Check-up Time

...in our neck of the woods. John finally stayed out of the hospital long enough to make it to a regular GI check-up. That's a lot to celebrate right there. But there's more. His GI nurse was thrilled with him, he looked great, his weight is finally stable (no gain yet, but no loss and that is a big victory) and his labs looked fantastic. She called this morning to tell us that his blood counts are up to normal levels and therefore no more Monday and Thursday epo shots - HOORAY!!!! On our scale this morning John picked up a little more weight even and is looking chipper and playing with toys. His little cheeks are starting to fill out again and I'll see if I can get him to smile for the camera sometime today. Our GI nurses advice yesterday was to "take him home and
keep doing what you're doing, he looks great." Wow! What a wonderful thing to hear. Thanks everyone for your prayers and well wishes, your support means more to us than we could ever tell you. In Christ's Love, Mark, Gina and John who is currently lounging on the futon playing with two enormous stuffed ducks ;-)

Check-up Time

...in our neck of the woods. John finally stayed out of the hospital long enough to make it to a regular GI check-up. That's a lot to celebrate right there. But there's more. His GI nurse was thrilled with him, he looked great, his weight is finally stable (no gain yet, but no loss and that is a big victory) and his labs looked fantastic. She called this morning to tell us that his blood counts are up to normal levels and therefore no more Monday and Thursday epo shots - HOORAY!!!! On our scale this morning John picked up a little more weight even and is looking chipper and playing with toys. His little cheeks are starting to fill out again and I'll see if I can get him to smile for the camera sometime today. Our GI nurses advice yesterday was to "take him home and
keep doing what you're doing, he looks great." Wow! What a wonderful thing to hear. Thanks everyone for your prayers and well wishes, your support means more to us than we could ever tell you. In Christ's Love, Mark, Gina and John who is currently lounging on the futon playing with two enormous stuffed ducks ;-)

PICU again!

John was admitted to University Columbia on Tuesday evening for a fever. 38.4 at home and then 38.9 by the time that we made it to the ER. Of course it is yet another line infection - this time sepsis. During Tuesday night he went from 38.9 to 34.1 and exhibited other shock symptoms like extremely low blood pressure. Very scary but he remained on the floor. Wednesday morning he was looking better and continued to improve slowly through the day but by Wednesday afternoon it was decided that he should be moved to the PICU for closer observation. A move that we were happy to see.

The PICU here has some definite advantages over the PICU in St. Louis, one of them being that we can use cell phones in the room, bring food into the room and one of us can sleep in the room. Which worked out well being as John slept half the night with me. His stomach is very very gassy and he is upset by it. It’s the first time that I’ve ever seen a farrell valve pouched out. This morning he looks really puffy to me. I’m waiting for when he is awake and in a good mood to see if that is just me, or if he really looks puffy. Of course they gave him a little lasix last night and now are chasing fluids, but that is just par for the course.

St. Louis. Well they want him stable and there now. Of course. Mark called yesterday to see if he could talk to Dr. Hanna himself, of course not. Sandy called back and said that they want him stable and moved. The doctor here said that if they want him and she thinks that he is ready to travel that is fine but they will fly him. For that I was glad. At this point I don’t know. His specialists are in St. Louis but the docs and the care that he is receiving here has been nothing short of excellent so we are willing to let them work it out amongst themselves. I always feel guilty that we leave here and go there - not that we are really doing something wrong, but these are excellent docs too. I just never want them to think that we leave because we think that there is something wrong with them. It’s just that well even if it wasn’t for the docs St. Louis has Sharon, John’s favorite nurses and PCA’s and such. Of course we had Ashley first thing here, we always have her here and we like her very much. I don’t know I always feel torn because both hospitals are so good and maybe I should just focus on how blessed we are to have two such good places for John to be.

This sepsis looks like it might not get as scary as the last one. Of course that didn’t stop mom from being upset because in her opinion we should have had surgery done and now. I don’t think she understands that at this point, at least at the last time that we visited this discussion the risks of surgery outweighed the possible benefits especially with John showing adaptability like he was. I figure that once we get to St. Louis we will be there for the long haul as they will want to work on feeding stuff again. That’s fine, this time we prepared there is at least a months worth of stuff packed in the Jeep ready to go today if need be. Maybe that will be the ticket to keep us here for a few more days and then home. Doubt it!

