovered fine.
2/16 - They repeated the lab draw from the central line where the sedation meds had to be paused last night. This was the one that caused the desat to ~20 on Friday while I was there where he did a push-up off the bed and I could see his chest.
This time I made sure they had a solid plan and suggested PRNs of his sedation meds before they broke the line and suggested they have extra syringes of pain and paralytic meds ready since 30 seconds at almost no oxygen makes a difference.
We did go home and they called @1:30 and it went fine.
Stable day. 80's and weaned pressures back to 26/11 from 28/11 and oxygen was down to 90 from 100 for part of the day.
2/17 - Supine
2/18 - Overnight William did pretty good considering he was supine. He is still on his back this morning so that's 15 hours and counting. His nurse did have to give some extra pain medication but I think it's worth it to give his face a break and the area and skin around the trach some time without pressure on it.
Basically they did the same thing as they did on Friday morning when he desatted to 8. This was the first time since then they even attempted it. All weekend they were just rolling him on his side to do things like trach care, changing his central line dressing etc.
I had requested a heads up before they did it so I could be there. I felt like I wanted to be there for him in case he didn't tolerate it but also to compare how they were doing it with what has worked in the past.
My suggestions were to give extra medicine PRNs before repositioning him, to have the angle of the bed at 15 degrees vs the 20-25 I believe they had before and to make the transition slowly and pause a second once he was vertical and make sure his head and neck was controlled. I also asked to to start from his head facing left so the vent circuit was on that side and could stay connected during the move. Otherwise it would have to pass over his head (complicated) or be disconnected.
I don't know which things helped or if he was just in a better place with the infection, but I'm glad to see him on his back. It's been about 2 weeks or so since he's tolerated more than a few minutes in that position.
Praying for better oxygenation, lungs to grow, less secretions and coughing and for William to be comfortable and to thank Jesus for saving and protecting him every day.
27+ Hours and very awake:
2/19 - 40 hours on his back. Did good overnight.
2/20 - He was very awake at the moment of this pic, but we tried to make some adjustments and it's been a little rough the past 2 hours.
They went down on the Cis (paralytic) and he was really not comfortable and moving all over the place and his oxygen sats were low. So they went up on his sedation morphine for now.
The concern is that by paralyzing him, it can mask pain and discomfort even though he is experiencing it.
His respiratory rate was all over the place. Hopefully they can get the right amounts of medicine to keep him in a good place but not be snowed.
2/22 - He's taking a break from being on his back. He went 4+ days. We hung out yesterday during the storm. My wife got to hold him today. Sats in the 90's.:
MD Shooters stuff:
2/25 - 5:00 PM - been OK, not great. Sleeping a lot. Mostly prone, however they put him supine for his trach change. I unfortunately was dealing with a work issue and missed being there for it and they didn't keep him supine for some reason even though his sats were in the 70's. I am off to see him in a few minutes so I will have a report. They are still adjusting medicines for weight and they still are down on the Cisatracurium from .23 to .20
7:00 PM - William is fine. I am glad I come here every day. It's not a huge deal but his foam pad under him was all out of place. There is basically supposed to be a pad under his chest and then there are side bolsters that come down to kinda keep him from rolling off of it. The one side bolster on his left was completely under him. The nurse that has him tonight has only had him once 3+ months ago.
If William got a flattop:
2/26 - 11 Months old! Brother and Sister visit:
2/27 - I was late to our church small group because I was at the hospital with william. They were putting him on his back which is always stressful. It didn't go great and his oxygen was low for a long time and we were talking to him, rubbing his head and patting his chest and trying to get him to settle and they had to give him extra medicine.
After I left he had his oxygen drop low twice and they had to put him back on his belly. 4 hours is better than zero.
Overnight he had a fever, so they are worried he has yet another infection(ugh) so they sent blood and trach cultures and tried unsuccessfully to get a catheter in the poor guy to get a urine culture and he pooped all over the bed. Since they had so much trouble they got urology involved. Then they found his central line has torn all the sutures so they called general surgery to see if they want to re stitch it.
I'm not sure if I should go to work or be up there with him.
I went to the PICU and I hope this wasn't like this all night... but, when I left last night his VT Tidal Volumes (going in) were .150, .160 and his VTe expiratory Tidal Volumes (going out) were .030, .040 but his sats were OK and his chest was rising.
This morning I walked in and his sats were 77, not great and VT.150, VTe .030, .040 again. I asked for respiratory to come down and the high tidal volume alarm was alarming (common) but I heard a soft whistle sound that was out of place... that did bother me and I looked for the source and there was a hose connection loose enough to leak, but not loose enough to fall off. it was moving with each breath, so I shoved it back on securely and his VT and VTe went to .070 -.080 both number basically the same and his sats came up a bit.
Blue hose from left
Anyway other than that, his doctor Kristen said his white cell and CRP were up so she is starting antibiotics. They still need to cath him for urine, but urology is coming soon to do it since the nurses are having a 20% success rate with it. hopefully he will be back to himself. They did come down on the paralytic Cisatracurium to .18 from .20 (was .23 last week) and have gone up on other meds for weight he gets enterally.
2/27 - they are treating him with Cefepime again. He seems stable so I am going to say goodnight to him. Sats had been hanging 79-81, but now he's 91.