Just Wandering

Days with Mark gone are hard. He left for home yesterday afternoon and John was a little nutso for the rest of the day. Last night when I was putting him to bed he was ornery and mad acting and I finally just asked him if he missed daddy and was that what was wrong, he laid his head on my knee and just sobbed. So we are counting down the days, hours, more like the moments until daddy is back.

Today we did a good bit of wandering around and John was pretty good for most of it. He has been smiling and happy to see our friends here and enjoying riding around in his chair and pushing every available button, unfortunately including some of his mother's. But today one more time he decided that I was too slow, or too distracted, whatever, and by the time I caught up with him he was 3 hallways away. When this happens, it's really only happened twice, it's both scary and infuriating. He was soundly spanked and mom drove his chair all the way back to his room and then he had to be out of it for a couple hours before getting back in. He signed he was sorry over and over and I told him that I forgave him over and over and we both cried and still I just don't know what to tell him to make him realize that he just can't do this, so if someone reading this has some magic answer don't keep it to yourself, share it! After all that we still had a really good afternoon and evening and now he is snuggled in bed already asleep. He had labs done today and they were beautiful. His g-tube feeds are going up slowly but steadily and all looks well.

We are excited to have Charity and her family come to rescue us for the weekend. It always makes me a little sad that I don't have the capacity to haul John's chair with us, but still he is so excited to go and play with his friends and being rescued from the boredom of the hospital is such a huge gift. We look forward to attending worship on Sunday, our first time to be in church since the Sunday before surgery - I know it's only a few weeks but it seems like forever and leaves me again not understanding how people can just lay out of church most of the time and it not bother them.

I'll try to remember to take the camera with me and get pictures this weekend for a nice big Monday update. The mail that has come has been such a blessing, thanks to everyone for all that they send, mail, texts, emails, fb, etc., it all makes these days a little more bearable. Have a beautiful weekend!

Wordless Wednesday

The day with Dad!

Today I am getting to post the update on John and tell you about all the fun we had together.
Before I talk about the days events I want to share a picture and a little story from my time at home while John has been up in Omaha this past week.

This is my flower pot smoker inspired by Alton Brown of "Good Eats" on the Food Network.

I have long enjoyed pulled pork as I grew up in North Carolina, but haven't really had the money to buy a good quality smoker to do this right. I saw this episode "Q" where AB constructed a smoker from large clay pots, and now I finally have one. It works great, I still have some learning to do to really do it right, but for about $100 with all new pieces instead of several hundreds for a Big Green Egg I am willing to figure things out. The Boston Butt turned out really good, and if I want this smoker is big enough to do more than one.

Our night was uneventful and we got to sleep in a little too. Later this morning we went outside to see Jim Fowler, the former partner of Marlin Perkins of Mutual of Omaha's Wild Kingdom fame from TV a long time ago. He still works for Mutual of Omaha and came to share some of the animals he still works with, though much younger folks do the handling.

John just loved to watch the strange and silly creatures and we almost got a front row seat on a real chase between predator and prey.

This is a ringtail lemur a native of Madagaskar. It used Jim as a tree and launching platform as he told about one of these ruining Johnny Carson's velvet coat on the Tonight Show.

This is another jungle creature, a nocturnal animal that is called a "night monkey"

Of course also in this picture you see the observant little boy watching the creature hanging upside down and eating.

Here we have a little desert fox, a mouse chasing african creature that is quite interesting to look at.


Finally we saw the most interesting of the animals, a cerval, a long legged small bodied cat that has greater jumping ability than Air Jordan.

First the coiling for the leap.

The cat leaps so high as to take birds out of the air.

As it lands you can see just how long this creature is.

As they were taking the cat back to its pen a small bunny jumped out of the flowerbeds and ran out in front of Jim Fowler's table. The cat spotted it and began to give chase. The handlers and the other adults were quick to handle the cat and chase the bunny away. John had a great time and we also got to see some of our friends who were also there to see the animals.

