The Worst Day

Today is the worst day so far this year...



Ashley and I will be at the hospital early this morning for her annual MRI under anesthesia. Ashley has three brain tumors. We've been watching them for four years now. At first, the MRIs were every six months. Then, because the doctor was seeing no change, we went to an annual schedule. And, if today's MRI continues to show no negative change in the tumors, I will have to make the decision whether or not I want to go to an 18 month schedule.



The MRIs are so very, very hard for Ashley and for me. She gets extremely anxious the minute we pull into the hospital parking lot. And then it goes downhill from there....I'm not going to go into the details because I don't want to think about them right now.



I just want it all to be over. I want to see Ashley's eyes open and a smile touch her lips. I want the tumors to have magically disappeared.



Your thoughts and prayers would be most welcome today...

Zzzzzzzzzz

Someone remind me what it feels like to sleep through an entire night...

I haven't done that for almost 14 years now. I adopted Ashley on her second birthday, and she will very soon be 16 years old. That is the explanation for the 14 years of interrupted sleep.

I define a good night as one when Ash is only up 2-3 times. A bad night finds her up every hour. I'm not sure of all the reasons that she doesn't sleep well, but her seizures probably play a role as does the fact that she is blind. And some nights, it seems like she gets up just so I will come to her room for a visit.

Some of the time I can handle the erratic sleep schedule, and other times, it wears me down to the depths of exhaustion. I'm in deep right now...

So, when you go to bed tonight, if you say prayers, ask that God gives me the strength to weather the lack of sleep. I would ask that you pray that Ashley sleep through the night, but I know that if she ever did, I would still get up just to make sure she is still breathing!

Hospital - Day 8

Yea - yea - yea! The doctors said Ronnie might be able to come home on Wednesday!!

His NG tube has been removed, and he is MUCH happier. He has been allowed a clear liquid diet, but suprisingly, he hasn't wanted much to eat or drink. Does a person's system start to shut down after about 10 days and just not desire to eat or drink? He needs to pick up the pace a little so we actually can go home Wednesday.

He really is back to his old happy self now. He and Chip were teasing like typical brothers, and he was laughing a lot with the nurses. The doctors say everything is looking really good, and even though we will be going home with three tubes still in place, and I will have to learn how to flush and drain some attached bags, I don't care. I just want him home!

I took a couple of pictures today but they didn't turn out. I tried taking them with a new phone, and I apparently haven't figured out how to get a good picture yet. So today I am just going with my stack of happiness blocks!

Hospital - Days 5, 6 and 7

Recovery is progressing - probably not as quickly as Ronnie would want, but progressing nonetheless.

Friday found my brave boy down in the dumps because he was hungry, thirsty and wanted the tube out of his nose. The doctors again said 'No.' Friday found me a little happier because I finally won the interpreter battle. I was informed Friday morning that interpreters would now be provided from 8am until 9pm.

Saturday was hectic because Ronnie's roommate was going on, and the roommate's parent was not understanding at all what would need to be done at home for her son. I was really glad that Ronnie couldn't hear the language that was flying because roommate's mom didn't want him to leave the hospital. She said she couldn't afford the formula, change her son's NG tube, couldn't work the feeding pump, etc. etc. She was quite beligerent. All I wanted to do was the bring the boy home with me.

Saturday night, Ronnie and I watched and ICarly marathon. His belly laugh was starting to come back, and I really enjoyed the time we spent together. Just look at that smile! That's my Ronnie!!



Unfortunately on Sunday, I had no one to stay with Ashley, so I couldn't go to the hospital. Both Chip and Corey spent the day with Ronnie, and both said that they felt he was back to his normal happy self - even the full-on belly laughs!

Rumor has it that Ronnie's NG tube can be removed tomorrow and he can start on clear liquids. Since he hasn't had anything to eat or drink since a week ago Saturday, I know he will be thrilled.

I really, really hoping that he may be able to come home mid-week. Keep your fingers crossed for us!

Hospital - Day 4

Thursday morning brought a brightness to Ronnie's eyes that I hadn't seen in a while. He was looking much better, and I began to question when he could move out of intensive care.

He still can't eat or drink, and that is really starting to bother him. His digestive system hasn't quite 'woken up' yet, and until it does, the only thing he gets is the IV. He also has a tube in his nose leading to his stomach. That helps him to not get sick, because vomiting would not be a good thing considering the long incision on his belly.

Early in the afternoon, he actually got up to sit in his wheelchair. The nurses had to lift him, and that part was pretty painful, but he really liked being out of the bed. Unfortunately, soon after that, the doctors came to change his bandages, and that was also really painful.



Cranky was the word of the afternoon, and seeing all the doctors again and hearing that the nose tube couldn't yet be removed, was just the icing on the bad cake. So Chip, Corey and I called it a night so Ronnie could go to sleep. He was falling asleep before we had picked up our things to leave.

If he could have slept all night, that would have been wonderful. But at 2am, the nurse called to tell me they were moving Ronnie from the ICU to the regular pediatric floor. I'm glad he's out of ICU, but 2am in the morning??? Really, it couldn't have waited a couple more hours...???

Hospital - Day 3

Ronnie looked so much better this morning. The groggy eyes from the night after surgery were gone, and his smile was just a tiny bit bigger. He kept telling all of us to not laugh though because his belly hurts a lot when he laughs.

Chip had brought a bunch of DVDs, including his favorite, the Cosby Show. But Ronnie said he couldn't watch that because it would make him laugh.

