Home and running

We arrived home last night pretty near 8 p.m. There were a few delays getting out of the hospital, none of which could really be helped in the end. We went straight home--we did not pass 'go' or get gas or food. Despite leaving at the height of rush hour, we had a pretty clear drive home.

It took a while to get everything settled once we arrived, but there was a delicious homemade meal waiting for us and we were all finally in bed by midnight.

This morning, the plumber is working at the house, installing the plumbing fixtures (sinks and toilets). The power company was there too, waiting for the much-needed rain to let up so they can trench in our power line and connect it to the house. The HVAC man is supposed to come this afternoon to finish up his stuff. Things are moving along and we are still trying hard to make a Nov 2 or 3 move in date. Thanks for praying for us.

James is doing very well, by the way. He needs to stay awake more today so that he can sleep more tonight!!

Thanks for stopping by!

Love, Stephanie

The stars of the sky

It is a wonderful thing to live in the country. It is delightful to see children grow up in a rural setting. There are so many wonderful lessons here... for them and for me too.

The other night, we had arrived home from working on our land, preparing our new home to live in. We had unloaded the children from the van and everything and everyone was inside, except Owen. I looked out to seem him staring at the sky, studying the heavens. He was motionless, which usually only happens when he is sleeping.

I walked out to where he was, put my arm around his shoulder and squeezed him with a hug. He responded by putting his arm around my waist and hugging me back. But he still stared up at the sky. I looked up with him, waiting. Grateful for an 11-year-old son who is loving and affectionate--not embarrassed to be hugged by nor to hug his Momma.

Then he spoke. "Momma. It's really neat to look at the stars out here. The more I look and try to count them, the more I see to count."

So I looked with him for a time, peering in to a very small part of the heavens, counting stars. Before I could count them all, more appeared behind them... and behind them. In a very short time, there were far too many stars to count. Soon after that, there were too many to see individually as they just kept appearing in clusters.

As we turned to walk to the house, we talked of Abram and how he had tried to count the stars. We wondered if, perhaps, we had counted some of the same stars he counted.

"Then He brought him outside and said, 'Look now toward heaven, and count
the stars if you are able to number them.' And He said to him, "So shall
your descendants be." And he believed the Lord, and He accounted it to him
for righteousness." Genesis 15:5,6

Home early, we hope

Please forgive my many typos in the last posts. I have been in a hurry to get off the computer and get back to James and I'm not doing the best job of proofreading.

Yesterday was a great day. We had a long time with the family and Vern and I were able to just sit and talk about things we haven't been able to talk about for some time. I was glad to get some snuggle time with Becca, too, who has really been needing her Momma to be a little more available--we have been talking on the phone a lot and I am glad to be able to do that. I always like to be able to hug the children and tussle their hair. It's so nice to say and hear "I love you" in person. I pray I never take that for granted.

Today our favorite Nurse Practitioner on the floor, Colleen, came in and said, "I'm going to find out what we need to do to get you guys home." Hooray! The goal is to get us out of here tomorrow although we might not make it till Wednesday. (Tuesday would be a good thing to pray for!) James' counts are good, none of his cultures grew back any kind of bacteria and he is more and more like a two-year-old in captivity here! He still cannot eat anything by mouth and won't be able to until everything heals up really well. He is usually fine with this as long as we are sensitive not to eat in front of him. For nutrition, he would go home on TPN (IV feeds).

Dr. Tenjarla said that the healing of James' g-tube site was 'miraculous'. Please pray that healing continues. James was due to have chemo today, but that will be postponed. Pray for wisdom on the timing of starting that back up. Of course, all the delays will mean that his treatment lasts longer, but that is okay.

On the house front, things are moving along. It was a productive weekend and we should actually have power connected to the house today or tomorrow--that will be a big milestone! The plumber is planning to come Wednesday to install all the fixtures (except for the kitchen sink). We are hoping the kitchen counter will arrive Wednesday to be installed Wednesday or Thursday.

Thanks for your prayers and thoughts. I am hoping to get over to the library this afternoon. That is my 'last chance' for uploading photos to the blog. It would be okay to pray about that too! :*).

