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...

Get The Story Straight

It's been a crazy few days for Ronnie. Ronnie has a friend (a girl) - I'll call her Friend Girl for this post - who is rather troubled. Friend Girl is in a foster situation although she is 18 years old. I know almost nothing about her except that she is Deaf, and she was placed in a therapeutic foster home in Virginia from Texas.

Friend Girl has attended a couple of the same events as Ronnie. She also came to Ronnie's birthday party. Ronnie and Friend Girl are in school together, and both are fluent signers.

The middle of last week, Ronnie got some desperate text messages from Friend Girl saying she hated her foster mom and had run away. She said she wanted me to be her mom, and Ronnie, bless his heart, said he would be happy to share me with her.

I urged Friend Girl (through texts) to go back home or to go to a friend's house. She kept wanting to come to our house, but I told her that wasn't possible.

Several days later, and after involvement by social workers and the police, Friend Girl ends up in the mental health crisis unit for our county. The worker there calls me and said Friend Girl wanted to come stay with us. I explained to the worker why that wasn't possible, and I suggested that she get some intensive help somewhere. The worker agreed, and left to try to convince Friend Girl to go to the hospital.

We heard nothing for a day, and then we got some phone calls via an interpreter for Friend Girl. She was indeed in the Mental Health Crisis Unit at St. Mary's Hospital, and she wanted Ronnie to visit her.

I was willing to take him, and asked the on duty nurse if that would be possible. She said no, visitors had to be at least 18 years old. Then a little while later, I get a phone call from the hospital saying that the doctor had given special permission for Ronnie to visit. So after dinner, we loaded up his wheelchair and headed to the hospital.

We were buzzed into the foyer of the unit (there is a lot of security on a psych ward), but were then told we could not visit. I argued my case, asking why first we were told we could and then we were told we couldn't. The nurse on duty at that time said nothing but "I'm sorry, you can't come in."

You know, I can understand not being allowed to visit, and I was surprised that we were told we could. But I'm really not happy that they played with the emotions of two children. Ronnie has been worried sick about Friend Girl, and to believe he would be able to see her and then denied that gift was a horrible blow to him.

As an adult who has had many, many dealings with hospitals, I really wasn't surprised at this ineptitude. But Ronnie has not had to deal with this before, and it broke my heart to see him disappointed.

Please keep both Ronnie and Friend Girl in your prayers.

Sleeping Beauty

Ashley had yet another MRI under anesthesia last Friday. She was already having them twice a year to check the status of the three brain tumors she has, but this time, her neurosurgeon ordered an MRI of her spine to make sure no tumors were present on the brain stem or the cervical spine. Ashley has been experiencing some slight right-side weakness, and the neurosurgeon said he would rather be proactive about checking.

I agree with that approach, but still don't like it. The MRIs under anesthesia are incredibly difficult for her.

She knows what is going to happen as soon as we pull into the hospital parking lot. She tries really hard to be brave, but her anxiety kicks in after just a few minutes. It doesn't help that the MRI staff seem to move in super slow motion. The longer she sits, the worse the anxiety gets. But the time the staff is ready for her to get on the stretcher, she is in all out refusal mode.

We've tried a couple of things to try to make the process easier. One thing we have tried is giving her Versed via her G-tube. According to the manufacturer, "Midazolam is given to children before medical procedures or before anesthesia for surgery to cause drowsiness, relieve anxiety, and prevent any memory of the event. Midazolam is in a class of medications called benzodiazepines. It works by slowing activity in the brain to allow relaxation and sleep."

Sounds good, doesn't it? Well, it doesn't work all that well for Ashley. If it reduces her anxiety, I'm not seeing it. She still fights for all she is worth when it's time to move to the stretcher. Friday, it took two strong men and a nurse to get her in what appears to be a great wrestling hold, and then move her to the stretcher. Another nurse had the mask for anethesia on the ready, but Ashley still ripped it off her face and broke it. In addition, whenever we use the Versed, she is slow - really, really slow - to wake up after the procedure. And that scares me beyond words.

