On Monday, Dear Son (DS) tested positive for Influenza A. As you may recall, Dear Son is at Big Academic Medical Center and was being treated him for the flu and a viral pneumonia. During that time, I met with the Section Chief of Infectious Disease(SCID), who is an expert in unspecified fevers, and he was confident that they had figured this out. While the blood cultures and swine flu test were still pending and would take a few days, this is what Dear Son was treated for. I didn't share the flu information when I updated you earlier in the week, because at that time, while they suspected the swine flu, I didn't have the test results back. I met with the Section Chief of Infectious Disease and he had explained to me that 88-90% of the patients there that tested positive for the Influenza A, would test positive for the swine flu and that's exactly what happened with Dear Son.
What was problematic for me was that in early October, I spoke with Dear Son's physicians with regards to getting the swine flu vaccine, along with the seasonal flu vaccine and the pneumonia vaccine. Dear Son had a pneumonia vaccine in 2002 and I had met with the Section Chief of Pediatric Pulmonary in August for an office visit to determine if he needed to get another pneumonia vaccine (Normally you need only one in your lifetime but because DS has chronic lung issues, it was recommended he get another one.). I wanted to know if I could get all three vaccines done on the same day, Monday, October 26th, because DS was off school and it's hard to get him around. Dad must go with on all office visits because we don't have a wheelchair van and he has to lift him. They had conversations to determine if he could get them all in the same day, how many injection sites they needed to do and if they would have the vaccines by then. We also needed to determine which type of vaccine he needed to get (live or dead) and it was determined that with DS's pulmonary issues, he could only get the injectible version and not the nasal mist. It was set up and he was approved to get all vaccines on that day.
When we arrived on that day, they were out of the Swine Flu injectible vaccine. Little did I know that this would be a huge problem for Dear Son. On Saturday, October 31st is when his fever started. I specifically asked the Section Chief of Infectious Diseases what the incubation period is on the swine flu and was told 1-5 days. I asked him where DS got the flu and he thought he most likely got it at school. I also asked if DS would have gotten the swine flu vaccine on Monday, the 26th, if he still would have gotten the swine flu. He said that if DS got the vaccine, he probably would not have gotten the swine flu. Please understand that it would have still be possible for DS to get the swine flu with the vaccine, however he was saying it most likely would have prevented it. I learned all of this information earlier this week but didn't want to update the blog until I had the actual test results that were positive for the swine flu and I got those yesterday. He is also having conversations with those departments to determine why the vaccine was promised and not delivered for someone like DS. Typically, the city gets the vaccines, they go to the hospital then are distributed to the departments and they allocate the vaccines to the appropriate patients. In our case, they aren't certain what happened and I should note that we came down just for the injections and neurology clinic as not in session that day, another department was.
In addition, once Dear Son tested positive for Influenza A, they required me as his primary caregiver, to start on Tamiflu and gave Dad a prescription as well to help prevent the swine flu.
In addition to the swine flu, Dear Son has a big infection in his right lung. It is nearly all white on the x-ray. At this point, the blood cultures haven't come back with a bacterial infection so it is still considered a bad viral pneumonia.
Pediatric ICU policy states that all patients must be tested for MRSA. As you are aware, Dear Son tested positive for MRSA in 2006 and had two MRSA penumonias and was vented at that time as well. Many of you read my Mother's Day blog where I almost lost Dear Son on Mother's Day but the blood transfusion saved his life. Dear Son tested positive for MRSA this week as well. I asked the Section Chief of Pediatric Pulmonary, who is DS doctor, if that meant the pneumonia was a MRSA pneumonia and they can't say. What is does tell us is that he has a pneumonia and he has MRSA which means that they need to treat him with antibiotics for the worst case scenario. (As an FYI, typically with a MRSA pneumonia, you have really high fevers, say 105 or so and because it's a bacterial pneumonia, there are protocols for the length of time they will be on antibiotics. For example, often Vancomycin, a powerful antibitoic will have a ten day course.)
So to update, Dear Son has the swine flu as his primary diagnosis and then a bad pneumonia and MRSA on top of that. The swine flu can have a fever component (If I recall the SC of ID said that less than 10% of patients with the swine flu have a fever.) Dear Son remains on a ventilator.
On Tuesday, Dear Son was started on the ventilator at 100% and by Wednesday, his settings had decreased to 55% oxygen. A simple way to evaluate what is going on is when the vent settings are going up, you are getting worse and when they are going down, things are getting better. Dear Son continued to have fevers on and off. They were able to stabalize the blood pressure with norepinephrine and also stabalize many things: glucose, sodium, potassium and magnesium. He remains on the norepinephrine though to keep his blood pressure up.