Love, Stephanie

Busy hospital day

James' g-tube site showed significant improvement today. Even this morning it looked much better than it did when we went to bed last night. He is quite his perky little self!

Our biggest challenge is splitting up to have an opportunity to eat since he isn't supposed to have anything by mouth. We are getting that figured out.

This morning we went to the AFLAC Bingo in one of the conference rooms. James won a slinky, the book, _Green Eggs and Ham_, and a Nerf football. He was much more interested in the football than the last round of Bingo, so we decided to head up to the library to check out the camera. Our hope was to get some more pictures (the garden in beautiful and the weather today was the just incredible!) and then go back up and get help posting them onto the blog here.

On our way to the garden, we met some new friends, Adam and Allison and their two-year-old daughter, Lacey (I hope I'm spelling these right). Lacey is a beautiful little girl with Down syndrome. She has heart issues and feeding issues and is very petite. It was fun to watch James and Lacy interact.

We got some time in the garden and then had to run back upstairs when one of James' IV lines disconnected. It was easy to fix and then we were on our way. By the time we made it back to the library, the computers were all in use and James was in desperate need of a nap.

I have been trying other computers to see if I can post some pictures on the blog, all to no avail. I will not give up! ;*)...

We are very much looking forward to the family's visit tomorrow. We heard they accomplished quite a bit at the house today, PTL!

Hope you have a restful, worshipful Lord's day! Thanks for stopping by.

Love, Stephanie

Two Weeks !?!

James' GI doctor, Dr. Tenjarla, came by yesterday to see him and take a look at the site. She thought that because the it had aroded enough for the tube to fall out, that we should probably plan to be in the hospital for at least two weeks. My first thought, of course, was, "Two weeks! Oh no!!" My second thought was, "Well, Lord, you've worked everything else out so far, You must have a reason for this." I still reserve the 'right' to hope that Dr. Tenjarla is wrong...but it is okay if she's right!

James has been pretty perky and friendly, giving out lots of hugs, kisses and handshakes and generally being a pretty sweet encourager. Many folks he has interacted with have said that he 'made their day' (or in some cases, their night). Everyone loves to see him sign and they just can't get over how 'smart' he is. James is very good at 'working the crowd' and he just eats it all up!

Today, there were some street performers who visited the hospital and performed downstairs in the open area. We decided to go and it was worth it. James got to 'spin' a soccer ball, with a little help from one of the performers. They also serenaded him with Twinkle Twinkle Little Star and one of the performers signed with him a little bit...

We were able to get some photos with one of the hospital's loaner cameras. I will post some when I can find a computer with a CD-ROM drive I can access.

Katie and the home crew have continued the work at the house and we are not yet ready to give up on our hope of moving in to our new home by 2 or 3 Nov. Today they sanded the painted walls (they were sprayed and get bumpy...my Mom and Aunt will come down to do the final coat with rollers). In the meantime, everyone and Mr. Bruce will be working at the house tomorrow and they plan to come for a visit on Sunday.

Please pray:

1. That James' site will heal thoroughly and quickly and that the surgery and GI folks would have wisdom to decide if it would be best to save the site or let it heal all the way and put in yet another g-tube.
2. For wisdom about his IV feeds--that we would get the right amount of protein, fluids and anything else that he would need all mixed in.
3. That things will continue to progress with the house--folks would be able to come when they've said they could and/or when we need them.
4. That I will be able to get in touch with the plumber and that he would be able to come early next week to install the fixtures.
5. For the family's safe travels up and back on Sunday.
6. For Vern generally as he has all the home things on him, plus work and being concerned about his sweet boy in the hospital. For Katie as she works extra hard to fill in my spot while I am gone. For Owen, Becca and Carrie as they continuing helping and trying hard to be sweet without Momma hugs and loves.
7. That God would be glorified in all of this and we would keep resting in Him.

Thanks for stopping by!

Love, Stephanie

Back at the hospital

This run of methotrexate and vincristine seem to be giving James quite a challenge. Monday evening we realized that something wasn't right with his g-tube site. It looked thinner and looser and sort of purplish-gray. I called the clinic on Tuesday morning and they said since is wasn't pink or red and he didn't have a fever there wasn't too much they could do. They said keep dressing it like we had planned, give James meds for pain and call them if anything changed.