The adoption was finalized on Monday but of course we don’t have the paperwork to prove it so John is still Craft on everything. If we do our normal month in the hospital though we will get to change all that probably first of next week. Jen sent flowers and balloons, she is wonderful. Everyone sent their congrats via email and it is so wonderful to have it all done.

Officially Done

Our lawyer called this afternoon to let us know that John is now officially John Allen Hass - his adoption was completed today!!!

Health wise he is doing pretty good, making little baby steps each day. For now he is lounging in his chair playing with his rings and throwing things on the floor as he tires of them!

Thanks for all your prayers and well wishes along the way - it's so nice that today he is finally officially ours!

In Christ's Love, Mark, Gina and John

Officially Done

Our lawyer called this afternoon to let us know that John is now officially John Allen Hass - his adoption was completed today!!!

Health wise he is doing pretty good, making little baby steps each day. For now he is lounging in his chair playing with his rings and throwing things on the floor as he tires of them!

Thanks for all your prayers and well wishes along the way - it's so nice that today he is finally officially ours!

In Christ's Love, Mark, Gina and John

The Long Good Friday

John's snarky nose was worse this morning when he got up and he had started to run a fever too. He did play, smile and carry on until about the time that Desiree, his occupational therapist, came and then he was starting to feel worse again, the tylenol was wearing off. He did cooperate with her a little bit, she is a sweet lady who knew that he wasn't feeling too well so instead of pushing him too hard she cuddled and visited with him and he rewarded her care and concern with some smiles and 'sweet talk.' She is coming back on Tuesday, we are hoping that he is up to a little more work then, but thankful for even his good humor today.

When our little sweetie got up from his nap his fever was 38.4 C and so we called the pediatrician and his advice was to take him to the ER. Not very often do we go to the ER and come home without hospitalizaton but today was one of those blessed days. John and I stayed at the ER while Mark went to St. Paul's, the country parish, for the Good Friday Tenebrae service. While he was gone we found out that John didn't have RSV, the flu or strep - HOORAY! All his labs and x-rays look like an upper respiratory infection and so we are home for lots of fluids, rest and some tylenol and motrin to alleviate the symptoms.

Even after all the long day of it, he was smiling and playing before we put him to bed. We've not seen him this easy to make smile while he was sick and so have high hopes of it passing soon. He's doing well and even holding his own hydration wise. One more night we are thankful that our precious pumpkin is sleeping in his own bed and for this night we pray that he feels better and stronger tomorrow.

Easter Friday

Jesus Christ is risen! He is risen indeed! Alleluia! Alleluia! Alleluia!

Mare is here and we're waiting for final word on going home. John's labs looked great this morning. Dr. Hanna is on board that we can go home, just waiting on Dr. Rothbaum's okay.

Therapy went well this morning. Christine, PT, and Emily, OT, worked with John for a while then Jane, ST, came in and he actually talked to her a bit. Kelly the student nurse hung out with us and blew bubbles, John of course hollered and complained but worked through all of it.

Emily commended us on our healthy attitude about John and his need for independence. I can't imagine wanting anything else for someone that I love so much.

In the conversation with Dr. Hanna this morning I offered to do vitals and all kinds of stuff and he told me that he didn't want us to feel like we were running a hospital out of our home. I told him that I'd rather try to run a hospital out of my home than try to run my home out of the hospital. He told me that when he is training his fellows in the future he will remember this quote from a wise mom. He has also complemented us on several other things and told John that he was very blessed. It feels good to be appreciated for how we love John and take care of him - please God help us to keep taking such good care of John.

Jesus Christ is risen! He is risen indeed! Alleluia! Alleluia! Alleluia!

Easter Tuesday

Jesus Christ is risen! He is risen indeed! Alleluia! Alleluia! Alleluia!

The new computer came today!

Paul called first thing this morning to tell us how thrilled he would be to write the recommendation letter to complete John's adoption. I'm thankful for Paul!

