The Road Not Chosen

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!

A Lot Has Happened...

in the 4 days since I last posted. I am home for 2 days to work a bit & tend to some personal business. It's really hard to summarize what's happened. So... 

   Evan's surgeon was out of town this weekend, so another surgeon who has been consulting on Evan's case came by. He is the Chief of Staff at Shriners & Chief of Ped. Ortho. Surgery at Children's Hospital. He could see that the very large hospital Ev was in was probably not the best environment for him care-wise & that it put a lot of strain on us as parents. Also, Evan's main surgeon was having to fight Medicaid every day to keep Evan there. 

Dr. Chief of Staff moved some major mountains & got Evan transferred to Shriner's Hospital on Monday. As it is all paid for by Shriner's, Ev can stay as long as needed to be well. Evan was so excited to be in a kid friendly hospital & the staff is beyond amazing! We are very blessed & happy with this move.

   Evan's incision site turned out to be infected with a staph infection. He is on 3 different antibiotics & had a port placed in his chest yesterday so he could get IV antibiotics for the next 3-6 weeks.

   Yesterday morning he had surgery again to clean out his incision site. It looked much better than Friday. They stitched him up & he now sports a bright green cast. It's still a modified spica, one leg is casted all the way to the ankle & the other leg is free. By yesterday afternoon, Evan was in the rec room shooting baskets from his reclining wheelchair.

   Today he is cranky & very, very angry. We feel this is somewhat to be expected, as he has had 3 surgeries in 3 weeks & you can't expect a guy to be happy every day when he is facing such challenges.  The staff is so wonderful & patient.

   The therapists got him to hop (with walker & support) on his good leg 3 feet today! This means he will be able to make it down the hall to the bathroom at home, something the therapists at Big Hospital said was not going to happen.

   Evan's catheter was finally removed today (hallelujah!) & everything is working fine in that area.

   As of today we have housing at a wonderful place that is sort of like a Ronald McDonald house. It is $25/day and that includes breakfast & dinner! Harold says it is in a nice suburban area, with shopping nearby. I am glad to not be staying at the Extended Stay Crack Hotel we spent 2 nights at!! I guess there was a reason it was $40 a night.

   We have no clue when Evan will get to go home. In the last 4 days it has gone from 2 or 3 days to 2 or 3 weeks then back to 3 or 4 days. We have decided he will go home when they walk in one morning & say "Go home!" It has been a huge challenge to just go with the flow in this area. I have shed many tears but am (for now) at peace & learning to take one day at a time. Quite the discipline for a planner like me!

Prayer request for today: that God would help Evan process his anger & help us know how to help him in this area. We know that he has to come to the end of himself, just like all of us do, and rely on God for strength. We have faith that Evan will be able to respond to God as he has always done before when he is angry & upset.

God has been providing for us in ways great & small & too many to recount here. We have had lots of friends who have driven from near & far to visit us. My brother-in-law & his family have been constant visitors, as we are in their city, which has been great.  My niece & nephews have been faithful encouragers of their cousin. We can feel the prayers everyone is praying for us, believe me. At times it seems as if we are wrapped in a huge, much needed, spiritual hug. Thank you, thank you, thank you to all.

Updates

Well, I just wrote a long post that I lost!!! So here goes again. What was supposed to be a 2 day stay has turned much longer. Here's the summary:

Evan & Harold were transported to the hospital in St. Louis on Tuesday night. I joined them Wednesday. Yesterday (Friday) the surgeon re-opened all of Evan's incision & found what looks like might be some infected tissue. They cleansed the entire incision, stitched him shut, & plan to re-open the incision on Monday to clean it out again. We don't know yet what kind of infection, if any, there is. The cultures won't come back until Monday. They have Evan in a brace right now & will re-cast him on Monday. Our friends Trey & Michelle have been here with us since Friday, which has been a huge help & blessing!

There are several areas of concern at the moment. They are:

1) getting rid of any infection. Evan will have a port put into his chest on Monday as he will be getting IV antibiotics for 3-6 weeks.

2) The next surgery to fix his femur is on hold indefinitely as they cannot operate until he is 100% infection free.

3) They are talking about casting both of his legs this time to keep his pelvis absolutely stable so the femur will not move and destroy the cartilage around it. If they do this, we are fairly certain we would not be able to care for Evan at home. Please pray for us that this does not happen! We need to find what our options are.

4) Evan had a severe reaction to some pain meds they gave him in recovery & stopped breathing. They were able to resuscitate him & his breathing has been ok since then.

