Full Circle...

Sometimes when I take a moment to stop and think about how far we have come in the past year it is so very hard to believe. Last August, we were a week out from Gabe's drain trial. Those were really dark months. Literally and figuratively. Gabe's intracranial pressure was so high that he could not stand light. We could not go out side, we could not have the curtains open down stairs for any length of time. The TV had to be on low, and the girls had to be quite because any increase in noise put Gabe over the top with pain. I am not sure how many time I called Rachel to just talk me off the ledge. Rachel was just under 2 years out from Decompression and Shunt surgeries. Everyone else I had spoke to had older children and it was good to talk to someone who had a younger child go through this.

I remember when I emailed/text messaged Rachel and told her that they wanted to do a drain trial and what the hell did that entail she responded, "Oh, this is a phone call". LOL She called me and we talked. She talked me through the entire process and while it helped to know what was going to happen, I was just in a bad place. I do not know how to describe it. It would be a cross between being in a horror movie, riding a horrible roller coaster and being so depressed that you just want to lie in bed and never get up. That might just scratch the surface. It was really hard to even cope with the days. Everyone else was getting their 5 year olds ready for school and I am getting my child ready for ANOTHER surgery. My friends were discussing football, soccer and all types of sports that Gabe could no longer play. I had nothing to offer. A little piece of me was dying inside knowing that Gabe could never do those things again. I got so tired of explaining what was going on with Gabe, no one could seem to grasp the complexity of the nature of his issues or that surgery or a shunt were not complete fixes.

Every morning I would wake up (after my brief amount of sleep since Gabe did not sleep) and I would be full of hope that that morning the Diamox would miraculously work and he would not need the drain trial or shunt. Now that feeling was shot down within the first 60 minutes that Gabe was up, and I would crash. Every time I would crash and realize that we needed the drain trial and we were going to need a shunt it was further and further down into the darkness.

The day of the drain trial was rock bottom. I cannot even begin to put into words how badly I felt, how scared I was , how mad that was, how absolutely terrified I was. If the windows in the hallway outside of the surgery waiting room opened, I honestly probably would have flung myself out the window onto Maryland Ave. S.E.R.I.O.U.S.L.Y.

I can say that I am not the only person that the drain trial caused to push over the edge. During Riley's drain trial he ended up developing a potential infection in his CSF. (Staph in the CFS=Nasty Meningitis) He was leaking and Rachel had to lie in that bed with him. The resident tried 3 times to "seal" his leak but it did not work then the resident stopped answering his pages. Finally by morning with a little guy who did not sleep due to everything going on, a new resident came in to do rounds and Rachel lost it with him. He finally looked at her and said, "Mrs. J, I think that you need to take a vacation to the RMH." Now I know that will get some up in arms, but to know the resident who said that makes me laugh hysterically and to know that the resident was able to identify that Mom needed a break was a good thing. (On a side note Riley did not have an infection =) )So it is something about the drain trial that causes mom's to go crazy. LOL

In February I met an awesome mom (Kristen) who was just starting this journey with her son (Nic). They traveled all the way from Oklahoma to see the Great and Powerful Frim. I also met a mom (Cindy) whose daughter (Riley C) was post decompression staying at the RMH until her post op clearing her to drive back to Wisconsin (The Mosquito State-and yes Cindy can appreciate that as she was at camp). They had the unfortunate experience of meeting another veteran mom who likes people to feel that her child is the most sick and complex patient that The Great and Powerful has. I am not sure how many times I said, "Gabe and XXXX are not the norms."

The next morning Kristen and Nic had to be at the hospital early for his MRI and I had to go later. Since when we left they were not back at the house I stopped in Radiology to see how they were doing. Kristen was sitting there, thumbing through a magazine looking quite worried. I remember thinking do I look like that when Gabe has procedures? So I sat with her and killed time until they called her back since Nic was in recovery and I had to go to the OR holding with Gabe.

I was able to meet up with Kristen and Nic a few more times and we developed a friendship. During Nic's recovery he developed issues and they told her they wanted to do an MRI and LP when she came for her post op visit. They thought he had high pressure. I was honest with Kristen and told her I would be surprised if they told her he did NOT have high pressure based on his symptoms. The day he had his MRI and LP she called me. I remember the urgency and fear in her voice. "His pressure is 31.5" It was a cross between a statement and a question.

While she has tried the meds, I have text messaged her or emailed her. I have called her. The other day she text messaged me and said they wanted to schedule Nic for a drain trial. What was that going to entail. I text messaged her back, "That is a phone call. I will sprain my thumbs text messaging all that".

That is when it hit. We have come full circle. We are no longer the new parents on the block. Our "block" has a new family. I am so sad that Kristen, Nic and the family are part of this "fun and exciting group of kids" but I am grateful that I got to meet them. Please keep Kristen and Nic in your thoughts and prayers as they plan for their trip to Chicago for the Drain Trial on Sept 3.

Kristen, I know where you are now and I promise you that you will eventually look back and it won't be quite so bad as where you are now. Many hugs my friend!