I had difficulty sleeping again last night. I started getting a migraine and took my meds and went to bed. I could't fall asleep, then finally put a cold cloth on my head and calmed my anxiety enough to go under a light sleep. At 4 AM, I woke up rather suddenly with a bad feeling. I noticed Jayson was stirring a little, so I got him some Motrin. I noticed he was almost out of food, so I reflilled his feeding bag. I still didn't feel right. I saw he had slumped down on his wedge while sleeping, so I felt the blanket he had slept on. Wet. Sopping wet. I smelled it (weird I know, but it's important in the medical field) and it smelled like grossness and a little sweat. I gently put my hand under his head and started to lift him back up onto his wedge from his slumped down position. Wet, gooey, nastiness all over my fingers. I didn't even know what to think. I ran to the light switch and turned on the light. I couldn't see what was on my hand. I turned Jayson on his side. Oh. no. White, groos puss was oozing out of his wound. How did this happen? Things seemed to be finally healing!!! How can this be?? I was supposed to be returning to work today and participating in an importnat teacher training. Are we really heading back to Primary's again???
I felt so anxious, deflated and discouraged. I knew it. I knew there was something wrong, but I almost let the doctors convince me otherwise. Maya, our sweet pup, also knew there was something wrong. I had a feeling something was coming because out of nowhere, Mays would not leave Jayson's side all weekend. She was shaking anxiously for hours at a time, like she was uneasy, scared or afraid. We couldn't figure out what was wrong and why she all of a suddent wanted to lay by (or somethimes on) Jayson. Well, now we know. She knew something wasn't right.
Shelby, our nanny, came over at 7:15 am as we planned. I was supposed to be heading back to work. Instead, she helped me get Jayson ready to go. This is more than a two person job, especially when we are in a hurry. We got his diaper bag re-packed with his supplies. We got his travel oxygen tank ready to go. We got extra formula. I prepared his meds so they could soak in the car and be ready to give once we arrive at the hospital. I grabbed a couple of his toys and my ipad with all of his medical information. And off we went. For the first time in a long long time, I didn't pack an overnight bag for me. The last couple of times I did, we were just sent home to "wait". I assumed this would be no different. I also took Shelby with me to the hospital, thinking we would be given an antibiotic and be sent on our way. I thought I might be able to show up for the afternoon session of the training and help my teachers. Boy, was I ever wrong.
We arrived at the hospital and in my head I thought it was Monday. Not an uncommon mistake these days. I rarely know the date or day of the week anymore. I assumed since I thought it was Monday doctors would be around to see us readily. Not quite the case on a Tuesday. We lucked out and didn't have to wait too long. We lucked out even more and actually saw the neurosgurgeon this time, instead of his plethora of residents. I was not prepared for his frank and emotionless response to Jayson's head wound: "It's a stitch abscess. He's got to go back in the OR. We should take him now. He is allergic to the internal sutures and could be causing an infection and the abscess. When did he last eat?" Crap. Big mommy failure. How did I not suspect a surgery??? I had him on his continuous formula feeds. I gave him Motrin in the early AM. Both of these things are no good for a baby going into surgery. He said we would have to admit him and wait while for him to be off of feeds for six hours in order to operate. I hated the doctor for being so blunt and heartless. I loved the doctor for being so blunt and honest. Without emotion or concern in his voice, I didn't get emotional. I took the news very matter-of-factly. Okay. My son needs surgery. In the OR. To get him different sutures since he was allergic to the other ones. No biggie. It's all under control.
How I didn't completely fall apart today, I have no clue. I still don't think I've had time to let it sink all in. I went with Jayse up to the neurotrauma unit to our new room 2032. It felt like deja vu... like we were just here. Wait. We were. We got our same nurse as before. It almost feels comforting in a way. I waited in the room for almost two hours before making the decision to leave. I needed my hospital bag. I needed more of the mepore tape that Jayson isn't allergic to for surgery. I needed my anxiety meds before I flipped the crap out. I had to go home and get our things that I should have packed to begin with. Ideally, I should have taken Shelby with me to drop her off at home while I pick up our things. But I couldn't do it. I couldn't leave Jayson alone without anyone. He was starting to show signs of being in pain, and I knew they would come in at some point and put in an iv. I decided to have Shelby stay with him while I ran home and then send her home on the Trax train. Our plans worked out. She was there for the little man when they poked him for his iv, and then poked him again because they failed to get enough blood for tests the first time. She held him while he cried, when I could not. She loves him so much.
Mike left work early to come to the hospital before surgery. We anxiously waited to hear when it would be "time". I also grew more and more confused. After I spoke with the doctor this morning, I spoke with one of his residents. He relayed to me what woud be done during the procedure. It was different than what the doctor had told me. He went into much more detail, whereas our doctor is a man of few words, but it was not the same thing. The resident explained that there was an infection we were treating. The doctor said the main problem was the allergic reaction to the sutures. I grew more confused as I tried to let all of the new info sink in, and anfer we got Jayson's blood test results. They were perfect. No signs of infection. So why were they going to open him up to treat the infection? It didn't make sense. I really needed to talk to the doctor one more time before we go in for surgery.
