January 2015 part II

I left off with a post on January 19th. I was off that day and patching my roof, but had been talking to the docs and nurses off and on. I had a sense that things were not going well and they wanted me up there. He was not feeling well but we did watch Rocky III on DVD and he seemed to like the fight/training scenes. I went home late that night after he seemed to be settled a bit.

The next day I was up here with him and they did an out of line suction that caused William to desat into the 30's fast. Everyone was in here. I think they were worried he wasn't coming up and the charge nurse Trish asked if I wanted to hold him and I said yes and we got him into my arms rather quickly. That was at 11AM and I was not letting go. I held him for over 12 hours and it was awesome. It was a pretty good day together despite the chaos at the start.

The out of line suction is always a little more dangerous because the ventilator is disconnected and you can go a little further. He hasn't been to happy with suctioning in general but lately it's been more agitating.

It was scary is all I can say. When it went to the 40's is when I stopped looking at the monitor and was focusing on him. There were like 4 nurses, 2 respiratory therapists and 2 or 3 docs in the room. I don't think they though his sats were going to come up.
I was nervous but not really worried. I felt my heart racing. At the same time I was thinking I just want to hold him, the charge nurse was like you want to hold him right? I said yes and that I basically wanted his chest against me and his head on my shoulder and I wanted my mask off (so I could smell him - weird maybe)
With like 8 people helping it goes pretty fast. We got situated and I got all kinds of towel rolls and pillows to prop us up. I did not want to move from that spot. I even ate lunch with him and a bib to catch crumbs. Finally after 8 hours I had to pee.
We debated on putting him back in the bed vs just lifting him up so I could run to the bathroom and one nurse even suggested getting me a urinal and to go right there holding him -haha, it kinda made sense. Anyway they just picked him up and held him. His nurse that had him Christmas week was disappointed she didn't get to hold him. I took a pic and it shows:

He had lots of visitors today, nurses and staff that stopped by to say hi or see him.
Anyway after that I held him on the other side until almost midnight. I'm sleeping here even though he is good at the moment. They did switch him to a full size bed:

Wednesday night (1/21/2015) was horrible. Desatting to 31% several times. Wasn't sure he was going to survive the night. I helped fix him one of those times. He wasn't coming up and I suggested we he a pad under his chest (I was holding him) to get some room for his belly to expand and as soon as we did that he started coming back up. At a point, I was overjoyed to see sats above 55%. I eventually got in bed with him and spent the last few hours before change of shift right next to him.

Thursday 1/22 was better. Our morning was decent. PT showed up and they asked if I wanted them to work with William or skip today since he had had such a rough night. I said yes lets do it and just see how he does. Megan who has worked with him from the NICU did some stretching and exercises. He loved it! Sats went up to 80/82 during.
The rest of the day was ok. He spent 6 hours on his back either upper 60's or low 70's.
While we were sleeping his nurse Lauren took a picture of us together:

That evening is where we ran into trouble. I held him for a couple of hours. He desatted a little and we switched him to on my lap and he liked it until his nurse tried to suction him and the ventilator made a weird noise. His airway was blocked. She called for help and his sats kept going down to 19 I think at the lowest. They gave extra pain sedation and paralytic. A respiratory therapist came in and looked him over for a second and made sure the tubing was not the problem. She did dump some water from the line but it took a saline and suction combo to dislodge the trach plug. Once that was cleared he was getting air again and the sats slowly climbed back. Everyone was a little stressed. Other than that major event the night went ok and the day Friday 1/23 has been mid 70's and currently upper 70's

Pastor Paul and Mrs Vicky came to visit:

William and his attachments:

1/25 - William had a good night last night he has been on his back since 4 PM yesterday and this is the longest he's been on his back since the end of December. He even had sats up into the lower 90s overnight. 

He was doing so well I left him for the first time since Tuesday and went to church.

1/28 - I got William's floor cleaned and reminded them that we hadn't changed rooms in a while to get a good cleaning. 

He had a pretty good day. Went on his back for a trach change and stayed for a few hours. I actually left for 2 hours or so and stopped at my office. William was not thrilled on his back so I held him when I got back. It went well, but his heart rate was sitting in the 175's which was odd because he seemed totally chilled out and comfortable. He didn't seem warm to me and wasn't sweating like he usually does if he's hot. Temperature was 38.4 then 20 minutes later it was 39 and his heart rate climbed to 180. 

We tried cold rags and eventually they gave him Tylenol. We also put him back in bed on his stomach. Earlier today he had a low grade temperature. With these fevers they decided to do tube culture blood culture and viral panels. The blood work came back showing double the white blood cell count from the last blood test. He's on day seven of bactrim but they might broaden the antibiotics he's getting with additional coverage. That was the deal up to 3 am. I went to bed when his heart rate came back down into the 160s and his oxygen was in the 70s. 

The first labs came back showing high white blood cell count and high CRP. They switched his antibiotic to vancomycin. This morning heart rate is in the 140s and sats are in the high 70s. They still need to get a urine culture any which way vancomycin should cover whatever is going on if it's infection. 

Pics

Hand mold child life made with us

Card from the staff for 10 months -  I haven't been thrilled with most of the residents that have taking care of him, but there was one, Mo this past week that was really nice that I liked. I had mentioned to her that his ten-month birthday was in four days and this was right in the middle of his horrible week and she said she was going to get him a card. 

1/29 - I spent the first night at home since Tuesday a week and a half ago. Just called and he had a good night. Still 100% fio2 but sats in 80's. Yesterday he had a gown on for a while.

1/31 - William's viral panels from the fever the other day came back negative. The cultures were negative also except some bacteria in the trach culture so he's on Bactrim. He did have another fever this am and higher HR and they cultured again.

Veggie tales

Here is the custom padding they created for putting him prone with a trach. I had done a lot of searching for trach baby prone and eventually Google image searches led back to this blog. haha. The top donut is for his face, the cutout is for the trach and the lower part if for supporting his chest and sides but allowing his belly room to hang down and then the other pad goes under his hips. 

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 mdshooters.com 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

1/8/2015:
I went to our Church (lighthousegb.com) 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: https://www.youtube.com/watch?v=nfrBDdL47TA

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..."

Video: https://vimeo.com/117046199

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.