Cutest Blog

Thursday, February 25, 2010

The Good Stories about Daniel Ordeal

After reading back throught the last couple of months of posts I realized that I only wrote the bare minimum of what was going on with Daniel at the hospital.  The fun stuff is missing.  The stuff that made me smile in the midst of an ordeal.

When the doctor pulled out the first drain (EVD) and Daniel started hemoraging, the doctor was using pressure to stop the bleeding.  Daniel said, in his babytalk angry voice, "Docor (not a typo, the way he actually talks) You hurting me!" (I can't figure out how to spell hurting without the r sound the way he says it.)  He was trying to pull away, which of course the doctor and nurse didn't let him.  Then he said, pointing to the door, "Docor, you get outta heaw!"  I smiled and giggled a little because I did not know he knew that phrase.  The doctor and nurse looked at me puzzled and asked, "What did he say?"  (That helps in explaining how bad his speech can be.) I told them and they all smiled.  I know Daniel was in pain at the time, but he can be so-o-o cute!  After that was over, I got to thinking about where he had learned, "get outta hear!"  I think maybe his big brothers have used it a little too much. lol

He learned a new word at the hospital as well.  "NURSE!"

Daniel hated that there was no QUBO on TV.  That along with PBS Kids are the only stations he watches.  We watched a lot of PBS.  It became a standing joke with everyone that was working with him.  The funniest part was that no one knows what QUBO is.  I told them they need to get it.  The odd thing is, I am sure a few months ago, while we were waiting for one of his MRI's it was on the TV.  That is how I learned about it the first time.  Now it is over the air, which is what we have.  The hospital has cable.  I guess it isn't on the basic cable stations.
Daniel's school teacher was absolutely fabulous during the whole thing.  She, the school nurse (whom I have known and worked with for the 10 years we have lived here), and Daniel's school speech teacher came to visit him in the hospital.  His teacher had the kids make him cards which he laughed and smiled about when he was in the most pain.  When she came to the hospital she brought a poster that kids had made smiley faces for and signed.  I put it up in the window.  He loved it.  Then, after we got home, she had the kids write a persuassive letter (they were learning about these at the time) to the principal to persuade her to let the kids take a field trip to our house to say hi to Daniel.  The principal wrote back asking for details about who would go with them, how far it is, and how many streets they would have to cross.  They wrote back explaining that it is one street and about 0.2 miles from the school.  (We live really close.)  I guess the principal was getting the OK from the school district as well because it was given the go ahead.  I couldn't believe it was OKed.  No one really thought it would happen.  Daniel's teacher told me that the kids were really good when the principle told them they could go but the minute the door closed they errupted in a cheer.  Daniel is beloved.  She said the principal stuck her head back in the room for a minute. 

Daniel was suppose to come back to school the next week so they had to hurry and get permission slips and set it all up for the next day.  Can you believe that they got all the permissions slips back in one day?  They did and the next morning (the only day it wasn't suppose to rain that week) they walked to our house in 45 degree weather.  That may not seem very cold, but we live on the gulf coast and most of us do not have cold weather gear. They rang the doorbell. 

Because I new they were coming, I had Daniel open the door and the kids all held up paper plates they a decorated that spelled out "Daniel we love and miss you," (I think). 


Then they all gave him a hug and had cookies the teacher had made.  They had a couple of parents and teachers along.  It was wonderful for Daniel and amazing to me.  He was really happy and surprised.   They only stayed about 10 minutes, but it brought a lot of cheer to us.

That, along with the stack of decorated hearts we got from the kids at church (there are about 100 of them) really helped us feel loved and cared about.  Having a child go through this is difficult, but when you have friends that care about you, the load is a lot lighter and easier to carry.

John Writes some stories

John is doing better now. We actually got through spelling homework pretty easily. He did have a little trouble last night with a worksheet that had a lot of writing. I have also been making him read with me. He reads one side of the pages of a book and I read the other. He doesn’t like it, but he is putting up with it. He keeps saying he wants to be the “storyteller”. I asked him what that means. He said, “You get a blank piece of paper…” I understood. He wrote a couple of stories last night on the computer. I typed the first one for him. He typed the second one himself. This is how it goes…

SuperJohn

Once upon a time there was a hero named SuperJohn. SuperJohn is a fairy. And that’s why he’s a valentine giver. And so he ran out of arrows.

