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 what...you 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 about...is 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....
How to Meal Plan for a Picnic by Joanne
2 days ago