15 Reasons Why I Despise Eczema: In no particular order
1. My kid is miserable 2. The constant itch 3. Sleepless nights; some night he wakes up itching and is sleep deprived 4. Constant supervision so he doesn't scratch until he bleeds 5. The rude looks and comments 6. Less than helpful advice from others, some well intentioned, some not so much 7. Wet pajamas at bed time (also know at wet wrapping) 8. Prescription ointments 9. Ruined clothes (his and mine) and bedding from oily ointment stains 10. Bloody sheets from night time scratching 11. Chasing "miracle" ointments, lotions, vitamins and supplements, diets, etc. 12. Costco size bottles of Benedryl & Tylenol 13. Countless trips to the school nurse for more lotion 14. Long sleeves and long pants year round 15. Bath water stings his eczema skin
October is eczema awareness month. It is also breast cancer month, Downs Syndrome month, microcephaly month, sensory processing month, dwarfism awareness month and probably many more.
While all of those are noble causes, our battle lies with eczema. There are thousands of kids who suffer with it. Some worse than others. Some can be controlled with over the counter medications, some get infected and require hospitalization and/or antibiotics, some look like sunburns, some look like patches of raised and excoriated skin.
Six and a half years ago if you would have told me that in 2013 Milo would be trach, vent, g-tube free and thriving in his main stream 1st grade classroom, but would have eczema, I would have been ecstatic! Now don't get me wrong, I am very grateful of how far he has come but there are days and weeks I would trade the eczema for having his trach. I know there are people gasping at the thought but let me explain. Eczema affect him every minute of every day. He is itchy and rashy. It makes him irritable and difficult to sleep. People are starting to look at him and shy away because they don't want to catch whatever it is that he has. The palms of his hurt and the bottom of his feet can have open sores which make it painful to walk. Honestly Milo's trach was less noticeable than his eczema, he rarely required suctioning, he could wear a cap or a Passe-Muir Valve that would allow him to talk. The trach did limit his ability to play in water and sand but that is about it.
In a few weeks we will be embarking on a new journey with National Jewish Health to help control Milo's eczema. The hope is that we can get his skin clear, learn how to keep it that way, and quickly control flair-ups that will inevitably happen. This day program is every day Monday-Friday for two weeks. The first night will be spent in the hospital and from then on we will be able to come home for the evenings and return first thing in the morning. Missing 10 days of school was a big consideration but I was able to schedule the time over his Fall Break so should only miss about 3 days of school. I have had mixed feelings about participating in the program and how effective it will be. At this point, we have nothing to loose and everything to gain.
The last 5 weeks have been overly filled with doctor appointments! All in all Milo is doing well.
Milo had his yearly echo the beginning of September. Laying still is not one of the Milo excels at, but he did pretty good for the echo this time. All his heart pressures look good, the blood flow across his pulmonary artery stent looks good, and he doesn't have any other issues, so we don't have to see her again until Fall 2014.
The g-tube is history and the hole has been closed! Unfortunately Milo spent all summer with a leaky hole in his belly. The very end of August he had surgery to close the hole. His skin seemed to reject the sutures and he had a little infection so he ended up on antibiotics with an ugly & swollen looking scar. Good news is that the scar is looking better and has just a tiny scab now and the swelling is much less. For the first time in over 6 years there is nothing leaking out of his stomach onto his shirt :0)
Milo had his first dentist appointment. He cooperated better than I though he would but it was clear he couldn't tolerate a proper cleaning. While his g-tube hole was being closed he had his teeth cleaned and x-rayed while under anesthesia. The dentist was surprised at how well his teeth were doing, no cavities! His top and bottom front teeth are a little loose. Less than a week later his bottom front permanent teeth pop through behind his baby teeth. Guess we'll be seeing the dentist again since his baby teeth really aren't any where close to falling out by themselves.