The end

He insisted on stapling his stories together so it would be a book. This is the second story that he typed himself.

SuperDaniel


Once upon a time, there was a superhero named SuperDaniel. SuperDaniel is a fairy. And that’s why he’s a valentine giver. And so he ran out of arrows.

The end

I hope it gives you the smile it gave me. I expected it would be something like that when he started typing. At least he is trying and it isn’t the three bears. That is what he told me a few days he ago he wanted to write. He was really happy with himself.

Daniel is doing great. He has quit wearing a hat everywhere. He is still a little self conscious about his haircut and scars but he is doing fine. I have almost gotten the glue out of his hair. Once that and the scabs are gone I will even out his hair. I am a little nervous about it for now. The scabs will probably be gone in the next week or so. He doesn’t like it when I wash his hair though. I think he is afraid it will hurt. Maybe it does…I don’t know. He says “ow, ow” when I gently wash his hair. I haven’t been scrubbing. I suppose that will stop soon as well. It isn’t a loud yell, just a quiet complaint.

Thursday, February 18, 2010

February 18, 2010-Daniel went back to school on Tuesday

Daniel went back to school on Tuesday, (Monday was a holiday). Daniel has actually broken his foot way back when…I can’t remember when he first started to complain, sometime in October or November. He has a couple of hairline fractures. They are mostly healed now, but still cause him a little pain and he limps a little going up and down stairs or walking barefoot. Poor baby…Stupid mommy. I knew something was wrong, but I didn’t take it seriously enough because he only complained when he ran at Little Gym. He really does have a high pain tolerance. The Doctor said they wouldn’t have done anything different though and since he is already under doctor’s orders to do only as much stuff at school as he can tolerate, there wasn’t much more to do (except kick myself). Oh, well…I am okay about it now. It actually just tells me how much Daniel needed the second and third tubes in his head. He must have been in a tremendous amount of pain to act the way he did.

As soon as Daniel went back to school, John went off the deep end. He has had a rough week. He did great the whole time Daniel was in the hospital and even when Daniel was home, but the moment he realized Daniel was well enough to go to school…I am not surprised. I knew he would have trouble eventually. It is a typical way for a child to deal with stress. I was just surprised it didn’t happen the minute we got home from the hospital. He’ll be fine soon enough. It usually takes a young child about a month when stuff like this happens. I expect that will be about how long it will take John to fully get his feelings out. I am pretty sure he doesn’t understand what is going on inside of himself and can’t express it. Maybe I will have a talk with him over the next week. One thing is for sure…He needs some mommy time. I am not sure how to give it too him in a way he will like but I am sure I will figure it out. Inspiration is a great thing to have as a mom. You boys have no idea how much inspiration a mom gets in raising her children. It is a daily occurrence, especially with kids like John and Daniel.

February 2, 2010-John did really well while Daniel was at the hospital

Daniel is doing great. He is probably ready to go back to school but we are under orders to keep him home until after the 12th. He is almost back to normal. He doesn’t quite have the total sparkle back and he is a little grumpy, but other than that he is totally fine. He isn’t running everywhere yet, but for some reason, his foot hurts. I think he injured it several weeks back during karate so I will have his pediatrician look into it. I just didn’t want him around sick people at the dr. office yet. We will go next week sometime, when I feel better.

John did really well while Daniel was at the hospital. Now he is being typical John, fighting everything he is made to do. He has had a little set back in potty training as well. That is to be expected when major stress has been in the house. Kids have setbacks. He is really good with Daniel though. He hasn’t hit him at all this week. He isn’t taking out his anger on Daniel at all either. I asked him what he thought about Daniel’s surgery. He said, “What is surgery?” At the time he was half way to the bus so I told him to ask his teachers. He said later that his teachers didn’t know. I figure they didn’t want to be the ones to explain. I got out some paper and tried to show him, but when I got to the part of there was something growing in Daniel’s brain, I started to loose him. I could see it in his eyes. When I said, “The cut his head open…” he collapsed behind the couch and wouldn’t have anything more to do with it. He ran upstairs. It occurred to me a couple of days later that I forgot to tell him they put Daniel to sleep…so I told him that Daniel didn’t feel anything and was asleep like when you have your teeth worked on at the dentist. He just picked his fingers. I’m not sure he even heard me. He does ask Daniel how his “brain surgery” is.

