Wednesday, January 14, 2009

Love from Alta Bates

Wow, today was very hard and I believe I must have cried for hours and hours, despite the fact that Loki is starting to feel better. Until late in the afternoon Loki looked as miserable and sad as I have ever seen him. One of the nurses today kept looking at the monitor, and since he was satting just fine she kept mentioning how great and happy he was. Bizar, because if she would have taken one peek at his face, she would have known he was feeling extremely miserable. His little face crunched up in a silent cry. I could only stand there paralyzes and wondering if there was any chance in the world I could convince Doctor Sandhu (director of Alta Bates NICU) to take him back. I was deliberating with Mascha, whose visit was extremely supportive, if there is any way we can have a 24/7 team available just to keep an eye on Loki.

This NICU is absolutely awful in my opinion. I knew Alta Bates was one of a kind, but seeing the distinction this clearly is just completely bizar. Some of it may be preference. For example, I prefer nurses talking to Loki when they are about to hurt or disturb him. Or at least comfort him when he is upset. I guess when you look at the monitor and not at the baby you may miss the fact that a baby is actually in pain or sad. Weirdly enough barely any of the nurses at CHO talk to the babies. The lights are bright, there is a lot of noise during the day, and the kids are moved around, poked by needles and often not at all comforted. Compassion is not a concept in some people's dictionary. But then again, some nurses are okay.

Another pretty serious issue; the hygiene protocol is not followed by several nurses AT ALL!!! Noses, faces and equipment are consistently touched without hand cleansing and then Loki is handled, his blood is taken and lines are arranged. This is not just annoying, it is dangerous. I can imagine it is hard to always remember, although Alta Bates nurses do not seem to have that problem. However, almost consistently forgetting is ridiculous at a place with very sick, tiny babies. I asked the respiratory therapist if she could please change her gloves before using a heal stick to draw blood, as she was just hanging up the phone. She walked up to Loki without paying any attention to him, just grabbing his foot, while on the phone and then hanging up. Mascha and I looked at each other in disbelieve. The phone is used by different people and she actually would get involved with his blood stream without cleaning her hands. Fortunately during the last shift we had a nurse who was on top of hand washing.

There are some positives though. The doctors are really, really great. And, Loki was extubated a few hours ago and seems to be doing well on 4 liter high-low flow with oxygen support in the low and mid twenties. Hopefully he will succeed. His blood gases and electrolytes are good. He was laying on his tummy and seemed much, much more comfortable then earlier in the day. Maybe in a few days he will start his feeds again. Other good news, he may have the next surgery within a few weeks, if his kidney starts picking up the work well again. Although SF would be a ways away from home, I would prefer him to have the surgery at UCSF, so we can leave children's. The doctor performing the surgery would be the same anyway, and my thinking is that it can not really be worse then here. Maybe I am jinxing myself though!!

The very best parts of the day, Loki and I received lots of love from Alta Bates today. First, Dr. Sandhu stopped by this morning to see how Loki is doing. Annette, one of our wonderful primaries at AB all of a sudden stood behind me. She was there to pick up a child for a transfer back to the NICU (oh my, am I jealous). I immediately broke down, again..... She brought a very, very sweet card for Loki made by Janet (of course :-) and signed by many of the staff. The card and Annette's hug really helped. Magic, the RT (respiratory therapist) was there with her and checked our our little guy as well. Dr. Joanna, who first dealt with Loki when he started getting sick over the weekend, called to check in on him, and said she would stop by sometime tomorrow. During evening round Dr. Anna Uzowic was present. She had Loki for several weeks very recently, and it was just great to see her. Margaret came for an extensive visit. As soon as she was there Loki really, really calmed down, and so did I. We had dinner together at the Cafeteria (which is actually better than at AB NICU). It was so wonderful to see her and get some of her ideas on how to help Loki, and myself, feel calm in that crazy environment. Blanca stopped by, which is amazing to me. She is incredibly supportive and like Margaret, listened to my worries and hefty complains (sorry ladies). It must be hard hearing me talk about CHO the way I did, they work together a lot with this group of people. Misty, our AB social worker called me back with some advise on who to talk to (I called her completely in tears). And finally, we received a message from one of our favorite moms at the AB NICU yesterday evening and I saw that one of our other favorite moms called as well!!

Writing this, I realize I am profoundly touched and impressed with the level of support coming from this one place!! WOW! Alta Bates folks you will never be forgotten. (Janet, of course you can come see your little friend, I know he misses you tons and tons, and so does his mommy.

Well, long, ranting message, mommy style :-) Not rereading cause it's time for bed and I am really tired. Apologies for length, incoherency, mistakes etc.

20 comments:

Anonymous said...

Hi Loki, Lijn & Jesse. Unfortunately the change comes with new worries. But it's a big relief Loki is recovering quick! Love to y'all: Opa Frits Dr. :-)

Anonymous said...

