September 13, 2007

Improving Conditions

Again, fromHeather's blog:

The most important thing - Jackson is a new kid! I was looking at him today at lunch and noticed a brightness in his eyes. It is the only way I know to describe it. It sounds weird, but his eyes sparkled and I couldn't get over how much better he looked in his face. The rest of his body looks great too. He still has some redness and eczema on his legs, feet and hands, but he has cleared up everywhere else. The other change - he doesn't itch constantly. We sat through dinner last night for almost 45 minutes and he never scratched once. It has been a long time since that has been a reality for him.
The doctors decreased his soak/seal to twice a day this morning and eliminated one of the steriod creams. We met with the social worker again this morning and he taught Jackson some breathing techiques to use when he is itching and feeling bad. He taught Jackson one technique yesterday that Jackson is already putting into practice. He taught Jackson to put something (stress ball, stuffed animal, etc.) in each hand when he felt the urge to scratch. Wednesday a.m. we were working on his homework and he said, "Mom, I need my baby alligator (beanie baby)." I told him that we weren't playing, we were doing homework. He replied, "But, I need it. I am going to itch." So, he did homework with his pencil in one hand and baby alligator in the other. He never scratched. Way to go, Buddy!
The social worker also talked to me about working with the school district on a 504 Plan for Jackson. It is essentially a plan that acknowledges Jackson's health issues as a disability and requires the school district to accommodate Jackson when he needs support during times of illness. That support might be - allowing him to hold his two stress balls/stuffed animals to prevent scratching, giving him time out to do his breathing exercises, or giving him more time to complete work when he is having an episode of allergies/asthma/eczema. We will be working with the school counselor, his teacher and the social worker on that when we get home.
In some ways, today, I feel like we have let Jackson down in the last year. The solution to his major problem - eczema - is discipline to keep the skin hydrated, sealed and medicated when necessary. We haven't done his lotion after every bath. We tended to wait until he was in a flare to treat it. This trip, I have learned, the key is to keep up the routine, even when his skin looks good.
We finished all of our daily appts. at the hospital today at noon and had the afternoon off. We headed for the Denver National History Museum. Jackson loved it, especially the Space Odyssey exhibit. He wants to go back tomorrow. Tonight, we hit the pool, worked on more homework and we have now rented Meet the Robinsons. We have had a little relaxation time and that has helped our moods, immensely.
We are planning to come home Sunday. I expect the allergy/skin docs to release us Friday. The social worker wants to meet with us Monday and Tuesday, for one hour each day. But, the cost to change our flight and extend our stay is more than we are willing to pay in exchange for two hours of treatment. We will followup with a behavioral specialist when we get home. Plus, we are ready to get home and Damon and Reid are ready for us to come home. (BTW, yes we are)

God's Blessings

This is taken from Heather's blog posts.

2 Plane tickets to Denver - $512
Being stuck in isolation and ignored by the nursing staff for hours- $Lots of money charged to our insurance company
Seeing God's painted sunset over the Rocky Mountains - Beyond Priceless
Jackson and I arrived in Denver yesterday afternoon, made it through the airport, to the rental car and to the hospital, all in good time. We were cruisding. We met with four doctors Monday afternoon and they determined Jackson needed to go into the Day Program, rather than the outpatient program, meaning we would spend all day at the hospital rather than just come in for appts. They also determined he needed to be admitted for one night to start the intensive soak and seal therapy on his skin, give him some medication to sleep, and monitor his oxygen levels for the night. Not a big deal. We did that the last time we were here. We also had to be isolated due to Jackson having MRSA bacteria on his skin. This bacteria is not a danger to people with normal immune systems, but it is a deadly to others with compromised immune systems - ie people in hospitals. We were prepared for isolation - came prepared with lots of entertainment.
The doctors have been great and were very good getting us the meds we needed, getting him set up to start the soak/seal, answering questions, etc. Then, there was the nursing staff. Let's just make this story short - the nursing staff has not only been lacking, but pretty much nonexistent. Our night nurse was fantastic, but during the day, we are largely ignored in our little kingdom at the end of the hall. If Jackson needs something (food, towels, meds), I have to call and ask. What is our schedule for each day - we get to guess. Tuesday morning, I lost it. I was tired - didn't sleep well in the hospital room. I was frustrated from the lack of information about what we were supposed to do that day. I was tired of calling and asking for everything. And, I was getting tired of being ignored. We hadn't seen a nurse in over 2 hours, Jackson's breakfast was MIA, and Damon and I were on the phone still trying to hash out the insurance coverage (it's still not all covered). I was done and I had my little mommy breakdown - first to Damon and then to one of the staff members. And, the response, I had a nurse come in and pretty much explain to me that I was pretty much overreacting. I love being talked down to! And, I was yelled twice - once for not giving Jackson his medicine on time and a second time for not coming out of the room with gown/mask/gloves on. Guess have to tell me to put that stuff on and SHOW ME WHERE IT IS!
The rest of Tuesday didn't improve much, from the nursing care aspect. But, the good thing is Jackson is responding to the treatment and already looks much, much better. He also got through the worst testing - the skin scratch tests - and he did great. We also met the social worker, who was able to give us some tips on helping Jackson cope with the itching and the stresses of being chronically ill.
Tonight, we were able to check in to the hotel and get out of the hospital. That is a huge help. We hit the Super Target across the street, ate some dinner, and came back to the room. Jackson did his third soak/seal of the day and he is asleep. Tonight, I did bring out some of the get well cards I brought from people at church. He loved those! He just smiled and kept asking me to open another. I have more, but am spacing them out over the week.
Damon and I were talking tonight this all worth it. Yes, I think it is. Jackson was able to get through dinner tonight without scratching; that is improvement. He also looks much, much better and by Thursday, I think his skin will be completely clear for the first time in over a year. I have also had a chance to refresh my knowledge of the soak/seal method, which is the single-most effective treatment for him. I also think our time with the social worker, tomorrow, will give Jackson some addtional coping skills.
More adventures tomorrow....