January 28, 2010-We were released yesterday

I’m home! Yeah!  We were released yesterday at about noon. Rob came and picked us up. Daniel grinned all the way home. He was thrilled not only to be coming home but to get all the stickers (from the monitors) off his chest and the IVs out of his hands. He has sticky residue all over his body. It doesn’t wash off and I can’t give him a bath because of all the stitches in his head. They need to stay dry for a while longer. He will be home until at least the 12th when he sees the neurosurgeon again to make sure everything is okay and he is ready to return to school. If it is approved by Katy ISD, we will have a “homebound teacher”. The school Nurse is working on that. I don’t know how long that will take so I picked up some stuff from his teacher yesterday for him to do. He is really only watching PBS and QUBO. I hope I can get him away from TV long enough to do some school work.


Daniel is a little wobbly but coming home has done him a great deal of good. He is up and down a whole bunch instead of just laying in bed. He will be back to his old self soon. He just needs more stamina.

John is the same old same old. He hates homework and school but he wants to be Daniel’s teacher while Daniel has to stay home. I told him that if he wanted to be a teacher he needed to learn to like school.

January 21, 2010-The growth in Daniel's brain is a tumor

Daniel's first surgery went pretty well. The growth in his brain is a tumor not a cyst. I don't remember the name of the kind of it but I do know it is a low grade tumor that has a pretty good chance of not coming back. It is not malignant. We will watch it for the next year or so to see what happens. Same as we have been doing. The doctor was able to get about 2/3 of it out with the equipment he was using and said that it did not have a good blood supply. He said the chances of it remaining the same are pretty good...not 50%...but significant. He also said the survival rate is 98% for 5 and 10 years (meaning at least that long and probably longer). The treatment for it is surgery. We all ready did that. Daniel now has oncologists as well as a neurosurgeon. We will meet with the oncologist in the future. They will also be viewing Daniel's MRIs.

As for this last couple of weeks...like I said, Daniel's surgery went well. Part of brain surgery is that you put an external drain in the head to help with the build up of fluid while the brain swells from the "trauma" caused by messing around with it. That went well until they went to take it out. Daniel hemoraged then. Nobody really knows why, he just did and I was told it was pretty rare for that to happen. He got a really bad headache so he went back to surgery and got another drain. For some reason, probably because Daniel moves a lot, it pulled out of the ventrical (not out of the head) and stopped working. Daniel started having a severe headache. The doctor's were not concerned until the drain started working again. That is how they knew there was a probablem...so after a CT scan Daniel went back into surgery and got the drain put in on the other side of his head because they didn't want to do anymore damage on the right side. The poor child has 5 wholes in his head...the 2 entrance wounds for the scopes and stuff to see what they are doing and the 3 exit wounds for the drains.

The 3rd drain is working really well and has for several days. He has been running a fever, his head still hurts and his eyes and ears as well. He has an outer ear infection (meaning in the canal, not behind the eardrums). He is doing well today and has been slowly getting better over the past week. His last surgery was Sunday night. The physical therapy people and the occupational therapy people were in to see him today. They got him out of bed for the first time since Jan 12 and he walked down the hall. He did really well. I thought he was a lot weaker then he turned out to be.

The earliest we will be going home is next wednesday. He has a CT scan tomarrow and if that looks good they will "start weaning him" off the EVD (drain). That would take a lot to explain but after all he has been through it will take about 5 days and then they will remove it. If everything is going well, he is eating and his digestive track is okay and he is pretty much back to normal, we will go home.

January 14, 2010-stuck in Intesive Care


I'm at the Ronald McDonald House at Texas Children's. Daniel is doing fine. We are stuck in Intesive Care because the hospital is very full and their isn't a place to put him on the tenth floor where they want him to go. It is uncomfortable for me but he is getting great care.
The operation went fine but it was a tumor (solid) instead of cyst (fluid filled). They were able to get about 2/3 of it out so they sent a lot of tissue to be analized. We haven't gotten those result yet.

