Here a note from Mom. Here at UC we are allowed to have our laptops next to the bed and check the Internet. Although I mainly want to sit with our little guy and hold his little hand, I will take a short break and put up a little note.
Loki is doing much better today than yesterday and that is such a relief. There are no major differences with his medical situation from Dad's last post, but he just seems to feel much better. He just spent an hour awake, looking around, checking out his new home. He was very calm without being lethargic, and awake without being agitated. That is a good combo. He has not had his 2:00 PM dose of morphine, and since it is 6:30 this means he is starting to cure from his surgery.
I feel so much better now that I am able to be with Loki. I cannot hold him, and even changing a diaper is a little bit more tricky again with urine coming out of a variety of openings. But just holding his little hands, stroking his head and his little toes and talking or singing to him, feels wonderful.
Our experience here at UC has been very good thus far. The atmosphere is less urgent and hectic than CHO, and although this may sound silly, the lighting is much more cozy, which really makes a difference in the ambiance. Of course you all know we are hanging out at the Hospital for the ambiance :-) In addition, nurses work 12 hour shifts, so Loki only sees 2 nurses a day instead of 3. The nurses are absolutely excellent and somehow very quickly figure out how our little guy does his things. None of his rare tubes and openings are rare to them. I am impressed, to say the least. Tomorrow I will be able to touch base with the social worker here and see if we can prevent this last transfer and prepare Loki to come home from UC. It depends on the insurance of course, but transfers are very expensive, so you would think they may be happier. We will miss some of our great nurses at CHO, but one less change, and a calmer hospital would be great . Also, having the urologists here 24/7 simply feels more comfortable.
I think Loki knows all of you are thinking about him and sending him prayers and love. We certainly feel all the support and we are incredibly grateful for this.
Simon’s 2019 Funnies
4 years ago
10 comments:
Sounds like he is heading in the right direction. I am very happy that he is resting so well. I'm sure it is because he knows his mommy is there with him. give him a pat on the bottom from nana.
I don't think the lighting is just about "ambience"--the nurses in the PICU at Children's told me that there is such a thing as ICU PSYCHOSIS which comes from the lights, noise, etc. It amazes me that every effort isn't routinely made to deal with sensory issues--since you and I both know ever so well how big these issues are for young children. Sigh. Very relieved Loki is doing better. Big hug.
Cheryl
Soooo relieved that he is doing better. I cross my fingers that he will not be transferred anymore and will recover quickly.
It's not just about transfer or costs, it makes a huge difference how the environment is set up. (We had to leave a kids' concert at Ashkenaz this afternoon because Anna still can't handle noise and crowds! - a result of overstimulation I believe.)
I am happy for you that you can touch and feel and smell him again, and see how he reacts to you.
I am sending some virtual hugs and kisses for Loki.
Mascha
These are even more indications Loki is douing his recovery. We're so happy te hear this. We do appreciate it soooooo very much that you mom and dad take the time to keep us informed of all developments by writing in the blog regularly. Hats off!!!!
Oma Heleen and opa Frits
lieve ouders, geweldig ik kan nu alles lezen, wat fijn dat jullie dit geregeld hebben, vanavond lees ik nog de vorige dagen, het was fijn Heleen gisteren te spreken, sterkte fijn dat het weer wat de goede kant opgaat, ik ga nu snel werken, lieve groet en kracht van Greet
Wouw, the translation is cool! Although I don't need to use it, it is so funny to read it. I think my Englisch is somewhat the same as that dutch translation, haha! I hope Loki can stay at UC and then....come home! It is amazing how fast he recovers each time they do something with him. His intention to be here, with mom and dad, in this world is so big. One day we, from all over the world, can hug him, talk with him and be proud of him surviving this period in his life. Kom op lieve Loki!
Music and voices are food for life that's my experience.
When I was one and a half years old, I was separated from my parents for a certain reason
and for quite a long time.
During that time I lived with my foster-parents and when I was much older, their voices meant a lot to me.
The sound of their voices gave me a secure feeling,
so it’s to me so clear what your voice and the music meant for Loki.
I’m so glad he’s slowly getting better, we all waited for that message!!
What a relief for you Mom and Dad, keep hope.
For all of us, as for you both, every day is Loki day!!
Keep going Loki!! You do so well, with the most caring parents of the world.
Love and hugs, Karin ( Amstterdam)
Lieve mom en dad,
I'm happy to hear that Loki's recovery is going forth and forth.
I rea the dutch translation, is pretty good. I very much liked the title and subtitle in dutch. The title is "de hemel van Loki". Laten we daar dan maar voor gaan, dat Loki zijn eigen hemel op aarde hier gaat maken, fijn bij papa en mama thuis!
Kus Maaike
Good to read Loki is doing better! It's amazing how he recovers. I knew he was in a shock/crazy spin after the surgery when I read all those worried posts. Even though he looks so good I think he still needs to recover a lot for Chuggie (spelling?) Cheeze, don't you think mom? I wish I could give him a REAL little hug, instead many virtual hugs to all you three, Fransje.
i was out of the country for a week and unable to check the blog... what a cascade of events over the past week. hopefully you and jesse are hanging in there. i cannot tell you how much relief i feel w/ the last post though. i have been thinking of you all daily and continue to send my love and well wishes. loki is a fighter, a strong little guy. he's in a good place, both literally and figuratively, and will pull through this, as he has several other challenges. keeping you, loki and jesse in my thoughts... much love, courtney
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