5) Evan still has a catheter. It would be great to get rid of that. Please pray that his bladder will function properly when they take the cath out later next week.

6) Harold is having some health issues & somehow we need to get him checked out. Pray for both of us to have physical strength as we aren't getting much sleep.

We are, as Paul said in 2 Cor. 4 "pressed on every side by troubles, but we are not crushed. We are perplexec but not driven to dispair...Through suffering our bodies continue to share in the death of Jesus so that the life of Jesus may also be seen in our bodies."

I have some interesting thoughts on the sufferings of Christ as that pertains to Evan that I will try to post tomorrow. My brain is shutting down so I'm going to snooze in the bed next to my son. Talk to you soon.

Back To The Hospital

In the last few days Evan has developed some (presumably just) drainage somewhere on his incision site that is under his cast. He will have to go back to the hospital tomorrow to have part of his cast cut away, so the site can be inspected & treated. He will have to be put under some sort of twilight sleep or mild anesthesia for this procedure.

Harold had quite the wrestle with the bureaucracy of Medicaid today to get Evan's stretcher transport arranged. It will come very early tomorrow morning to pick up Harold & Evan. We are hoping this will be just a one day trip, so I will stay at home until we learn otherwise.

Evan seems to be taking the news well, hoping to see some of his new friends that he made during his stay. I'd like to say I'd originally received the news with the same aplomb as my son, but I'd hate to lie & then have to repent! I'm ok now & we are kind of glad the surgeon will have a look at him & maybe address a couple of the other issues that are still plaguing Ev.

A quick thank you to Julana at Life in the Slow Lane, who so wonderfully mentioned our family's situation. Hugs to you, my blog friend! I was greatly touched & blessed.

Prayer requests: a safe driver for the transport, smooth sailing through the hospital stuff & a speedy return home.

Today's Thought

Last week, a couple of days after Evan's surgery, this devotional from Elisabeth Elliot was in my e-mail. It couldn't have been more needed or more timely so I thought I'd share it with you today.

The Answer Is Always Enough

We often hope to be spared trouble or suffering, and surely it is legitimate to pray that we may be ("Lead us not into temptation" is a prayer Jesus taught us to pray). Jesus Himself asked the Father to take away the "cup"; Paul prayed for the removal of his "thorn." In both cases, the answer was no. But God did not give a mere no--He sent what had not been asked: strength to endure. An angel was immediately dispatched to Gethsemane, "bringing him strength" (Lk 22:43 NEB). His suffering did not cease--in fact, "in anguish of spirit He prayed the more urgently and his sweat was like clots of blood" {Lk 22:44).

The apostle was suffering in some physical way, it seems. The thing was called "a messenger of Satan," and he did well to ask for its removal. The answer was no--but something unasked was given: grace. There was plenteous grace to enable Paul to endure. What God gives in answer to our prayers will always be the thing we most urgently need, and it will always be sufficient.  ~ Elisabeth Elliot

Home, But Not Alone

Yes, we are home. The stretcher transport bringing Evan & Harold was supposed to leave the hospital at 4:15. I left at 2:30, driven home by a friend who had determined I was in no shape to make the 4 hr drive alone. When I arrived home at 7:30, I called Sarah, her husband Danny, & Jeff to help me unload the car & get things settled in. They had me unloaded & unpacked in half an hour. Quite the amazing feat if you would have seen how much stuff we brought back with us! The guy's ride didn't leave until 6:30, arriving home at 10:30pm Thursday night. Our friends Jeff & Chris were there to help unload Evan & take him around back, as he had to come in through the wide French doors, rather than the small front door. Our family finally went to sleep in our own beds at 12:30am.

Evan's bedroom is now the front room, set up very wonderfully by some of our friends from church. Sherry S. was the master planner, even creating a sitting room for Harold & I in Evan's former bedroom. Our fridge & pantry was fully stocked, including yummy treats. Each of us found our favorite candy bar on our pillows that night, courtesy of Sherry! (Yes, I ate mine before bed!)

I'd like to say our first day home was great but it really wasn't. Evan is still having a lot of groin pain due to swelling from the surgery & any movement is very, very painful. We had to get him into his wheelchair and that process brought a lot of tears, pain, anxiety, anger & more tears from our wonderful son. We would have loved to let him lay in bed all day, but that is a recipe for blood clots, bed sores & pneumonia, so we are having to put him through pain in order that he stay well. We have a wonderful home nurse, Cora, who is an old friend of ours. She has had some good suggestions & it's great to have a friend as Evan's nurse.