We were able to meet with the anesthesiologist and the doctor in a private room just outside the OR to ask our quesitons. I asked the neurosurgeon to please explain to Mike what he told me this morning. He just stared at me with big eyes as if he wanted to say, "Why don't YOU tell him what I told you?" but he just stared at me in silence. I broke the awkward pause by continuing, "So, you said he has an abscess, right?" "NO!" he responded curtly, then he laughed in a scoff-like manner. I laughed awkwardly to try and hide my anxiety. He went on to explain that a stitch abscess is different than a regular abscess. Jayson clearly had a bad reaction to the "vicryl sutures". His skin was red, inflamed, irrated and refused to heal. He said that just inside his head are another set of sutures to close things up around the brain. These were also vicryl. He is having a reaction to those as well. His body is fighting them and rejecting them. His body is pushing them out of his skin. He would open back up the insicion, pull out the vicryl sutures, put in nylon sutures, clean the internal area completely, and sew him back up with nylon sutures. He said it was all very superficial. The patch sewn onto the dura also has sutures, but they are made of a material that Jayson would not be allergic to. So he would not need to open up everything as they did originally. I felt so relieved to hear his explanation. He said it would only take a little more than thirty minutes. It was going to be okay.
Mike and I kissed the little man and walked down that long, sterile hallway towards the parent waiting room. I hated that place, but it felt good to be among familiar faces. We're on a first name basis with half of the hospital staff, it seems. The receptionists gave me hugs and encouraging words, and handed me Ritz crackers and Oreos so I could eat my feelings. Mike played games on his ipad while I juggled between my ipad and phone trying to charge one while I use the other to post updates. After about thirty short minutes, Dr. House as I like to call him, came into the parent waiting room and said, "It was just what I thought. Piece of cake. He's doing fine. See you in the morning." Then he smiled and walked out. Part of me wanted to junkpunch him, and the other larger part wanted to hug him. He makes everything sound so simple, black and white, easy. He's so confident, and I love that. He is pretty much insensitive and arrogant, and honestly that's okay. He knows what he's doing and that's what is most important to me. And something about his insensitivity comforts me. Again, his lack of emotion resulted in my lack of emotion. Great. Jayson was okay. Piece of Cake. Moving right along.
I was so anxious to see him. FInally I got the phone call to go back and see my boy. Mike had to wait in the waiting room, whereas only one parent can go back into recovery. Jayson was sleeping soundly when I got there. The nurse informed me he was not happy a few minutes earlier, so they gave him some strong pain killer. Once he heard my voice, he started to open his red, swollen little eyes. He wanted me to pick him up so he reached for me and lifted his head. This resulted in him realizing quickly that he was in a lot of pain. Which made him want his mommy more, so he reached and lifted up again. I tried to calm him, but we had to get him more pain medication until he was settled enough to sleep again. All looked well so we were able to meet up with daddy in the hall and head back upstairs to our room. I was so relieved that we would be going back to our room instead of the PICU this time.
Since we've been back to our room, we have been focusing on pain management. He has seemed to have a lot of pain, but it is because he wants to wiggle, move, sit up and be held. The morphine is making him shake, which I hate. We just started his feeds again and once he has some food in his system we can try some Lortab instead of morphine. The resident from this morning returned to our room to ask us if our doctor explained everything. I laughed and again responded that our doctor is a man of few words. He went on to explain details that were similar to his description this morning, and again contradictory to what our doctor told us he planned to do. I am having a hard time deciding if the doctor did something different and just didn't let us know about it when he said "piece of cake" or if the resident is a complete idiot. I'm betting on the latter. I cannot speak with our surgeon until the morning to find out for sure. So right now, I can honestly say that I don't know what in the HECK they even did in that operating room, which is not very comforting. I do know this-- Dr. House has this. He was right; everything went well as it always does in his care; and it was a piece of cake.
Jayson's incision looks very different this time. I'm already feeling more comfortable just by looking at it. The plan is to focus on getting him back on his feeds and ensure he is tolerating them, manage his pain, and ensure the incision is looking good. My personal goals are to pick him up, hold him, give him a bath, and stay on top of his pain. I hope he is comfortable enough for me to hold him tomorrow so we can cuddle up and watch our favorite season of BMW, our favorite hospital past-time. The neurosurgeon said we may be able to go home as early as tomorrow. I'm not in any hurry. I want to make sure JAYSON is ready to go home. He will let me know. He always does.
On a side note, my sister came by tonight to visit Jayson and me. She mentioned something that would cheer me up-- Ben Savage (Cory Mathews from Boy Meets World) is in Park City at the Sundance Film Festival. She was right!!! That would definitely cheer me up! The sad news is that we are here at Primary's and he is there watching films in PC. Oh how I wish we could go walk the streets of P.C. hoping to run into him and other celebrities, but we cannot. Not this year. We joked about learning how to twitter and send him tweets or twitters, or chirps or whatever they're called about visiting Jayson in the hospital. Every single one of our 13 hospital admits, we have played episodes of Boy Meets World non-stop. It's a childhood favorite, and brings me so much peace and joy. I watched the series in high school, caught reruns in college. Then Mike and I watched all of the episodes together when we began dating. We watched them for date nights after we were married and too poor to go out. We watched them right after Jayson was born and we were up all night with a newborn baby. Now, they are our constant companion during every hospital stay. My sis used her new twitter account to message Ben Savage... multiple times... poor Ben Savage. We didn't quite know how to use Twitter yet. Then I mentioned it to a couple of my friends in my mommy online group, thinking they'd laugh at me. Instead, they joined in. Many of them opened up twitter accounts to also message Ben Savage. Now I'm starting to daydream. What if he came? What if THE boy from Boy Meets World came to see Jayson?? What a cool story I could tell him as I tell him about his bravery and determination, and how he inspired people all over the world INCLUDING celebrities. That would be an amazing experience. I don't know that it will happen. In fact, I'm sure Ben Savage is a very busy man, but maybe one day Ben will read Jayson's story. Maybe Jayson will be a part of his thoughts and prayers. And maybe while we're watching his beloved childhood TGIF series during one of our many hospital stays, Ben will be thinking about our brave boy and how he inspires him to be a better person. That in itself would be an amazing story to tell our amazing little hero. xoxoxo
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