Tuesday, November 10, 2009

Dear Son Swine Flu Medical Update #4 & Swine Flu Q & A

After a horrendous day on Saturday, Dear Son started to stabalize on Sunday. I really did not feel very optimistic about things on Saturday and if the truth be told, I was really quite down and could not even remotely anticipate that things might ever change. I was so distraught thinking that I'd never really see my boy as the happy boy he is. Being thisclose to a trip that would have lasting happy memories was like pouring acid on a wound. After his last hospitalization in May, I was determined to get this kid out of there and have some fun and feared I had waited too long. The thought of losing him was overwhelming.
Your comments, thoughts and prayers have been a great source of strength for me. While I can't update you from the hospital, I can read your comments there. I know a lot of you think that I am really a very strong person however when it comes to Dear Son, probably not so much. While I am fiercely passionate about caring for him along with overly doting and syrupy, I am probably not too strong. Add to the fact that I have an incredibly weak stomach, all of this constant suctioning and getting rid of secretions only adds to the stress. I think I'll feel much better when he's off the ventilator and when he can open his eyes.
Dear Son does appear to be stabalizing somewhat or at least taking some baby steps in the right direction. In the last twenty four hours, the fevers have disappeared. They were able to increase the feeds and made the decision to start him on his g-tube feeds to try to normalize his potassium levels and to give him some strength to help him breathe on his own. His potassium remains low; they were giving him potassium directly and as of yesterday began adding it directly to his IV fluids.
In addition, they started him on Lasix to get rid of some of the fluid that he was holding. I had questions regarding the Scopolamine patch and adding the Lasix since the Scopolamine patch dries up secretions, doesn't allow him to sweat and helps hold/retain his urine whereas the Lasix does the opposite. They explained that the Lasix works directly on the kidneys as opposed to the Scopolamine patch which is an anti-cholinergic. I also wanted to know what the effect of the Lasix would be on his potassium levels since it's getting rid of the water. They said it was a good question and that with the Lasix you can excrete the potassium and since he already had low potassium, they'd have to watch it. He should be o.k. though since not only are they giving him the potassium but when they increase his feeds, the electrolytes will normalize themselves.
In addition to increasing the feeds and adding the potassium, they are going to more aggressive in decreasing the vent settings to get him to breathe some on his own. On Sunday, they got the oxygen settings on the vent down to 45%, with a PEEP of 10 and breaths of 16; they decreased him on Monday to 40% oxygen, with a PEEP of 10 and breaths of 12. While the oxygen setting of 40 is typically o.k. for extubation, his PEEP was rather high at 10. They decreased that to 9 later in the day and decreased it to 8 today. The breaths were at 12 and there were times yesterday when he didn't breathe over the vent* at all and then other times when he might be 3 breaths over and as high as 9. If all goes well, they will try to extubate him on Wednesday or Thursday. They had previously discussed that if and when they do extubate him, they will probably have to transition him to the Bi-Pap machine to help him breathe as opposed to letting him breathe on his own with no ventilator support.
The chest x-ray was actually worse yesterday than the day before. The right lung appeared to have more collapse and the left lung lower lobes a little worse as well.
They are continuing his chest pt which helps clear the secretions from his lungs.
Blood gases are done every six hours and labs done every twelve hours which is an improvement.
So to summarize, Dear Son remains on a ventilator at Big Academic Medical Center Children's Hospital. He is on Vancomycin/Benadryl, Zosyn, Fentanyl for pain and Tamiflu (The Tamiflu was a five day course however they they decided to keep him on it to minimize flu symptoms. When they saw the renal electrolytes trending up, they decreased to the Tamiflu to once every 48 hours until he is off the ventilator.) They have added potassium, started him on g-tube feeds and decreased the ventilator settings. His chest x-ray looks worse however it is not uncommon for chest x-rays to lag behind. He has a central line, an arterial line and a foley for urine. His blood pressure is remaining relatively stable. Dear Son remains unconscious and it still holding quite a bit of fluid.
In addition, I met with the Section Chief of Infectious Diseases at Big Academic Medical Center. He's the guy who decides on the antibiotics for this hospitalization. I asked him several questions related to the swine flu:
  • Q-Is it true that it takes two weeks for the swine flu vaccine to be effective? A-He said it probably never gets to the point where it's really 100% effective. Typically what a vaccine does is to make the flu milder.
  • Q-Will he get the vaccine before he leaves the hospital. A-No.
  • Q-Now that Dear Son had the swine flu, can he get it again this season? A-No.
  • Q-At Dad's place of employment, once they heard Dear Son had the swine flu, they sent the Haz Mat team (complete with mask and gear) in to clean his desk. Is this an appropriate level of concern? (I should tell you that I couldn't stop laughing when I heard they did this.) A-No. People are overreacting to the swine flu.
  • Q-At Dear Son's school, they offered to come in and clean the classroom after hearing that Dear Son had the swine flu. Is that necessary? (Normally, the classroom is kept extremely clean as the staff is quite diligent about hand washing and sanitizing with the four students in Dear Son's class.) A-No. Normal cleaning is fine.
  • Q-Any deaths at Big Academic Center from the swine flu. A-No.
  • Q-Is the swine flu seven days? A-Any flu is 7-10 days.
  • Q-If Dear Son got the swine flu vaccine, would he be on a ventilator? A-No. If he got the vaccine, he most likely would be at home with a cold (milder version of the swine flu) instead of on a ventilator. *Note: Dear Son was scheduled to get the swine flu vaccine at Big Academic Medical Center and they ran out. This was 6 days prior to him getting the swine flu.
  • Q-Does Big Academic Medical Center have a website where I can get more information on the swine flu. A-Check out http://www.cdc.gov/ for information.