We got to see Dr. Deterding the first part of September as well. His lung sound good, his steroids were reduced and she wants him to get a flu shot. There is a strain of flu in China (just a matter of time before it's here) that is resistant to all the anti-viral medications so that is a concern and a good reason to get the flu shot this year. At the same time as his g-tube surgery, she did a bronchoscopy that looks deeper into the lungs. He still has narrow and floppy areas all throughout his lungs. This traps normal secretions so infection is a concern. They did suck out all the goo they could and cultured some. Luckily nothing of significance grew. She did recommend he use his airway clearance vest at least once per day, every day and twice per day if he is sick. We had just been using it if he was sick. He also continues to get Pulmicort once per day. They did a cortisol blood test to make sure his adrenal glands were working after being on Prednisilone for so long. Good news is that his body is doing it's job and he is no longer on any oral steroids!
Dr. Kelley also jumped in on surgery day and did a direct laryngoscopy & bronchoscopy. She was pleased with how well his trachea has grown. His airway is the size that will sustain an adult male at sea level! Of course at our altitude it needs to be bigger but there is no reason why it shouldn't continue to grow. If all else fails I guess he lives at sea level as an adult. His scar tissue has remained stable. She is pleased with his progress and said she doesn't need to see him again for about 5 years!
Milo's eczema has continued to be an issue. The dermatologist just keep handing out more and stronger steroid ointment. We are going to National Jewish Health the end of October to participate in a two week day program aimed at healing his eczema and helping to keep it that way.
Last week Milo saw two different allergists. The first was his regular allergist where we got results from blood tests that were done while he was having surgery. The numbers came back extremely elevated. His IgE was over 19,000 while normal is under 50. All the individual rast tests came back elevated as well. The most likely reason for this is his eczema. When eczema is bad IgE is elevated. He refered us to another allergist who is one of the top food allergy doctors in the nation. Dr B. just happened to be having a clinic at Children's last week and were able to get into to see him. He wasn't all that concerned about the high IgE but definitely want's Milo to be in the day program at National Jewish Health. His allergies will be addressed along with the eczema. Blood test will be re-done, skin test will be preformed and hopefully some food challenges as well. I am looking forward to figuring out this piece of the puzzle.
Milo has his annual well-child check-up this last week as well. Everything checks out well and much to his relief Milo didn't need any immunizations. The flu shot is available quite yet. The only disappointing thing is that his primary care provider, who is a nurse practitioner, is retiring the end of October. We will miss seeing Glenda, she has been very good to Milo over the years. Now we have to choose another doctor to be his primary care provider.
I'm definitely done with doctor's offices for a little while and am glad to have a three week break before the day program for Milo's eczema starts!
Summer 2013 was busy, busy, busy! We had so much fun with family. They visited us, we visited them. I didn't have much time to update the blog this summer. Oh yeah, my computer died too, that didn't help any. My camera phone started to act up so I didn't get as many pictures as normal either.
Here's a recap of our summer!
Dylan came with Grandma for a fun filled week.
We went to Ceramics in the City. Dylan painted dolphins and Milo painted a cow penny bank.
We went to Build-A-Bear, Panera Bread (or Panana Bread as Milo calls it) to eat lunch & Chuck E. Cheese to play.
We saw Monster's University on opening day and had dinner at Casa Bonita.
When my backyard exploding paint art project failed, we just painted with brushes, hands & feet.
And we can't forget Water World!
We went to Alamosa for the 4th of July. We saw the parade and had a big BBQ with our family. Unfortunately due to all the wildfires, there were no fireworks this year. Just some poppers that were pretty fun.
Milo had some tree climbing fun. That boy is a monkey!
A pile of cousins!
Alisha came back with us. We stopped in Pueblo and visited the zoo.
I had never been to the Pueblo Zoo before. It's a nice little zoo and was a great break in the trip. I had hoped to go to the Royal Gorge on the way back, but it burned down in a wildfire just a few weeks before.
We ended up back in Alamosa just a week later for my grandpa's funeral.