Harold & I decided last night that this is literally the hardest thing we have ever been through, ever. We know that on the other side of it, things will be fine, but for now it breaks our hearts to have to cause our son pain. Although mentally we know that each day the swelling will decrease & the sore places will get better, for now we have to take our own time to cry & ask God to give us the stamina & grace to get through this valley. Evan & I did happen to have a couple hours last night before bed where we were able to watch Food Network, laugh & reaffirm that we all love each other. That was a great end to a very hard day & I was enormously grateful for it.

Please pray for the following specific items for us: a rapid decrease of the groin swelling, grace, that Evan's appetite would return, and more grace for all.

Thanks!

Wednesday's Child Is Full Of Whoa!

Well, we didn't get to go home today. That's ok as it is one more day for Evan to get stronger and one more day for us to practice transferring him from bed to wheelchair and back. The plan now is to go home sometime tomorrow.

Evan is working so hard with the physical & occupational therapists. He has gotten 2 good nights sleep and we can really tell the difference. He does have a great fear of falling & of pain in his hip, but so would I! He works hard to overcome these fears. It is quite the balancing act to get him from bed to chair. He has to sit up (hard to do in a spica cast), balance on the edge of the bed, life himself up while holding on to the walker while remembering not to let his left foot touch the floor. Then he has to hop on one foot, maneuver the walker and move to the wheelchair. It seems kind of scary but two people are always there to steady him. It is an exhausting thing all around.

Last night Harold & Evan were talking about how great it is to have wonderful friends who have gotten our house ready for Evan's return. Evan's remark to Harold was, "We serve our friends, then our friends serve us." He has summed it up better than I could have! It is so wonderful to see the Body of Christ working together. I will admit that last night in the hotel room I was pretty overwhelmed with this huge change in our circumstances, wondering how on earth we were going to be able to care for our son, work our jobs and just generally get along. As thoughts of dealing with all the new daily details of our lives bashed against my brain, I asked the Lord, "How on earth can I do all this?" to which he replied, "You can't. Let the church be the church and let your friends help you." For someone who is as independent as I am, those are hard words to hear. Yet with God's help I can do as He has said.

Monday Update

Is it me or has everyone in this hospital gone mad? That was our thought this morning when we were told the plan was to discharge Evan today. Today, when he is still on oxygen, hasn't really eaten, and we hadn't learned how we are supposed to care for him.

Well, after many battles and conversations, we are cleared to stay, per the surgeon's orders, until Ev is healthier & we are more educated about his care. So I think it will probably be Wed. or Thurs. before we go. The case manager this morning was talking about Medicaid only paying so many days, yada yada, but tonight the surgeon said tough, we were staying & he would take care of the details. Meaning he will have the hospital write off what isn't covered. Either way I am glad not to be at home tonight. The case manager also said Medicaid wouldn't cover any equipment, such as the needed reclining wheelchair. Fortunately, Harold used to work in the durable medical equipment industry and called one of his friends who told him that is not true, it is covered for anyone under 21 years old. I am not sure why the case manager didn't know that. Thank God for friends! The case manager also told us that home physical or occupational therapy isn't covered. I'm going to call a friend who is an OT tomorrow and have her check to see if that is true. Good thing we are industrious people with connections. But really, I just want some sleep!

This afternoon Evan sat up in a relining wheelchair. It was his first time upright & it was painful and very scary for him and for us. The getting him up and transferred from bed to wheelchair seems complicated & overwhelming but maybe it's because we are sleep deprived. I know we'll get the hang of it. He was up for a couple of hours this afternoon & then again this evening. This evenings transfer was less traumatic but still painful. He is trying as much as he is able.

I have struck a deal with the night nurse to let Evan sleep for at least 6 hours undisturbed tonight. Last night was a series of follies that kept Evan & Harold from getting really any sleep. Tonight will be better. We know that if Ev can get some sleep he will be able to do more things. Like eat, for instance. He was so tired today that he wanted to sleep instead of eat. In fact, when left alone for more than 2 or 3 minutes, he fell asleep. So tonight, my son will sleep undisturbed or as Harold said, we will become mean people!

We did find out today that Medicaid will cover transport home, for which we are very glad. Our thanks to our friends who are going to our house tomorrow to re-arrange furniture and who went shopping today to get needed supplies for Evan's homecoming.