Tuesday, November 3, 2009

Happy Halloween?

Happy Halloween? Not so much for Loki.

Unfortunately, While Dad was out of town, I got sick the day before Halloween (which is Oct. 31), with what I thought was food poisoning. However, by Halloween afternoon Loki had the same symptoms and within hours we were at the hospital emergency room for the initial stage of dehydration. Loki was very pale, very fussy and was unable to keep anything in. In addition, he was crying without tears and his pee had decreased significantly. Because we responded rapidly, by the time he was receiving his IV fluids to rehydrate, his creatinine was still within normal range. However, his BUN and ketone levels were elevated already.

We spent 6 hours at the ER of Children's Hospital Oakland. Overall we had great nurses and good care. Unfortunately hygiene standards of the intake nurse were less than desirable. We hope Loki will not catch whatever the family before him had, which was obviously contagious as they were all required to wear face masks.

At 11 pm, we were back home with a perkier Loki. Over night he was still very thirsty and woke up frequently wanting to drink Pedialyte hydration solution by mouth from an open cup. He drank the amount of two complete feedings: very impressive, but apparently only possible when he is dehydrated, because it has not happened ever since. It is exciting to know though that he is able to swallow without aspiration.

Sunday and Monday were very, very challenging. The extension tubes that plug into his G-tube button were not functioning well because they are simply too old (and we have not received our refills yet), causing the syringe to no longer remain connected to the extension. Also, the extension easily fell out of the button. And the valve in the button was not closing, and the button itself kept opening up, as usual, so some of his feeds just dripped straight out. On top of that, much of the Pedialyte came out either end. During the day it took 2 hours to get 75 mL of Pedialyte in by hand syringe (versus 105 mL of milk in a normal feeding), this every three hours..... do your math.

Loki also started to miss his daddy, he often looked around when I said "daddy." He did not take his naps, nor did he sleep much overnight after 2:30 am. I believe this was partially caused by being homesick for super dad.

During all the commotion, I did not really have time to recover from my own stomach bug, from which I just needed to catch up on sleep a tiny bit. More than three hours seemed like a wonderful night. Thankfully Opa and Oma were here as well, and they picked up as much of the care as possible. Opa had a crash course feeding and he rapidly became quite skilled.

Yesterday, we saw the doctor again, and unfortunately Loki lost almost a full pound. However, we all agreed that hydration is more important right now. The plan is to be back to full formula/breastmilk feeds by Saturday. Until then, we are building up his tolerance for volume slowly but steadily, this time with the pump. Super Dad, with a fresh mind from his four days of music and camping, figured out we could use the pump again with this new extension (which keeps the pump tube in the extension) and an even tighter girdle (which keeps the extension in the button). This makes a HUGE difference.

On a much more positive note, Loki crawls well, although only when he really wants to reach object--never just because he like to crawl. Video will follow when we have a new camera. (Dad accidentally washed our camera with the laundry). Loki also hands over objects on request or spontaneously and he especially likes to share his pacifier with me: very, very cute. He pulls my hand to push buttons and he looks up to find Faddy, Oma, Opa, duck, cat, mama and once in a while Ganesh (a little statue near his bed). He loves looking at pictures and will turn the page in a book very well when we make the initial separation for him. Finally, our handsome miracle dances when we start to sing--very cute!

Loki's mood has significantly changed since his dad came home yesterday. He also slept really well overnight, and he has kept all his Pedialyte feedings in since yesterday evening. Thanks to Dad, who took the entire overnight shift so I could finally recover a little bit, I fell much better as well.

Poor little guy:


Kyra said...

Haha. fortunately, there's also the good news of a very clean camera! hope you can laugh much more soon.

X Kyra X

marieke said...

Oh dear, in proper english, I talked to oma on the phone while mom was trying to sleep a little. But how great that Loki response so well on dad being home! Music and camping is great for creative thinking that's for sure, what a blessing the pump can be used again. I can help out for a week soon and I can't wait to see you 3!! Try to put the camera in the dryer........

Richard en Maaike said...

Wat heb je het zwaar gehad! Laat Dad er maar nooit meer aan twijfelen dat hij minder belangrijk is voor Loki. Dat hij erg belangrijk voor hem is, lijkt me nu wel duidelijk. Wat goed dat loki ondanks al deze ongein toch lekker verder ontwikkelt. Wat wordt het dan een mannetje he?
Ik hoop dat je zelf snel weer helemaal bent opgeknapt.
Kus Maaike

Cheryl said...

What type of extensions are you using? I have several, and two boxes of extra 3 ml, 5 ml, 20 ml, and 60 ml syringses (all but the 60 are luer tip, 60 are cath tip). I have various drsessings for around stoma site, though I loved lyofoam but our insurance stopped covering it...I even have an extrr MicKey button, 1.5 cm, 14 french. I have extension attachments that plug directly forward, or to the side...so I'm a regular gtube supply store over here, and would love to pass some of this on--what you don't take, a physiatrist at CHO is with doctors without borders, and is going to take it to kids in Honduras, Ecuador, and Peru.
So let me know...and I'm so sorry about this stress--Nate was hospitalized overnight at Loki's age for dehydration from a terrible stomach bug that turned out to be rotavirus...we volunteered some baby poop for the research study!

Stomach flu is the worst.
Rest and drink, you two. Glad papa is back.

fransje melief said...

Well, what a shitty halloween indeed! But no worries, he knows how to dance!! He really is becoming a kleine peuter. Hope to hug him sometime before he's all grown up :-)

x Fransje.

Suzan said...

Wat een verhaal! En ik jou maar mailen over ons leuke verjaardagsfeestje...
Heel veel sterkte met kleine Loki en met je gezondheid en heel veel liefs ook aan Jesse,


Greet said...

Lieve Kathalijn, oeps wat een zware dagen, fijn dat je moeder en Frits er waren, en heerlijk dat Jesse weer thuis is, wel mooi dat Loki heimwee had. veel kracht en sterkte, liefs van Greet

Piapie said...

What a drag. So sorry that you both were ill. Hoping that the recovery is quick.

About Loki Sky

Loki Sky is a special little man. He was a very early micropreemie, weighing only 610 grams (1 lb, 5 oz) after 24 weeks, 3 days gestation, born to an American Father and a Dutch Mother in Berkeley, California on October 18, 2008.

On January 11, 2009, while still in the hospital NICU, his one kidney stopped working. It was repaired after three surgeries. After spending time in three hospitals in three cities, Loki came home on February 17. He struggled with eating, and then stopped in July, leading to 8 days in the hospital, a failure-to-thrive diagnosis, and a NG feeding tube. On October 10, a minor surgery installed a G feeding tube. Another procedure replaced it with a new one, and then again with a Mic-Key button in Jan. 2010.

In August 2010, he and his parents moved to the Netherlands.

Read about his first name.
Read & hear about his middle name.
See photos.
See videos.

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