Another Bump in the Road

It happened again. Practically overnight Crewe's cysts grew. This time they extended into the top of his chest and began putting more pressure on his esophagus. As a result, he was having a very difficult time swallowing and couldn't keep his food down. He also was laboring more than normal to breathe.

I started to freak out. We made a late night call to the doctor and ended up at the ER at Phoenix Children's last Thursday. Crewe was immediately admitted to the hospital and scheduled for three rounds of emergency injections to help relieve the increases in swelling.

The first round of emergency injections was last Thursday and fortunately it provided immediate relief to his eating problems. He underwent another round the next day and had his last round of emergency injections this past Monday. After each set of injections, the doctors left in two "drains" for 48 hours that literally suck fluid out of the cysts and deposit it into small catheters.

I had a total meltdown on Thursday when the hospital would not admit him back to intensive care. I could not bear the thought of leaving him for any period of time to a nurse with several other patients. Because of the trach, Crewe's cry cannot be heard. I was so worried that he would need something and the nurse would not know because she could not hear him cry.

Feeling completely overwhelmed, I called my good friend Tara in Denver who is a labor and delivery nurse and who just happened to answer her phone while on a break at work. She calmed me down and gave me some great advice like good friends do. And then she did something that I will forever be grateful for... she got on a plane the next day so that she could stay the nights at the hospital with Crewe. Knowing that Tara was there with our little guy gave me the peace of mind I needed to sleep.  Thanks again, Tara!

We were able to bring Crewe home on Monday night with a couple of his drains still attached.  I took him back to the hospital on Wednesday for the drains to be removed and he did great. He is very, very swollen from so many procedures in a such a short period of time, but we are hopeful that we will see an improvement in his overall condition soon.