He still can't eat or drink anything, and he keeps saying he is so thirsty. The nurse will put one of those little sponge lollipop things soaked in water in his mouth, and he almost sucks the color out of the sponge trying to get the water! The doctors have said that as soon as his bowels 'wake up', he can start to drink.

So our mission this afternoon was to find the sign for 'fart'. Surprisingly, none of us knew it. If only Ashley had been there, she probably could have told us what it was :)

We finally found the sign, told Ronnie he had to start *insert fart sign here* and then he could start drinking. I'll bet it's going to be a fun night!

He's running a bit of a fever, but the doctors aren't too worried about that. And, his blood pressure is high but the doctors decided to give him some IV meds for that.

So, all in all, not too bad a day. With a little luck, he will be moved out of ICU tomorrow into the PCU (Progressive Care Unit), and we can start the countdown to coming home.

Hospital - Day 2

Long, long, long day today.

Ronnie was taken back to surgery at 7am...and didn't arrive to the ICU until 7:30 pm.

He looked pretty good considering..He squeezed my hand really tightly and I got a couple of half smiles out of him. He will be in the ICU for a couple of days, and then will be moved back to the regular hospital floor for a stay of about 10 days.

I'm already sick of the hospital food and the chairs are extremely uncomfortable in the rooms. But none of that matters when I see that dear boy smile!

Gotta get some sleep...

Hospital - Day 1

I was pleasantly surprised with many things at the hospital today. My experiences in the past at this huge teaching hospital have not always been pleasant. For example, when Ashley got her G-tube 13 years ago, I ended up in the hospital administrator's office threatening to go to the press if things weren't changed.

But today, I didn't complain much at all :)

We arrived just after 8am, and I was expecting a long wait to get through admissions and actually arrive at a room. The wait was only about 10 minutes and within 15 minutes, we had a room.

The room was a semi-private, but I asked for a private one considering the surgery prep procedures Ronnie would have to endure. Surprisingly, within 10 minutes, we were in a private room.

The nurses were wonderful even though they did forget a few little things. But, because there are so many little things with Ronnie, I understand, and I really didn't mind reminding the nurses several times.

As with any teaching hospital, there were many doctor visits, and although most of them had a poor bedside manner, I hope my response to them help to 'educate'. As I'm sure many of you parents of children with complex medical needs have experienced, the doctors really don't always know everything and do need a little education now and then!

It wasn't long after our arrival before Ronnie was hooked up to his GoLightly drip, and as anyone who has ever had that stuff, 'GoLightly' is definitely not the correct descriptive term.

We had a few issues with interpreters and the DeafTalk device, but thankfully Ronnie's interpreter today was someone who has worked with our family before, and she was as strong an advocate as I. Because the staff was unable to get DeafTalk hooked up and working, Ronnie will have round-the-clock interpreters until they do!!

The night is going to be a long one for my sweet boy because he has a second gallon of GoLightly to work his way through, but I am praying for at least some sleep for him - and happy dreams to go along with the sleep.

Since surgery is an all day affair tomorrow (he goes in at 6:30 am and ends up in the ICU around 7pm), I may not be able to post tomorrow. But please keep my dear son in your thoughts and prayers.

And for everyone who is offering support, THANK YOU! That means you - Amy, Sara, Mary, Cindy, Jane, Lymmette and Mia.

It's Time

Today Ronnie gets admitted to the hospital. Surgery is tomorrow, but prep is today...and he isn't going to like the prep.

I really hope things go smoothly, and that he understands that there are no choices - the surgery must happen.

My posting schedule this week may be erratic, but please keep my dear son in your thoughts and prayers.

Dear God, Ashley and I Need You

Tonight I am anxious and worried because tomorrow Ashley has an MRI under anesthesia. The MRI is being done to check the status of the three brain tumors that were identified two years ago.

When the tumors were first identified, Ashley had MRIs every 4-6 months. But, because they never seemed to be growing or changing, the neurosurgeon suggested going to one year intervals. This has been an extremely long year.

I've not noticed anything that would make me think the tumors were growing or doing anything different than they have the last two years. Both her neurosurgeon and neurologist do not feel the tumors are the source of Ashley's seizures. But still...there are things in my baby's brain that shouldn't be there.

I probably won't get a status report from the MRI until we see the doctor in two weeks (unless, of course, the person who reads the MRI thinks otherwise). No news will be good new, right??

Please keep my sweet daughter in your prayers tomorrow. General anesthesia scares me. Brain tumors scare me. My fears will not subside until I have her home with me tomorrow afternoon.

Just Not Fair

Now I understand why people are reluctant to go to the doctor. If you don't go, you can't hear bad news. It's a wonderful form of denial.

Ronnie had his second visit with his urologist this afternoon. The news is not good, and surgery has been suggested - tough surgery - stay in the hospital at least 10 days surgery.

My stomach has been in knots since hearing the news. I can't eat, and I probably won't be able to sleep.

I need to process everything I heard today, and then I will share more with you all. Until then, I sure would appreciate your good thoughts and your prayers.

Prayers Desperately Needed

One of my favorite bloggers, Attila the Mom, needs your prayers desperately. Attila's oldest son, 20-something Big Kid, is teetering on the edge of life and death due to complications from H1N1. Big Kid was healthy - no underlying health conditions. Everyone thought he just had a cold, but in less than 24 hours, the unimaginable happened.

Please take a few moments to read her posts about this, and then please, please keep Big Kid in your prayers.

There are many reasons why I am so desperate to get the H1N1 vaccine for my children, but no reason more compelling than Attila's story..

Hold on, Attila, and know that you and Big Kid are in my thoughts and prayers constantly.

Today I am thankful that Big Kid is fighting hard. Damn you, H1N1