Thursday we had a hard time keeping him comfortable and that night, when we changed out his dressing, we all thought we could see the balloon inside his tummy that holds the g-tube in place through the ever-thinning and widening hole. We called and talked to the on-call doctor and she said come on up. We'd already planned to try to get him in to see his doc on Thursday after he was so uncomfortable, but the kicker was the view of the balloon. He'd also had pretty low white counts (ANC=117) on Monday.

We made it to the ER by about 3 a.m. this morning and as I lifted James from his car seat to carry him in, his g-tube just fell out onto the parking garage floor. (Eeeewww) Fortnately this seemed to relieve the pressure to the site and he had less pain than he had before, PTL.

Right now he is on more antibiotics, we think it is infected again, but not sure with what yet. The wound/ostomy nurse set him up with a pretty spiffy dressing and we are supposed to take care of it. Tomorrow James will get IV feeds (TPN) with a greater portion of protein to , hopefully help him heal.

The one good thing is that the things we did to help prevent this did seem to help with the erosion from the outside. Virtually all the erosion to the site was from the inside, Since he will have a similar course of treatment every 12 weeks for the next 22 months, we need to figure out some way to prevent or minimize this erosion to his g-tube site. I would appreciate your prayers for wisdom as we work together with his care team to devise some sort of plan.

We have been working hard on our house with the goal of being able to live in it by 2 or 3 Nov. By God's incredible mercy, we are still very hopeful we can make it. Katie, Owen, Becca and Carrie worked there today and we have made a good deal of progress in the past week. Please pray for them and for Vern as we are all 'dividing and conquering'.

I hope to have an opportunity to update again while we are here. We have been having technical difficulties with the computer at home... and we have been VERY busy. Your notes and e-mails have been a big encouragement...thanks so much!

Love, Stephanie

Home again, home again...

We are grateful to be home. We came home Tuesday afternoon. It looks like the staph infection that was growing out in James' blood culture looks to have been caused by some sort of contamination since none of the other cultures ever grew out staph. This is very good, though they were treating him for staph, just in case.

We came home with IV antibiotics (meripeninem--I have know idea if I am spelling that right, the label says Merrem). The entero bacteria that grew out in his grew culture was very sensitive to this drug, so all the doctors agree this was the way to go. I have to give it to him three times a day (7a.m., 3p.m., 10p.m.), so that is a little more challenging/limiting that the vancomycin we did twice a day before. However....it is far less limiting than being in the hospital!!!

The weather has been phenomenal here--anyone from Minnesota want to plan a visit? :*)... we are all looking forward to sitting on our front porch in the evenings and watching the stars. It is very dark out here and as Owen said last night as he was staring up at the sky when I brought him home from the house, "Momma, it's really neat. The more you look at the stars and try to count them, the more there are!"

We have lots of plans for progress on the house over the next several days. Vern has school holidays on Friday and Monday and we have friends planning to help us get the bulk of the painting done on Saturday. We all missed church on Sunday and are looking forward to being back this week... all Lord willing.

Thanks for your notes, I am trying to figure out how to respond via e-mail easily. Thanks for being patient with me. Pam, I'd love to hear more about your new little girl and life with two soldiers in the family.

Love to all... Stephanie

Home tomorrow?

James just finished getting a blood transfusion (because his hemoglobin dropped to 6.6 this morning). He is looking much pinker and less tired. Once we get a visit from the GI nurse to switch him to an adjustableg-tube, we'll head out for a walk. He is doing much better now that we have him on all the right antibiotics. We are waiting til tomorrow to see if perhaps the staph infection was due contamination of sample, since he hasn't grown out any more staph so far.

They are working on getting IV antibiotics set up for home and we are hoping to head home tomorrow (Tuesday), Lord willing.

Please leave a note if you can. We love to hear from you and know who is following James' progress. Thanks for stopping by.

Love, Stephanie

We're baack

We made it home fine Wednesday and we had a day at home too... well, sort of. Owen and I drove to the scratch and dent appliance place Thursday and took advantage of Georgia's 'no sales tax on energy saving appliances' weekend (Oct 4-7). We were able to find all the appliances we need for the house except the gas cooktop--we will keep looking for that one.