He is having trouble eating. He has trouble keeping water down so I suppose we will be here until he is able to eat. It is probably one of the medications they are giving him. Unfortunately we don't know exactly why but the nurses say it is pretty common to be a little sick after surgery. He is acting like a sick Daniel. This morning, before breakfeast he was starting to smile and laugh and his eyes had lost the bleary eyed look but once they gave him the medicine after he had drank a juice box, he threw up and hasn't been quite as alert.

I need to get a shower and sleep before Daniel needs me again. He is a little nervous about being alone. He is watching TV right now so he should be okay.

January 7, 2010-John and Daniel loved having Grandma and Grandpa here

I am a little nervous about Daniel’s biopsy on Tuesday. It is at 8 am if you want to say a little prayer. After the surgery I am going to have Eric facebook the results so people (namely family) can find out quickly. I won’t have access to a computer for the couple of days we will be in the hospital. I am assuming they want me to stay as well. I need to call to make sure. Of course I am obsessing about it. I can’t really focus much on anything else. I am not all that uptight about it, I just have hard time thinking about anything else, so I am trying to stay busy and watch a lot of tv/videos to keep my mind busy. I have book club tonight, which I am discussion leader, and I have to get the awards ready for pack meeting next week before we go to the hospital. I didn’t plan the surgery around pack meeting. Oops, that would have been one less thing to stress out about if I had thought about it.
I took Daniel to the allergist because he got really itchy and red after eating some tollhouse refrigerator cookies with pecans in them. The allergist didn’t test him for pecans because he said it was a big enough response already since it was the first time he had ever eaten pecans and he didn’t want that kind of a reaction in the office. We now have an Epi Pen (one of the inject the thigh needle things if you have a huge reaction to an allergen) for him. He needs to not eat any kind of tree nuts. Peanuts are okay though because they grow in the ground. We assumed it was the nuts because we have had tons of other tollhouse cookies and I couldn’t figure out anything else it might be. We had the cookies for Faminy Home Evening Treat and he was itching before he went to bed so it didn’t take long for it to occur.

John has gone back to school happy and easily, miracle of miracles. He is running happily out to the bus. I wonder how he is going to react to Daniel’s surgery. He was really cute one day when Daniel was running a fever. You know how he always says he is sick, well, he was telling me he was sick but he wasn’t and Daniel obviously was. I took John’s temperature and it was normal so I showed him and he was okay with it. Then I took Daniel’s temperature and it was 102 (he had strep) and showed it to John. He said, “Whose is that?” I said, “Daniel’s”. Daniel was laying on the couch with his head on the arm under a blanket. John leaned over and patted his head and said, “I’m so sorry you are sick.” Then, after getting dressed, he climbed under the blanket next to Daniel and cuddled with him to help him feel better. Daniel was pleased with the attention. I told John he didn’t really want to be that close to Daniel when he was sick, but John stayed until the bus came. (It was only for a couple of minutes.) John showed compassion and empathy. That is a big deal!

Both John and Daniel loved having Grandma and Grandpa here. My dad was really good with John. He and John became pretty good buds. When we went to Battleship Texas they hung out together. My dad gave John rides in his mobility cart. I had a little issue when we went there. I was keeping tabs on John while your Dad and Daniel climbed all over the place and Mark was exploring on his own. John decided he was done with the ship, but I only knew where my dad and John were. They just decided to leave. No one else knew where they were going. My dad hasn’t got a very good memory right now and John isn’t exactly someone you leave alone with an old man with memory problems. I had to run back to the ship from the turnstile and luckily, everyone was right there on deck. We headed back down the ramp to the gift shop and my dad and John were okay, but they sure gave me a fright. I was stuck at the turnstile going, I need to tell someone where we are but I can’t leave my dad and John alone. In the end, I hoped that while my dad picked up something at the gift shop they would be okay if I hurried. Phew! A moment of panic but everything was fine. I guess I get a little overprotective.