Yesterday we had the pickline for the IV inserted.
We had a 1:30 appointment. They let us in pretty quickly and let us use the oxygen and electricity while we wait.
Finally everything was ready and it was time to go to the operating room. Due to the radiation, I wasn't allowed in, but my husband had to help with lifting Hajime from the wheelchair to the bed so he went in.
As they did before at his surgery, they sterilized his whole arm and the doctor put the catheter in.
Can you see how the narrow tip is going in toward his shoulder?
After that, they pushed it in even further.
I was surprised at how deeply they inserted it.
When it was over, Hajime did not look as if he was having a hard time, but I think it was painful. I feel sorry for him because when he is in pain, the only thing he can do is shed tears.
The homeschool teacher came right after we got home and started reading a book to him, but Hajime was half-asleep. I felt bad for the teacher.
Hajime seemed tired after that so he slept for awhile. We felt relieved too. We had been very worried about today.
Mary will be coming this afternoon and I think she will administer the IV medication.
I hope his infection will clear up soon.
(translated by MS)
It has already been a week since Grandma arrived.
Our house has been filled with cheerful sounds every day. I hope that Hajime is feeling happy just listening to everyone laughing.
But I am worried. His nose is very runny, he is producing a lot of saliva, and his breathing is faster. And, as usual, the odor is very bad.
I think this is because of his infection.
Hajime has secretions coming out of every opening, and I feel so sorry for him.
He needs to have Botox, but his doctor is sick so he can't do it yet. And when I think of how the radiation treatment did not help at all, I start to wonder why they had to put him through all that discomfort. I think the only thing that is helping him now is the liquid medicine.
Well, they will do the pickline day after tomorrow, so I think they will give him the IV the following day. We can only wait.
Dad will already be coming home from Japan tomorrow.
I can finally get some relief from my 24-hour nursing care.
I look like I'm OK, but deep down I am tired.
Taking care of Hajime, taking care of Mint (he follows me everywhere), my children, my guests...I did a pretty good job!
(translated by MS)
Hajime has been pretty upbeat since Grandma and Auntie arrived.
It looks like he has been able to open and close his eyes well, so that's good.
I think he is happy that they were able to come.
Dad went to Japan on the 23rd.
His main purpose was to renew his license, but we also thought it would be good for him to take a little break away from home.
After Hajime was hospitalized, it was very hard for him to split his time between the hospital and work. I think he had reached his limit with the stress because he had to make adjustments at work while handling other things.
He had to do a lot of paperwork, which he dislikes, and he was getting more and more exhausted.
So I hope that on this trip back to Japan, he will be able to rest even a little bit and come back feeling refreshed.
The Medi-Cal nurses will start coming next Thursday. They will come during the day from 10:00 am to 6:00 pm, Monday through Friday, and then at night from 10:00 pm to 6:00 am, Sunday through Thursday. We will start with this schedule.
We will slowly figure out the schedule for the nurses regarding who will cover the other days and nights. I am worried about Hajime having to start from zero in communicating with new nurses. I pray that somehow everything will work out well.
We also have a lot of things planned next week.
Dad will be coming home on the 29th, Hajime will get the pickline on the 30th, and the nurse will start on the 31st.
I hope that everything will go well according to God's plan.
(translated by MS)
Lauren and Robert came to visit again today.
They brought a sun balloon, sunny like Hajime!
Lauren and Robert have really been such a great support for us and they have helped us so much. For our family, they are a treasure. We cannot tell you how much they have encouraged us... We experienced their great kindness again today, and we felt rejuvenated.
Time for a picture with everyone!
They told us to let them know if anything happens, and we are so grateful.
Thank you again for today!
(translated by MS)
We had been waiting to see Grandma and Auntie for a long time, and they finally came back to see Hajime. For him, this was the best present.
I want to enjoy this visit with them again.
I asked our caretaker Darla to see Hajime and went to pick them up at the airport around 2:00.
Maybe because it was the beginning of the busy season, but there were many people there.
There was also a long line at customs, so it took a long time (to get through).
When they came home, our homeschool teacher was here, so Grandma and Auntie could only see Hajime's face, but afterwards, they had an emotional meeting together.
Hajime still seems to be having a hard time with his secretions. The secretions often come out of his nose, and the odor has become stronger.
When I see his secretions coming out nonstop, I feel so sorry for him because it looks like he is suffering so much. He hasn't been able to do Botox treatments because the doctor has been out sick so he could not have Botox at the same time we went to the hospital for the "pickline". It looks like we will do Botox again in June.
(translated by MS)
Within few days, Hajime’s grandma will visit from Japan.
They will stay from May 21st to June 11th. Hajime is so much looking forward.
One the other hand, Hajime’s dad will temporary return to Japan on Wednesday.