Thursday night, James was cranky and never really fell off to sleep. At 2:00a.m., he spiked a fever of 38.6*c (101.5*F). After talking by phone with the pediatric oncologist on call, Hannah, James and I headed off to the emergency center in Macon. They gave him antibiotics and fluid, drew some labs for culturing and said we could go home, but to call if James got another fever.

Friday James did well, until bedtime. He was pretty uncomfortable. We thought maybe he was in pain because he was shaking and crying and was inconsolable--even with Lortab. At 11 p.m., he spiked a fever again. This time it was 38.8*c (101.85*F). We talked again to the oncologist on call and headed back to Macon. Everyone communicated well and it turns out that the previous culture was already growing out gram negative rods. This includes scary little bacteria like E. coli, klebsiella and entero bacteria. All fine bacteria in the right place, but not in the blood. James got more antibiotics, gave a little more blood for more cultures and took an ambulance ride to Children's. Hannah and I followed in the car.

Now that we know what he needs in terms of antibiotics, he is doing MUCH better. It turns out, his culture also grew out staph, but we don't know which kind yet.

Vern and the other children drove up to spend the day with us today.

Thanks for checking in on us.

Love, Stephanie

We're outta here!

Well, we're getting ready to get out of here. I just came back from hunting down a wagon to haul all of our loot to the car and Colleen, our Nurse Practitioner, asked if I'd heard... heard what? I asked... that you're leaving...

So, we still have to finish packing and get our orders (and two prescriptions) and then we'll head out.

Not sure when I'll be able to post again, but please pray for our house efforts.

Thanks so much.

Love, Stephanie

Counting down

In an hour, we will draw James' blood to check for his methotrexate levels. If it is .02 or less, we get to go home. It will take about an hour for the test results to come back.

This morning we had to have a little excitement, so we woke to a nastly sour smell in the room. Turns out it was James ;*)... the medicine port on his g-tube had come open and about three hours worth of his formula leaked out into the bed all over him and Hannah. While Hannah jumped in the shower, I cleaned up James and the bed. We finally had to get our friend, Mrs. Alice, from housekeeping to help us get the smell out of the mattress. She used some sort of 'miracle juice'. I'll have to ask what it was!

Other than that, we have talked to lots of people today--nurses stopping by to see James and say 'hi' as well as the nutritionist, the ostomy nurse (who brought us some new options in ostomy bags for us to try out), the social worker, and the doctors and nurse practitioner. I sure appreciate all the specialty care that is available and how everyone works to coordinate things and keep Dr. Keller in the loop.

We hope to see the hospital in our review mirror around 5 or 6 tonight. I may not be able to post before we go, but I will if we have to stay! :*)... so no news is good news.

Thanks for stopping by.. and for your prayers. James is doing very well and we are very grateful.

Love, Stephanie

Waiting

James' chemo is finished and now we are waiting for 24 hours (with fluids) to see if he will again flush his methotrexate out within the first 24 hours following the end of his chemo infusion. the chemo ended today at 3:40 p.m. Tomorrow at 3:40 p.m. his nurse will draw his blood and then we will wait for the results to see if we get to go home tomorrow night. We are hopeful, but it's a pretty objective standard!

While we are waiting we have read, napped, snuggled and watch the whole series of three Hallmark "Sarah, Plain and Tall" movies. Don't watch without a box of kleenex if you are prone to do silly things like weep over movies. I used plenty.... of kleenex.

Last night, there was a family standing in the hall about the time we went to bed. There was a doctor talking with them. This morning, some of them were in the hall again. Some looked like they had been crying. A couple of nurses and one of the fellows were there and they were talking quietly and hugging. As they left the floor, I wondered if something quietly tragic had happened. Had a family lost a child? It was so quiet. It seemed to pass almost unnoticed.

Later in the morning, I saw a nurse, a Christian young lady I know well, and asked if a child had passed away this morning. She looked a little surprised. She told me what she could--the child was a girl, she was about three years old. She had a tumor in her head, but not a brain tumor, maybe a muscle tumor. She had been in pain, and the family was, partly, relieved for her. She was in the hospital primarily for pain control.

