A National Jewish Day

Before I talk about our visit to National Jewish, let me start by saying that yesterday Karson was able to be off his oxygen for his pm nap and then at bed time. However about 2 am, his oxygen levels went below 90 to 85/86. Not something I wanted to see but did. So I made sure his pulse ox was on correctly and getting an accurate reading, it was. So now it was time to put the oxygen on. I tried to keep it at 1/16 but that didn't keep him above 90. I moved it to between 1/2 and 1/4 so he would be above 90 and I could try to get some sleep. 

I didn't sleep much at all last night. I think I was worried about Karson's oxygen levels and also worried about his 2nd opinion at National Jewish. I have tried to give myself permission not to feel bad about getting a 2nd opinion but I do feel bad for Dr. Guarin who has done nothing but tried to help Karson. I feel like I am doing something "dirty" but I am not. I am looking out for the best interest of my son.

Dr. Nichols was the doctor that we saw. At first I was not sure of his bedside manner and if this was a great choice for me. He asked a lot of questions about Karson's history and I felt like I should have known a few dates better than I do. (mental note - continue to track everything on his calendar) I gave him the hospital date information, the times he has been on meds, copies of his most recent tests done on the 17th and then his swallow studies. We talked alot about what Karson does now when he takes his treatments, how he works to breath more in the morning than at night and works to breathe some times when he is active. I also told him how I thought Karson was ready to come off the oxygen but he isn't. (Side note - today at nap time his oxygen levels were 88).

Dr. Nichols looked over his records that I provided and seemed interested in the fact that Karson does have such severe reflux and wanted to know what was going on with all of that. I told him tomorrow we meet with Dr. Barrios and that I should have more answers but I think that he will want to do an emptying study on Karson. Dr. Nichols asked about surgery and I told him that might be an option after the study depending on what it shows. He said he would be interested to know what the results were. Since Karson does cough at least once a day when he takes a bottle and sometimes when he eats, he feels that if Karson's reflux were under better control (not that the GI drs aren't working on that) his breathing issues might be a little bit better.

Dr. Nichols and I talked about all the meds Karson is on and my desire to have him on as little as possible but keep him healthily and out of the hospital. He feels that Karson does not need all the meds he is on. He feels that Karson does not need to be on the Singular because he has not seen it make much different and that it can cause sleeping issues. He also indicated he would not have started Karson on inhalers as soon as he had been but that was not something that could have been changed. He does not feel that Karson needs both Alvesco and Symbicort. He would take Karson off the Alvesco and do the Symbicort 2 puffs twice a day because the Symbicort should be longer lasting. He would also take him off the Xopenx (which we are trying to do). I asked him if he thought Karson would have reactive airway disease for awhile and he said yes based on what I have told him and what his reports show. He said they do not like to use asthma as a label because that means that someone has it for life and with reactive airway disease they can grow out of it by 3-5. He also said that if Karson were under his car that he would be on inhalers or an inhaler for at least 12 months and then re-evaluated.

I talked to him about ILD or Interstitial lung disease which I had heard the terms, done some research and talked to a Mom whose son has this. Dr. Nichols does not feel based on Karson's CT scan that he has ILD. He does not show the signs of ILD in terms of issues with his lungs in his CT scan. This made me feel better. He also seemed to know exactly what I was talking about which also made me feel better.

He did say that if Karson continued to need oxygen while he slept that he would want his heart looked at. Not because he feels like there are any issues but because he would want to make sure that Karson is moving air through his heart into his lungs correctly. Just to rule out any heart issues.

I asked more questions and he answered them. He said he wanted his nurse to show me how to give Karson a nasal wash and how they like them to use spacers with infants on inhalers. He said he would encourage me to use the nasal wash on Karson when he is congested. He left and his nurse came in. She was super sweet and showed me how to use the nasal wash. Wow Karson sure had some snot in there - I had no idea. He didn't really like this but he did it. What a great kid. Smiled at the nurse after she was done. We went over the spacer and then talked about what would happen for Karson if we moved his care to NJ.

At NJ Dr. Nichols has a nurse that I can call with questions and a nurse line that is staffed with a nurse all day who can answer any questions I have or if I am concerned about Karson's breathing. They have a 24 hour treatment center that Karson would be able to come to in the event he need some care this would be in place of visiting Rose Medical Center's ER where there may or may not be a pediatric ER doctor on when we arrive. If Karson needed to be admitted he would be sent to Children's Hospital. If he just needed some care he could be there up to 24 hours. I could also call this center 24 hours a day with questions on his breathing rather than calling his pediatrician's office if it is after hours which I do now.

Once the nurse left, Dr. Nichols came back in and asked me what they could do for me. The same question he asked before. I told him I wanted to make the right choice for Karson and that Kyle and I would have discuss where we would go from here. He said that if we changed doctors -which he said he is not in the business of stealing patients - he would changes his meds right away. This would not have a negative side effect on Karson is any way.

Dr. Nichols will type up and send me his recommendations and we can go from there. I am not sure what we are going to do. I like the idea of having Karson off some of his meds. I like the idea of seeing lung drs sooner rather than later when he is sick. I like the idea of the nurses being there all the time. However I really like Dr. Guarin and I feel she has really tried to help Karson.

So I think I will sleep on it. Talk some more with Kyle, talk to Dr. Tucker and make the best decision for Karson.

Wow! What a story right? =) Tomorrow we see Dr. Barrios.