Sunday, February 13, 2011

A very long road....

Happy day before Valentine's Day to everyone. I hope that this post finds you all well.

I'm up in the middle of the night yet again, contemplating and worrying about things...thank you insomnia. As most of you know, our poor Jack has been sick for a while, now. He has had more doctor appointments in the last month than I think he has in his whole life. It all started with a cough. He had it before Christmas but after the New Year, it got worse. I didn’t want to rush him into the doctor’s so by the time we did go to the office, the cough been around for the last 3 weeks. Jack was diagnosed with a sinus infection and was given Amoxicillin for it. During the worst part of the coughing, Jack was staying in bed with us and at night, I realized just how BAD his breathing had become. Now mind you, Jack has snored since the time he was born and he hasn’t always had the most even breathing at night. This was something entirely different. This was much worse than I ever imagined. Now being a nurse and having pediatric experience I have a lot of guilt surrounding this. Shouldn’t I have seen this a lot earlier? Should I have made a big deal about the small interruptions in his breathing that had been going on for probably 18 months? When you are a nurse and a mom, you walk a fine line. Some times a little knowledge is too much knowledge, but then you kick yourself for not talking about things that you think aren’t that troublesome when you find out they are. Guilt, guilt, and more guilt. Those small interruptions in breathing had led to full on choking and apnea at night. After one particularly bad night, Mike called me in the morning concerned. I called and made another appointment with the Pediatrician and Jack was referred to an ENT doctor. They would evaluate him for possible adenoid and tonsil removal. After leaving the pediatrician’s office, I called and set up the ENT appointment. The referral appointment was less than a week from when I made the appointment, so I was pleased at how fast we got into see Dr Erwin. When Dr Erwin evaluated Jack, he said that he thought removing his adenoids and tonsils would be a good idea, but he also thought that Jack needed tubes placed in his ears. That one took me by surprise. I had several sets of tubes when I was a kid and didn’t have any problems but that is a very different story for my brother-in-law. Billy had surgeries on his ears multiple times and during one of the surgeries, they broke one of the small bones in the ear. He is now deaf on that side. Needless to say, Mike was not happy about the idea of tubes. He still isn’t fond of the idea. I keep telling him that it’s not Navy doctors performing the surgery but I don’t think it matters. He is afraid of re-living what happened to Billy with Jack. I can’t say that I blame him. We scheduled his surgery as soon as we could which was Valentine’s Day. During the course of Amoxicillin prescribed for the sinus infection, Jack broke out into a bright red rash. The rash looked like one I had seen when I worked at Mary Bridge called HSP but it had been so long ago that I wasn’t positive. There was a concern that he might be allergic to the Amoxicillin, so we stopped the medicine and waited for the rash to go away. After 2 days off the medicine, the rash was still there. I was advised to come into see the doctor so back to the pediatrician’s office we went. This time he was diagnosed with HSP. Momma’s hunch was right. HSP is short for Henoch Schonlien Purpura, which in short is a vaculitis of the small blood vessels that can show up in a characteristic rash, joint pain and swelling, and can also cause complications such as kidney damage and bowel obstruction. These are rare complications but nonetheless, they could happen. So, away we left from the doctor’s office with a new thing for Momma to worry about. With his surgery coming up and the HSP on my mind, I was getting a little stressed but nothing I couldn’t handle. We were also hoping that this would be the last illness before surgery. It had to be right?!? You don’t know how wrong I was. The rash that Jack had came and left pretty fast which IS unusual for HSP but I thought that maybe he just had a very mild case. I wanted to make sure that the sinus infection was thoroughly treated so when we found out that the rash wasn’t a reaction to the Amoxicillin, we finished the last 3 days. No rash came back, so we were golden. A few days later, Jack complained of some abdominal pain and told Mike that he didn’t’ want to “go shopping”. That’s pretty unusual because this kid LOVES to shop. I didn’t think too much of it until a few days later when Jack’s daycare called Mike concerned because he hadn’t moved from the spot where Mike had set him down when he dropped him off. He also wouldn’t let anyone touch his stomach and wouldn’t stand upright. He also felt really hot