More Waiting And An MRI

The weekend following the CT Scan was long. Jack began teething again and decided to wake every two hours. Meanwhile, everytime he cried or ate significantly less or slept poorly, we worried it was due to the mystery in his little, big head. I was reading on the internet as much as possible. Not so much out of worry at this point but more because I wanted to be informed. When I'm sick, I worry. When Jack's sick, I worry but I also feel responsible. I feel like I have to know everything. I started reading everything. At some point, I decided that it was a cyst of some sort. These things were rare however even though everyone wants to tell you how common they are. FAct is, 1 in 100,000 infants has a cyst in their head. So, no matter what people tell you, it's relatively rare.

So Monday rolled around. Jack couldn't eat after 5 am on Monday morning and his appointment wasn't until the afternoon. He could have Pedialyte and/or water up until the appointment. It went better than we expected. At some point, he didn't want the Pedialyte and eventually refused water as well. I couldn't guess how hard refusing food to your baby is when he's hungry. Even without crying, I felt guilty. It goes against everything about being a parent to deny your baby their basic needs.

Anyway, the longest day ever flew by in the beginning. Before I knew it we were packing Jack up for the hospital. We got their an hour early with hopes of getting out early. We were checked in quickly and went to the radiology unit of the hospital. Jack, wearing his medical i.d. was no different than any other day, except he was hungry. After about 15 minutes we were called back and given a hospital room for preparing Jack. The nurse talked to us about the procedure. She was very difficult to understand due to a thick accent. I felt the need to clarify everything. I didn't want to misunderstand anything or agree to anything without knowing.

Then it got a great deal harder. We were briefed on the anesthesia and the risks and procedure to follow. We had to sign a release allowing this which indicated the side effects and possible mishaps associated with the procedure. The nurse was very interactive with Jack in the meantime and it was clear she loved babies. After about a half hour, the anesthesiologist came to visit and ask some questions. Jacks vitals were taken. Another 15 to 30 minutes went by as Susie and I entertained Jack, making him laugh and not letting on their was anythging to worry about.

Then, the nurse said they were ready. Suddenly I was confonted with the unexpected. The nurse turned to me, as I was holding Jack at the moment, and said, "Can I take him from you?". I looked at Susie instinctively and felt myself move away without thinking. Then I said, "yes", feeling the tears building in my eyes. I kissed Jack and moved him to Susie for her to kiss him as well. I told him I would see him in a few minutes and handed him to the nurse. My face became the streets of Spain and tears ran down it like the crazy people during the running of the bulls. I lost it. The nurse reached out to Susie to hug her and Susie very assertively and respectfully said, "no, please don't, thank you, but no". Then I turned to Susie and hugged her. For the first time ever, we had given our baby to the trust of a stranger at a time when we leased wanted to do so. Susie and I stood there, surrounded by medical instruments like needles, heart monitors, iodine, knives, and other sterile, shiny devices of which I hope to never know the purpose, holding one another and crying.

At some point we headed to the hospital cafeteria to get a drink. Susie ate an ice cream which she said was not even remotely satisfying. We meandered back after 20 minutes and waited in the lobby of the radiology unit to be called back to see our son. Finally, our nurse appeared after what seemed like hours but was only about 30 to 45 minutes. She stopped and talked with someone first, laughing about life, and then made her way to us.

Next thing I remember is seeing my baby boy. Tubes connected to his face and arms, eyes barely opening, he made sounds I never had heard before. He moaned, clearly confused and drugged. I wanted to snatch him and run but I didn't. We had to wait two hours during which he slowly returned to himself. We fed him and waited to be sure he didn't get sick due to the drugs. Finally, the nurse allowed us to leave early.

Once again, I told Jack to clear his head, as I didn't want to return.

I called to let Dr. Kalter's office know we had finished and was told it would probably be 2 days before we were given results. The hospital had told me a week so this was good news. After 2 days, I called everyday to check for the MRI results. I asked on the 2nd day if there was a way to make the process go faster because Susie and I were going insane. The receptionist told me there was nothing we could do. I added, "what if it's serious". She stated, "I'm sure it's not serious or they would have notified you by now", adding that they call people immediately when the results indicated something serious, typically. I hung up wishing she'd never said that.

Neither of us were going to work. I knew the call could come at anytime and also knew I didn't want to be away from my family when this happened. We were basically on 24 hr make Jack laugh patrol. I felt like I was getting to bond with Jack in ways I never could because of all the extra time I was getting with him. Jack started to smile at just the sight of me walking into a room, every time. It was very rewarding. However, the wait was excruciating. Every minute was interupted by the possibility of bad news. The what ifs were flooding through my brain and I was doing everything I could to hide them from Jack. Meanwhile, I was keeping clear limits with family to keep everyone from inquiring about the status until we knew something.

Finally, on Friday at around 6 pm, we got the call. Susie spoke with Dr. Kalter who quickly told her the results. I saw her face...she was concerned. Once again, the phone was given to me for Dr. Kalter to repeat the results, an all too familiar chain of events. Kalter informed me that a cyst was found on the outside of the brain within the skull putting what appeared to be pressure on the right side of the brain. Then, silence. I asked quickly, "what does this mean?", "what do we do next?". Kalter indicated the next step was to see a neurologist. I asked how to go about that and he stated we needed to pick up a referral from him and then call the neurologist. I asked him how urgent this was. He said that we should act with intention but it was not necessary to panic at this time. I asked to pick the script up in the morning and he said it would be ready by the time they opened at 9 am. I wrote down the name of the neurologist which he indicated may take some time to get an appointment with. I asked if there was a way to speed up the process and he indicated, with some apparent annoyance, there was not. He then said someone at his office would help us get the appointment set up tomorrow when the script was picked up. I then asked, "how serious is this, I mean could it be cancerous". His reply, "probably not". Then I told him we would be at his office first thing to get the script. I hung up.