It was really odd to me to have such a HUGE loss just two doors down and to not even be able to tell them I was sorry. To have a sense that this had happened and yet not have anything to say. Perhaps they preferred it that way and that is OK. But off and on during the day I have thought of this family and another I knew when we were in Maryland about thirteen years ago who lost a daugter to a brain tumor. As you read this, would you pray for this little girl's family--that the Peace that passes understanding would guard their hearts and minds in Christ Jesus. I do not know if they are believers.

So I am especially grateful that the Lord has chosen, for now, anyway, to preserve James for us. He is such a joy and a treasure. He is so full of life now and growing and doing normal things. He loves to greet people with a handshake and seems to be the consummate little gentelman when he does it. I am glad that he can be such a bright spot for many. I wonder, with great hope, what God has in store for his future.

Love, Stephanie

Settling in

We're all settled in at the hospital. One of our favorite nurses got us all set up. James and I were snuggling in his bed watching the Mr. Fixit Bible videos and Hannah had gone out to see if she could find a wheelchair we could use to take James for a walk. He was asking (with signs) to go for a walk.

Just about the time Hannah returned with the treasured wheelchair, we realized that something on James was leaking. Hannah found his IV line had come disconnected! Thankfully, it had only come apart along the IV line and it didn't get pulled out of James. Our nurse came right in and got things cleaned up and hooked back together. I was relieved that it didn't end up being a HUGE chemical spill situation. We changed the bedding and were giving James a bath to be sure none was left to sit on his tender skin, when he plopped his foot into the bathing basin and tipped it over, flooding his bed. We rescued him and dried him off, finished cleaning him up and then waited for the bed to dry before we made it up again.

By the time we went for our walk, it was nearly 8:30 and we were grateful the cafeteria was still open--we just made it. Now we are at the library (checking the times they are open tomorrow :*) ).. and shortly we hope to return to the room. I hope to be sleeping soon. I have been up since 5 and didn't get the nap that Hannah and James got on the drive up... nor the nap James had this afternoon.

Hopefully the rest of our visit will be a little less exciting!

Good night.

Love, Stephanie

P.S. Daddy, Vern thinks the computer problem has something to do with a device driver, but that is all we know and is from the error messages we were getting.

P.P.S. Vern and some of the children spent more time at the house tonight. If you think of it, our goal is to move in the first of November--ambitious, but possible, Lord willing!

Next

James' methotrexate started running right around 3 p.m. Lord willing, we could be on our way home around 5 p.m. Wednesday. As I type, he is napping with Hannah in an infusion chair and we are waiting for our hospital room to be cleaned.

In the meantime, I was working with our social worker here to find out why it looks like James' medicaid has stopped. Some of the answers I can't get because I'm not the Payee for James' Social Security (which also stopped). It has made for a busy afternoon and the early morning this morning has made for a tired Momma!

I did talk to Katie and she is pretty sure they were able to putty all the nail holes at the house and they moved some things out of the living room (like plumbing and lighting fixtures) to a closet, so they would be out of the way of the painters.

Thanks for your prayers.

Love, Stephanie

Catch up

Hannah, James and I are back at the hospital for a scheduled chemo treatment after enjoying about three weeks at home. We were beginning to actually feel normal! Yes, it was GREAT. And we are thankful for the break.

Just after I started trying to keep up on blogging about our house progress, the computer died. Vern tried to fix it with Norton Utilities to no avail. We think the next stop is the Geek Squad, but I'm not sure right now when that will happen.

We are grateful for continued progress on the house. The baseboard is all in and all the doors (including pocket doors, which weren't up before) are up. There is one more little trim detail that needs to be finished before painting (this weekend, Lord willing). The children will work this week on spackling all the nail holes in the trim and generally cleaning up and dusting the place. They also hope to get more roots cut out of the garden area so that we can plant some Fall crops (like broccoli, kale, brussels sprouts and carrots).

We are waiting for James' urine to clear so we can start his chemo. I will try to update later since we have access to computers here at the hospital.

thanks for checking on us... Love, Stephanie