Eczema,  National Jewish Health,  Titus,  Uncategorized

National Jewish Health Pediatric Eczema Program, Day 10

3-2014-02-011-Titus Day by Day1-001Last night Titus slept well again. He woke up once, but fell back asleep on his own. I woke him up at 6:45 to start our morning routine. His skin looked good this morning, and even his face was better. Last night we had tried no head wrap, and that seemed to work well. We made it to the hospital by 8:45, after his bath and creams.

Today we had nurse Anna. First thing was to get all his vitals and weight. He even stood on a big boy scale for us. We fed him some breakfast, and Anna got us started on the first food challenge of broccoli right away. He didn’t like the broccoli too well, but he passed it just fine.

Dr. Dutmer came in and gave us our Home Management Plan so we could read over it before our discharge meeting this afternoon. This plan goes over all of Titus diagnoses and allergies and describes the home care they recommend in detail. There are about four different plans for skin care, depending on how flared the eczema is. There are also recommendations for supplements, follow up tests, etc. This packet also includes all the details of Titus’ allergy testing and food challenges. The foods are broken down into foods that he is eating, foods that he successfully challenged, foods that are likely ok (we can try at home), foods that could be challenged in the future, and foods that should be avoided.

After the broccoli food challenge it was lunch time, and Titus was hungry! He was also tired, and fell asleep right away after lunch.

At about 1:30 Dr. Dutmer and Dr. Rabinovitch came in to have our discharge meeting. We talked for about 40 minutes. They answered all of our questions and assured us that we should call any time if we have more questions when we get home. We thanked them a lot and gave them a thank you card for all of the staff. Titus also thanked them over and over with his baby sign language. They also thanked us for being so involved with the whole process. They told Titus they were going to miss his smile. 🙂

Next we had the beef challenge. Titus had been eating beef all along before we came here, but some of the allergy testing showed a possible reaction. He passed this challenge just fine, and actually enjoyed eating the beef. This challenge was actually a little shorter since they weren’t anticipating a reaction. We were done with the entire challenge by 5:15.

Throughout the day, different staff members came in to say goodbye. Sometimes it was hard to hold back tears. These people have helped Titus come a long way from when we first got here. I think Titus’ good natured attitude, smile, and baby sign language really left an impression on them. We are thankful to have such a happy boy, even through the tough times.

We are also so thankful for the opportunity we have had to come here. It has been very nice to work with doctors and nurses who understand this condition as well as what we have all been going through. It has been wonderful to see the way God has worked everything out.

We give God thanks for all he has done and is doing to help Titus. Special thanks to everyone who gave financially to help us get here. Also thanks to the family of Vitaly and Lena Voyevoda for their hospitality and care. And last but not least, thank you to all of the staff at National Jewish for their kind care, for answering all of our questions, and for teaching/showing us how to help Titus feel better. Thank you all!

We don’t know how much the final hospital bill will be, but we trust God will take care of it. We definitely have a good start on it (if not have it paid in full) through Titus’ fundraiser. We will update when we find out exactly how much it will be.

Titus is so, so much better than when we came here. He can now play by himself and feed himself without us constantly having to watch him and stop him from scratching. He can basically sleep through the night (praise the Lord!), and his skin is looking much, much better. He is also very happy and full of energy. And now he and Mariya can eat about 23 foods instead of just 14, and there are other foods that are most likely ok.

We still do have struggles we will have to work through. There is really no cure for eczema (at least in conventional doctors’ opinion) and we are just managing the condition at this point. Please pray for complete healing. Often these kids will get better as they grow, or even grow out of it completely. We will be working on weaning him of the medications, as directed by the doctors. Hopefully the baths and lotions will be enough to keep him hydrated and the skin healthy, but we now know what to do if he flares. The most important thing is to stay on top of it. Usually foods are tolerated better if the skin is in good condition. Also, we need to avoid infection.

That said, we will obviously need to keep doing 20 min baths and wet wraps. We are down to two baths and one wet wrap (only on arms and legs) each day. Eventually we should be able to get down to one bath a day, with no wraps.

We are still swaddling Titus at night a bit, as he is still sometimes a bit itchy when he is tired or upset. We also still keep a watchful eye on him while he plays, for the same reason, and usually have two of us to change his diaper. Overall though, the itching is 99% better. Itching does make the condition worse, so we have to minimize it as much as possible. Otherwise it’s a viscous cycle.

We were hopeful that he would be able to eat even more foods after this program, but we are very thankful for the foods we did gain. Here is an updated list of the foods Titus (and Mariya since he is nursing) can eat:

  • Apple
  • Pear
  • Banana
  • Grape
  • Summer squash
  • Carrots
  • Sweet potato
  • White potato (new)
  • Tomato (new)
  • Kidney and Great Northern Beans (new)
  • Corn (new, but we’re a little nervous about it)
  • Broccoli (new)
  • Beef
  • Pork
  • Chicken
  • Salmon (and likely any seafood)
  • Rice (new)
  • Butternut squash (new)

We will also have to be cautious of environmental allergens. Often kids outgrow the food allergies and grow into the environmental allergies. Right now he only shows slight allergies to Oregon Ash trees and to chicken feathers. We will be doing nasal washes to help with this as well.

The doctors would like us to find an allergist who will do food challenges and work with us and Titus. Please pray we find the right one. Also pray for wisdom as to which doctors we should work with in our area back home.

Please pray for traveling mercies as we fly back home tomorrow.

Thank you all for your prayers and support.

One Comment

  • Rachel post

    We’ve been reading and watching your posts regularly. Praying for you. What an amazing journey. Titus looks so much better and so happy. What a doll. I’m sure the staff just loved him. Praying for your continued progress and for wisdom for you. Love, Rachel and Doug

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