The Road Not Chosen

The Speech

Evan prepared a speech for last night's Graduation Ceremony. (Each Senior got a chance to speak.) He got nervous once he was up there & Harold had to read it for him. The words are all Evan's. 

I want to thank God for all my teachers.

And I want to thank my teachers:

Thank you Patsy Golden.

Thank you Janet Miller.

Thank you Mona Veatch.

Thank you Lori Gilliland.

I want to thank you Mom and Dad.

I want to thank my pastors:

Thank you Tom Bedford, Thank you Roger Moore.

Thank you all teachers for teaching me to love God and God is good to me.

I promise to serve God.

I will bless the Lord forever.

Thank you for loving me.

I love you, too.

After Dad was done reading, Evan asked if he could pray. The prayer was even better than the speech & there wasn't a dry eye in the house!

After the Vice Principal, Patsy, handed out scholarship awards to the Seniors she gave a short speech about how Evan may not have earned a Scholarship to college, but he has something more important, jewels in his crown in Heaven. She spoke of how hard he had worked over the years & then presented him with an Award of Excellence. It reads: "In recognition of his exceptional accomplishment in leading the way in loving the Lord Jesus Christ and loving and encouraging his friends." Evan received a standing ovation as the award was handed to him.

It was a wonderful evening & we are all worn out & recovering today. My brother-in-law took a bunch of pictures, some of which I will post when I get them from him.

Happy Memorial Day Weekend, everyone!

Expect the Unexpected

I have no idea how to tell you all this. We are still trying to process the days events. I am exhausted so I'm just going to blurt things out as we only have a small amount of time before the computer room closes.

Evan's surgery was cancelled today. Gasp. Shock. Why? Because, well, God healed him & he didn't need surgery! He was preped & taken back to surgery. They put him under, cut off his cast, inspected his skin for abraisons (there were none). The next step was to look at his hip through the fluroscope (a real time x-ray machine). To the surgeons (both of them) shock, his femur was tilted at exactly the right angle, positioned perfectly. They moved his leg around, thinking it would pop out of socket, but it was firmly, perfectly in place, holding strong. Dr. S. called us in the waiting room, Harold talked to him & started to cry. Then Harold laughed. Hanging up, Harold told us (myself, our friends Roger & Dave) the good news. To say we were stunned would be the understatement of the century. I just laughed like a crazy woman. This was so wonderful as to be unimaginable! We all began laughing, crying & praising God.

After a while our lead surgeon, Dr. C., came in with the biggest smile in the world. He said they were going to put Evan in a brace for about a month, & then he could start therapy & begin walking. I asked him if he had ever seen a case like this. He just laughed & said nothing about this case has been normal. His only explanation was that because Evan's hip was immobilized for so long, scar tissue formed in just the right places to put the femur in the perfect spot & the muscles seemd to be holding strong.

When we talked to the other surgeon this evening, the one who has been doing this for at least 30 years, he said he had never seen anything quite like this. He was stunned also. In fact, the entire staff here is stunned and elated. The word "miracle" has been used several times & not just by us.

Evan was a bit confused when he woke up in recovery without a spica cast on. It took him a while to understand that he not only didn't have surgery, but wouldn't need a cast, only a brace. He is, needless to say, very happy to "see his tummy" as he says.

We made many joyful phone calls. At school, Debbie waited until the whole school was gathered for lunch to tell them the good news. Whoops of joy could be heard far down the halls, we were told. This was a bunch of kids who have prayed & fasted & prayed some more for Evan. What a wonderful day for them to see the goodness of God!

While there are still challenges ahead, months of physical therapy & a staph infection still to fight, things are looking a lot brighter in our corner of the world tonight. We should be able to go home Monday. And, yes, Evan will definately be at his graduation ceremony!

I must go but let me say that once again God has reminded us in a breathtakingly spectacular way, that nothing is impossible for Him in whom we believe.

