Before I went to bed last night, I said a prayer for guidance. It has been 24 hours since I had my strong mommy instinct feeling. It had been 24 hours of worry, research, tears, stress, anticipation, and thorough examinations. I just wanted answers. I wanted to know what was wrong and what I was supposed to look for. I was exhausted from guessing and from wondering if it was his head, his wound, his spinal fluid, his tummy, constipation, teething, an illness... ahhhh!! I just needed some direction. As I was getting into bed, I had a strong feeling to find a white blanket or towel to lay under Jayson. I grabbed a white blanket and successfully placed it under him without waking him up. He didn't have any leaking the night before, but this way I can easily see any fluid leakage.
I spent the night getting up every hour or two to give his medications, and he seemed to sleep much better than the night before. He only whined and fussed a few times during the night. At 7:30 AM, Jayson woke up for the day in tears. As I consoled him I looked down at the white blanket and almost threw up. There was a good amount of blood and clear fluid on his blanket. I tried not to panic. I remembered the doctor on the phone and in the office told me some seepage would be normal, especially since the stitches were recently taken out. It would be weird since he didn't have any leaking the day prior, but still a possibility. He told me to look for fresh liquid on the wound. I looked at the back of Jayson's head, and my heart stopped. Shit. Fresh, clear liquid. And I could see it coming out of his head. I blotted it with the blanket, and saw the moisture returned. This was it. This was the answer to my prayer, a sign that the problem was with his head and we would need to go to the hospital to have it checked. There was no question whether or not I should go at this point. It was out of my hands. I placed a call to the neurosurgeon on-call at the hospital. I needed to know whether we should come to the clinic at PCMC or go straight to the ER. I tried to get ready to go while I waited for a call back, but I found myself physically shaking and pacing back and forth. I couldn't collect my thoughts. Leaking CSF fluid means he'll have to be opened back up. The dura patch would have to be repaired. Another risky procedure, and another long recovery. And things had been going so well. I really didn't know how much more Jayson could take; or how much more I could take.
I knew I needed some help. I couldn't emotionally do this on my own. Mike was at work, and needed to preserve his sick time since he had used so much for the surgery. If Jayse ended up going into surgery again, of course he would be there, but until I knew for sure I didn't want him to leave work. I called our nanny Shelby to come over. She could help me get Jayson ready to go and calm me down. I also needed a Priesthood blessing. I tried to think of who to call. Most men were at work or about to leave for work. I really wanted my second family, the Faulkners, to come over, but they were probably working and they had a lot on their plate as well. I gave them a call anyway, and fortunately they were able to come over and give Jayson and me a blessing. The neurosurgeon on-call called me back during Jayson's blessing, so I didn't hear it all. But I know Jayson did. He went from upset, anxious and in pain to giggling. My blessing really helped me as well. I stopped shaking, my head was clear, and I was able to be productive and get things done so we could go. I packed an additional hospital bag, since the overnight bag wouldn't be enough. Shelby and I got Jayson packed and loaded up, and we headed on our way.
Once I arrived to the Emergency Department, I knew I was going to have to play hard ball. I would NOT let this be an opportunity for Jayson to get sick on top of everything else. I checked in, let the nurses peek at Jayson, but I refused to take him out of his car seat and stroller for vitals or to weigh him on the scale. They were a little put out, but thankfully complied. We got right into a room. The nurse took Jayson's temperature. 38.2. That's a fever. Crap. She wheeled a "clean" scale in the room and asked me to place Jayson on it... with no towel, paper, or protective covering. I asked if she had some paper to cover it, as they typically do, and she asked why. I said, "Well, as I said before, it appears Jayson has a spinal fluid leak." She responded, "Oh, yes, I see! Of course we don't want that leaking on the scale and making a mess." Right... No, I was more thinking along the lines of my son can get an infection in his brain if there is a leak!! How about we don't lay him on random hospital equipment that is passed from one room to the other! Geez...
