So, on the 12th, I took Jordy to Children's Hospital of Wisconsin in Milwaukee. It was a long day, but it's always great spending 1/1 time with each of my kids. Even though this one included a trip to the doctor with sticking, and not too fun at all for Jordy, we still enjoyed each other and laughed and shared a day one on one, which is very rare.We left at 4:50 a.m. and I really thought Jordy would go right back to sleep, but I guess the frigid -10 temperature outside gave him a good wake up! We rode and talked and laughed and ate an apple and orange each. We were talking about the stars and moon and how we would get to see the sun wake up. We kept watching the very bottom of the horizon brighten little by little. After a little span of not hearing Jordy talk,(we were listening to the radio and he was looking out the window) I looked over to tell him to keep a look out for animals in search of their breakfast, and whadda you know... he was fast asleep. A little disappointed that he didn't get to see the sky change before his eyes, and night turn to day, I smiled at his beautiful little face resting in peaceful sleep.(although he looked quite uncomfortable in his car seat with head cocked off to the side.) So oblivious to the beauty of beholding the sun rise.(after all, he is only 4!) But he really did miss out! It was glorious! It was hard to focus on driving because all I really wanted to do was stop and sit on one of those rolling hills and watch it ease its way up into the sky. So many shades of purple and pink, then turning to a blazing red and then so brightly orange it hurt my eyes even with sunglasses! I thoroughly enjoyed the drive down.
We were early to the appointment and even though I parked in the wrong parking deck and we had to walk about 1 mile in the hospitals tunnels, to the clinics, we were early enough for me to swing by the cafe and get another cup of java. We then headed over to the clinics and watched the construction crew as they braved the freezing temp and wind and started another day of building a new wing to children's hospital. Jordan loved it and we were so close he could see the controls in the crane. It was pretty cool and I enjoyed watching them, thinking of how complex and detailed the process was.
We met with the allergist and had a long conversation, talking of Jordy's history and him reviewing his records. I am so encouraged and excited with the attitude of his Dr. Having a doctor say,"This isn't acceptable and we will find a way to help him and make him better and more comfortable. We will." I've never heard that. So I was very encouraged..... until after his initial tests. They don't think he will ever outgrow these allergies to foods.(usually, they outgrow between 3 and 4... Jordy's almost 5) I'll know more after the bloodwork comes back next week, but he's pretty sure he won't from the reaction he still presents with the skin test. He has given us a few things to help with the environmental allergies and they're already helping greatly. I am eager to hear the results and have our phone consult as well. His allergist and dermatologist actually agreed on a few things. Thats not happened before. Anyways, the derm. appt. was next and Jordy was very happy to leave the allergists office after all the poking and prodding and sticking that he had to endure. I always feel so bad for him. So off we went to grab a quick lunch and head over to the next clinic. What a huge amount of information I was given.... alot of which I will think about and research on my own, some helpful and some, well.... weird. So the one thing both Dr's agreed on was that Jordan's missing a molecule in his skin that produces oil and that his immune system is hypersensitive which means he's allergic to his own staph (that everyone has on their body) and because his system is hypersensitive, he frequently gets skin infections on areas of broken skin. It is an ongoing cycle. I asked questions gallore...... Why does he scream when I moisturize his skin and sometimes even just getting washed in the bath? Because he's missing his top layer of skin due to scratching and his skin dying and sluffing off because of the ongoing inflammation that's caused by the staph infections and the lack of protection from his body not producing oil. Why does his skin(especially hands and feet) feel rough, calloused, tough and thick no matter how much they're moisturized? The underlayer of his skin , that is now exposed(it's supposed to be protected by his now missing top layer of skin) is thickening and overcompensating in order to protect his body. Hence the thick skin and the ultra sensivity to lotions and soaps and even foods. He's missing his protective barrier basically. So what can we do? "You're going to think I'm crazy but...." Did I lose her there and or was it in the next 5 seconds when she said....."he needs to have a bleach bath once a week." BLEACH? So he's missing his protective layer of skin and his skin already burns in regular baths and with lotions and you want me to put bleach in his bath???? I wonder if she knew what I was thinking..... well she went on to tell me why....."we need to break this cycle. We need to kill the staph on his body once a week......." I think I tuned out again.....Of course bleach would kill the staph... it's toxic.. it's BLEACH lady!.... it does make sense that it kills the staph. Do I think it will help him? Not sure. Gonna try it? Nope.... probably not. I know its a diluted amout- 1/2 cup to a bath, but its still much stronger than chlorinated pool water and to make things better, after the doc left the room, her nurse said..."Just use 1/4 cup." That's reassuring having the nurse give a different opinion on, what seemed to me, to be a controversial treatment, hence the strong instructions to supervise the bath 100% of the time to insure none is ingested, to rinse him thoroughly with clean water and to moisturize within 3 min. of getting out of the bath.