John's day started out with great lab numbers but a distended and painful bladder. Dr. Hanna came just in time to hold him while he was hollering. There are times when I really like him! Tina and I offered to get him a baby backpack so that he could cart John around and she and I would go shopping.

Susan was John's nurse for the most of the day and he straightened right up and had a great day after 3 or 4 good pee pee diapers. Susan sews! I told her about the online fabric places I knew and she gave me her email address so that I can send her fabric stuff and pictures of John of course!

We went out a couple times just to hang out at the desk, John loves it and so do I.

Terry Shaivo died today, Jodi and I talked about it and I was at least able to make her think. I think it's sad how undervalued life is, even among good people that I like.

Mark is on his way here tomorrow!!!!

Dr. Rothbaum came by this afternoon, I asked him if he though we'd make it home in April, he was noncommittal. Jodi can't babysit here because of liability reasons and I'm so ready to see some home time!

Jesus Christ is risen! He is risen indeed! Alleluia! Alleluia! Alleluia!

Easter Wednesday

Jesus Christ is risen! He is risen indeed! Alleluia! Alleluia! Alleluia!

The evening certainly went out with a bang and not a whimper. The mom of another little girl that we know here at the hospital came by to visit for a while. She is so sweet and so young, I cannot imagine going through this at 18, and with no family support to speak of. She's been here for 5 months and her beautiful little girl's medical conditions make John's look polite and uncomplicated. John of course kept puking while she was here including one time that the puke spot on the towel looked like an angel playing a trumpet. Too funny! I am thankful for moments of humor!

Another mom came to visit while Mark was down in the cafeteria retrieving onions and jalapenos to make supper more palatable. The docs told her yesterday that her daughter won't live and that they really don't know what is wrong. She won't gain weight and has an unexplainable high fever. They want to talk about DNR next week. The little girl is precious, 17 or 18 months old and despite all of the medical conditions she has beautiful intelligent eyes that take in everything. She was our roommate for the first day or so that we were admitted this time. Her mom loves her so much and is trying to decide whether or not to bring her 2 year old brother to see her before she dies. Dad is worthless to the nth degree. My heart just aches for her and I want so much to tell her about Christ and baptism and eternity but when she was here I said nothing. I'm very ashamed of me. On the other hand, Mark is here and he doesn't start crying each time he thinks about it, so I asked him and he will go speak with them today. Again I am so thankful for him!

To round out the evening John's CO2 was 9. I asked them to draw labs earlier in the day. Things worked out but I would have been so overwhelmingly ticked if they would have put him in the PICU last night. He looked great comparatively - God made his little body in such a way that he compensates very well for these things without going into respiratory distress. Tina was here, she's one of John's guardian angel nurses! Lots of fluids through the night and his bicarb is up to 11 and he looks fantastic, although he's still pooping blood. I'm asking them today to eliminate the really scary reason for the blood - liver failure - for the sanity of this mom! I also want to know if we are going to talk to nephrology - I believe acid/base balance is at least in part kidney function. We'll see, I sitting here waiting for Dr. Hanna who was supposed to be here before 7am, it's 7:30am. I'm thankful that God created John to be such a little fighter!

Tina just came with a message from Susan who wouldn't go to sleep last night until she knew what John's CO2 number was and is already awake this morning thinking about John! She wonders if the bleeding is due to changing out John's g-tube yesterday. A good question, I will have to pass that one along. I am thankful for awesome nurses who go the extra miles to care for my son as if he were their own!

Jesus Christ is risen! He is risen indeed! Alleluia! Alleluia! Alleluia!

Hooray the puking has stopped! One brief episode this morning and nothing since despite drinking 18+ ounces of water by lunch. The bloody poops are over too! The theory about the blood being irritated stomach lining seems to be the thing. John made it through the rest of the day with no puking, no pooping and no blood anywhere. Right now he is peacefully sleeping in his crib. What a beautiful boy! He did perk up this evening while we were playing cards and was kicking his foot to move the balloon around that I tied to his ankle. He was very entertaining and then went quickly off to sleep after Mark left for home.

