Flattened (VIII)

[+] Daniel had a grumpy day yesterday in which he was really irritated when he was awake. This might be just him feeling sick and having less meds in him to make him happy, it might be the weaning off the drugs he was on when he was on the ventilator, or it could just be him feeling icky. It was hard for me because I couldn’t really do anything to calm him down.

[+] Speech therapy came when he was trying to go back down for a nap so he didn’t pass his swallow test. Hopefully, he’ll pass it today so he can start having bottles and stuff by mouth.

[+] He’s getting his central line (the IV in the artery in his groin) out today and may be able to move to a regular pediatrics unit. This is both a good thing and something that is terrifying me. It also means that he’ll be starting on Lovenox shots and he may have to go home on those. Please pray that he doesn’t — I’m not feeling good vibrations about having to give him shots.

[+] I’m menstrual so I’m hyper-emotional. This is meaning that I’m sitting here in the cafeteria wanting to cry about all of this. I’m used to life on the PICU (as bizarre as that sounds) and I’m terrified of change. I think I’m also terrified of taking Daniel home and doing this on my own. (I just gave in and got some chocolate. At breakfast.)

Flattened (VII)

Argh…

[+] I didn’t get to sleep until almost 11 last night and while coming back from the bathroom at 2 a.m., I nearly got flattened by a horde of medical personnel racing into the PICU as a CODE BLUE was called over the PA system. I knew it wasn’t my kid but it was still a rather adrenalinated experience. Then, the respiratory dude decided to rearrange furniture in the room at 4 a.m. by getting rid of the ventilator and two helium-oxygen tanks… in the loudest manner possible. I decided that I would get breakfast at 6 a.m. if I was still awake… which I was. At least the x-ray tech was kind enough to hand me a lead apron to put over myself when he came in at 5:30 instead of making me get out of bed.

[+] It’s Mardi Gras today so I got my pancakes this morning. (It’s an Anglican thing.)

[+] A 17 year old on the MSICU (the major surgery ICU unit next door where the older kids are going for overflow purposes) got life support pulled this morning. His mother begged me to love up my baby, give him a hug for her, and make sure I told him how much I loved him every day. OK… a little bit of an emotional load there. I just found out that the baby at the opposite end of the PICU is brain dead and they’re probably going to have to pull support in the next couple days. His mom and I have gotten close so I held her in the quiet room while she made some phone calls. It’s tough for me because that could have easily been Daniel. The social worker on the unit told me last week that this happens and that I’ve got to fight the fear. For those who pray, add the families of Zach (17 year old) and Jonathan B (almost 3 years old) to your list.

[+] Daniel has a blood clot in his leg from the central line so they’re starting him on Heparin. We knew it was a possible side effect and the therapeutic benefit of the line outweighed the risk of the clot. I’m hoping they get this resolved before they send him home because I am not wanting to deal with having to give him shots.

Gah. Going to try and take a nap. I need Edda right now. I wish I could sneak her on the unit.

Flattened (VI)

I’m not totally flattened anymore — I’m just really spacey from my sleep being so disturbed.

[+] Daniel got extubated today. (Translation: no more ventilator and no more breathing tube.) He’s also being weaned off his sedatives which means that he’s getting more aware and thus able to participate in more mischief and mayhem. I forsee restraints in his future, especially tomorrow, if they can’t get a peds crib in here.

[+] Mr. Blue Eyes has gained about 6 lbs in fluid in the last week, mostly in his right leg and groin region from his central line. I couldn’t believe how heavy he was when I was cuddling him tonight. Diaper changes are going to be a blast until the fluid build-up clears. It’s good that we stocked up on size 4 diapers!!!

[+] When I came back from dinner, there was a Baby Looney Tunes DVD on. The nurse (who I wasn’t totally fond of like I am of most of the staff on the unit) explained that he did better with music. I decided to break out the iTunes so we’ve been chilling to Anonymous 4 and Fernando Ortega tonight. It’s given me some chances to sing to him. Our night nurse is all in favor and she is doting on him like nothing else. (She’d like to take him home thankyouverymuch, especially after the little monster batted his eyes at her.)

The Simple Woman’s Daybook: March 7, 2011

Simple Woman's Daybook

FOR TODAY March 7, 2011

Outside my window… sunny after serious rain yesterday.

I am thinking… about a million things like the fact that the hospital cafeteria is overrun with teenagers to Daniel’s extubation (getting his breathing tube out this afternoon).

I am thankful for… Daniel being 180 degrees from where he was after my last Daybook post. Also thankful for the Ronald McDonald House here where I’m going to get a shower this afternoon.

From the kitchen… eating out of the hospital cafeteria and trying not to gain weight.

I am wearing… brown shirt, jeans, black hoodie.

I am creating… this entry and a baby blanket which may go to one of three babies to be born in May or to one of two charities.

I am going… back up to the PICU in a bit.

I am reading… The Alpine Decoy by Mary Daheim.

I am hoping… things keep improving for Daniel.

I am hearing… voices in the cafeteria.

Around the house… I haven’t been home in more than a week.

One of my favorite things… the nurses and RT and I turning Daniel on his tummy last night. Five 20 and 30-somethings fussing over him — I am afraid of the portent it shows for the future.

A few plans for the rest of the week: getting to meet Kym for the first time in person tomorrow, hanging with my little bear

Here is picture for thought I am sharing… It’s an edit from the last entry. I cut out a picture of my hands around Daniel’s hand. I have little china doll hands but mine are big compared to his. You can see some fingers and also the thumb where they have his pulse-ox.

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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…