My brother and his kids came for a fun weekend. We went to the Wildlife Sanctuary in Keensburg.
Lions, Tigers & (Grizzly) Bears, Oh My!
We got caught in a huge rain storm, luckily we were in an enormous tent at the end of the walkway. The animals were more active after the storm because the temperature cooled off.
The ground was completely dry before the storm.
So many good pictures, maybe I'll have to do a post later about this wonderful place.
It was then Brett's week to stay for some fun. My camera had an issue so we didn't get any pictures :(
We went to Boondocks, Dave & Buster's, saw a movie, went to a trampoline center and did a little shopping. And, of course, Water World!
Just before school started again we ventured down to Colorado Springs. I took advantage of a photography special by Ashley Photography and had Milo's pictures taken. They turned out wonderfully.
These photographs are copyrighted, do not print or download or use for any other reason with out written consent. Thanks!
After that we headed to the Cheyenne Mountain Zoo. We fed the giraffes and an elephant named Lucky.
They have a great new African animal exhibit with some wonderful statues to play with.
My brother Chad got married the very last day of August. The wedding was a small family affair in the mountains. It was a beautiful ceremony in a gorgeous setting. I gained a wonderful sister-in-law and an adorable 4 year old niece!
September is shaping up to be a busy fun month too, details to come!
It's hard to believe that Milo is already in First Grade!
I was honestly dreading the school year. Kindergarten was difficult.
We didn't find out who his teacher would be until the day before school started. Ugh, no time to prepare her for Milo or Milo for her. I wrote down some quick "Milo Tips" and handed them to her when we met.
I dreaded the first day, the crying, the not listening....
He walked right in with his class, no problem.
He had a great day.
He had a great week.
He had 2 good weeks.
We went to Back to School Night, his teacher talked about how well he listened, and focused, and did his work and rarely threw a fit and if he did it was tiny.
Wait, are you sure we are talking about my child?
His teacher is great.
She is calm, quiet, and kind yet firm.
Her classroom is organized and visually pleasing.
He has an assigned coat hook and desk, he likes consistency...
I'm sure that helps him.
The next day, "we are having to schedule his bathroom breaks so he can be supervised, he wanders the halls, is that OK with you?"
Ahhh, there's my kid.
"Sure sounds very reasonable"
He took school pictures this year, goofy grin and all.
Glad I only bought a few.
He refused last year.
He's hungry when he gets home.
He eats all of his lunch at school.
No reports of lunchroom antics this year.
He missed several days for his surgery plus the holiday vacations ran together.
Crying and refusal to go to school for 3 days.
"He's having a hard time transitioning in the mornings"
Yup, that's my kid....
Luckily he has returned back to the kid willingly walking into school
and exclaiming "I had the best day ever!"
when he walks out of the building.
I expect there to be hard days but am relishing in the good days!
...sorta. Milo had surgery to close the stoma (hole) from his g-tube. Good news is that he is no longer leaky. Bad news is that sutures and Milo do not get along well. After the steri-strips came off he ended up with a suture abscess. His belly looks icky and he's on antibiotic to clear up the infection. When it heals I'm sure it won't be the nice incision line it should have been but oh well, at least he isn't leaky! He has been eating more now that he has healed and everything stays in his stomach where it belongs.
Before surgery, the med are working Not wanting to wake up and very grumpy when he did
Along with his g-tube closure Milo had his teeth cleaned and x-rayed. He did way better than I though he would at the dentist's office but no way they were going to be able to get his teeth really clean or his molars x-rayed. The dentist was quite pleased with the health of his teeth, no cavities, and less plaque and tarter than expected from a g-tube fed kiddo with an oral aversion for years. His front teeth (top and bottom) are a little wiggly and 2 weeks after his cleaning his bottom teeth popped though the gums...behind his baby teeth. Ugh, I guess there is more dentist time in the near future.