With Mark gone I have time to reflect on the day. He talked to the mom of the dying little girl and went by to see her later and baptized the little girl. He also called Pastor Asbury to help provide ongoing support and together they are going to find pastoral care for her at home too. Of all the tings that we've seen God do at this hospital this is the most comforting. To know that precious little girl sleeps safe in the arms of Christ and will soon see Him face to face and peer into His loving eyes with those beautiful intelligent eyes He gave her, gives us peace amidst the sadness that we feel for her family and all who love her.

Good news, my computer shipped today and soon I will be able to post from John's hospital room! Also Ressy posted new fabric and none of them work for us, but the dungeon sale will be next week. When Sharon came by today she was very impressed with my grey shirt and amused that I planned on sewing my own bras. Sharon is such a joy!

Also from Janeene, she still hasn't gotten all the reference letters needed for our home study. We can finishing paying LFCS through this year and she is trying to hold out on paperwork as long as possible so that we have time to get home and get our physicals and last home visit in. Just have to get John well enough so that we can get home to finish his adoption.

Hopefully things will go well when we start John's feed tomorrow. We are all ready to go home! But of course we need to be here now and besides being here with John is much better than being anywhere without him. It is so hard for Mark to go home and we miss him very much when he is gone - God bless these congregations for their willingness to share his time with us.

Pastor Erik Rottman came by today to visit, pray and brought the Arch book that he wrote which was just published. It is very, very good, almost creedal. It looks like Mark's fellow pastors are going to rally around and support us through these hospitalizations. We sure need them.

Tina is back again tonight. Dr's Hanna and Rothbaum have been pretty good throughout the day and we have hopes for even better stuff tomorrow. John is off of contact isolation so we can roam a bit. Stacey was his nurse today and she was very good, she always is!

Jesus Christ is risen! He is risen indeed! Alleluia! Alleluia! Alleluia!

Together Again

Jesus Christ is risen! He has risen indeed! Alleluia! Alleluia! Alleluia!

Mark came on Easter evening and brought us just what we needed - him! We miss him so much when he's gone. He also brought the Lord's Supper which we shared to evening prayer. I am very thankful for Mark, my good and faithful husband who is also my good and faithful pastor!

Monday morning brought sunshine and John looking great. Of course it made thoughts of getting out of the hospital dance in our heads but that won't be coming on a permanent basis for a while. However we did get a day pass!

John's first PT and OT in the gym went very well. I still like Paul Chang best of all for home, but while here I'm glad that this time he's seeing the actual therapists and not just their assistants! They showed us a different way to lay him on his side - we'll be trying that for nap time today. I am thankful for St. Louis Children's Hospital and their wonderful staff!

After therapy we saw Sharon real quick and she is going to pursue his chair! We're always thankful for Sharon!

Susan was our nurse yesterday. She is a kind-hearted, gently soul and a great advocate for her patients. We've not had her since John's initial stay or so but we've always like her. She brought in 2 pm meds early so that we could be on our way. She's our nurse today too and that is definitely something we are thankful for!

John's very first zoo trip was yesterday. We had a great time, he watched the people and at one place he watched the fish too. He did pretty darn good for his first try to sit up in his stroller like a big boy for any length of time. The zoo is full of good memories from my childhood and even as an adult going with Mark. It is our plan to take John lots and lots, we hope to go each month or so that he has appointments and maybe another leave during this hospitalization too! WE are thankful for such a good zoo, so close and free!

Dinner was at the Macaroni Grill. Wow! The very first time since we left New Orleans that we have had that fine quality of food. Certainly a place to which we would like to return. I had the fillet with a light blue cheese served in garlic mashed potatoes with sauce. Oh my! And the cheesecake - well let's put it this way, it was better than mine! I am thankful for God's blessings of good food, great cooks and good company to eat it in!

A trip to Walmart for necessities rounded out a really good day. John puked throughout the day but remained our smiling happy boy. Coming back to the hospital wasn't even too bad. Becky was our nurse for the night and she is always a joy! I am very thankful for such good congregations that allow us to have time together!

Jesus Christ is risen! He has risen indeed! Alleluia! Alleluia! Alleluia!