and refused to drink anything. I was at work when all of this happened so Billy thankfully was able to pick up Jack from school and met me in Tacoma. We got into see another Pediatrician (mind you of all the doctors we’d seen so far were ALL different) and said that she has been seeing a lot of nausea and vomiting coming through the office but because of Jack’s history, they wanted to watch him a little bit closer since he hadn’t had any vomiting. Ok, sounds like a plan. They brought me a container for him to pee in so they could check his urine for blood, and then he vomited. Perfect. At least it was happening 5 days before surgery and not the night before. Glass half full, right?!? At that point, I was exhausted because I worked the night before and I just wanted to take Jack home. They gave him a dose of Zofran and away home we went to push fluids. Apparently the illness that was running through the office lasted about 6 hours so I assumed that was probably will happen with Jack. That would give him plenty of time to get over this bug and heal in time for his surgery. No problem. Then the fever started. Jack literally felt like he was on fire. His temps got up to 102.6. I thought that was awful high for a simple stomach virus, but nonetheless, I was NOT about to run back to the doctor. When Jack still had the fever on Friday (it started Wednesday) and with his surgery scheduled for Monday, I hung my head and called the doctor’s office, AGAIN. Thankfully we were able to see Dr Ayer who is Jack’s primary pediatrician. I also noticed that Jack was sporting yet another rash. It looked like Scarlet fever to me but I never was good with rashes. Once we saw Dr Ayer, he said that it looks like a strep rash. OK. He did a rapid strep culture and it came back blaring positive. My 2 year old has Strep throat. Awesome. I asked him if the rash together with the Strep infection was Scarlet fever and he said that it was indeed. Great. Now, he’s getting more antibiotics the Friday before his surgery. Come on, kid..... After leaving Dr Ayer’s office to pick up his medicine, I called Dr Erwin’s office to talk to them about if this would cahnge the surgery date. No doctors or nurses are in the office today. Huh?!? Then why is the freaking office open? Deep breath. The instructed for me to call Mary Bridge short stay and talk to them. After one of the nurses discussed it with an anesthesiologist, the verdict was if it were his son, he would wait but it’s my decision. Great. I talked to Mike and we had decided to reschedule the surgery. When I called to cancel the surgery, I talked to the nurse who said 'we can’t tell you to cancel the surgery, it’s your decision.' I WAS aware of that, thank you. She also said that we could wait until Sunday night or even Monday morning to see how he’s feeling. Yeah, let’s do that instead. I had this gut feeling that if we canceled the surgery, the little booger would be fine by Monday and I would be kicking myself until he actually had his surgery. Since my gut instinct was right 2 times before I decided to go with it on this one. I was finally able to talk to the on-call ENT and he said that we should go in on Monday knowing that there is a slight chance they might cancel, but he thought that Dr Erwin would still perform the surgery. We started the antibiotics Friday afternoon, got 2 doses in, and his fever didn’t come back. He’s starting to eat again and is drinking a lot. NOW, I will not say or even think that nothing else will happen before surgery. NOT GOING TO DO IT. I’m going to wait patiently with both fingers and toes crossed that his surgery will go on as scheduled. I am starting to get a little nervous about his surgery, though. I know it needs to happen but I’m just not looking forward to the recovery that it will bring. I know there will be a lot of pain and fighting about taking medicine, but this is what we do for our kids. I have to be tough, I have to be strong but I feel like I just want to curl up in a little ball with him and cry. I have an internal struggle going on that I think most parents who are healthcare providers deal with. On one hand you’re a nurse and you know that tough love is a must when kids are sick but on the other, it’s YOUR child. It’s your flesh and blood that you are forcing to take medicine. To hear him cough and gag because he’s being too stubborn to take the antibiotic without a syringe shoved into his mouth. It’s the baby that you cared for since the day he was born. You cried when you heard him take his first breath. It’s JACK.

You have to be TOUGH. You have to be STRONG. It’s what’s best for him and that’s all that matters. That’s ALL that matters.





I will keep you all posted on Facebook the day of the surgery and blog about it when I’m able. Yes, I will be taking pictures. Wish us luck for no more sickies before surgery and for a swift and uneventful surgery and recovery.