Dear Son Swine Flu/Pneumonia Medical Update #3

Thank you all for your prayers and well wishes for Dear Son. Here is a status update.


The good news:

• Dear Son is off the norepinephrine (blood pressure medication). This is a huge deal according to the Attending Doc.
• He is running fewer fevers.
• They started him on g-tube feeds at a rate of 5 cc per hour and as of today, increased him to 15 cc per hour. The added nutrition will help make him stronger and help him recover.
• Blood gases are done every six hours, as opposed to every two hours.

The not so good news:

• He still requires a lot of help from the ventilator. I had hoped that perhaps he'd be vented another day or so however they told me it would be another week or so. Even if the settings are decreased, there are still a lot of other things he needs to do before they can take him off of the ventilator. He needs to get stronger, be able to breathe on his own, etc.
• The chest x-ray still looks pretty bad. His entire right lung is filled with fluid and the lower part of the left lung. His left lung looks worse than yesterday.
• He remains unconscious. He is retaining some fluid and his eyes are swollen shut. He left eye is so swollen you can barely see his eyelashes.
• He had a pretty big seizure yesterday afternoon around 3 p.m.
• His potassium is low.

I spoke with Dear Son's doctor at length yesterday to get a better understanding of the intense concern over the swine flu. I had thought that the MRSA pneumonia would be worse than the swine flu since it is a bacterial infection that is hard to treat however the swine flu is proving to be a bigger challenge. He spoke to our ICU Director and she relayed a story of a Texas hospital where all of their swine flu ICU patients died. While the swine flu is more prevalent in the western suburbs where I live, he does feel good that Dear Son is off of the norepinephrine. He also has great confidence in the ICU team here at Big Academic Medical Center. He said in the last ten years, he thinks this ICU team is the best he has seen anywhere. They are especially good with respiratory issues.

At Big Academic Medical Center, they have a strict Isolation Policy Guidelines. You can either wear a gown/mask and gloves at all times when you are in the room with a patient with the swine flu or you can choose not to wear any of it. If you wear the gown/mask and gloves, you can remove them when you leave the room and go anywhere in the hospital, which includes the restaurants, laundry room, family vending area (with microwaves). If you are a parent and choose to "room in", meaning stay with your child, you can forgo the gear however you are not allowed to go anywhere except the bathroom. Since I stay with Dear Son 24/7, I am not leaving the room to go anywhere except the bathoom. The gloves, mask and gown are very hot and I can't wear that 24/7 without sweating to death. The room door must also be closed at all times. I caught a cold and lost my voice from the vent in the room since it blows air on me when I sleep. On the flip side, it's really uncomfortable in there since there isn't any air circulation with the room closed all the time. I totally understand the precautions however it's making it challenging in terms of food. I have to bring my own food and can not use the microwave or anything else anywhere.

Dad took vacation days to visit Dear Son this week at the hospital. When they heard Dear Son had the swine flu, they sent in a Hazardous Materials team in to clean his desk. I asked the docs if this concern was appropriate and from the swine flu cases they are seeing, this is appropriate.

In summary, Dear Son remains hospitalized in the Pediatric Intensive Care Unit at Big Academic Medical Center with the swine flu, a viral pneumonia and MRSA. His ventilator settings are 45% oxygen, 10 PEEPS and 24 Ppeak. He is on Benadryl (to prevent Red Man Syndrome from the Vancomycin), Vancomycin, Zosyn, Fentanyl (for pain), Tamiflu and potassium. He gets daily chest x-rays, chest pt and nebulizer treatments every four hours and blood gases every six hours. He has a central line, an arterial line and a foley for urine.

I was really down and out yesterday with regards to Dear Son. I need your continued prayers to help him get well. I really need to see Dear Son open his eyes again and to see him smile. I remember back in 2006, when he had the MRSA pneumonia and I was hoping for more time to see him grow up. Now that I've seen him all grown up, I want more. I want more time with him. I want to see him laugh again and go to Florida for his Make a Wish trip. In reality, it will take him quite some time to recover.

I do have confidence in the ICU team and and fortunate to have such good doctors. Ped Neuro Doc has just been outstanding. He takes such good care of Dear Son. Whenever he's been hospitalized, he always comes to see him even if he's not the attending that week. This alone has been really helpful. When you are in these types of situations, it really helps to have someone that knows Dear Son so well and is able to give me real answers in terms of his recovery. I've been in a few situations with Dear Son at Big Academic Medical Center where I thought that the only hope I had was a miracle and Dear Son pulled through.

Please continue to pray for Dear Son. If you have any prayer groups, that would be great as well. I have always believed that in addition to having a good medical team that the power of prayer makes such a difference for Dear Son. Thank you for all of your wonderful comments, thoughts and prayers. While I am unable to write any posts at the hospital, I can read your comments on the big screen t.v. in the room. Your comments have given me strength to help me get through this with Dear Son.

To read all swine flu/pneumonia updates for Dear Son, click here.

Note: Dear Son is seventeen and suffers from seizures, dystonia and severe mental retardation as a result of a random mutation of the ARX gene. He also has a progressive neurological disease. You can read more about him in the Journal of Neurology. The link is in my sidebar.