Flattened (V)

[+] Mom and Dad were up today as well as Jon. It was good for Dad to see Daniel and find out how all the machines worked. (He’s an engineer — it’s how he copes.)

[+] Mom and I went to Michaels to get yarn. We couldn’t find the same color that the social worker had given me yesterday so we got 5 skeins of Red Heart yarn in the French Country color. My family is referring to it as Cub Scout cammo because it’s blues and yellows.

[+] Daniel behaved long enough for us to go out to dinner. We went to Sudwerks Riverside and I had a really great hummus plate.

[+] I’m missing my bear. I’m missing him babbling, him fast-crawling, him getting into everything… I want to be able to kiss his hair and smell baby shampoo or cuddle him and clap nursery rhymes with him. It’s really hard right now and I’m having to trust that it will get better.

[+] Mom took lots of pictures and a couple movies. I’m putting a cut here so that those who would be traumatized by the sight of Daniel with tubes can avoid that. It’s tough to see but he’s not in pain and he’s just in a medication-induced hibernation.

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Flattened (IV)

Things are better today. I haven’t cried… yet.

[+] Daniel had a minor episode last night (and the thought is that I was probably at dinner at the time) but not anything that required epinephrine and all. Our goal for this shift has been that he stay stable and not have any big desaturations of his O2.

[+] Our social worker brought me yarn and a crochet hook. Sweet! Mom and I are going to go yarn shopping tomorrow to get some in the same colorway so I can make a baby blanket or something. It will probably be donated to Project Linus when all is said and done.

[+] Our social worker also got me a day pass to the local Ronald McDonald house so I could shower and have a place to go decompress. It was hard to leave the unit to do it (I’m still nervous about Daniel doing something when I’m gone) but I did go shower and chill with the volunteers. The Ronald McDonald houses are AMAZING and a charity I will seriously support when this situation with Daniel is over. It was almost bringing me to tears how generous people are there — there are donations of food/toiletries/baby formula/crocheted hats for the families and while they ask for a donation each night that the family stays there, they don’t turn away families if they can’t pay.

[+] I’m reminded of the quote attributed to Mother Teresa (is she a saint yet?): “I know God won’t give me anything I can’t handle. I just wish He didn’t trust me so much.”

[+] Daniel’s resident last night and I were joking about “the rules”: No suctioning him/no turning him/no bathing him/no looking at him cross-eyed! Only bear stories and songs! (I love N. She is wonderful.) I don’t know who the night nurse is going to be but the attending on the unit tonight is one I like.

[+] When I went down for dinner tonight, they were pretty much down to the dregs of the clam chowder and the server apologized. I took the dregs anyway, paid for my food, and went to eat. About the time I got to my chowder, the server came out and handed me a bowl of fresh stuff that had been reserved for the patients. Dude…

Flattened (III)

[+] About 5:00 this morning, Daniel had a desaturation episode and all of a sudden my room filled with lots of interesting people. I was so sleepy that I was joking around with them. The gravity of it hit me this morning during rounds (which I dragged myself out of bed to attend). To get my mind in gear to get through, I went and changed into clothes and went down with my laptop to have breakfast. Daniel’s doctor wasn’t happy about the desat but we know why (he wasn’t sedated enough when the nurse tried to move him to wash his back).

[+] The little boy at the opposite end of the PICU from us may be taken off life support soon and this is depressing me because I’ve gotten to know his mom. It doesn’t seem fair, especially since her son had something happen that doctors couldn’t diagnose. They’re going to have to make some really tough decisions and I can’t even imagine being in her place.

[+] I was coming back from the bathroom and from talking to the other mom and was almost in the room when Daniel’s nurse yelled out, “I need help!” People rushed the room and someone ran to get the attending doctor. It was maybe 1:30 or 2:00 minutes total but it just threw me apart. During all of it, the attending doctor was saying “Don’t worry. He’s OK.” I couldn’t believe her though and started sobbing. When the doctor walked out, I told her to page the social worker. I was going to be OK but I needed someone to be with me NOW who could talk me down. (For the record, Dr. Ice Princess gave me a hug after it was all done. She is now up one more notch in my esteem.)

[+] I’m watching “The Biggest Loser” right now (though I know that Arthur is the one who goes home). One thing that the show does is talk to the contestants about how and WHY they gained the weight. A lot of times, it was “parents’ divorce” or “death of family member”. I can look at myself and point to my excess weight and tell you where it was gained. Part of it is “baby in NICU”. Part of it is “bad parish situation”. Part of it is “stress”. I’m trying to not have any of it be “baby in PICU”.