Tja en dan zit je daar, doodongerust over je zieke kind en je mist je vertrouwde plek in dat goede ziekenhuis. Je moet weer helemaal opnieuw wennen en dan zie je ook nog eens allemaal dingen die je niet goed vindt (ik ben het helemaal met je eens!!). Terwijl Loki juist nu die goede en liefdevolle (!) zorg zo hard nodig heeft. Ik kan me je tranen zo goed voorstellen. Ik hoop dat alle tips van de mensen van AB je geholpen heeft om iets met je bevindingen te kunnen doen. Spreek ze uit, want daarmee help je Loki. Heel veel succes!! Kus en een stevige knuffel Maaike

Anonymous said...

Lieve Lijn, je zorgen over het Blog zijn natuurlijk de minste. Je hele leven moet één langerekte, insamenhangende fout lijken deze week. tjonge jonge. Wat moet het heftig zijn; ik hoop dat je tenminste veeeel tijd bij Loki kunt zijn om hem te laten weten dat je er voor hem bent. En over de nurses niets dan goeds; wat een onmacht moet je voelen als je ziet dat Loki zich zoveel beter voelt bij Margaret, en ook fijn dat hij zich dus kennelijk heel erg goed hecht (petje af voor AB) als er duidelijke significant others zijn. Hoe gaat het nu met hem, en hoe gaat het met pappie?
Over drie weekjes zijn we bij je en hopelijk kun je dan alweer wat meer lachen, en Loki ook.

Wij zetten onze plannen even in de koelkast en zien dan wel hoe het jullie vergaat en wat je nodig hebt. Kusjes van ons vieren.
Kyra, Muus, Lova, Erwin

Anonymous said...

Ik bedoelde natuurlijk de AB nurses!!

Kier

marieke said...

Schrijf maar lekker van je af. Het lijkt mij heel naar om Loki zo verdrietig en met pijn te zien zonder dat er naar jouw idee liefdevol naar hem omgekeken wordt.wat fijn dat je "oude" zusters zoveel aandacht hebben, zelfs in een ander ziekenhuis! Dat is echt hartverwarmend! Loki voelt dat papa en mama er voor hem zijn dat weet ik zeker. Hopelijk kun je wat met de tips en woorden van de AB mensen en krijg je wat rust. Wij denken steeds aan jullie!
Veel liefs voor Loki, papa en mama.
XX Marieke en Martin

Anonymous said...

Oh Lijn! It's so hard when you can't do for your baby what he needs and then have to rely on other people who don't seem nearly as dedicated or compassionate as you'd want them to be. I remember being so impressed with the AB staff myself. I can only imagine what it's like to leave them in a moment of crisis. Our thoughts continue to be with you three.

Pia and Jonathan

Mascha said...

I am so glad that you got more visitors who could actually help you. It was indeed disturbing to see the difference between the two NICUs, the lack of compassion and safety in particular. It might be due to work environment, but probably also personality. Hopefully things will get better soon, and Loki will be ready for the next surgery, and hopefully a better environment.
It is comforting to read that he calmed down later. Big hugs again.

Mascha said...

I am so glad that you got more visitors who could actually help you. It was indeed disturbing to see the difference between the two NICUs, the lack of compassion and safety in particular. It might be due to work environment, but probably also personality. Hopefully things will get better soon, and Loki will be ready for the next surgery, and hopefully a better environment.
It is comforting to read that he calmed down later. Big hugs again.

Anonymous said...

O Lijn, this all moves me so much and I would so very much want to be there with you now - like you so very much want to be there with little Loki. We're both moms, are n't we?
I feel both useless and powerless at the moment. I am glad thouhg to be able to send you some energy from time to time. That at least I can do. And soon the time will come that I'll be there again to manage your houskeeping, sweep everything with lysol tissues and get arms full of diapers for our precious little kid.
I am so glad and grateful to all those people supporting you in this horrible situation - they sure are the angels sent from heaven to make this all tolerable for you. I realy am convinced of that. Thank you so much, all of you.
Just hold on. Everything will turn out rihgt.
Dikke kus en knuffel voor jullie alle drie,
XXX
Heleen

Anonymous said...

I just want to add my hopes and thoughts and good wishes to all the amazing ones here. Also to admire your smarts and fierceness about making sure Loki gets the very best care. As you obviously are aware but some of the nurses seem not to be: you know Loki and his ways and his moment-to-moment needs better than anyone in the world.
Marcy

Anonymous said...

This is outrageous. Ask to see the vice president of Nursing/chief nurse execuritve, Nancy Shibata--today! Not every little baby "cub" has a fierce lioness to protect him like Loki does--and they all need protecting! The lack of compassion and the failure to follow basic hygiene protocol BOTH put babes at risk. Call me if you want me to arrange a meeting--I've gotten good at fighting on behalf of those who can't fight for themselves...but at miniumum, the NICU social working, NICU Attending and Chief of medicine and Head of nursing need to know about this. I can come over TODAY if need be to set it up.