At the same time he had both a direct bronchoscopy with his ENT doctor and a flexible bronchoscopy with his pulmonologist. The direct bronchoscopy looks at his trachea from the mouth to the lungs. His ENT was very pleased with the size of his trachea, it is the size an adult male would require at sea level. His scar tissue is not causing any more of a problem than normal. She was so pleased we do not have to go back to see her for about 5 years, or when he has his adolescent growth spurt. This is totally amazing for the kiddo that was being scoped every day as an infant. His pulmonologist did the flexible bronchoscopy which is where they look deeper into the lungs with a smaller camera. No big surprises but really no great improvement either. He continues to have many areas of narrow passages and floppy passages. Because of this he has an accumulation of mucus in his lungs. She sucked out as much as they could and cultured it to make sure it wasn't growing anything funky. Because of all the mucus his doctor recommended we use his airway clearance vest every day rather than just when he is sick.
He also had blood drawn while he was under anesthesia for several lab tests. The first was a cortisol level to make sure his body was picking up the slack while we weaned him off the steroids he has been on for the last several years. Good news...his lab value came back normal and he no longer is on oral steroids for his airways! He also had allergy levels done. I have the results but his appointment isn't for another 2 weeks. Lets just say they weren't the results I was hoping for.
Yesterday was Milo's annual cardiology appointment. He has an echocardiogram done and was amazing cooperative for that. Laying still is not one of his strong points but he did pretty well. The pressures in his heart are all normal (for the 2nd year in a row) so the stent in his pulmonary artery is working well. The area in which his aortic coarctation was repaired looks great too. He doesn't need to see her for another year!
That takes us to his eczema. It's horrible most of the time. He sees a dermatologist but all they seem to do is give him more and more and stronger steroids. Toward the end of summer break I remembered the Atopic Dermatitis Day Program that is at National Jewish Health geared toward helping kids and their parents get the kids eczema under control. I was told about the program about 4 years ago but kind of blew it off at the time. Milo had been to National Jewish a couple of times and I can't say that I was very impressed either time so I wasn't sure this program would really work, and it's long... up to 2 weeks of all day, every day treatment. That's a lot of school to miss for something I wasn't sure would be very beneficial.
A not so good eczema day, lots of redness and dryness A rare good eczema day!
I found a Facebook group of Eczema Parents that had nothing but good things to say about this program. People were traveling from all over the country to participate. I was intrigued. I asked some questions and followed one family's journey while they were in Denver. I decided that I needed to give it a try. Within 10 days of my initial phone call we were able to schedule a date. I chose to have Milo go during his fall break from school to minimize the number of days he would miss. I'm guessing our scheduling went so quickly because Milo was already a National Jewish patient (even though he hadn't been for years), his allergist at Children's primarily works at National Jewish and they have electronic access to all his medical records from Children's Hospital. My understanding is that there will be lots of baths, wet wraps, lotions, allergy tests and challenges. We should come away with a better idea of what he is truly allergic to as well as clearer, less itchy skin for my little guy. I'm sure it will be a lot of work but we should have a good plan in place by the time he is finished with the program. I hope to be able to update this blog several days during the process. I appreciate the knowledge I gained from other families and hope to be able to pass some information on to others as well.
Well, that's about it on the medical side of things. Next up...a First Grade update!
That's how long Milo had (yup, past tense) his g-tube.
Day of Surgery 2/9/2007
He was just over 2 months old when I finally gave in and let them place a g-tube. I resisted until it became clear he could not safely drink from a bottle. He tried but the formula ended up in his lungs. The only way to get him home was to put in a g-tube. At the same time the surgeon preformed a Nissen Fundoplication to prevent him from refluxing. The type of g-tube that was placed is a button style so at least he didn't have a long tube to pull on when he wasn't eating.
In those days, Milo never did anything the easy way. There were complications from surgery. Just 12 days later his small intestines pushed their way thorough the incision so back to surgery he went. This time the surgeon placed retaining sutures (the red in the picture below) to keep him closed up and allow everything to heal.
