Monthly Archives: March 2011

Flattened (XI)

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[+] Little dude passed his swallow study and will hopefully get his tube out today or tomorrow. I’m trying to keep the liquids going at the moment, now that he’s allowed to have them again. He’d rather be moving and out than hydrating himself so I’m having to make stuff up to the tune of “Twinkle Twinkle Little Star” to sing to him while we have “baba time”.

[+] Our roommate’s family is annoying me. They are having loud conversations in Spanish at all hours and they bogarted some of Daniel’s baby food today and then lied about it. I’m wondering why the kid isn’t in the PICU because his O2 alarm goes off frequently and the numbers are less than stellar.

[+] We’re trying to get two bottles of Pediasure down Daniel’s throat today. We’re currently at just over one bottle.

[+] Discharge is looking like it will be tomorrow. We’re going to have to make trips back here to the Coumadin Clinic to follow Daniel’s Lovenox dosing and shots. Not my preference but I guess it’s what we’ll have to do.

Flattened (X)

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[+] Daniel was up until 2 a.m. which meant I was too. He was taking apart everything in his crib (which prompted me to tell the nurses not to give him a screwdriver). Adding to all of this, our roommate last night and her parents were loud so it took awhile to get to sleep. They also had an annoying habit of leaving the TV on. I was in such a foul mood this morning that it took all my self-control not to throw the chair through the TV at Elmo when Sesame Street came on.

[+] I got woken up at 8:00 this morning to go down to radiology with Daniel. At first, I was planning to let him go down alone but my nurse guilt-tripped me into going. (She asked if I wanted to be down to comfort him. Guilt trip laid.) He, however, was not going to be comforted and was a regular grizzly bear. The clot is also still there (though it’s better) and this means 3 months of twice-daily shots (as opposed to the six weeks they originally told me that it would be). I was not happy.

[+] Being wholly sleep-deprived, I started stressing about him not cooperating during his swallow study tomorrow and having to go home on a feeding tube (which would be a new level of purgatory for me, his shot-giver and caregiver). So… pray that he cooperates tomorrow.

[+] Adding to all this (oh yes… there’s more), my laptop was having start-up problems. At this point, I started sobbing. The charge nurse came in and tried to calm me down. She suggested I go through the start-up recovery (which I did… five times) and she offered to take Daniel for some cuddles so I could rest. Bless her. A few times today, I’d pass by and she’d magically have Daniel with her. The second time, he was on her lap cuddling and helping her chart. (Apparently, he reminds her of the little boy of one of the other nurses who was in the same situation and actually *DID* end up on ECMO.) The third time, he was sitting on the counter while she combed his hair after giving him a bath. (He was experimenting with bowel movements while his diaper was off. The bedding got changed and he got a bath — all while I was down at dinner.)

[+] I got a shower at the Ronald McDonald House… and my library book disappeared there. Thankfully, it wasn’t one of the LINK books which have a $115 penalty if they get lost.

[+] I am headed to bed. Daniel seems to have settled down after removing his feeding tube TWICE.

The Simple Woman’s Daybook: March 14, 2011

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Simple Woman's Daybook

FOR TODAY March 14, 2011

Outside my window… dark. My laptop was refusing to start this morning so I had to wait until now to post.

I am thinking… about the Lovenox shots that I’ll be giving for the next few months to Daniel because of the blood clot in his leg caused by the central line. I’m also somewhat terrified that he’s not going to pass his swallow study and end up going home on the feeding tube.

I am thankful for… Daniel being on the peds ward now, for my laptop working, for Mom being empathetic, for the charge nurse snuggling Daniel for much of today, and for the student nurses entertaining him in the playroom.

From the kitchen… still eating hospital food.

I am wearing… my We Will Not Be Silent shirt and my penguin pajama bottoms.

I am creating… a baby blanket for Lent (which I really should work on) and this entry.

I am going… home with Daniel hopefully Wednesday but definitely by the end of this week.

I am reading… A Decadent Way to Die by G.A. McKevett

I am hoping… Daniel passes his swallow study tomorrow.

I am hearing… Daniel’s roommate screaming (justifiably — the poor kid had corrective surgery that involved bones today)

Around the house… haven’t been home in 2 weeks

One of my favorite things… my shower at the Ronald McDonald House today.

A few plans for the rest of the week: hopefully going home with Daniel

Here is picture for thought I am sharing… Daniel and I in the playroom.

Daniel and I in the playroom.

Hosted by The Simple Woman’s Daybook

Flattened (IX)

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[+] They finally had a bed available on the pediatric unit (a.k.a. the floor) yesterday afternoon. We’re sharing a room with a 9 month old boy.

[+] Daniel did not pass a liquid swallow test so he’s only allowed purees. Thankfully, the kitchen staff at UC Davis Medical Center actually *shape* the food like what the person is supposed to be eating so it’s palatable. He had chicken for the first time and we’ve discovered a love of vanilla pudding.

[+] My parents are up today and after Daniel and I took a nap and I had lunch, we went with Daniel to the playroom where he sat up and played a bit. He also took a few steps holding on to my hands. This is good news — he’s still pretty weak but he hasn’t lost any muscle knowledge.

[+] Time for mommy cuddles and book-reading!

Flattened (VIII)

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[+] 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)

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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)

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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.)