Here We Go

It's been a hectic few days. I'm trying to get things finished at work & home in preparation for our departure tomorrow for the Big City. The graduation announcements are mailed, work is as caught up as possible, & the house, well, it's not going to get cleaned & I've come to accept that.

Evan was a bit out of sorts this morning. I think he's pretty nervous about surgery Thursday. I feel bad for him because he knows what's coming this time. We try to reassure him that this is an "easier" surgery but the way things have gone, I'm not sure he believes us & I can't blame him for that!

Personally, I'm exhausted, stressed, & really wanting all this to be over. Oh, and our bathroom pipes decided to spring a leak yesterday. When I got home from work, Harold said, "There's a hole in the kitchen wall." I looked at him & replied, "Well, of course there is. Why not?" The only way to the pipes was through the wall. Did I mention that his car died yesterday? Can anyone say "warfare"?

There's a lot of prayer requests today:

1) That Evan's surgery goes smoothly & he has minimal bleeding & swelling.

2) That the staph infection does not spread to anywhere else in his body or bloodstream.

3) That we have a short hospital stay this time.

4) That Evan's white count (which is 4.0 right now) stays stable.

5) That I retain (or regain) some portion of my sanity & strength.

6) That Harold remains as calm & steadfast as he has been so far. (We have a rule that only one of us is allowed to be crazy at a time.)

I'll try to report in Thursday night or Friday night. Thanks for your prayers.

Going Down?

Nothing right now seems to be easy so we should be used to the roller coaster ride. I guess I need to take some Dramamine or something since my stomach still drops to my toes on at least a weekly basis.

Evan's white count, speaking of dropping, went from 2.0 last Monday to 1.4 this Monday. This brought us a phone call from the Infectious Disease nurse. They are now officially "quite concerned", whereas last week they were "watchful". The plan is to do another blood test this Thursday A.M. to see what his count is. If it is still 1.4 or lower, there will be discussions about putting him on a med called G-CSF to boost his white cell production. There are lots of nasty side effects, so we are praying this won't be necessary. The only problem is that if his count stays this low, they can't even think about operating on him in mid-May. Low white cells mean high infection risk.

Evan is fairly bummed out about this news, as it means he can't go to the school art & music festival tomorrow night & probably not the High School Parent Appreciation dinner on Friday night. We, too, are bummed! At least he made it to church Sunday & was able to have some Senior group pictures taken (click on it for a larger view). Here is an impromptu one shot by me, not by our amazing photographer/anesthesiologist Dr. Dan. (Check out some of his work here.) 

In aide news, we interviewed a young man (28 yrs. old, not so young I guess) last Friday. We liked him & thought he might be a good fit for us. He will hopefully start sometime this week. Oh, did I mention that he is Brittney's boyfriend?! I felt such a connection with her, so this is an interesting turn of events.

In work news, my computer at the office is very ill and has been put on life support. It hasn't worked well for over a week. All manner of things have been done to it, yet it doesn't seem to have the will to live. It is in the computer O.R. today & a verdict will be given tomorrow. I continue to work from home, which has ceased to be fun or very productive. In fact, I think I hit intense frustration mode today when it refused to behave after Harold had labored long into the night to reload the operating system on it. I think I'll go take some Dramamine or at least some chocolate.

You're How Old?!?

Yes, folks, Brittany (see previous post) was indeed young & blonde. She was 19, the same age as Evan, & cute as could be.  While very professional & nice, we knew we had to decline her as a caretaker. The agency was not very understanding. Harold tried to explain that we could not have someone caring for our son that he might get a crush on. After all, his caretaker will be with him for 35 hours a week & has to do some very personal caring & we felt that it would not be appropriate for a young woman his age to be doing those things. That would be the most prolonged one-on-one female attention he had ever received. We have always tried to keep close tabs on boy/girl issues, as he does have the same raging hormones of any teenager & can get crushes like any other guy.

