Going Home

John is doing well, plans are being formulated, his line is getting pulled and we are headed home - Thank GOD! (meant in every reverent and thankful way that it can be said) I'll post more news as soon as I decompress enough to think ;)

Praying for Bugs...

...or actually the lack there of. John has been 2 days without any IV fluids, I have done everything short of lay on the floor and beg the docs to take out his temporary central line now. The poor nurse coordinator is in the middle between docs who want to see him make it through the weekend without needing to use the line before they pull it out and parents who are scared that he will end up needing to use it to get antibiotics to kill the bugs that attach to it over the weekend. That woman needs some kind of medal, or at least kevlar underpants, not that we've been purposively giving her a hard time, but just that it's hard to be caught in the middle between two sets of people who have such opposite and voraciously held opinions. So this weekend we sit and watch and pray. We pray that John's line will remain infection free until Monday morning when the poor-kevlar-underpants-deprived woman promised that she would get that line out of him if he made it through the weekend without needing it. We pray that John's docs are right and that this one last weekend won't cause him weeks upon weeks of setback because of yet another line infection. We pray for our own sanity and that we will remember that God is in charge of even the most minute details including microscopic critters that will hopefully remain in John's gut this weekend and not decide that it's time to vacation in his bloodstream. We pray for the kevlar-underpants-deprived woman that she will have a nice weekend with her family and not burn out in this job because she keeps getting caught in the middle between obstinate doctors and obstinate parents. We pray, and thankfully the Holy Spirit understands our prayers because honestly this weekend they will probably be a mish mash of gibberish and crazy, in the end we pray in thanksgiving that the God who created us knows that we are sinners full of doubt and fear and loves us so much that He sent His only Son to die and rise again to forgive us and to carry us through days of crazy headedness or surely we would be lost.

I Love You Dad!

John does this cute one handed 'I Love You' which usually has a finger pointed towards the intended person, tonight he was exhausted from playing all day but still when he heard daddy's voice on the phone he was signing 'Love You, Love You, Dad, Dad' and then blowing kisses. So this picture is for the most amazing dad from the most wonderful little boy who loves you so very much.

John is sound asleep already, he's to the point where he is feeling good enough that he doesn't want to take a nap in the afternoon and complains if I make him lay down for a while. His clinic appointment went great though and the nurse coordinator said our favorite 'h' word without me even asking. If John can continue on his current path then he can get his temporary central line pulled out on Tuesday and go home, wow that would be wonderful. Tonight he's only getting 200 mL of IV fluids, that's less than his standard fluid bolus that he gets when he is having issues, so if labs are good in the morning we will not run any IV fluids tomorrow night and then see how he does. The nurse was a little reluctant to send him home so quickly because once they pull the line it means that if he needs fluids he will have to have a peripheral IV placed, I let her know that Columbia has these wonderful ladies on their IV team who take such great care of John and it was a done deal provided John does well between now and then! Thanks Kim and Ellen!!

I'm looking forward to seeing what the morning brings and then in the afternoon Charity and her chicks are coming to see us and that will be fun! Of course the Scholastic Book Fair is here at the hospital tomorrow and Thursday so I am impressed with her bravery :)

4th and More!

Well I don't have a picture from the 4th of July, I totally forgot my camera but Charity will post some and I'll link to her blog when she does. I also don't have pictures of John playing with his Godcousins on Saturday, but Angie does and I'll link to her blog when she posts them.

I do however have this picture of



John sneaking out of bed yet again. Silly boy, he's gotten very good at this and is now even trying to get into the gait trainer himself. He's not managed that one yet but I'm sure it's closer than I think. He's also getting much, much quieter at this, and last night I didn't even realize he had slipped out of bed until I heard him in there attempting to reprogram his IV pump.

Mark came in on Thursday afternoon and John and I were both excited to see him. John enjoyed showing him the new tricks that he figured out. Like running down the hall and then picking his feet up and hanging in the gait trainer by his arms as it rolled along. He does this down ramps too and just loves it. He also showed his daddy how he can stick one finger in the hole on the water fountain and then hit the button and make water spray everywhere. I have to keep a close eye on him to keep him from doing this, because he thinks its way cool, and it doesn't help that it makes me giggle.

Friday we went out to Birk and Charity Baker's to celebrate the 4th of July. We had a wonderful time and John was enthralled with the whole thing. First it was fun to watch the other kids light smoke bombs and throw snap-n-pops but soon John was in on the act and throwing snap-n-pops too and carrying smoke bombs out to whoever would light another one. He loved the loud bangs and pops and light and smoke and by the time we carried him home he was exhausted and happy and covered with dirt and powder and whatever else he could find and looked thoroughly like a little boy that had a great time!

Saturday wasn't quite so good, I heard him cough a few times in the night and then Saturday morning we could tell that he just wasn't feeling as good. His lab numbers were kinda off but he still enjoyed getting to play with his Godparents and Godcousins who came to see him. He showed off how far he could walk and loved having Rachel show him books and sit by him. We had a great visit with our dear friends and after they were off back to the wilds of Wyoming we took John back to our room and hooked him up with some fluids to help him get over this snotty hump.

