This will be quick since I am short on time.
Yesterday, we had some setbacks. When they decreased the PEEP settings on the vent, it was a little hard on Dear Son and they had to increase the oxygen back up to 50%; the setttings remained there all day. At 2:10 a.m. Wednesday morning, Dear Son began having seizures which they treated with Ativan since the VNS did not control them. Around 7:15 a.m, he began having seizures again however his blood pressure went way up to 202/110 and remained there. They gave him 4mg of Ativan total and then had to call Ped Neuro Doc. Labs were taken again, he was given a bolus of a seizure med and late in the day, he increased one of the seizure meds after the labs came back. Dear Son has trouble when he lies on his right side since he has a right lung pneumonia.
The central line has begun leaking however they are watching it and they areo.k. with it.
Chest x-ray looked better yesterday; keep in mind chest x-rays lag behind.
I spoke with the Section Chief of Infectious Diseases yesterday. He's in charge of prescribing the antibiotics for Dear Son and is an expert in fevers and all kinds of infectious diseases. They will discontinue the Tamiflu now and after he's off the vent, discontinue the Vancomycin and Zosyn.
He also had a discussion with me regarding a trach for Dear Son to keep the airways clear. I will not do a trach for Dear Son and will explain my position on that (as it relates to Dear Son) at another time when I have more time. I told him I was very comfortable with my decision and that I had researched it and had many discussions on the topic with several folks some time ago.
In summary, Dear Son remained on the vent. He had to stabalize a bit before they can extubate him and ideally, they'd like to see the PEEPs decrease to 5 or 6 with an oxygen of 40% before they extubate. They may try to switch the vent setting to a C-Pap setting to see if he can handle that. Either way, when they extubate him, he will require Bi-Pap support or additional support.
I can't say that I felt too great about things yesterday however the Attending Doc remains confident that they can get him off of the vent.
I am not feeling very well myself hence all of the running back home. I have an ear infection, sore throat, cough and generally am feeling pretty miserable. I started on some antibiotics yesterday.
Today's Dear Son's 18th birthday. We won't do anything today since he's unconscious. I did tell him we'll have a party when he's well.
Thank you for your continued prayers and support for Dear Son. I did get a few more questions answered regarding the Swine Flu but I'll have to share them another day. I have 15 minutes to get out of the house and back to the hospital. I greatly appreciate all of your comments. I am sorry I can't respond to any of them. Thank you for your e-mails as well.
14 comments:
Happy Birthday DS! I hope you get well quickly and can get your big trip rescheduled soon!
Happy Birthday Dear Son. We are waiting to see your gigantic smile again SOON. DM, take care of yourself, ok?
Hang in there! Happy 18th!
This is not how any of you envisioned spending his 18th birthday. But our prayers and very best wishes are with you all, and I know Dear Son feels the most precious gift of his life especially on this day: the love and devotion of his wonderful mother.
Dear DM, I have never commented on your blog before but I have been following your story with great hope and admiration. Your love for DS and desire to help him live his best life are humbling to witness. I believe that because of the way you are living your life, this world is a better place.
My best wishes to you.
Happy 18th, Dear Son! Hugs to mom and dad... keeping y'all in my thoughts...
Happy Birthday to Dear Son, and best wishes to all of you. I hope this MAW trip can get rolling again.
Happy Birthday, Dear Son! You and your Mom, Dad and Medical Team are in our prayers daily.
Deb and Family
Happy Birthday Dear Son! :) My birthday wish for you is that soon you will feel better enough to go on your special trip to Disneyworld!
You remain in our hearts and prayers - know that you aren't ever really alone, because we are all with you in spirit.
Take care of yourself, DM - I know how exhausting it is (physically, mentally and emotionally) to live at the hospital.
(((hugs!))) Thim
I am so sorry to hear that DS is unconscious. I would love to hear that he was home celebrating his birthday with you and his dad. And I'm so sorry to know that you are not feeling well...it has to be difficult to rest, with going back and forth, and with worry about DS. My prayers are continuing for both of you. As a mom of a mentally disabled daughter, I know there is nothing you wouldn't do to make his life as happy as possible...I am praying that you can take him home soon, and celebrate the way you had planned, for his 18th birthday. God bless you, dear friend...take care!
Mary
HAPPY BIRTHDAY HANDSOME GUY!!!!! Mom, you take care of you so when he comes home, you can really whoop it up! Hope you are getting some rest, and want you to know I'm sending up daily prayers for both you and your Dear Son. God Bless.
Happy Birthday Dear Son! Here's looking forward to your birthday party when you're back home.
Lori x
happy birthday dear son! hope you two feel better soon!
I simply cannot imagine how it felt to write this update. On a day you thought would be spent so differently it must have been exceptionally hard.
Please know that many are praying for you. I love and admire your (and Dear Dad's) dedication to you son. I think about and pray for the three of you often.
My feverent prayer is that Dear Son will recover and the three of you will take the trip of a lifetime.
Take care and be sure to get rest for yourself.
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