That wasn't the end of the stupidity, and I knew it wouldn't be. The ER is a very frustrated place for parents of "complicated kiddos" and frequent flyers at PCMC. Lots of stupid questions. Lots of oversights. Lots of attempts to use the tape my son is allergic to. Lots of mispronouncing of my son's conditions. And even some mistakes that are apparently in his file that is only found in the ER. After being told, "Well leaks are common after a brain surgery" from one ignorant resident ER doctor, we saw the attending doctor who got the ball rolling. He ordered some blood tests looking for infections and a virus panel to try and find answers as to why Jayson has a fever. He paged the neurosurgery team who was operating on a patient at the time. He informed us we would be waiting a while as they finished up surgery, and hopefully we would have our test results by then. Instead of just a finger prick, the doctor recommended the iv team came and placed an iv in case it is needed for surgery. I liked his thinking. Jayson did well with the iv placement and closed his eyes for a little nap. I tried to buy time. We arrived at the ER at 9:30. It was 1:00 and we were still waiting for neurosurgery. It was difficult not to let the anxiety get the best of me, but I tried to stay busy and productive to prepare for my discussion with neurosurgery. They are very busy doctors, and not so touchy-feely. You have approximately 4-5 minutes, typically, to explain all of your concerns, show any pictures or videos, and answer your questions. You have to be organized and prepared. I found my daily pictures from Jayson's surgery on my phone and emailed them to myself so I could open them up on my iPad. That way they would be bigger. I combined the past four pictures in a collage so they could be easily compared. I did more research online about CSF leaks, how they are tested and how they are identified. I practiced saying some of the new vocabulary out loud so the words could fluidly leave my mouth. I felt prepared and ready.
Jayson woke up from his nap fussy and upset. I am sure he was tired of laying on the hospital bed and waiting, just as I was. The ER resident came back in to inform us that all of Jayson's blood work looked good and normal, and that his virus panel came back negative. I asked the doctor if the blood test would rule out meningitis. He said, "No, we still don't know about meningitis." Finally, the neurosurgeon resident walked in. I was hoping for a doctor, and not a resident, but this resident had seen Jayson several times a day every day during surgery. He was also the on-call neurosurgeon I talked to on the phone all four times. I felt pretty certain he lives at the hospital. Of course, this is the time that Jayson completely changes his mood from whiney and fussy to happy and giggly. He's smiling, wiggling, giggling, and babbling during our whole conversation, which made it difficult to explain to the doctor that my son hasn't been feeling well. Thanks Jayson. Perfect timing to get in a good mood.
It was business from the beginning, and I could tell the doctor was in a rush. I showed him Jayson's head, and he asked for me to identify the bulge I was concerned about. I showed him the white blanket with the leakage and he said, "Okay, this is different from what I pictured when I spoke with you. And that's a good thing. Has your doctor explained the whole process of the procedure we did on your son?" He grabbed a stool and had a seat. I felt so grateful he was going to make the time to really talk to me. He explained again the surgery process, but in more detail explained the opening of the dura and how it is patched. He explained how sometimes liquid can find its way through the patch if it is not sealed securely enough. He said it slowly pools and collects until the entire incision becomes one big bulge full of fluid. Not smaller bulges throughout the incision. He said that by the time the fluid is that backed up, it is under a lot of pressure and will not slowly drain as I have seen on Jayson's incision, but it will drip out just like a faucet. He said it would be a constant drip and we could easily collect the fluid. This was all information I did not know or understand before. I wondered if I had been worried all of this time for nothing, simply due to my own ignorance. He must have read my thoughts, as he interrupted my thinking to say, "No, I don't want you to get the idea that this is okay. Your son's wound and head is anything but okay. I am very concerned about this. And it looks angry, red and ugly. There are bulges and swelling, and there is some seepage. I'm not going to say that this isn't a CSF leak. This very well could be the first stages of a CSF leak. However, we have to ask ourselves, 'What are we going to do about it?' Well, if it's a CSF leak we open him back up and repair the patch. So, if we are questioning whether or not this is a CSF leak, should we go in now and open him back up? I'm not so sure we should. It may not be a leak. We typically wait until there is that constant drip so that we know that is the problem. I feel we are walking on a thin line right now. We are just a hair away from going back in, and we are not out of the woods yet. A fever can occur with a CSF leak, or it can occur with an infection. Or it could be something completely unrelated." I asked about tests for CSF leaks, including CT scans. He said a CT scan would inform us about hydrocephaly, which is also a concern, but Jayson wasn't showing enough signs. It would be a lot of wasted radiation. He said to test the fluid we would need more leaking and fluid to collect. I asked about the blood tests and if they ruled out meningitis. He said the opposite of what the other resident told me. Yes, they ruled out meningitis. He said this one blood test was an absolute negative. He explained sometimes there are false positives for infections, but the fact that Jayson's was a complete negative there is likely not an infection in his body, or the antibiotic is already treating it. He said it's crazy because one would typically look at Jayson's wound and think infection because it's so red and inflamed. He explained that an infection doesn't usually take over the entire incision. It starts in one place and slowly spreads the redness and swelling. It seemed pretty clear to him that Jayson had a reaction to the sutures or to just healing in general. It's difficult because we don't have a specific syndrome diagnosed yet, and it could be a symptom or part of his syndrome. He obviously struggles to heal, just as he did from his GJ tube surgery.