On Thursday morning they attempted to get a chest x-ray which required Dear Son to lie on his back. Normally Dear Son can not manage his secretions when he is well on his back and I told them that he could not lie on his back for any time longer than necessary. They ended up having him on his back some 20-25 minutes at which point I said I had to turn him on his side. I could hear the secretions and while they can suction him, I honestly can't stand that and would prefer to prevent these kinds of things. For the record, I have a horribly weak stomach and when he is on the ventilator, it is ungodly stressful for me and for DS. The nurse thought she knew everything and was going on on how Dear Son was doing just fine on his back, his oxygen saturations were lovely, etc. I left the room to go to the washroom and came back and she was totally white faced. Dear Son's had desatted and as a result they had to turn the vent settings up from 55 to 100%, except that now they had a problem because he wasn't getting enough oxygen even though they were at 100%. There was nothing more they could do. She asked me if it might be possible he was having a seizure since she couldn't get his oxygen up and I said no but I swiped the magnet for his VNS anyway. At this point the charge nurse was in the room and x-ray was standing there wanting another chest x-ray because the x-ray was bad. It was now 5:45 a.m. I told them that they might want to hold off on the chest x-ray until the Attending Doc comes in around 8 a.m. (Yes, they have docs on call all the time and typically the AD is there around 6:30 or so.) At that time, they could talk to her, DS would have had two hours to stabalize and they would have a full staff there to help DS should things get worse. I said they could still do a chest x-ray at that time however since they couldn't get his oxygen up and the vent was at 100%, there was no place to go. I was trying to avoid a crisis when everyone wasn't there. They agreed.
It took a few hours before DS stabalized. He remained at 100% for around two hours or so. I explained to the nurse that while it may seem that Dear Son can tolerate things, he really can't. I think she learned that they need to listen to Mom:)
He continued to have fevers throughout the day and when I left last night, he was on 75% oxygen on the vent with a PEEP of 8. The plan was to try and decrease the vent settings and increase the PEEP to help him out more. (A PEEP is essentially where they have pressuried air that holds the lung air pockets open after they exhale so they don't compress. These are my words for the PEEP explanation.)
Dad had to leave earlier this week after coming down with a fever. He got sick after spending one day in the room. I left last night and have a terrible sore throat and can't speak.
So to summarize, Dear Son is at Big Academic Medical Center and has the swine flu, a bad right lung pneumonia and MRSA. He is being treated with Vancomysin and Zosyn as the antibiotics, Fentanyl for pain, Tamiflu and norepineprine to stabalize his blood pressure. They continue to treat his fevers with Tylenol and Motrin. They are giving him chest PT every four hours and take blood gasses every four hours. He has a central line, an arterial line and a foley for urine. He is also having more seizures so they took all seizure labs yesterday. He had a good night last night and the vent settings have been reduced to 50% oxygen.
They expect the swine flu to last seven days and during that time, he will be pretty sick. They will continue to treat him with the antibiotics and the plan is to increase the PEEPs to try and get the vent settings down.
I spoke at length with Dear Son's Pediatric Neurologist, who is DS primary doc. He has been his doc since he was ten weeks old. I asked him if he thought Dear Son would live. He thinks that Dear Son will live however he is not sure how easy it will be to get him off of the ventilator. He explained that unlike other physicans, he spends a lot of time in the ICU and knows these physicians well. He stated that for those patients who have had the swine flu there, they have been very sick for a good week or so. He is very confident of the ICU team in terms of managing these types of issues. I also wanted to know if the fact that Dear Son is so weak at baseline and has a progressive neurological disease if that makes it harder. While it does make it harder, he has other patients that are more severe than Dear Son and have been in the ICU for other issues and the team has been able to pull them through. While his words were comforting, I still do not feel very good about this situation however it did help a lot. I pray that he is correct.
I do know however that getting him off of the ventilator will not be an easy task and they have told me that they will probably need to get him some support before he can breathe on his own. I have had conversations with several of his physicians around this issue.
I would also strongly recommend that if you have a child with chronic health conditions like Dear Son, that they get the swine flu vaccine. I asked the Section Chief of Infectious Diseases who is most likely to get the swine flu and he said children with asthma and those with chronic illnesses.
Thank you for all of your prayers for Dear Son. It is very comforting to know that everyone is praying and pull for Dear Son and for us. I am beside myself with grief over this situation and it's killing me not being at the hospital right now. I am going to try and get some rest.
I do have pictures of Dear Son in the ICU, that I took with my new camera however I'll try and get those downloaded later today. I wanted to get the update done for you first.
I also want to thank Laura, Angela and the people at the Make a Wish Organization who have confirmed that they will re-schedule Dear Son's Make a Wish Trip once he's better. In the meantime, we'll just hope that he's on the mend for his 18th birthday next week.
To read all swine flu medical updates for Dear Son, click here.
Note: Dear Son is seventeen years old and suffers from seizures, dystonia and severe mental retardation as a result of a random mutation of the ARX gene. You can read more about him in the Journal of Neurology by clicking the link in my sidebar.