This morning brought not so great lab numbers, big poopins and tons more puking. Thank God Susan is back. A 75mL fluid bolus and John is perked up some. I personally think he could have used some more! They are putting him back on contact isolation until a stool culture comes back negative and of course they want a urine culture also. We're kinda thinking a UTI looks likely but hopefully not. I am thank to have John here where he is well cared for!

Something new happened. Mark who has always been a good and loving dad has started focusing more on John without sideline distractions. I've never met a better dad! I'm thankful for this wonderful man who loves us!

Jesus Christ is risen! He has risen indeed! Alleluia! Alleluia! Alleluia!

Christ is Risen!

Jesus Christ is risen! He has risen indeed! Alleluia! Alleluia! Alleluia!

The long penitential season of Lent is over. It's not been my usual lent. No midweek services, no beautiful minor key lenten hymns, no continual focus on my sins. I miss lent but I'm very thankful that Easter is here. I'm painfully aware of my sins, blemishes and shortcomings. I sit here at the hospital with doubts, fears and worries so much and am glad for today's focus on our risen Lord and Savior who died on the cross to forgive my doubts, worries and poor attitude, my selfishness, dwelling on my own problems and forgetting those around me, and rose again to put the seal of our Father's approval on the divine payment for me. All is taken care of. My sins are forgiven and today is all new.

Tina or some combination of the staff around here played Easter bunny, John has a beautiful basket with a big yellow chicken in it, a precious moments doll, some bubbles and a chocolate bunny in it! These are the most generous and wonderful people. I am thankful for them!

John threw up 3 times last night. The last time at 1 am, Sara, one of the residents, came to tell me that Hanna wants John fed through all these episodes. Later after I hooked him back up and had him asleep Tina came in to see if I was okay with this. I told her that there had been several GI decisions that had been made in which I thought they were nuts and it worked out well. So I was sure willing to give this a try. Besides you would think that all those years and dollars in med school not to mention the experience too, they should have good ideas that I couldn't think up on my own. Now I understand why Hanna was telling me about keeping him hooked to his feeding tube 24 hours a day. They have the same communication difficulties as everyone else. I took puking and a resident to explain that he meant feed him through these episode and of course that is why Sandy kept saying push him hard like it was something new and had to be done in hospital. Despite all the communication mix-ups I am very thankful for this group of people who years before John was ever born went to school and learned how to take care of him!

God's gift of vocation is as wondrous, magnificent, and miraculous as His gifts of creation and redemption and all of them! To think that so many of these people years and years ago learned their skills or were given the drive and desire to learn them and that through these many hands God cares for John and his complicated and challenging needs. I have never understood vocation as clearly as when I sit here. Nor has it given me peace and contentment with my current circumstances so fully as here. I am so very thankful for Mark and my other pastors who have taught me the faith so that I may sit here in contentment waiting on what God has in store.

Jesus Christ is risen! He has risen indeed! Alleluia! Alleluia! Alleluia!

What interesting things the day has brought so far. When I was doing John's g-tube care he lost 120 mL that I was able to measure and probably half again that much at least. After all the excitement from that wore off we were laying here playing with toys, nearly asleep when he threw up. Rothbaum came running in the door. Surreptitiously checked his hydration and pronounced the situation okay and said that the plan was to turn him to 40 mL's for 24 hours and see how he does. Should be interesting. I didn't eve brooch the subject of a therapeutic leave tomorrow. I am thankful for Gretchen, a very good resident, who is in charge of John's case and has to be the go-between with GI. I pray for her sanity!

Jesus Christ is risen! He has risen indeed! Alleluia! Alleluia! Alleluia!

After yet more puking we ran John's tube to gravity and let him drain for a couple hours during which time he drank some water and puked again. For now he's hooked back up to his feeds at 20 mL/hr. We'll see what we shall see!

Mark finally called, thank God! I was beginning to think about how I was going to take care of him after another major wreck and take care of John too. Phew, he's safe and sound just can't remember to bring his cell phone with him. I swear the next holster the man buys needs to be for that damn phone. He needs to go see Bob Blumhorst and then he'll be on his way again. He is asking Bill to send someone after the dogs. Sure am going to owe bill a big one when John gets home from this one. I am so thankful or God's blessing of good Christian people for Mark to serve.

