Thursday, January 15, 2009

Yesterday, Better Day

Yesterday was a better day. Loki was alert, relaxed, suckling on the breast and looking so, so much better. He is just so incredibly cute.

However, everybody knows I am that mom. I saw more hand washing throughout the day though. Especially the nurse who worked with Loki. Towards the end of the day she even started using the anti-bacterial gel I put at his bed side. Hygiene is still much less meticulous than at Alta Bates (e.g. putting dirty diapers on a napkin in the crib right above babies' heads, not wiping wires when they fall on the floor before putting them back in the crib etc.). I spoke with a variety of people about this issue (nurses, charge nurses, nurse manager and some of the doctors) and am still going to try to talk to one of the two directors. An email went out from the nurse manager to all her staff to remind of hand washing. In addition, a sign was posted above Loki's bed to warn about the spread of germs and wash hands meticulously. It is a bit of a shame they just post this at Loki's bed because as the issue is quite pervasive. Other kids are as important to their parents as Loki is for us. But, it is a start and at least people will be reminded when working with him.

It was helpful to see my worries confirmed by nurse Amber who visited Loki yesterday. I am not just a mom who is freaking out. I was so happy to see her, and it was great to see Loki respond to her. He was very alert and when I needed to eat a quick bite, they were able to cuddle up together. Loki was looking around with his cute little eyes, so much more relaxed than he has been for the past days. His face is much less puffy, even less so then over the past few weeks. This could confirm the theory that the issue was slowly building up; part of his chubbiness was probably fluid build up. It has been great to see all these AB people and talk to them on the phone. It relieves a bit of the sadness. And fortunately, the day nurse started warming up towards the end of the day, whereas the evening nurse was just really nice and good.

However, there seem to be some logistical problems which the nurses cannot necessarily help. For example, anti bacterial gel is not located within hand reach from the cribs/tables/isolets. This does not encourage people to use it when they are working at the bedside, as they have to walk a few steps. It doesn't seem much to do so, but when you are working with a child and the crib is open, you can't walk away. However, The doctor who dealt with Loki when he was so sick at AB, stopped by and emphasized that the infection rate at Children's is not any different from Alta Bates. Let's hope so!

Graciela stopped by as well, and when I needed to pump, she sat next to Loki's bed and sang songs to him. It was wonderful to see her, and it was great to have somebody there with Loki when I was away from his bed.

The nurse whom I personally addressed the second night spoke with me when I bumped into her at the cafeteria. She was quite upset that I had told the nurse manager and charge nurse, and kept repeating she did not have anything contagious. It took some patience from my part, and after explaining several times it has nothing to do with anybody being contagious at this particular moment, but with safe practices in general, she seemed to feel very guilty she had even brought it up. I told her I understood she was very upset and frustrated with me, that I do not enjoy being the trouble maker mom (I am a human being and REALLY like to be liked). However, I hoped she understood I want to be able to hold my baby in my arms safe and sound for the rest of my life. The conversation ended with her offering to primary Loki. We both agreed it was smart to think about that first!

Anyway, we are a few days into our Children's Hospital adventure and I am hoping it won't take much more time then a week or so before we can move to the next step.

6 comments:

Anonymous said...

Yes, I've been "that MOM" too--and believe me, I look at IFSP and IEP plans all the time for children with special needs with the same exact challenges--and the ones with "that MOM or DAD or FOSTER MOM--just get more help/services/attention for their kids. Isn't that sad? But it is life. So, Mama Lion, keep up the good work! And good for you, little Loki Cub, for not only fighting so hard for yourself, but for making care better for every one of your baby friends because of your Mommy and Daddy's advocacy!
Hope to see you tomorrow. Still have a tiny cold sore, so am staying away even from Mom until it is all gone. No way am I going to get in trouble with "that MOM" of yours!
Sending love and good thoughts,
Cheryl

Unknown said...

If you have the reputation of being "That Mom" then you did a good job in reminding them to do things they should already be doing. I'm sure they are all just embarrassed that they had to be reminded. It should all be second nature to them. Stay on them Mom!!! Glad the Little Dude is better. And a HUGE thank you to all the Alta Bates staff who are there for Loki even tho he is not at AB anymore. Your dedication is astounding. You are all indeed angels. Thank you!.....nana

marieke said...

Dera mom, You are GREAT! Offcourse people will point you as THAT MOM but you know, dad, Loki, familie friends and others involved with you are also thinking of you as THAT MOM. That great, liefdevolle, doorzettende, vasthoudende, energieke, alles voor haar kind overhebbende en ook nog aandacht voor andere hebbende mom! (Sorry, no words for it in englisch...)

It is so good to read Loki is lots better, thanx to the doctors in CHO! Is it maybe possible to show him to us by picture soon?......

Dear AB staff, incredible how you stay in touch with Lokisky, mom and dad, wonderfull. I'm very happy I met some of you during my short stay in december.

Kom op Loki, lekker drinken aan de borst, maak je nog sterker dan je al bent! Dikke kus van je tante

Anonymous said...

Lieve mama en papa,
Wat fijn om te lezen dat jullie zo liefdevol worden opgevangen (nog steeds) door de ABverpleegkundigen. En wat een rust moet het dan even geven dat je Loki even uit handen kan geven aan mensen die je vertrouwt en in wiens handen je Loki ziet ontspannen. Ik hoop voor je, dat je ondanks je eigen spanning over het personeel, toch de rust kan vinden om je rustgevende, ontspannende liefde op Loki te richten.
Ik heb de afgelopen week vaak gedacht, wat zou ik er graag even voor je zijn. Even bij Loki zitten en knuffelen zodat jij even kan kolven/eten/slapen etc. Ik spring in het vliegtuig is een gedachte die me niet losliet.
Nu ben ik snot en snotverkouden en ik hoest me lens, dus je zou de deur barricaderen als ik eraan kwam ;-) dus dat gaat niet door. Maar serieus, een echte real life knuffel zou ik je graag geven. Ik visualiseer het nu maar enorm, dan komt hij ook vast wel over.
X Maaike

Mascha said...

Hi, my sweet lion mom. I am glad you stopped feeling helpless and powerless, and took the courage to be the noise maker. Yes, you know I have been in your shoes before, and unfortunately, sometimes this is what it takes to get the care our sick babies need. It was very sad to see Loki being so distressed and you being so upset. So good to read that Loki is doing much better and responds to the medication, and that the nurses seem to turn around to being more supportive. That is a very positive sign. I am so sorry, I can not do bedside duty, as Anna got a cold, and I do not want to object you to any potential germs (the joys of preschool).

And I have to repeat this chorus: You Alta Bates NICU nurses rock! What a different experience. I agree, you will never be forgotten. You made my NICU experience - almost 4 years ago - a time I think of fondly (imagine that), and I am confident Loki's family will feel the same.

Janet said...

Hey "That Mom,"
My sore throat seems to have come back a little bit, so I'll stay away from Loki for a few more days. Hopefully I can visit by Monday or Tuesday. And if they call you "That Mom", who cares? You and Jesse are doing everything right to protect your son. Hope Loki and "that situation" continue to improve rapidly. Knuffels to my boy!
Nurse Janet.

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.
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