Dear Son Medical Update #8: Do or Die

Dear Son-Marks on his chest are from the central line. Bruises on his inner arms are from trying to locate a vein for the IV.

Things have gone south since I last wrote. On Friday or so, Dear Son began running a fever. He ran a fever for over 24 hours and yet they were unable to determine the source of the fever. They did some blood tests and a blood culture however no bacteria grew so the good news, if any, was that we didn't have a bacterial pneumonia. They did however start an antibiotic for 48 hours to cover it.

The lungs continue to get worse. On Saturday, Ped Neuro Doc told me that he was approached by the ICU Attending Doc and the Pulmonary Section Chief and they were worried Dear Son is not getting better. They are not sure what more they could do. He told me the odds that Dear Son will survive are around 50%. He states that they really need to do some deep suctioning on Dear Son, something that I had been quite opposed to. I have a rather weak stomach and the main reason is that deep suctioning requires a tube be placed up Dear Son's nose and then down to remove the fluid from the lungs. Bottom line it hurts. I have never met anyone who has ever recommended it nor anyone that does it that ever had it done. I can't condone something that will hurt like that for a child that can not speak, can not push someone away when something hurts, etc. I had a similar test done once and I couldn't complete the test because it felt like someone sticking a needle up my nose. It was intense pain and I would not do it for Dear Son. I had made that pretty clear.

Ped Neuro Doc felt however that based on his conversations with these physicians it was something that needed to be done. I reluctantly agreed to let them do it however I did not feel great about that decision.

What was also troubling to me is all of the different messages that I receive there. Because Big Academic Medical Center is a teaching hospital, the Attending Docs do rounds with the residents. The problem this week was that the Attending Doc never once came to Dear Son's room and had a conversation with me. Yes, I have made it know that I expect to be there for the rounds but the rounds forum and purpose is for teaching. I don't feel it's private and I don't care to ask questions regarding life issues while standing in the hallway with the cleaning people, reception people, people faxing, every nurse standing in the hallway and anyone else. That's not fair to Dear Son or to me. It amazes me in this day of HIPPA how a patient's privacy is not respected.

I told Ped Neuro Doc that it is troubling to hear things that they don't know what else to do when the Attending Doc and Pulmonary Doc never even stepped a foot in Dear Son's room all week despite the fact that I have been here 24/7. He said that the Attending Doc is timid and I said that was a personality trait and that he needs to do his job. It is costing over $100k per week in the ICU and at that rate, I felt I deserved at least a knock on the door and two minutes of face time or more to have them express their concerns and to answer any questions I may have. I also told him that we began seeing Pulmonary Doc in clinic after his May hospitalization. We saw her in August and have a follow up appointment in December. If she can't come around when Dear Son is sick and make a visit, then I won't need to see her when he's well. The entire purpose of having a doc and having them follow your child in clinic is so they know the patient and better decisions can be made.

Throughout the day, I also have multiple nurses, respiratory therapists and residents come by to check out Dear Son and listen to him. They all say, "he sounds great". Now at some point, these types of conversations and lies have to stop. If the patient isn't doing well, it does no good to have multiple messengers relay the fact that they "sound great". It isn't doing anyone any favors. And to have the Attending and Pulmonary Doc not show up at all is unacceptable. To be fair, the two prior weeks Attending Docs did come to Dear Son's room every day and talk and answer questions. As for residents, the rounds are interesting as well. It was amazing how many times they relayed inaccurate information about the patient during the rounds. In cases where the Attending never bothered to come in the room, who would have been there to correct the information had I not bothered to participate?

Late last night, they began deep suctioning. I didn't watch the first one but remained in the room. During the second deep suctioning, just two hours later, I stood up to see and was horrified at the amount of blood that was suctioned. In addition, Dear Son bled for an hour later and some 90 minutes later, this is what his face looked like. I requested to speak with Attending Doc but got on a Fellow. I stopped the deep suctioning. Dear Son looked like a boxer had smashed him in the face. I felt good about stopping that.

Photo of Dear Son's face 90 minutes "after" deep suctioning. They planned on doing this every two hours.