This afternoon the Childlife folks had another special treat for us. One of the young men that works in their office and a friend of his study magic tricks. They did a lot of card tricks, they also did some fork bending and a few slight of hand tricks. The young men really engaged all the kids and the adults. They even had me handle one of the forks that they twisted and bent with ease. It was a real one, not a flimsy trick piece. They also had John participate in a very well done card trick. They let us keep the card and one of the forks.


All in all we had a pretty good day together, but we miss the mommy and while glad she has the chance to spend time with our friend we are looking forward to seeing her tomorrow.

A Rainy Sunday Update

Now that I have the computer set up in our Lied (outpatient) room let me share a couple pictures that I had from home before we left.



What is he so intent on? The computer of course, what else. The child has learned to work the computer in ways that continue to impress me. He's always been pretty good at electronic things, but this has grown by leaps and bounds lately. Lol, as soon as he can read and type a little I think I'll let him start updating the blog a bit himself, really I probably will just find occasional updates and 'know' where they came from.



Before we left I was able to get a little sewing done and these are the hospital gowns for John's stay. Kids get so few choices in the hospital that I figured this would be nice for him to have some control over. Now that we are outpatient he still is wearing them just because he likes the fabric I guess, he's definitely got an opinion about which one he will wear when, opinionated, you bet, we love to see it!

Since the last update we did get a room upstairs, out of the PICU but still in patient. We hated it! Okay, the nurses were nice, the room was fine, but still we hated it. It's very hard when the nurses aren't doing anything more than what we do day in and day out and all we are doing is sitting and waiting. John had an upper GI done and all the contrast stopped about half way through his bowel and then came back up. I was scared this meant that he would need further surgery but Dr. Grant told us that he just needed more time to heal. John now has enough gut, weird sounding, that it just takes more time for it all to heal and wake up properly. Finally last Monday we were allowed to go outpatient, up until yesterday we did the exact same things, wait, watch, let his bowel rest and replace the fluids he lost. Ah, but it was outpatient, so while the medical stuff was the same the days are much different, they still get long and boring but they are less frustrating and less annoying because we have control over our schedule and how and when things get done. I will admit that it was rather tempting to use our new found freedom to do whatever the heck we wanted to with regards to how much John could drink, eat, do etc., but maturity and reason (don't know where those came from) set in and so we used our new found freedom to distract John from the unpleasantness of the rules under which he needed to live.



Lot's of laughs and playdoh time with dad was a great distraction.



We have watched more tv and played on the computer more than I would care to admit too, but some of it has been rather funny and at this point John had stood in front of the couch for a good half hour and then I don't know why but he decided that laying on the coffee table was a good option.



The purchase of a little dvd player has been a great investment. Not only does it help time go by in such places as ER's and hospital rooms, but John loves to run the thing himself and lounge, I have moments when I wonder just how close 5 is to teen, he sure reminds me of one at times.

Today we are anxiously waiting for dad to come back. The days that Mark is here fly by, the days that he is gone creep by so slow that I literally lose track of which one we are on. John's gut has healed rather nicely and he has been clamped (g-tube not open to drainage) for over 12 hours and is doing fantastic. We should easily be able to restart feeds on Tuesday after he is seen in clinic. He hasn't needed replacement fluids in over 24 hours and while I don't have lab numbers to prove that he is doing fine I can look in his face and watch his actions and tell you that he is doing great.

During these long days we have enjoyed visiting with friends in the hospital, John is fascinated with Quintin's sister, she has heelies and is silly and he is just positive that he should follow her wherever she goes. He wakes up in the morning asking me if we will see them again today, and most days we get to have lunch with them so it breaks up our days nicely and seems to entertain them too.

Before I leave this off I want to say, Papa, I'm sorry I've not been updating this as regularly as you would like, I'll try to do better, we think of you every day and I wish that you had a window into our room so that you could see what this goofy grandson of yours is up to, he's a nut and getting nuttier every day (how could he not with his mother). We love you and I'll try to get back to doing this on a regular basis!

