Author Archives: Jen

About Jen

Jen isn't quite sure when she lost her mind, but it is probably documented here on Meditatio. She blogs because the world needs her snark at all hours of the night... and she probably can't sleep anyway.

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[+] We are having to give him shots and I’ve done 3 so far at home. This isn’t making me a happy little lepicat but it’s better than the feeding tube.

[+] Daniel used to like baths — he now appears to be afraid of them. Oyyy… It might be that there’s pain involved or that he’s afraid of the sound of the running water. I climbed into his bath last night and tonight because I needed to clean him (first bath in almost 3 weeks last night and had to get the adhesive off his neck tonight). Hopefully, he gets used to them again.

[+] I had an excruciatingly painful migraine today, complete with nausea. Jon had to do bear care and it was hard because Daniel is not being his normal self. He’s much more clingy and on the plus side, he’s fallen asleep on laps today.

[+] I have to get taxes done in the next two days and go apply for Medi-Cal on Monday. I then have to go down and apply for California Children Services on Friday. I’m hoping they’ll accept me instead of Jonathan for that appointment. I’m also praying that we’re approved — it’s going to be a 5-figure hospital bill otherwise.

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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.

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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

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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!

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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.)