Late last night, around ten p.m. Dad called me regarding Dear Son. His central line was leaking blood so they gave him something to break up the blood clot but it didn't work. They decided to use another port and will make a decision today as to whether they will replace that line.

Thank you for your continued prayers for Dear Son. Today is probably the last day I will be able to post for a while. Dad came down last night so I could go home and sleep since I have to work today. If you'd like to read all of my posts related to the swine flu, click here.

**Note: Dear Son is seventeen years old and suffers from intractable seizures, dystonia and severe mental retardation as a result of a mutation of the ARX gene. He also has a progressive neurological disease.
*Note: When you are on a ventilator, it is doing all of the breathing for you. You want the patient to begin breathing "over" the vent so they begin to do some of that themselves. The easiest way to understand this is thinking about the extubation. When they remove the vent tubing from you, they typically have a lot of doctors standing around the patient. As they remove the tube, they essentially wait for you to "catch" your breath or start breathing on your own. It's pretty scary when this happens because you are essentially waiting for the patient to breathe. The patient then gasps for air and you hope they begin breathing on their own. The danger in being on the ventilator too long is that when you body gets used to the machine doing the breathing, it gets much harder to wean you off of the vent. In addition, when the patient is ill and weak, it's harder yet. For patients like Dear Son, who have a progressive neurological disease, the job becomes that much tougher since their baseline status (meaing what they can do when they are well) is so weak. In addition, the first twenty four hours after extubation is critical. At that time, they will know if the patient can breathe on their own or if they will have to put them back on the ventilator.


Anonymous said...

Hi Sue,
Just wanted to say that you continue to be in my thoughts and prayers.
Laura Weubbe

Erica said...

I hope he continues to get better and you can all be more comfortable soon. That is so upsetting that getting the vaccine on that day would have prevented his hospitalization.

Anne said...

The info on the vaccine is timely. Thanks for taking the time out of your very critical day to post this info.
Continued prayers for your dear son.

deb said...

Thank you for the update, and we will continue to hold you all in our prayers.


erika said...

I just wanted to let you know that I am praying for your Dear Son's recovery and also for lots of strength and peace for you.

RunAwayImagination said...

You are an incredibly strong and resilient woman despite what you might thing. Thank you for continuing to keep us updated. Suzanne and I send you our best thoughts.

MFA Mama said...

Oh, Sue. I hadn't read your blog in a long time and started back where I left off without looking at the front page first (I like to make sure I am up-to-date before I leave a comment on a special-needs parent's blog so as not to say anything inadvertently hurtful). Last night I was happy for you and Dear Son as I read about the MAW plans, and then I cried like a baby when I saw that he had gotten so sick...that is really, really hard. I've heard that H1N1 (Swine Flu) is much harder on neurologically compromised kids and adults, and poor Dear Son certainly seems to be proving that. I so hope he can get through this and well enough for you to take that trip with him. You and I exchanged a few e-mails about two years ago; I have three kids with various special needs (two have Autism Spectrum disorders and ADHD, two have a bleeding disorder, and the littlest one has a LOT of things wrong and eats via g-tube; we all have been found to have a genetic syndrome that I passed on to them). I raised cain and strong-armed the youngest one's team of specialists into reserving vaccines for all three of my children and I so wish that BAMC had been able to give Dear Son the shot, too. I'm thinking of you and hoping against hope for some BIG improvements SOON!re

Lizzie said...

You and DS are always in my prayers - never more than now. May God bless and keep you.

Lizzie said...
This comment has been removed by the author.
Anonymous said...

In our thoughts and prayers- you are a strong individual, whether you think so or not- stay strong and well and know that many are praying for this to end so you and your sweet son can get back home....

jbbzmom said...

Thank you for taking time from your resting to give updates. You and your family are in my thoughts and prayers. I pray to see a post of a big and wonderful MAW trip with you and DS, those pictures will be priceless!

Dreaming again said...

Thanks for the update. Please get some rest. You're being prayed for, all of you.

tonyandann said...

thank you so much for passing on the swine flu info! Can't believe dear son wouldn't be first in line to get the vaccine. However, didn't the dr say the vaccine doesn't completely prevent it? Who knows how much it would have helped. Anyways thank you for taking the time to keep an update!

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