That said (sorry, my blood is boiling :[ , the good news is the Loki is off the vent, and improving. And I'm so happy to hear that his "team" of cheerleaders and helpers just keeps growing. YOu do have this effect on people, you know. Nice to know so does Loki Sky. But again, I know you agree with me--every baby deserves loving safe care---no exceptions.

Anonymous said...

Hoi lieve nicht,

Ik heb met open mond zitten lezen over het gebrek aan hygiëne en het feit dat de nurses zo 'klinisch' met Loki omgaan! Die uit 't andere ziekenhuis zijn goud waard, dat blijkt wel weer. Zo te lezen heb je daar veel mensen om je heen die er voor je zijn. Erg fijn. Ik hoop dat je je staande weet te houden. Veel liefs, ook voor Dad en de dappere Loki!

Naomi (& Stefan)

Suzan said...
This comment has been removed by the author.
Suzan said...
This comment has been removed by the author.
Anonymous said...

Neonatal followup Blanca? I know here pretty well, and she's a great advocate for her little kiddos. I used to know the NICU social worker but don't know if it's the same person. I'm so sorry to hear that it's not the same as ABH - I guess I never really knew since I only meet the kiddos once they leave. We're all thinking of you lots over here at RCEB. - Jennifer

Suzan said...

Lieve lieve mom en dad,

Wat een narigheid! Heb zware griep, dus lees het nu pas! Wat ben ik geschrokken zeg! Ik had het helemaal niet verwacht! Het ging allemaal zo goed! Wat leef ik met jullie mee zeg. Wat moet dat naar zijn als ze aan dat lieve kleine baby-lijfje lopen te rotzooien. Wat fijn dat Loki eindelijk weer ontspande. Nou jij nog... Mediteren lukt even niet, maar medicijnboeddha-mantra's zeggen en wensen maken wel. Dat zal ik doen.

Heel veel liefs en heel veel goeie wensen ook van Johan en Phileine,
Suzan

Anonymous said...

Sorry--just talked to our pediatrician who knows CHO well--she says the best way to get these issues addressed fast is to ask for the Patient Advocate asap.
510 428-3885 ext. 5483, or write to Patient Safety, CHO, 747 52nd st. Oakland, 94609.
I guess I'm just trying to do something, since I know Loki is okay, but need something constructive to do! I also think the idea of having people do shifts might set your mind at ease, and let you rest--I always felt better when I needed to leave, even briefly, that someone was there in my place.
Cheryl

Janet said...

Dear Loki and Kat and Jesse,
I was so shocked to come back from sick leave this last week to find that Loki had been transferred out to CHO. I know that things can sometimes develope or change as premies grow/age, but this was such a sudden onset that I was left speechless. I am glad to know that the surgery went well and that perhaps the repair surgery(stint?)may be done sooner rather than later. Hopefully this could mean that Loki would be discharged to home or even back to ABSMC more quickly. At any rate, please know that all of our positive energies, thoughts and prayers are directed towards Loki's swift recovery and his parents' continued love, strength and dedication.
While you have had some issues there, please know that CHO is filled with wonderful and caring nurses, doctors and staff. CHO also has specialists and more specialized euipment available there 24/7. Do, however, take the advice that others above have mentioned:speak to the charge nurses, MDs, patient advocates, or whomever it takes to get Loki the care you want for him.
I'll be by to visit soon, if that's alright. Until then...
knuffels to my Loki.
Love,
Nurse Janet

Anonymous said...

Lijn, Jesse and Loki,
given how smoothly things have been going, I hadn't checked the blog for several days. while i am writing this, both shocked and upset, i remember that time and time again I been inspried by Loki's strength. he is a tough little dude and has pulled through some serious stuff and will move beyond this, stronger than ever.


AB is amazing, and i can only begin to imagine how difficult this transition must been. i am so happy to read that you have such wonderful support from your friends at AB. and, even though the staff in certain places can be a but rough, i think they have the best intentions for Loki. however, sometimes, healthcare providers need a reminder... about compassion and beyond. sometimes people become so focused on the values, like the sodium or potassium or O2sat, then they forget that the most important signs are in the face. you should definitely bring up all of your concerns - nurse manager, nurse administrator, VP of nursing, etc. the lack of infection control is simply unacceptable.

loki has shown us time and time again that he is a fighter. he has the best parents in the world and gains strength from you. hang in there.

my thoughts, prayers and love to you.... courtney

Mom said...

Janet, Loki asked when you were going to see him :-) I put on the visitor's list that all Alta Bates staff is welcome any time!! So whenever you want, you can come and hug the little guy!

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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