Arabella’s pH Probe

 

What a BUSY spring break we have had! It has been so eventful that it hasn’t really been a break. Saturday we rode and air boat, Monday & Tuesday we went to Disney World, Tuesday night Rich and Maya went to the ER (post and pics of all of these events coming soon). Then, early Wednesday morning Arabella & I went to Jackson Memorial hospital in Miami for her pH probe. You can see pictures and read about one of Aidan’s pH probe experiences HERE.

I’m not gonna give all of the details in this post because it was actually a pretty bad experience. I’ll save all of the negativity for a later post, hehe;) I’m gonna focus on the good because in the end there really is sooooo much to be grateful for. Here’s the skinny on the probe & reflux & removal of the trach. The reason for the probe was to check if she has reflux. This is EXTREMELY  important to know before she gets the trach removed. For a normal kid reflux isn’t THAT big of a deal if they take their medicine. For Arabella it is a huge deal because if she does have reflux and it isn’t controlled it is really dangerous to take the trach out. She could end up having to get the trach put back in if it’s not under control. So, Dr. Singer said that he will “absolutely not remove the trach until the GI doctor swears to him that the reflux is controlled.” Once the GI doctor gives the go ahead he can do a bronchoscopy to check for movement of her vocal cords and then, when she is ready, the trach is outta here!!!

Left pic is right after they put the probe in. It took them 4 tries. It was so sad:( Right pic was after her bottle. Much happier:)

She was such a good sport. She tried to pull at it a couple of times but after I told her “No! Don’t touch!” she would just point to her nose and say “No!”. Such a cutie.

I packed a few toys for her to play with but after I got there and was told that the play/activity room was closed for the day I was really wishing I had brought more. She entertained herself with Mr. Potato Head for a good 2 hours in about 30 min. increments.

 

We were required to stay 24 hours so we spent the night. That night and the next morning we roamed the halls just trying to kill some time. A hospital is a very humbling place to be. You go in feeling sorry for yourself and you leave feeling soooo blessed and grateful. We saw so many little kids on chemotherapy, dialysis and who knows what else some of these kids were going through. Whatever it was, it was worse than our situation. It was one of those times when I wished I had a magic wand that I could wave and take away all of the sickness and suffering that these little kids are too young to have to experience.

In the morning we went into the play room to color and play. There was a little boy that came in named Sky. I remembered seeing him in his room the night before playing with his Toy Story toys. He couldn’t have been more than 4 or 5. He was so cute and friendly and so sweet to Arabella. He came in wearing a mask and gloves, dragging along his IV pole. He was very yellow and after he sat down across from me and took off his gloves I noticed he had several fingers amputated. I’m so sad to say that it looked like some of his others would soon follow. He couldn’t speak but he could sign and he was very animated. One of the nurses made the comment to me, “Sky practically lives here.” How sad is that? I wanted to bring him home with me. He lasted about 10 minutes before he was worn out and had to go back to his room.

There were so many others that just broke my heart. The little boy in the wagon that couldn’t walk yet because he was so weak from his dialysis. The little girl that came in to the play room crying because she was in so much pain and barely made it with the help of her mom and several nurses. They finger painted and played with cars and colored. Normal kids going through some of life’s biggest struggles. I hope that we will never take what we have for granted. When life gets hard, don’t get down. Be grateful for what you do have. What an experience and what a lesson to me. I am grateful for it.

The pH probe results came back NEGATIVE! Arabella no longer has reflux and we can focus on getting the trach out!!! A very happy ending to our visit to the hospital.