She did give me good instructions for when to do this or use that on his skin in much better detail than any previous derm. we've had in the past and for that I am thankful. I was ready to leave that appointment however and get the bloodwork overwith so we could head home. It had been a long day for both of us. Jordy, once again, was very brave. They took so.... much blood I couldn't believe it all. I thought I'd have to carry him out but we sat for a minute and he was fine. He was very cooperative which made both the nurse and I very happy.
So we finally left the hospital and headed to get Jordy's treats... a happy meal and a stop at Cabela's...a hunters paradise full of fish aquariums and many, previously alive, stuffed animals. We both had a fun time. Finally in the truck and on the road again, Jordy didn't last long before he was out. So tuckered out. I knew it was going to be a long trip home for me. The weather was terrible with heavy snow and wind that made the roads very hard to drive on and I was already very tired from the trip down and the mental energy it took to absorb all that new info and trying to process it fast enough so I could ask questions. As I white knuckled my way up the highway, I was thinking about the day, all the information we had received, all the things to look into and discuss. After a few minutes of feeling overwhelmed by it all, a feeling of thankfulness washed over me. Thankful that I have really healthy children. Thankful for this little guy asleep beside me that a few years ago even reacted to eating things like chicken, bananas, milk and wheat. Thankful of how much easier his allergies are to manage and thankful that in the scheme of health issues, we have a cake walk. I thought of all the familes we met and saw that day. Seeing so many extremely sick children and their parents at that hospital really humbled me and made me so incredibly grateful. I hurt and felt sick for them and I couldn't stop looking at Jordy play, so healthy and happy. I hugged him so many times, thanking God while I held him and praying for those parents and children in that eye clinic, and the people a few doors down from our room where the little guy was receiving some sort of infusion and was really sick, and the little girl who's dad was carrying her down the hall with what looked to be 10 or more IVs in her little tiny body. I felt so grateful to be there for only allergy testing. Thankful..... so thankful for my childrens' health. I always come away from these appts with a renewed perspective and I know its from seeing all of those hurting families and the harsh reality of issues thay are facing in comparison to ours. It's a reminder to me of how precious our health is and how often I take it for granted, how each day needs to be cherished and how thankful and blessed I am to hold each of my 4, truly healthy children every day.
She did give me good instructions for when to do this or use that on his skin in much better detail than any previous derm. we've had in the past and for that I am thankful. I was ready to leave that appointment however and get the bloodwork overwith so we could head home. It had been a long day for both of us. Jordy, once again, was very brave. They took so.... much blood I couldn't believe it all. I thought I'd have to carry him out but we sat for a minute and he was fine. He was very cooperative which made both the nurse and I very happy.
So we finally left the hospital and headed to get Jordy's treats... a happy meal and a stop at Cabela's...a hunters paradise full of fish aquariums and many, previously alive, stuffed animals. We both had a fun time. Finally in the truck and on the road again, Jordy didn't last long before he was out. So tuckered out. I knew it was going to be a long trip home for me. The weather was terrible with heavy snow and wind that made the roads very hard to drive on and I was already very tired from the trip down and the mental energy it took to absorb all that new info and trying to process it fast enough so I could ask questions. As I white knuckled my way up the highway, I was thinking about the day, all the information we had received, all the things to look into and discuss. After a few minutes of feeling overwhelmed by it all, a feeling of thankfulness washed over me. Thankful that I have really healthy children. Thankful for this little guy asleep beside me that a few years ago even reacted to eating things like chicken, bananas, milk and wheat. Thankful of how much easier his allergies are to manage and thankful that in the scheme of health issues, we have a cake walk. I thought of all the familes we met and saw that day. Seeing so many extremely sick children and their parents at that hospital really humbled me and made me so incredibly grateful. I hurt and felt sick for them and I couldn't stop looking at Jordy play, so healthy and happy. I hugged him so many times, thanking God while I held him and praying for those parents and children in that eye clinic, and the people a few doors down from our room where the little guy was receiving some sort of infusion and was really sick, and the little girl who's dad was carrying her down the hall with what looked to be 10 or more IVs in her little tiny body. I felt so grateful to be there for only allergy testing. Thankful..... so thankful for my childrens' health. I always come away from these appts with a renewed perspective and I know its from seeing all of those hurting families and the harsh reality of issues thay are facing in comparison to ours. It's a reminder to me of how precious our health is and how often I take it for granted, how each day needs to be cherished and how thankful and blessed I am to hold each of my 4, truly healthy children every day.
