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.

Special Exposure Wednesday

The first morning in the PICU...my brave boy looks really, really good...considering...



Be sure to check out all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs!

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.

There is Hope

I witnessed something yesterday at the baseball game that really warmed my heart – and it needed warming.

In the same little ‘handicapped seating’ area where we were, there were also 3 adult men with significant and severe disabilities. With them were their caregivers, one for each gentleman. They appeared to be group home residents, but I don’t know what group home or what company runs the group home. But I wish I had asked.

Based on my own experience with group home staff, and based on what I have seen in my community, the people that get hired to support our most fragile family members are usually not well trained, and not very caring. The three ladies with the gentlemen were exceptions to that in a big way.

There were little things. The ladies would wash their hands with hand sanitizer between caring for or feeding each of the men. The men were all on pureed foods, most of which seemed about the same beige color. But the ladies told the men what they were eating and asked them if they liked it. The women chatted with the men during their meal even though none of the men could chat back. They made sure the men were clean after eating and would straighten their clothes, push hair out of their faces, all those little things that a person does for a loved one who needs assistance. The ladies made sure that the men’s wheelchairs were positioned both the keep the men out of the sun and to make sure they had a good view of the baseball game. They sang the ballpark songs and yelled ‘Charge’ when the rest of the stadium did. About half way through the game, they surprised the men with ice cream served in little baseball helmets.

There were also big things. One of the gentlemen was having a birthday yesterday. His nurse kept talking to him about that, singing the happy birthday song to him, and promised him she would try to catch a foul ball for him. A glimmer of a smile crossed his crooked face. My boys had seen a foul ball land just outside the ball park. They couldn’t go get it because they would not be allowed to re-enter the park. So we stopped a park employee, asked him to get the ball, and he agreed! The birthday fellow got his baseball, and his nurse wrote the date and ‘Happy Birthday’ on it for him. His glimmer of a smile got even bigger.

These were women who cared about their charges. They were professional and loving at the same time. There were respectful and obviously valued the men’s dignity. They had pet names for the gentleman, and were constantly patting an arm, squeezing a hand, and other little things to let the men know that they were there for them. In short, they were doing more than just a job – they were lovely, caring people and I was proud to have spent time with them and with the three gentleman.

Bravo, Ladies, bravo!