The other thing we have tried is Ketamine. According to Wikipedia, "Ketamine has a wide range of effects in humans, including analgesia, anesthesia, hallucinations, elevated blood pressure, and bronchodilation. Ketamine is primarily used for the induction and maintenance of general anesthesia, usually in combination with some sedative drug. Other uses include sedation in intensive care, analgesia (particularly in emergency medicine), and treatment of bronchospasm. It has been shown to be effective in treating depression in patients with bipolar disorder who have not responded to other anti-depressants."

Ketamine knocks Ashley out in less than 30 seconds, but the side effects frighten me.

I want there to be another solution...

Here are some photos from Friday (sorry for the poor quality. I was using my cell phone):

Ashley is waiting in a small room adjacent to the MRI room and watching TV while we wait...and wait...and wait. This is early on so she is not too upset yet.



Ashley is in the recovery room. This is exactly how she looked for 4 straight hours. See why I am so scared?



Even on the trip home, she is still half asleep. And, she stayed 'out of it' for the rest of the day and night.



Now we have to wait until Tuesday to see if the MRI revealed anything :(

Hospital - Day 9 and The Homecoming

Tuesday was Ronnie's 9th day in the hospital. The doctor told us his stay would likely be 10 days, but he sure seemed ready to go home to me. Especially when I saw him consume pancakes, eggs, bacon and cereal for breakfast!

We kept hearing rumors all day that MAYBE he could go home Tuesday afternoon or evening. Being the obsessive/compulsive person that I am, I had come to the hospital that morning with a list - a list of things I felt needed to be accomplished or put in place before we left the hospital. We got very lucky and had a nurse who was just as OCD as me, and she started ticking off the list early in the morning.

Finally the decision was made - we could go home! The meds were ordered - my training was completed - the orders for skilled nursing care were put in - and all the clothes, toys, cards, and ballons were packed up. We looked like a wagon train heading to the car with everything, but none of that mattered - we were headed home!!

Wednesday was Ronnie's first full day at home. It wasn't the easiest day. He was still in some pain, and we all had to work out a new routine - a routine that included three catheters and two urine collection bags. Little things like taking a shower became quite a production.

A nurse stopped by for about 30 minutes to change his dressings, dressing which started to come off about an hour after the nurse left. Then one of the catheter connections came apart. Chip and I kept trying to get it back together, and could for a little while, but it's not a permanent fix. What it is, however, is a huge mess maker. I'm keeping my fingers crossed that today's nurse will be able to secure the connection.

This home care stuff is a whole lot harder than I thought it would be. Harder even then when both Ashley and Jessica had brain surgery. The lifting, the transferring, the toileting, the bathing, the hassles with the catheters - all that equals one very tired Momma. Especially considering that I am still the fulltime caregiver for Ashley this week also ( her regular aide is on vacation this week ).

Thankfully, the wonderful Diane, Ronnie's social worker, has arranged for some in-home nursing help, which hopefully will start this weekend. Some help with the bathing and toileting would be much, much appreciated!!!

Even as difficult as it is, I know that Ronnie's quality of life and health are going to get much better after all this is said and done. That alone is worth everything we are all going through.

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.

The Time Draws Nigh

The surgery date is getting closer. We have met with the doctors and gotten instructions for the week leading up to surgery. It’s impossible for me to ignore and relegate it to ‘the future’. It is two weeks away…

Ronnie and I met with his urologist and surgeon this past week. He will be admitted to the hospital a day before his surgery for final preparations, and will stay approximately 10 days after his surgery.

There will be needles and tubes and invasions to both his body and his privacy. Because the hospital is a teaching hospital, there will be doctor students in and out all day – or at least until I put a stop to it and call for a reduction in visits.

There will be times without sign language support – even though I am doing everything I possibly can to forestall that. I know it will happen – it always does.

There will be sleepless nights and uncomfortable chairs. There will be strangers in the bed on the other side of the room, doubling the number of doctors, nurses and other visitors.

There will be fear in Ronnie’s eyes, as well as in mine.

But when all it said and done, Ronnie will be on his way to a healthier, happier future. I have to believe this, or neither one of us would be able to make it through the frightening ordeal.