Sunday, October 26, 2008

Day seven: Honeymoon over

Today Loki is a week old!

Loki had a positive report on Friday morning and seemed to be responding well to the switch from the respirator to the SiPAP. Friday night we got a call that he not only had to be put back on the respirator, with its tube into his trachea, but that it did not go in well and that the respirator will be needed for quite a long time. It was a tough night for all of us, but in the morning we went to the hospital for a report from the regular neonatologist. (The previous night's disturbing news was from a pulmonary pediatrician.) The situation was not nearly as bad as had been initially conveyed. Yes, he went back on the respirator, but that's not uncommon. Yes, there was difficulty getting the tube in, but the obstruction seems to be above the vocal cords in the throat, which may not be a huge problem. Keeping the respirator tube in his throat is not good, but they'll try pulling it out in a about week.

(Added this paragraph 10/26) One drawback of the SiPAP was that Loki would frequently have a brady arrythmia, in which his heart rate plummets to half or less than its normal value. That's followed by a drop in the oxygen concentration in his blood. Although these events generally self-corrected, they were quite scary to witness. The neonatologist confirmed that these were an acceptable price to pay for being off the respirator. He was given a drug - atropine - that greatly reduced their frequency. Now that he's back on the respirator, they are not occurring.

We have entered Loki into a slightly experimental treatment for preemies who have to go back on respirators from days 7 to 14. They will examine the effect of using two treatments together, each of which have been approved individually. He will get inhaled nitric oxide, and either a lung surfactant or a placebo.

On Monday he'll get a brain ultrasound to see if the bleeding has stopped. The medical staff originally observed some minor bleeding in an unimportant area, and this bleeding normally stops after a few days.

Loki has started feeding. He's getting one ounce of Mom's milk every four hours.

Mom came home from the hospital late Thursday. She pushed herself a bit too hard yesterday, and is taking it easier today. We will be going to say goodnight to him in a bit.

2 comments:

marieke said...

Lieve Mom and Dad,
A bumb came up in the road, I asume thats not a nice feeling! A smooth roadsurface will appear in the future. For now, bukkle up and hold on. Mom take you time to recover, we are with you every day:-) X Marieke

Suzan said...

Dear Mom, Dad and Loki,

Welcome to this world, sweet little Loki. We wish you a wonderful future. We are thinking of you all and making many wishes for your health. Last friday I sent a package full of buddhist blessing and protector strings blessed by many lamas in Kathmandu. You never know, it might help.

Much love and many good wishes,
Suzanna, Johan 7 Phileine

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.
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