Out Again

John had his line placed this morning and is outpatient again! The line is not the temporary one we expected but a broviac again, that's okay though, in the end it takes the same amount of work to put them in and they pull out just as easily so long as it is done quickly. This time the doctor put a local anesthetic under John skin at the line site and so he didn't need to have any pain medication later. The other news from the line placement is that John's veins look good and he hasn't lost any line sites. This is a huge big deal as John will inevitably need a central line now and again through the years. These lines can only be placed in certain places and there are times when those veins just can't take it anymore and close from the scar tissue, John's haven't done that and we are so very thankful.

So tonight we are outpatient, we have the sad job of telling Dad good-bye but we are so excited that we should be getting to go with him when he returns on Tuesday! Thanks again to everyone for their prayers and support, being parents is not an easy job for anyone, adding in frequent hospitalizations and the reality of life threatening illnesses surely doesn't make it easier, but knowing that there are family and friends that care for us, love us and keep us in their prayers and thoughts does.

Home...the plan

We are so excited any time that the 'h' word is even mentioned by doctors! Today the plan was set at John will have a temporary central line placed tomorrow, he's scheduled for noon but could go earlier or later of course. He should be out patient by tomorrow afternoon/evening and then get to go home after clinic on Tuesday. We are anxious, excited, and even a bit giddy about the prospect of going home so soon. Truthfully my mind is all a twirl with the thought and so is barely able to land on anything other.

A quick update...

...as John is playing in hall with dad, ball and fellow backpack boy and I'm actually supposed to be paying bills, ugh. John and I had a great time staying with our friends this weekend, much to tell there but it will have to wait until I have more time. Sunday evening Birk rushed us to the hospital though as John was running a a fever. Long story short he has a central line infection, gram negative again. His fever got as high as 39.5 and the line was pulled, Cefepime added and he perked right up and was ready to play. John should be having a temporary central line placed on Thursday and then will be outpatient and maybe even headed home, much will depend on dad's ability to hang out until that decision is final, at least we should be headed home next week. His CO2 dropped during the night to 15 which is not good, but is repairable and just from the way he is acting I would say that it is already going up. I wanted to make sure to say a big thanks to the ladies from the Senior Center and the ladies from church who sent the big bag of toys - wow, you are awesome! John loves them and is having a great time playing with his little friend with them. Smiles all the way around!

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.