This morning however Ped Neuro Doc came by. He said the chest x-ray is much worse and there isn't any choice but deep suctioning or he'll die. He told me to leave the room and I told him that I worry about the pain from the suctioning for Dear Son-it doesn't matter if the leave the room or not if I know Dear Son is in pain. Despite the fact that we don't agree on this matter, I do have tremendous respect for him and he always does a great job following up on Dear Son, taking time to see us while he's in the hospital and always giving his best in making sure that Dear Son gets the best care he can. Not only is he a good neurologist but he is a good primary doc as well. I am lucky to have such a great advocate for Dear Son.

Dear Son's Dad was scheduled to arrive at noon and was going to stay through Tuesday. I told him he needs to call off work and stay with Dear Son all week since I can't be there for that deep suctioning. We argued a bit about that. I told him he had to stay with Dear Son since I did not want Dear Son to die alone.

Right before I left the room today, I asked the nurse to give me a minute or two to say good-bye to Dear Son. He left the room and I kissed Dear Son and told him I loved him. I told him that I was sorry I had to leave but that I didn't agree with them putting the tube up his nose and that they think it will make him better. I said his Daddy will be here with him. As I turned around I saw the door to our room was left open and the nurse was standing right outside the door. I was really angry. I have sat in that room for three weeks now with tight infection control procedures and the door was never allowed to be open for more than a few seconds to go in/out and here this nurse couldn't have the courtesy to give me a few private moments with my son. Outrageous.


I left the hospital today and was beside myself. I have spent the last eighteen years taking good care of Dear Son and looking out for him. I never dreamed that as things get down to the wire that I couldn't be there. I just can't stomach the fact that he can be hurting. Being your child's best advocate isn't always pretty and it can be uncomfortable at times but you have to do it.



After I left, I called Dad several times to see how things were going. After Ped Neuro's Doc pleas to me for deep suctioning, not once in the last ten hours have they asked about deep suctioning Dear Son.


This has really been a nasty hospitalization. I doubt we will ever come here again should he survive this. The conditions here have also made it challenging. The room is extremely hot at night, freezing in the morning, there is no air circulation and it's noisy. The pressurized bed is loud and blows dust around the room. With the infection control procedures, I am not allowed to go anywhere but the bathroom. So I can't buy any meals in the cafeteria or restaurant nor can I use the microwave or even heat up a cup of water for a cup of tea. It's like being in an airplane for three weeks. If that weren't enough, the public bathroom and shower are about a quarter of a mile down the hall. There are only two public bathrooms on the ICU floor and when you try to take a shower, people knock on the door for you to hurry up. I am not showering very much.

I guess I am also a bit angry. We were scheduled to get the swine flu vaccine and they ran out. Had Dear Son had the vaccine, the Section Chief of Infectious Diseases said he'd most likely be home with a cold and not here. It's really hard when I worked so hard to get him that vaccine (I was able to get the seasonal and pneumonia vaccine though.) and then to have this type of hospitalization. Missing the Make a Wish trip just bothers me to no end-I so wanted to see him happy. We went from planning the best birthday ever to him having the worst birthday ever and being on a ventilator. You wonder sometimes in the big scheme of things, why the hospitalization couldn't have happened after the trip. This is our 60th hospitalization. People have fun every day and you wonder sometimes why it couldn't happen for Dear Son.


In addition, my sister's birthday is tomorrow. She died from colon cancer on March 1st of this year. My mother had colon cancer and was cancer free for six years and now they think it's back. My aunt died from her second bout of colon cancer two years ago. As a result, my mother's physician wants all of us siblings to go for genetic testing. I told my mother that I wasn't interested since I have enough on my plate right now.

At this point, I just want to bring my son home. If there is nothing more they can do, then I'd like to take him home and love and care for him until it's time.

In summary, Dear Son has been in the ICU at Big Academic Medical Center for over three weeks now. He suffered from the Swine Flu and a viral pneumonia. He lungs have collapsed (addelectisis) from the pneumonia and they are doing chest pt, nebulizer treatments and vest therapy to help clear the airways. Yesterday they switched him from the non-rebreather (12 liters of oxygen) to the high humidity face mask to see if that would help.

Thank you for your continued prayers for Dear Son.

Note: Dear Son is eighteen years old and suffers from intractable seizures, dystonia and severe mental retardation as a result of a mutation of the ARX gene. He also suffers from a progressive neurological disease.