Listening to Harold's end of the phone conversation with the agency was hilarious: "Don't you have someone more, well, of a mom or grandma type?" Apparently, they didn't have anyone with the right certifications, as caretakers for those under 21 have to have certain clearances. They will work on that issue but for the time being, we are still caretaker-less. I wondered if they would have sent her to care for a 19 year old college student or if because Evan has Down's they felt it would be ok to send someone the same age as him? (Is anyone else seeing my point here?)

In other matters, Evan's appetite has returned with a vengeance, I am happy to say. He is eating 3 full meals a day & asking for snacks, which is really good. We also have his infusions down to 1 hour at a time, with no complications. Getting those other 2 1/2 hours a day back has made a huge difference for us! Right now, our living room is hosting a Nerf basketball tournament with Evan & his friends Jon, Matt & Andrew, an almost normal Saturday night at our house. How wonderful that is!

Is The Cavalry Coming?

We hadn’t heard from the Bureau of Special Healthcare Needs as of this morning so we called to check to see if there was any action on getting Evan an aide. I got a call this afternoon that a case nurse would be out to interview us tomorrow afternoon & she would bring someone named Brittany with her, who would possible, be the aide. Personally, I was hoping for more of a “Helga” or “Marge” rather than a “Brittany.” If she’s young & blonde, she’ll have to go! We definitely don’t want someone Evan could get a crush on.

Here is a pic of our guy while he was at Shriner’s (that’s Dad steadying him from behind):

And one of him lounging at home today. He’s propped on lots of pillows to keep bedsores from developing.

Sleepless in the 'ville

How tired can I possibly get? I haven't felt like this since Evan was a baby. It's not that Ev isn't sleeping well, he only wakes up once or twice a night. It's not that I am the only one getting up with him; Harold & I alternate nights. It's just that when I try to go to sleep my mind goes into overdrive. Or if I do sleep (& Harold has this happen also) I dream about IV's & flushing lines & sundry medical things. Quick, someone call the waaambulance! (If you've never seen "The Kid" with Bruce Willis, go rent it right now!).

Our trip to the surgeon's & Infections Disease doc went really well. Of course, it took us 3 hours just to pack everything into the van. Oh, and 3 minutes for Evan to maneuver into the van. Hooray! The surgeons spent about 5 minutes looking at Evan. They were pleased with how his hip is healing & his femur hasn't shifted out of where they placed it, which is good. I asked if there was any way to moved the surgery date closer but no go. The antibiotics have to have a certain amount of time to work, so they can't move the date up.

The I.D. doc was very, very, nice and very informative. (We hadn't met her before in person.) The good news is that the type of staph that Evan has in the "puniest" kind, as she put it. The not-so-good news was that we will have to do the IV antibiotic infusions twice a day for the next 4-6 months. (More on that subject later.) The reason is that because there are now metal pins in Ev's hip, & his femur will have metal in it also, the staph germs love to hang out around the metal. If they get there, they become resistant, which is bad. So the infusions have to continue to make sure that doesn't happen. There is an oral antibiotic that would do the same thing, except that it bottoms out your white count & compromises bone marrow production. Since Evan's white count is naturally low because of Down's, that is not an option for him.

On an up note she did tell us that Evan could get out around people, just to try to keep him away from sick people. So we all went to church on Easter Sunday! I don't think I've ever appreciated having us all at church at one time so much before. Of course, it wore Evan out, but he was so happy to go. One of his friends gave his life to the Lord, and Evan was happy to be there for that. It is a big production to get Ev from point A to point B, so we will probably only go out a couple of times a week. But it's nice to have the option for sure!

Now, about the subject of infusions for the next few months. I didn't realize it at the time, but that bit of news really set me back and, frankly, made me angry. (It would take me 3 days to figure out that I was angry about that.) As Harold & I have tried to talk it through, I realize that the prospect of Evan or either Harold or I not being able to be out past 8pm for the next several months was really depressing & frustrating me.