John sat and played with me for a while. What a gorgeous heart-warming smile. Now he's laying on the pillow playing with the new bear he got from the hospital for Easter, sucking his lip and trying to put himself to sleep. He is so precious. Each moment that we are with him is a blessing beyond measure. Today, like everyday I am thankful beyond words for our precious son!!

Jesus Christ is risen! He has risen indeed! Alleluia! Alleluia! Alleluia!

Mom

Tina's here tonight. Surprised that we are still here. Oh well. She told me about a therapeutic leave - talked to Mark and I think we are going to try for one on MOnday if John is doing well.

For the moment he's doing great. Of course, that's after he puked twice tonight. I attribute the 1st to pushing meds too fast but with the 2nd one I don't know. Tina's going to wake me at 4. If John hasn't puked by then or the ferrel valve isn't real high we're going to bring him to 37. I'm looking forward to seeing his labs in the morning.

Christy is the roommates nurse. She sure loves on John. She's another one who brings up John's biological mom often. I guess we've been through so much with John that it's hard for me to think of him having another mom. I don't ever want to hide from him that he's adopted but I never want him to think that we could have loved him any differently if he had been born to us. I pray that God always gives us the wisdom to handle this right so that he never ever feels that he is anything less that our perfect, lovely son.

At the same time they've found him another wife. They are too funny. The nurses are PCA's keep 'fixing' him up with other chronic kids. I keep thinking sister but of course these wild women are planning weddings!

Typical?

This day started so typically. Screaming from the kid down the hall and frustration. But between Mark helping by talking to me, Rothbaum and Hanna coming in and most of all Pastor Asbury bringing the Easter story and the Lord's Supper it is much better.

John slept well until 4 when Karissa changed his poopy pants out of pity. Then I moved him and he slept with me. But with no peripheral IV and only the lines that I'm used too it was much more comfortable, even on the hospital 'couch'. The bonus of having John sleep with me was that I realized he was tight and in trouble before he puked. I think he got a shot of full strength formula by accident last night - maybe not, but that would be the easiest explanation for this morning. A little puking, not much, a little venting and a couple hours off then 3 watery stool diapers and we're back to normal.

Pastor Asbury came by. He's from Wyoming and he looks so familiar. Too funny - black cowboy boots and dress western pants just like Mark. He has a beautiful communion kit, much like what Mark wants to develop his into. But most importantly he came with the good news of Christ's resurrection and forgiveness for my sins that I could taste, feel, and smell. He's going to continue to see us as we are here and any time we come back we just have to email and let him know and he'll come help us stay connected!

Carla came in to visit. John just loves her and she is so sweet and nice to him. Later she came back with a little green Easter bunny for him. People here are so nice. The lady from Child Life came by with a balloon and a blanket after his surgery - and everyone comes by and makes him and us feel loved.

Rothbaum and Hanna came today. Rothbaum is so intense - he kinda overwhelms John with attention and then by the end John will smile and talk to him a bit. They were pleased with progress so far, said that the goal is 45 ml/hr total fluid intake for now and that they are already going to start turning down his IV fluids. It will be interesting to see what the rate looks like tonight.

Shelly is John's nurse today. No PCA. She is very kind and sweet and nice to work with. She totally understood about having nothing to do around here and let me mix John's formula. I took John out with me to give it to Carla for the fridge and he had a great time. I sat him on the counter and he 'talked' to Carla and the other nurses and finally about the 5th time that Hanna walked by he stopped to play for a minute and John finally smiled just for him!

Lunch was ho hum as always but afterwards we walked down to the gift shop to get a bunny for John's roommate. She is so cute and she's here through Easter too. She and her mom speak no English and of course I speak no usable Spanish so it's hard to communicate even with the husband who speaks some English. But they are the nicest people, one of the best roommates that John has had.

PT came by to evaluate. She's going to recommend 3x week in the gym, hooray, out of the room. She agrees that we need the chair and also said that we need a standing fram at about 18 months to help him bear enough weight so that his hip joints develop properly. She also said no sleeping on back anymore - only side to side and that tummy time is important of course.