This morning John was back in his finest form, running down the halls, playing with the water fountains, turning circles in the cafeteria, and in general making his cheerful presence known everywhere he went. This evening he even asked to hold half of my sandwich and took a bite out of it - one bite, but for John that's pretty darn good especially in the hospital. He's sleeping peacefully tonight, maybe the snots are leaving, maybe not, but he seems to be compensating well and we are finally being able to get his g-tube feeds back up. I'm looking forward to what his labs are tomorrow and to find out how clinic goes on Tuesday.

Here's the last of the older posts that I had written out and finally gotten posted.

June 24th post: God's Mercy is Tangible.

June 21st post: Amazing Doctors, Big Dogs, Good Drugs, and a Wonderful Husband.

3 more weeks, more or less...

...is how long they figure that we'll be in Omaha. John had a temporary central line placed this morning because we just couldn't go through another poke for an IV, he's well over 20 heading to 30 pokes since last Thursday and that is just too much for a little boy. So we had to solemnly swear that we would not go home and that we would not leave town with this line, but everyone has great hope that this will get us home, broviac free, by the end of the month. We are back in our Lied room without having to spend the bulk of the day in the Treatment Center so I should soon be able to catch the blog up with all that's been going on. I've been writing out posts in a notebook, and notes here and there so there will be some back stuff but I will link to all of that from new posts. A couple days of real sleep and we should be back to normal, well at least as back to normal as we get :)

Here's the first older post.

Omaha Here We Are

John was transported via ambulance to Omaha today. We have much to be thankful for and many people to thank, I'll go into all that in another post. For right suffice it say that he is doing well, we are all pooped, and it looks like he may need to stay here for a while but should be able to come home without a central line.

God's Mercy is Tangible

We are preparing to transfer John via ambulance to Omaha this morning. Last night we sat up and watched a little boy struggle. John's CO2 dropped to 9 yesterday evening (20-25 are normal values), this is very, very acidotic and acidosis can do very bad things to your body. An emergency EKG was ordered in the middle of the night because John's potassium was so high that he was in heart attack and heart damage range. Labs in the middle of the night showed numbers that fairly screamed renal failure - not a very comforting word. Through the night John made poop that we've only ever seen liver failure patients produce.

The night was long and dark and the storms out our windows only added to the gloom inside. At times like these I find that my mind cannot focus to think or even to pray. All human words fail me and my mind, body and soul clings to those Words of God that have been repeated so often that they are as much a part of me as is my flesh and bones.

The Kyrie quickly comes to mind, those simple cries "Lord have mercy, Christ have mercy, Lord have mercy" echo in my mind as I sit paralyzed, unable to do much more than watch my sleeping boy and listen to him breath. I know full well that God's mercy of healing takes many forms and can just as well come in the healing little body that fights off acidosis and renal failure and that God's perfect mercy is no less perfect and no less merciful when it comes int he ultimate healing of heaven where little boys no longer struggle against broken bodies. At these times the tears are surly for me because I cannot imagine life on this side of heaven without a smiling little silly boy to love and hold and watch grow up and yet I know that is a very real possibility and that should I be forced to cross that bridge that Christ in His Mercy will carry me through each painful step so that I can again share His Mercy and Love with those here who need it despite by sinful nature that would rather curl up in a ball of despair and live only for myself because I would miss my little boy so much.

The Kyrie gives way to the Creed, to the knowledge that God our Father created this little boy and Christ has redeemed him and me too. The Creed fades into the Lord's Prayer and while it takes me a while to quit choking on 'Thy will be done' because that means that John is indeed in God's hands and not in mine, but as I remember that God's will for John is perfect as is His will for Mark and I and slowly I am able to go on to 'daily bread' and remember that God provides for all our needs, including the need for healing - both earthly and eternally.

Finally I am able to 'thank Thee my heavenly Father, through Jesus Christ, Thy dear Son that Thou has kept me this day from all harm and danger' for surely nothing of this world, not even a broken body's tendency for weakness and acidosis, can truly hurt us, for we live in Christ and He in us. I'm able to find sleep with the prayer that the 'evil foe may have no power over me' and rest in the knowledge that no matter how the battles look to be going the war has been won by Christ and His Mercy extends to every little acidotic cell.

Today I woke to a little boy who though tired from the ordeal of the night, had smiles, wanted his hearing aids, had opinions about what we should do and even played with breakfast. His labs, the tangible proof that the clinical evidence portrayed the truth of what was going on took forever to come in. Mark came to be with us as we waited, after all where else would such a wonderful daddy be on a day like today. John felt good enough to kick a little soccer ball up and down the hall with Dr. Moto and to run a play a little.

On this day God's perfect mercy came in tangible numeric proof. John's labs weren't just good, they were amazing. Not only was his acidosis rectified, but his liver and kidney numbers also look great. The relief was tangible, us, the docs, nurses, everyone who knows John had a new twinkle in their smile that despite all our efforts couldn't be achieved earlier.

We are still headed to Omaha because John has more than a weeks worth of anti-fungal and antibiotics to go and they really cause havoc with his gut. We are going because this is John's best chance to go home central line free. We are going because the experts in short gut are there. We don't yet know how long we will be there, for our own sanity Mark and I have to plan for a time period, then if it's shorter we celebrate and if longer we learn to adjust. This time we are setting our mental clocks for 4 to 6 weeks.

Before we leave we will have to say good-bye to some of the most amazing doctors, residents, med-students, nurses and hospital staff that we know. We are convinced beyond doubt that the love and dedication that these people have for John, for us, and for all they serve is yet more tangible proof of God's perfect Mercy.