Last time my husband was out only for 2 nights but this time will be a weeklong. I’m a bit worry to handle everything all by myself. I need to take care Hajime day and night so please pray for me that I can make it through.
This time, I’m hoping that my mom can watch my kids and do some housework so that I can concentrate to Hajime’s care.
Last night, we interviewed a nurse supposedly work for a night shift through Medi-cal. We already met a day shift nurse so hopefully we can start the care pretty soon. It has been for a while since Medical approved and if we cannot start within 6 month, which means by next month, we have to start over from the applications. Since we have been denied Medical before, I think an agency is a bit skeptical to start the service.
A feeling of urgency welled up in me...
(translated by HM)
Today we talked about Hajime’s tooth with Mary and doctor.
They were concerned about his loose tooth but it will not cover through our health insurance so if we want to check up we have to find a dentist by ourselves.
So, I have a request.
Do any body know any dentist who able to take a look Hajime?
Or in other word, is there any dentist who can visit home?
We just need to have some idea how Hajime tooth conditions are?
I think it getting worse lately so hopefully we can find soon.
Thank you so much!
(translated by HM)
Today we had so many visitor. It is strange that some how visitor coincidentally come all at once.
At morning, Ashley and Mike came.
They are Youth counselor and they even visit Hajime when he was at the hospital.
They read a part of Samuel in the Bible to Hajime. Ashley will move out a town soon. We will miss her.
After they left, my friends Mariko and Noriko came. They always pray for a family and helping us. It also helps me because they speak Japanese. I can talk about my worries in Japanese. It will truly regain my energy having such friends. Thanks!
Tommy also came to see Hajime.
I always thinking to take a photo and finally I did. He visits Hajime very often and watches TV together. He is so kind and we all love him.
When Hajime was still doing fine, they went out together to the AnimeExpo, to the Little Tokyo and etc.
After Tommy’s visit, Hajime had a bed bath and then doctor and Mary visit.
With doctor, we discussed about his tooth, secretions and Botox.
I was happy to have such a nice and intense day.
This will make Hajime a wake at the daytime too.
(translated by HM)
Today, I was looking Hajime’s photos. In there, he always has a nice smile.
His warmth sprit is pouring out from his photos.
My tears come out seeing such a photo.
I strongly believe as his mom… “He will get well!”
(translated by HM)
I’m overwhelmed with all of a sudden his secretions increased a lot past two days. It’s coming out from his mouth, from his track and even from his nose.
What is going on?
Since it was so many from his nose, I plugged with tissues during daytime but at the nighttime I took off. Then, by next morning so many secretions were coming out from his nose. Color is greenish and odor is not so good. Secretions from his track are also greenish and thick too. His pillow even gets wet.
We contact Mary and decide to restart one of a medication to suppress secretions. At the same time, we will put his head higher and use suction catheter to suction from his nose.
Hajime seems to be very uncomfortable. Maybe we have to have a Botox again.
(translated by HM)
Hajime’s teeth are getting misaligned. I’m assuming that his bed is raised about 30 degree and his head weight all goes into his teeth which making his teeth misaligned. There is a gap between lower and upper teeth.
It seems that it getting worse so we need to do something but we can’t bring Hajime to dentist. I have no idea what to do.
Does anybody know what to do in case like our situation?
(translated by HM)
This week was a very full week.
It started with Youth Sunday...
On Tuesday, we had a meeting with Hajime's support team for the first time in a year. Allison, Marilynne, Paul, Lydia, and Joan came. We talked about changes in Hajime's condition, developments in his Medi-cal situation, and any problems we might be having.
Just as before, the team supported us and we are overhwhelmed with gratitude towards them. Thank you so very much, everyone.
On Wednesday, Ashley came to visit.
Ashley was the Youth Ministry counselor, but she will be moving away to Santa Cruz where her parents live.
She has visited us often since the time Hajime was hospitalized. We will miss her.
That night, we thought Mint was licking Hajime's feet, but so after he bit him. It started to bleed and Hajime was in pain.
Thursday was Mary's day to visit.
First, we had her check Hajime's feet. She told us to keep an eye on the area where Mint had bitten Hajime. She said that if it became redder and spread, we should contact her immediately.
She thought that his infection looked better than the last time, so the problem may be clearing up.
But Hajime does need to have a pick-line, so I asked how long he would have to keep it, and I was shocked! He has to have it for months and months. It seems they're thinking in terms of years.
We had been thinking months and that is why my husband even thought maybe Hajime doesn't have to have it at all. We were really surprised to hear that it would take months and months.
Of course, if Hajime's condition becomes progressively worse, he will have to be hospitalized.
It looks like his bedsores have gotten much better. I am so glad!
And, I have to cut his nails. They've gotten very long, but I keep remembering about the last time, and I get scared.