I showed the residents the pictures I organized, and he said this makes him feel even more comfortable about the decision to wait on surgery. He pointed out the things that clearly look worse in each picture, but he also pointed out some less obvious signs that Jayson's incision is slowly healing. He kept reiterating that he doesn't want me to get the impression he is happy with Jayson's head right now. Everything is telling him to be concerned. But we just needed to give it another day or two. He said he would not be surprised to see us back in the next couple of days, but then we would know for sure. He hoped, however, that it was a strange wound issue that would eventually resolve on its own. He expressed that Jayson was a complex kid from the beginning. He was difficult to operate on, difficult to stitch up, and now he's struggling to heal. He said he has never seen a wound look this ugly, and he doubts our doctor has either. He took a picture of the wound to show our doctor to confirm his thoughts. He once again expressed I was doing the right things, and he felt terrible that he didn't have solid answers for me. He told me watch Jayson like a hawk, and bring him in as soon as he starts to drip. He also informed me that my doctor was in clinic the following day. He was completely booked, but if Jayson wasn't looking any better or was looking worse, it would be an option for me to drop in on clinic.
I felt many emotions after this conversation: frustration, relief, fear, anxiety, irritation. No one knows why my son has a fever. No one knows why my son's head looks completely awful, is bright red, swollen and has a couple of bulges. No one knows when or if it will heal without more complications, or what exactly I should do about it. I'm doing the right things, he says. Well, I'm not sleeping, I'm worrying, I'm freaking out, I'm researching a lot of bad things, and I'm making myself sick over this. But I guess I'm doing the right things. I just have to keep on keepin on, and maybe we will be back. Despite my frustration, I appreciated this doctor so much. He was thorough. He really explained things to me, and he didn't make me feel rushed. He didn't make me feel like I was wrong for bringing him in, or crazy for worrying. He made me feel like I wasn't alone in worrying about my son. He gave me some options if things weren't better the following day. He confirmed my concerns, and he was honest when telling me he doesn't exactly know what is going on. There is a lot I admire and appreciate about this doctor. It doesn't change my frustration and fear, however.
I started getting Jayson packed up and ready to go home, now that it was 2:00 and we had spent nearly 5 hours in the ER. The discharge nurse came in, and she was just the cherry on top of the cake. I am tired. I am grumpy. I am frustrated. I am hungry. Please, do not send a clueless nurse in who knows nothing about Jayson or what we are even in the ER for to our room for discharge. She says, "So, it's good you get to go home huh?" No, not really. "Did you get all of your questions answered?" No, not exactly, but there's a lot of questions the doctors don't know the answers to. "Well, it's nice to know what it's not." Actually, we don't even know what it's not. So no, nothing is very nice, good or pleasant about the situation right now. She asked me if I wanted to leave the pulse oximeter on while she removed the iv. I told her yes. After she removed the iv, she proceeded to take off the pulse ox sensor and attempt to throw it away. I stopped her to tell her the pulse oximeter was ours. "Oh, that would explain why I haven't seen one like that before. I thought it was strange that you weren't hooked up to the main monitor." Yes, if you haven't seen it before, it's probably not yours. Poor girl. She caught me at a bad time. Just when I was feeling bad about my sarcastic attitude towards her, she said in her perky voice, "Well, have a nice day!" Okay. Pet peeve of all time here. There are certain places to wish someone a nice day. The Emergency Room is not one of them. There was nothing nice about my day and spending five hours of it in a hospital only to get no news which is equivalent to bad news. Seriously, do not wish me a nice day.
