Thursday, March 14, 2013

Is this it?

As I sat down to write this blog yesterday I found myself too emotional to write here it is, better late than never right?

Brayden's day started at 0615 yesterday morning. I woke him up, got him dressed and then we went to get granma. As we headed to the hospital I had accepted that this was our new normal, and I was taking an "It is what it is" mindset. We arrived in radiology right on time, and then they took us back to get Braydens lines started. He sat on the cart and played happily, but the second they laid him on his back and started messing with him he melted down. I think he finally understands that hospitals, carts, and nurses/doctors only equal pain and discomfort. Our nurse seemed nice and friendly but was clearly not confident she could get his IV. She then went to get another nurse who looked. I told them that his wrists were typically stuck successfully, and his feet were frequently missed. He was then held down for what I felt like was way too much "digging" around in his foot for an IV, which they didn't get. Finally they went to get an older nurse (and believe me when I say it pains me to say that) but she took one look at his wrist, and stuck him and was successful in obtaining his IV. As they were taping it down and immobilizing that wrist he was calming down. Then he was held down for another stick to access his port, and she missed. Her second stick for port access was successful. By the end of this scenario baby boy and I were both in tears. It is so hard for me to watch him cry when he is clearly in pain because there is nothing I would rather do than protect him from all things terrible.

After all of his lines were placed, we were taken to nuclear medicine for our kidney test. As she drew up his radioactive medications, Brayden and I cuddled and he finally got calmed down. Then it was time for his test. As I laid him on the table he immediately began to cry frantically as I backed away. The nuclear med person swaddled him, got him tied to the table, and injected his IV with radioactive meds. After a few minutes of crying he finally relaxed and was watching cartoons. They took intermittent pictures for 7 minutes as the meds began filtering through his kidneys.

After his pictures were done she took his IV out, and told us to return in 90 minutes for labs. We headed for the cafeteria to get Brayden some breakfast as he had not been allowed to eat or drink after midnight. He enjoyed some pedialyte and a pancake. It's hard to believe what a familiar place the Children's Mercy cafeteria has become.

After he finished eating we headed to the bathroom to change his diaper, and when I laid him on his back on the changing table he began to cry frantically again. It's as if he has now associated being laid down anywhere but his crib with something unpleasant happening. I carried him to the lobby where Brayden received his "Bag of Fun".

Bags of Fun are managed by a foundation that provides children with cancer or other childhood illnesses with backpacks full of toys. The foundation was created in memory of a 6 year old girl who lost her 19 month fight with brain cancer in 2004. Braydens bag had an assortment of original toys that were selected for him based on his current development, as well as a portable dvd player! We were very grateful for his bag as it will be nice for him to have fun toys to play with at the hospital. It also came at a very opportune time for me given our morning. It was nice to see him smile and play with some toys, even though it was only for a moment.

After checking out our entire bag we headed back to radiology for labs. He had labs drawn at 1000, 1035, 1105, and 1135. Then we were free to go, so we headed back to the cafeteria for lunch. Brayden had some turkey and cheese off my sandwich as I didn't have much of an appetite. After eating, I called our nurse practitioner from neurosurgery to see if we really needed to see Dr C for a wound check. (I just couldn't bring myself to drag him to another waiting room the very next day.) Fortunately, she was in house and was able to come check his wound so we could skip the formal appointment!

Then it was time to head to the hearing clinic. To make a long story short, he wouldn't cooperate. I wasn't surprised though; he had been awake for 7 hours with only a 30ish minute nap between labs,  he had been stuck 4 times and been tied to a table! I mean really? They attempted to check his hearing like they do in little babies, and he failed that test. The audiologist is thinking he has fluid in his ears since he has a cold right now which caused him to fail. She suggested seeing him back in a month, so we got that scheduled although I will be surprised if that will fly with Dr G since he is supposed to get his first round of chemo on Tuesday.

After that we were finally able to come home. I fed Brayden a bottle and put him down. He cried, but calmed himself and went right to sleep. About 30 minutes later he woke up crying hysterically, so I went and got him. After rocking him he went back to sleep, but every time I tried to put him down he would cry hysterically. That basically equated to him sleeping in arms/lap for about 2 hours, but I didn't mind. After all, how many more times will I get to rock him and cuddle him like that? As I rocked him I found myself to be very emotional given the days events. I found myself wondering "is this it"? When he woke up he had some dinner, walked in his walker, and he was more himself. He had his first real bath since his port placement on Monday and went to bed early. I want to thank my mom for taking off work and coming along for this visit because I know it wasn't fun. I greatly appreciated her being there as its nice to have the company and that way I wasn't alone during all of our downtime as your mind can just run wild during those times.

This morning my happy little man is back, and as usual things always look brighter in the morning. Part of me is still wondering "is this it"? I mean, if it's going to be like this all the time then I have to wonder if we are really doing what is best for Brayden. I don't want to torture him with needle sticks and chemo, but on the other hand, I need to know that we at least gave him a chance to beat this thing even though the odds are completely against us. In my mind I thought that port placement on Monday would have been the hard thing as it felt like the first step in the fight for Braydens life, but it wasn't hard at all. Maybe that was because he did so well and I didn't have to watch him suffer. So in that regard, I suppose yesterday really marked the beginning of our emotional roller coaster......

On a brighter note, some of my coworkers are putting a fundraiser together for Brayden and I am truly touched by this show of support. I hope that someday I can give back in some way to all the wonderful people who are helping us through what I am sure will be the most difficult journey of our lives.

***As I was writing this blog, I received an automated call from the hearing clinic. We have another hearing test scheduled for Tuesday at 0830. It's nice to know that Dr G is on top of Brayden's case and has his best interest at heart, although I am not sure the outcome will be any different because Brayden's nose is still running.......

1 comment:

  1. Hi Julie, I'm a fellow KU employee and found your blog through your unit's fundraising efforts. Many thoughts and prayers are going out to you, Brayden, your husband, and all other family members. Your KU family is praying for you!