Flattened (II)

Daniel did rebound last night and has stayed stable since. Here are some vignettes from today.

[+] A friend from college is taking me to dinner tonight to get me out of the hospital and I’m simultaneously happy to get away from the hospital for a couple hours and terrified that something is going to happen while I’m gone. Everyone has told me that this is something I *HAVE* to do — if I stay on the unit 24/7, I will go crazy and I know this. I thought I was being so good though in taking meal breaks… (Dinner was good. We had pho. Daniel was fine while I was gone.)

[+] Because of the possibility that Daniel might still be needing ECMO last night, I was banished to the “quiet room” for the night where I made a pallet on the floor. I didn’t think I’d sleep well but I actually got six uninterrupted hours without being woken up for x-ray techs.

[+] I’ve gotten to be friends with the family at the opposite end of the PICU. (I ended up comforting the baby’s aunt on Monday when they called a code on her nephew and she and her husband were being present for me last night.) Her nephew is in worse shape than Daniel and the mom and I had a talk today about the whole thing. She had a copy of Our Daily Bread and she was talking about how she’s been reading it to her son. I think I’ll start doing that with Daniel. Her family is praying for Daniel and I’m praying for her baby.

[+] The resident who seems to be on during the day needs some better instruction in bedside manner. It doesn’t work to be an ice princess when you’re dealing with fragile parents. I think she’ll improve with time but it was irritating talking to her on Tuesday. Her attending is being more careful with me after watching me go to pieces (justifiably) two days in a row. The other peds resident who came in today was wonderful — very polite and asked if I minded if he examined Daniel. (He didn’t have to ask but I did appreciate it.) He then expressed concern about how I was doing and urged me to get off the unit and out of the hospital when I could. It was nice that he was concerned — it does help to know that I’m part of this.

[+] The anesthesiologist who did Daniel’s intubation on Monday stopped in to see him. This was really sweet — he didn’t have to do it and I thanked him for it.

[+] I’m not incredibly happy with God still (issues with WHY this is happening) but He is no longer on notice.

God willing, we’ll have another quieter day tomorrow and no drama tonight.

The Simple Woman’s Daybook: March 1, 2011

I almost lost Daniel tonight so pardon me if I’m a bit bitter and cynical.

Simple Woman's Daybook

FOR TODAY March 1, 2011

Outside my window… the hallway to the MSICU and the PICU where Daniel is.

I am thinking… about how I’m going to get through this time of Daniel being in the PICU.

I am thankful for… Daniel rebounding and not needing to go on ECMO.

From the kitchen… I’m eating out of the hospital cafeteria — when I have an appetite.

I am wearing… grey shirt and pajama bottoms.

I am creating… this entry.

I am going… nowhere anytime soon except the bathroom and the PICU. (I’m banished to the “quiet room” tonight because they need to keep Daniel’s room open in case ECMO has to happen tonight.)

I am reading… Auntie Mayhem by Mary Daheim.

I am hoping… Daniel pulls through this soon and his lungs start making a turnaround. Mostly, I’m just hoping he makes it through the night without any more problems.

I am hearing… Jon sleeping, the ventilation system, occasional alarms. God willing, I will not hear “Code Blue: Tower 7 PICU.”

Around the house… I’m at UC Davis Medical Center. I don’t know when I’ll see the parsonage again.

One of my favorite things… the amount of support from family, friends, and parishioners. Also the way the nurses take care of me in addition to Daniel.

A few plans for the rest of the week: Being here in Sacramento at the UCD MC PICU.

Here is picture for thought I am sharing… My life is too horrific at the moment to photograph.

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Daniel (with God’s help) pulled off a coup and managed to rebound with some ventilator tweaks and stay stable. They’re going to put off ECMO for the moment and God willing it will not have to be done during the night.

Praise God!

(God, you’re still on notice though.)

Flattened (I)

I signed the paperwork for Daniel to be put on the heart-lung machine (ECMO) about half an hour ago or so.

Yes, it is seriously that bad.

I’m completely flattened. I threw up my dinner and I don’t know that I can eat again for a long time.

I’m simultaneously thoroughly pissed off at God and trusting Him to get us through this.

I’m just at the end of things.