Jayson and I went home and spent the rest of the day cuddling, ready stories, and watching Disney movies. His mood was up and down. It was hard to tell if he was in a lot of pain, or just irritated. He got a burst of energy as we were putting him to bed and he started giggling for about 5 minutes straight at absolutely nothing. I hoped this was a sign that good things were to come, and that maybe we were about to turn a corner...
Thursday, January 17, 2013
Wow. It's crazy to think that we were discussing the possibility of opening back up Jayson's brain yesterday. He slept through the night without a problem. He woke up in the morning crying, but only because he wanted to get up. I saw there was a little fluid on his blanket, so I carefully inspected his head. Not a drop. Nothing. Bone dry. It was a miracle. The scabs were all solid, and there was no sign of a leak. The redness almost seemed to look a little better, and the swelling was definitely down. This was improvement!
Jayson spent most of the day happy, playful and energetic. He hit a couple of big post-surgery milestones today. We started working on physical therapy again today. His nanny came over while I was working from home and she did several exercises with him. He seemed to get tired quickly, but he was working hard. Mike and I later put him on his knees in crawling position. He held the position for 2-3 seconds before his arms gave out. It was amazing!!! Holding that position takes so much head control, trunk control, arm strength and leg strength. We haven't seen that from him before.
We also took another huge step, and gave him some food tonight. I was scared to do this. I was scared it might be too soon and Jayson wouldn't enjoy it or be successful, but I was more scared for personal reasons. I didn't want to be discouraged or disappointed. One of the biggest things I am hoping to get out of this surgery is Jayson's ability to swallow. I want him to be able to eat and swallow without aspirating, and eventually be able to get rid of his feeding tube. I was so scared that our first feeding experience post-surgery would be unsuccessful, and that I would get discouraged and think the surgery didn't help. I know for a fact that surgery is draining and that it's going to take some time to build up his strength, and that includes his ability to eat. But somehow, I knew it would crush me if he aspirated during his first feeding. Well, we experienced another feeding miracle. Jayson ALWAYS regresses in his feeding after a major illness or surgery. He fights feeding, doesn't open his mouth, doesn't swallow, cries, aspirates, spits out his food, screams, etc. Well today, Jayson was a rockstar. He anticipated the food and opened his mouth. He closed his mouth and swallowed. He made num sounds of excitement. He had lots of smiles. His little whines and cries didn't last, and were due to his tiredness. He turned his mood around and kept eating. He didn't pause, spit his food out, or shut down. He kept on going, until 1/2 of his baby food jar was gone. He did not gag or aspirate a single bite. It was remarkable. It was honestly a miracle. I feel so excited and encouraged to see what he will be able to do tomorrow!
I'm feeling more optimistic. I think we are turning a corner in the recovery of this surgery. I think that Jayson is going to make some good progress as a result of this operation, and that he is going to make great strides. I'm starting to feel hopeful that we might one day be able to cry tears of happiness during a swallow study and say goodbye to a feeding tube. I'm starting to think that Jayson may crawl this year, and may walk in the future. I think with the combination of the good results from this surgery and Jayson's determination, the stars are the limit! I feel so blessed to be a part of this little rockstar's journey!
You are such a great mom and Jayson looks great!
ReplyDeleteYou are an amazing mom!! And that sweet, precious little boy is so lucky to have you. I hope he continues to do better and better. That is so great about his eating! I also hope as time goes on you're able to find more answers.
ReplyDelete