Critical condition

Today Hajime is less alert and even we talked to him, he fall back into sleep.
His blood pressure is all day low something like 70/40. Doctor start to give IV fluid for this and by the end of the day, it comes back to nominal values.

During this relatively short hospital stay, Hajime became very critical condition already for two times. 

For the first time, it happened during the daytime.
While hospital staffs were turning Hajime to help him clean, my husband notice that his breathing tidal volume was decreasing. My husband told to the staff to put back Hajime in regular position but they ignored him and kept working. Soon after, Hajime’s oxygen level starts to drop rapidly and become around 40%. Normally, it should be around 100% so 40% is very dangerous condition. Because monitoring system start to alert every body, there were many nurses and respiratory therapist (RT) comes into our room. After for a while of struggle, switching from the ventilator to the Ambu bag made to recover his breathing.

For the second time, it happed during the nighttime.
Right after we got back to our home around midnight, we got a call from Hajime’s night shift nurse. Hajime’s heart rate goes up to 160. This is not usual for him and I sensed bad so I asked my husband to head back to the hospital. I have to stay at home cause we could not able to leave our kids alone.
When my husband got back in Hajime’s room, his heart rate was even higher around 209. There were a number of doctors and nurses were working on to make his heart rate goes down. Four staffs were standing on his each limb trying to have IV line to give him a medication. Because with his swelled limb on top of very thin veins he have, they could not get a good IV line even with several pokes.

I can only imagine how hard time Hajime gone through. It must hurt him a lot because of poking. His heart must hurt too.
I’ve ask one of our friend to keep our daughter and myself and Hajime’s brother Ryo head to the hospital around 1am in the morning.
When I get to the hospital, the medication seems to kick in and all the vital were within nominal.
This time, I was truly feared that he might not able to make it but I am so proud of his fighting spirit and his strength. 

Because of those incidents lately experiencing, I am so scared. 
I know God saved Hajime.
I know so many giving us positive thoughts and prayers.
I’m still have so many worry in my mind but I will be positive and keep praying so that we can go home all together. 


(translated by HM)

Hajime is in hospital

Hajime is been hospital since last Friday (Aug 23). Friday was our regular Botox appointment so we rent a van in morning. Botox injection just went find and we head to ER for the G-tube replacement. We kept waiting for few hours till procedure starts. It was around 4pm. Doctor told us that the procedure goanna be just a few minute so we just step out the room and wait in front of the door. The procedure turned out a bit longer that we thought and then doctor came out to explain what happen. Doctor told us that the bumper at the end of G-tube to make it stop coming out snapped out and fall into his stomach.
They decide to use endoscopy to grab it out the bumper. First they try to use the adult endoscopy but it did not go through Hajime’s throat so they tried pediatric one but that even didn’t worked. It turned out that Hajime’s throat have closed since he have not used for a long time. Because they struggled using the endoscopy, a half hour procedure turned into more than one and a half hour with explanation of “we give up”. So the next plan was to hospitalize Hajime and use medicine for loosening the bowels.

We kept waiting for a long time at the ER room till finally transfers to the hospital bed. It was around 3am. Medications start soon after.

No bowels movement on Saturday. Based on X-ray, bumper did not moved at all. Since Saturday night his bowels movement start but so far we don't see anything.
On Monday, finally the bumper moved into small intestine based on the X-ray. It’s getting close.
I’m very worry that having so often of diarrhea must give so much stress on Hajime. Hajime is been in a good sprite as always.
I’m hoping that the thing comes out and we can go home soon.


(translated by HM)

Last visit of Mary

Today was last day of Mary’s visit.
She had been giving a great care to Hajime for two years and also supported us too. She was kind, thoughtful and dependable register nurse.
I am so sad.

Hajime is having a care through Kaiser Palliative care. Mary going to work for the hospice team so she has to leave our case.
We hope her best in her feature.

Thank you so much, Mary!

(translated by HM)

Message from Naoko Yamazaki (Astronaut)

It was a bit while ago but we had a nice thing. We got a message from Naoko Yamazaki who is an astronaut.

One of our friends Itsuko who help us contact to Kimiko Fujita who has connection to Naoko Yamazaki and requested for a message.
Few weeks later, Kimiko contact us and one of her friend name Oda-san now has a message from Naoko Yamazaki. 
Few days later, Oda-san visits our house with her message to use.



Thank you so much.
Hajime was also very happy.


(translated by HM)

Kari Wahlgren (Voice actress) visit

On last Wednesday, Kari Wahlgren visits our house!

She was very kind and friendly all the time and kept talking to Hajime.

Kari played a queen voice on the movie “Tangle”. She is also Tigress voice on TV version of “Kung Fu Panda”. 
She is also on some TV show as an actress. She is a real celebrity and very big deal whoever know about Amines.



With Hajime and his friends.

With Hajime and our family.



Hajime was so excited. He even got a kiss to his forehead,,, 
Thank you so much, Kari!


(translated by HM)