Over the last 6 years I had a love/hate relationship with that g-tube. He clearly needed it to survive but it also caused other issues that took some time to figure out. Gagging and wretching were the worst to watch. He was so miserable but finally I figured it out and we got the right medication to stop that. Formula was another issue, he was allergic to nearly every kind. Eventually I learned to blend up real food and put that through his tube.
Learning to eat...
Who knew learning to eat would be such a challenge. Not only swallowing but chewing too. Not only chewing food but learning to put toys in his mouth and chewing on them is an important developmental step. Speech uses many muscles that are normally developed when eating. Textures of food and toys was another hurdle he needed to overcome. He still has some texture and flavor issues but has overcome most of them. It took years but he finally learned to talk and then to drink and then to eat and then to drink with a straw.
Day of Removal 6/5/2013
Not very excited about having his picture taken
The removal process was pretty easy. Feel free to skip this part but I thought some people might be interested. First the doctor said that most stomas his size (18F) that have been there for so long don't close on their own but we could try. The worst that could happen would be to put the button back in and schedule a surgical closure. Since his tracheostomy stoma closed up so quickly I decided to give it a try. The plan was that if everything he ate came back out the hole to just put the button back in and give them a call. If it only leaked some but was manageable to give it 4-6 weeks to close and if it was still leaking to call for surgical closure. She just deflated the balloon and pulled the button out, applied some stoma adhesive then a mixture of desitin (to prevent burning his skin with leaking stomach acid) and stoma adhesive covered with a 4x4 folded in quarters and covered with tegaderm. It looked like he had a golf ball stuck on his tummy. He was afraid it would hurt so there was some crying and squirming involved. The first dressing didn't last too terribly long, maybe 5 hours or so. It came off so I was able to get a good look at the stoma. It was already closing quite a bit and was leaking just a little. Not that I even considered it, but a button would not have gone back in without great difficulty at this point. I applied more desitin and gauze and taped it down with paper tape. The desitin from the first time had squished out all over his belly so I had to use lots of tape to find clean skin for it to stick to. I ran to Wal-greens and picked up some large tegaderm for the next day. The next morning (approximately 19 hours after removal) I removed all that tape and gauze, it had only leaked a tiny bit. I cleaned his skin, applied just a tad of desitin and a 2x2 then the large tegaderm. This looked so much better and was much more comfortable for him too. He hasn't complained a bit about his tummy hurting or it being uncomfortable, well except for removing tape!
48 hours later....
Not everyone has 2 belly buttons!
Here's what his stoma looks like just over 2 days after removal. The 2x2 gauze was definitely wet and there was an air bubble under the tegaderm. It's a little white from the desitin. This afternoon he leaned on the edge of the kitchen table and looked a little surprised then said "My tummy just farted". I laughed, can't say I ever heard that before :0)
Milo has only ever known life with a g-tube, it was part of him. He was very emotionally attached to it. About a year ago I made the comment to him that if he kept eating well we could take his g-tube out, he quit eating all together. It took me a few days to make the connection. I backed off and let him regain the confidence to eat and told him that he could decide when to remove it. His pediatrician said it was very common for kids to react this way. This year I knew it was time so we started talking about taking his tube out. Every time I started a conversation about removing his tube he would cry, finally he sobbed "but I will miss it". I came up with an idea, a compromise of sorts. I told him we would put it in a little box so can look at it and hold it anytime he felt sad because his button was gone. He liked that idea and was ready to remove the tube right then and there but I made him wait for clearance from his pediatrician. I found a small clear box normally used for displaying golf balls at The Container Store. It is just the right size for a button, and most importantly, hard to get open. It is the perfect size to hold on to but his little hands can't open the box and loose the button. As soon as the g-tube was removed and he was bandaged he wanted to put the tube in his box. I did bring the box with us as well as a new button so we decided to put a nice new clean button in the box since the one that came out of him was pretty yucky. He knows right where his box is too :0)