We are in the process of trying to find a way to accommodate this fact. I have a call in to the Bureau of Special Health Care Needs, to find out if they can make an exception to the "no nurse unless she's there for 4 hours" rule, especially since this is a long-term situation. I'm going to try to explain it as a respite care issue & also as a work issue. As a pastoral couple, a lot of what we do is in the evening (Wednesday night service for instance.) Also, good heavens, we do have a marriage to maintain! So our hope is an exception will be made on that basis. We have had a friend or two offer to learn to do the infusions, which we are also considering & will probably do.

Anyway, when I woke up yesterday morning, with a dark, fuzzy cloud over my head from muddled sleep & stress dreams, I thought to myself, "No matter how stressed I am right now, the fact is, Christ has risen and this will all be over one day. I get to go live with Him for eternity." And that is a hope we can all cling to, right?

A New Routine

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! 

Home Is Heaven

Yes, it is! We got home (all of us!) at around 9pm last night. We had plenty of friends waiting to help us get Evan from the car to the house (no small feat, let me tell ya).  After they got him in the house, Evan asked for his friends to pray for him.  Matt & Jeff prayed some wonderful prayers over their friend & us. What a blessing to come home to that!

At 9:30 our home health nurse came to set up Evan's antibiotic IV infusion, which he will get every 12 hours for what we are told is the next several months. The nurse is teaching Harold & I how to do this & in a couple of days we should have it down pat.

Evan did spike a fever of 104 in the middle of the night. Harold & I gave  him some ibuprofen & prayed intently. The fever broke around 6am. We can tell we are fighting such intense spiritual warfare over Evan! Some attack is always trying to come against him but we know that God is the victor in every battle.

I better go swill down some strong coffee. The nurse will be here in a few minutes for Evan's morning infusion & we didn't get much sleep!

Prayer requests: please pray against the staph infection & for Evan's appetite to return.

Thanks!

Moving Along

I am back here at the hospital, after a 2 day trip home to do earn my keep by doing payroll & paying some bills. Our church is generously supporting us during this time, for which we are very grateful, even though we really aren't working. It was great to be home but very weird that I was alone. My house was sparkling clean thanks to the lovely Anna & Becky. I had beautiful flowers from Christa & even got treated to dinner by my friend Patty. It was very refreshing! Oh, and sleeping in my own bed, ahhh! The warm hugs & welcome home's will tide me over until the next trip.

While I was away Evan had one really awful day (Wednesday) & one better day (Thursday). Today was even better than yesterday, Harold said. Evan is walking (well, hopping) better & farther each day. The surgeon said Ev can probably go home Monday, if the Infectious Disease people get a protocol together for us by then. He also mentioned that the I.D. folks were talking about keeping Evan on antibiotic therapy for possibly months, but we don't really know what that means, so we're not going to worry about that right now.

The surgeon also said that they will do Evan's femur repair surgery in the next 5-6 weeks. The surgery can't wait, as the femur will be damaged if they wait any longer. There is a risk of more infection, so please join us in praying about that. We are all more than ready for that "last" surgery so I thought I'd tell the surgeon, "You operate, we'll pray!"

Harold & I actually had dinner together alone tonight for the first time in 3 weeks. That was very nice. We went back to the hospital to check on Evan after dinner. He was happily watching "George of the Jungle" which I had brought from home for him. I had also had some pics developed that he took during his first stay at Barnes & on our trip to California last fall. (OK, so we're not real quick on the film developing thing.) He had fun showing the pics to his nurses. He is very comfortable being left at the hospital at night, something that is only possible because of the amazing staff & small nurse-to-patient ratio and by the grace of God.

A quick thanks to Danny & Sarah for hanging out with my guys on Wednesday. Sarah, bless you for leaving me a four pack of Godiva mochas!! Also, thanks to our pastor/friend Tom & bro Jeff for their visits yesterday. Jeff, although Evan didn't drink that shake you got him, God will still reward you for your effort. I'm not sure that's what Jesus was orignially thinking about when he said, "if you do this for the least of these..." but it's probably the modern-day equivalent!