We are settling into our new routine here at home. The home health nurses have been out twice a day for the last 2 days to teach us how to administer Evan's IV antibiotics. Harold & I are now flying solo & are pretty darn proud of ourselves for mastering this new skill. Coming from a medical family, my parents used to bring home syringes of all sizes for my cousins & I to use as improvised water pistols so I took easily to the injecting part. Of course, I'm just having to inject into Evan's port, not his skin, for which I am thankful! For Evan's part, he is now comfortable with people messing with his ports, which is good.
We have had a couple of bumps the last couple of days. Evan appears to be having some sort of reaction or resistance to the main antibiotic, Vancomyacin. He is very itchy, which we try to control with Benadryl, & continues to run a low-grade fever. He also has developed a yeast infection, so he is eating yogurt to help that.
The Infections Disease docs wanted us to come back to the hospital last night because of this, but our wonderful friend, Dr. Jerry, director of our local E.R. came to our house, examined Evan, called them & talked "doc talk" for quite a while. He explained that we hadn't even been home 48 hours & were all exhausted. He was also able to tell them he had examined Evan, who is eating well & in good spirits. The I.D. docs agreed to let us stay home for the time being, told him what tests they wanted & Dr. Jerry had the home health nurse draw the needed blood & other samples. The preliminary results this morning were very good. We are waiting for the results of the blood cultures, which will take another day or so. That will be the determining factor of whether we have to trek back to the big city hospital this weekend.
So today we all, as Ev said, went to work. I spent a whole 7 hours in the office! Harold spent nearly 3 hours. Evan was very happy that his teacher, Patsy, came over to do math & reading work with him. I told someone yesterday that I could tell he was feeling better because he is starting to get bored.
We do have a surgery date: May 10th. I will admit I started crying when the doctor's assistant told me this, as that is just 2 weeks prior to graduation. The poor lady on the phone felt so bad for me, as she knows all we've been through. It will take a major miracle for Evan to be feeling well enough to attend his graduation ceremony. I'd like to think we're due for a major miracle or so at this stage of the game, but I know all things are in God's hands & in His time, not ours.
Prayer requests: That all blood cultures will be normal, that the itching & yeast infection will heal, & that maybe, just maybe, we will get a closer surgery date.
Thanks for all the prayers, e-mail's & encouraging comments. They have lightened our load more than you can ever know!
That was so nice of the ER doc to come to your house and look at Evan! What a great friend! Prayer are continuing, I will also add to my prayers that Evan is able to attend graduation.
Posted by: Jessica | March 30, 2007 at 08:33 AM
I'm so glad that you got to stay at home and that Evan feels a little better. Now we'll just have to pray until some of this other stuff gets cleared up! We love you guys.
Posted by: Eleanor | March 30, 2007 at 01:46 PM
Evan and your family are in my prayers. Suffering is so hard to understand. I'm in tears over what you're going through. But God is good and I have no doubt he has a plan through which all of this will work together for the good of Evan and your family. Blessed be God.
Posted by: Rosemary Bogdan | March 31, 2007 at 08:58 AM
Lori,
I'm so glad things are going better. You've had a rough ride. I do pray Evan gets to go to graduation.
Posted by: Julana | March 31, 2007 at 09:16 AM
I happened upon your blog.. I'm captivated by your love for the Lord and that of your child.. I have a nurse friend that adopted a little boy with Downs and she just started a group for children with Downs here in Georgia. She was just honored for her work...
I have learned as I have grown in my walk with Christ that only special people that are strong enough would ever be able to walk this road... I think that I was very weak for way too many years... I admire so many of my friends that are now walking this very path. I know that God did not cause it nor wish it, however, He holds you in such high honor for doing it.
OK,, I have probably weird--eeddddd you out... LOL...
Blessings this Easter weekend...
Connie
Posted by: Connie Barris | April 06, 2007 at 03:26 PM
Connie, it takes a lot more than that to weird me out! I'm from L.A.! Thanks for your kind encouragement.
Posted by: Lori | April 06, 2007 at 03:35 PM