Thank you everyone for the prayers, calls, texts, emails, mail, etc. These days are long, slow and boring and you help make them better. In the end though I am glad that they are boring because that means that everything is going fine, if slow. I was reminded again the other day that we are not here for ourselves, but to bring the comfort of Christ's love wherever we can. If you have room in your prayers please add a 20 something mom that is down the hall from us with her beautiful 2yo and 2 month old babies, they are fine, but her husband, her only family pretty much in this world is dying of cancer and barely even knows that they are here with him. We get to visit and talk to her as we go in and out of the hall here, John makes her smile, we do all we can to help. Look around you, you know someone who is hurting and in pain, that's why you are here, give them a hand, even if it's just a smile for their day, let Christ shine through you to the dark and broken world around you.

Technically out of PICU

John is technically not required to be in the PICU anymore, but since there is no open room upstairs for him he is still in there. He is however not on the monitors anymore and has been able to stay catheter free. He took a ride in his chair today, we had all forgotten just how much it took him to learn that and I think it was a big shock to all three of us just how much this surgery would take out of him. He was also a little overdue for pain meds, so it was a slow half hour in his chair but we did see improvement in him being able to watch where he was going throughout the time. Mark and I have figured that we will skip PT and OT here and just work on getting him back to zooming that chair all over the place, along with letting him do lots of coloring and stickers and such. They are giving him little trials with his ng tube not hooked up to suction and we are in hopes that he won't have to keep it much longer. It is very irritating to have the tube running down his throat and something that he is not used to and so last night he barely slept, he was finally out of the morphine long enough to make him really aware of just how irritating that tube was. Being the smart little boy that he is, he knew better than to yank it out because they would just put it back in, but them spent the rest of the night trying to gag it up, needless to say a very restless night.

His water is very limited in trying to get the tube out so all the distractions are a great help. Mail came again today, stickers and coloring pages and cards and he loved it. Thank you for all the contact that we have received, it really makes a difference not only in John's day but in ours to know that we are not doing this alone. And Rachel, tell your boys that when I left upstairs to come type this that John and his dad were playing with those planes again, they are a huge hit and the first thing that he asks for when he wakes up. When he's feeling a little better I'll get a good pic of him with them for your boys to see. They have certainly shared many smiles with John.

We continue to pray, to be hopeful of a sooner rather than later recovery, and enjoy our days together no matter where they are. Mark is headed home tomorrow, but we will look forward to seeing him again on Sunday and John and I will fill those days with as much silliness as we can figure out how to do.

Poop!

Poop means that John's bowel is awake and moving, tonight we had poop, we cheered! It also means that John will likely get rid of his ng tube soon, may really get out of the picu tomorrow and is getting ever closer to getting back into his chair for some zooming! Today has been long but good and has had a few bright spots in it aside from the aforementioned poop. John received mail, a package from Rachel, a looper friend, that contained glider planes, we have all had a great time with them and they really have brought a lot of smiles to a little boy, his parents and even those who have occasionally needed to duck when planes go flyingbacross the hall. Thank you Rachel! Our other bright spit came when Charity brought the kids up to visit. John wasn't strong enough to visit for long but what a big difference a visit with friends make here. John will have a great time with the toys they brought and we will all be looking forward to the next visit. Thank you Charity! The phone calls, texts, emails, fb comments and comments here make a big difference, thank you for those and for your prayers!

John is out of surgery

And we are waiting to get to go be with him. Dr. Mercer told us that he did quite well, that his bowel had dilated quite a bit again and had also grown in length. He was able to STEP some of it and just narrow some of it too. He says that John now has 150cm of much more uniform small bowel (for reference that is the same amt that a healthy newborn would have). He did express concern about John's colon, that it is somewhat dilated and not as reactive as it should be. He tells us that in a few years John might need some work done on his colon but for now it will just need to be watched carefully to make sure that he doesn't get too much bacteria growing in there. We are of course thanking God for guiding Dr Mercer's hand and for all the staff and care that John has received. At the same time we once more rejoice in the unexpected blessings provided, this time in the form of a little 6yo boy who needed someone to play with in the waiting room, he's been a great distraction for a very worried daddy. Thank you all for your prayers and concerns and friendship, this path in life is so much more bearable because we do not walk it alone.