Mary told me that if his nails are hard, I should soak his hands and feet in a basin of warm water to soften them a little and then cut them.
Next week, Hajime's grandmother will be coming from Japan.
Hajime is beside himself with anticipation.
(translated by MS)
The emotional Youth Sunday is over now, and I'm catching my breath.
Normally, Hajime would have been very reluctant to go out, but he had been looking forward to it very much.
He was so happy to be included with his friends who are graduating.
And he was very touched by the planting of his tree.
I noticed it when I was cleaning his trache, but the area around the opening was red.
We had been putting medicine on this area because of the redness, but I did not know that it had become this red.
Hajime has been having a lot of secretions, so this area is always wet. That is why it sometimes bleeds, and I have to change the gauze at least twice a day.
As for his infection, it looks like his appointment for the pick-line will be on the 30th. It would be great if he is completely better by then, but the reality is that it probably won't be better.
(translated by MS)
After the service, we had the dedication of Hajime's tree.
Hajime's friend Curt had planted Hajime's tree in the inner garden of the church.
It's a maple tree.
Alison gave a speech and the dedication was successful. This was a wonderful time and I will treasure it in my heart forever.
Hajime was crying.
I am grateful for this day.
I extend my heartfelt thanks to all of you who planned and put together this wonderful day. Thank you so much.
(Translated by MS)
Yesterday, we attended the annual Youth Sunday service at our church. On this day, the students who are graduating from high school give speeches and share memories.
Hajime would have been graduating this year.
But I think he was very happy just to be able to participate with everyone at this service.
He was looking forward to it from the day before...
On the day of the service, he set off for church in high spirits wearing a T-shirt that his father had bought for him before as a souvenir.
We had decided to request a wheelchair taxi for him, and Marilynne made all the arrangements for us. I think taxi did a good service.
When we entered the church, I somehow felt a bit relieved.
I hadn't been attending church lately, and I felt guilty and bad about it. (Whenever I go) I start to remember the times when Hajime was healthy, and it hurts so much. But now I'm thinking about going back to church slowly, little by little. To everyone at church, I apologize.
We put Hajime in the front so he could see everything.
The service was about to begin.
It was a moving time.
There were 15 graduates in all this year, many more than usual. Ryo gave Hajime's speech in his place.
Here is a video of Ryo's speech.
At the end of Ryo's speech, whole congrigation give us a standing ovation.
I had a hard time to keep record this without crying.
Thank you so much everyone.
(translated by MS)
Mary came yesterday and talked about his infection. It turned out that his infection did not get fully recovered and there is some risk to have a complication later. Because of that, we decide to place a pick-line.
Procedure will take place without putting into sleep so I’m planning to give him a pain medication before we leave a house.
We haven’t got a date yet so we don’t know when but I told Hajime that we decide to have a pick-line. Although, I could not able to tell him it is a long line. There is a risk that infection may cause pneumonia so I want to handle this issue carefully.
Lately Hajime cannot sleep well. Because of that we decide to give him one of a medication at morning to make him relax. I’m hoping there is a moment he could relax and sleep well.
Hajime himself is doing pretty well. He some time cannot open his eyes but when he can, probably because he had a haircut, he looks so nice.
He sometime asks for a Mint so I put Mint on his bed and Hajime enjoy watch him. It is so nice to see and makes me smile.
Thank you, Mint.
(translated by HM)
Hajime’s IV placement has been canceled because it was not easy to hold the radiology department doctor. Mary will come tomorrow so we will discuss about this matter with her.
Hajime was a bit scared to have an IV so maybe it was a good thing. His infection seems to getting better but still a secretion is greenish and has a bit odor. This kind of problem might become serious so we have to be really careful.
By the way, my friend Kumiko came and cut Hajime’s hair. How do you think? Isn’t it nice and short?
When I took this photo, Hajime was awake but he could not able to open his eyes so looks like he was sleeping. Actually he was trying really hard to open.
Least time, his backside of his hair was a bit long so I requested to cut it shorter. I was thinking to take a photo together with Hajime and Kumiko but I completely forgot it. Kumiko, let take a photo next time!
(translated by HM)
It was decided that Hajime should have the IV for his infection done immediately, so we will go the hospital tomorrow and place the IV pick-line.
Hajime's veins are very narrow, so it would be extremely difficult to insert a long catheter. That's why they've decided to do the procedure using X-rays from radiology.
The catheter that they need to insert into Hajime's arm is very long, so when I think about how painful it will be, I feel so sorry for Hajime that I haven't been able to tell him that they need to do this. All I told him was that he needed to go to the hospital for the IV, but he was crying and dreading it.
Poor Hajime is suffering every day, unable to move by himself or talk to anyone, and to think that he has to undergo more pain makes me so truly sad for him and I start to cry.
I pray that God will prevent Hajime from feeling the pain...
(Translated by MS)