Answers to Questions?

Rothbaum and Hanna came by a while ago to visit and make sure I was okay and to answer my questions! I told them why we were worried and that we hoped for no surgery and were willing to stay as long as necessary. They actually understood! and realize that it's not easy to stay here! Rothbaum said that John has a good chance to come through this without surgery and his liver is not in imminent danger because we've seen no bleeding, no abdominal fluid retention and no protein loss. So there is hope!

Maddening

As always everything here changes or stays maddeningly the same. The walls are the same, so is the food and the level of exhaustion. But John isn't going to be back on TPN - at least not yet. His IV fluids are only going to run 12 hours at a time.

Finally got a chance to talk with Sharon and she with Rothbaum and Hanna. They sound hopeful to get John off TPN and broviac free without doing the STEP procedure. We hope and pray that is how it goes. We have the utmost trust in Dr. Keshen and believe that if STEP is needed he is the best person for the job for John but even he seems to hope it's not necessary.

Sharon may be able to arrange a sit down with all docs involved. I think she called it a Care Conference. We want to know how long John's liver will hold out and therefore how long before the STEP would have to be considered.

When I see Hanna tomorrow though I need to find a way to clearly communicate to him that A. we hope and pray John cane come off TPN without any surgical intervention and B. that we will sit here as long as it takes. I have to be more careful with how things are said around here because I don't want anyone to think that we aren't prepared to sit still and wait. It is the damnable miscommunication around here that drives me insane.

Margaret is our nurse today. She is so nice and so maternal it leaves me nothing to do. So I've had time to write and go for walks and even found 5 yards of Munki Munki Cowboy fabric to buy. I have no clue what I'm going to do with 5 yards of that fabric other than making stuff for John out of it. By the time I get home my sewing room is going to be buried under fabric and such. Mark is going to bring the Fitting book up for me so that I can order the tools and notions that I need to use the book when I finally get home.

John's napping peacefully the crane is moving back and forth outside the window and it's tempting to catch a nap but I think I'll crochet for a while instead. Oh and think about all the things I can don on my new laptop with it gets here.

Good Friday

John's broviac was placed yesterday. Despite it being the 6th line Dr. Keshan said it went in easy. The night went well. Mark's at home, of course, and we miss him but I'm determined to remain positive about things. John looks good. His labs, well his bicarb is now up to 35. Still running D10 w/acetate but have cut acetate in half and since bicarb is continuint to rise and feeds are started we cut the rate from 45 to 20. Today should prove interesting. TPN starts again today - I'm asking for only 12 hours but we'll see how that goes. It's still hard to sit here - but we are going to get out and go do stuff and that will make it easier by a long shot. Dr. Peggy Chern - 1st year resident, ours for a couple more weeks I believe; very good, one of the best that I've seen around here - not that we've seen lots of bad ones, just that she's one of those that is especially good. One of the pastors is supposed to be in tonight. That will make things easier, I need that help focusing on Christ and His Word. I told Mark I feel very disconnected here, and I do, but much of that is my own fault for letting myself be that way.

On To Plan B

Plan A - diluting John's formula and increasing the rate until he could be IV fluid free resulting in puking at 3am. But John is still doing well and we are on to Plan B which if it goes well will also result in no IV fluids. It is necessary that he gets a new broviac central line placed, that should happen on Thursday. Because of necessity of frequent blood draws, and need for quick IV fluids while we are trying to get him stable, he needs a new line. But they are going to give him a little dose of anti-fungal every week to help ward off infection and they are hopeful that we can have the line removed permanently in the next couple of months.

For the moment it looks like we will be discharged on Friday, although they are sounding like they want to keep us close so we may end up at Ronald McDonald house here in town for a while. Every one is trying very seriously to keep John off of TPN - he came off yesterday.

We'll let you know how plan B is going, and if it doesn't work there are already other plans being hatched ;-) Thanks again for your prayers, love and support. In Christ's Love, Mark, Gina and John - who is doing great and smiling lots

3 1/2 tsp Miracle

3 1/2 tsp, 16 mL's a little over 1/2 ounce per hour is the rate increase that John has had on his formula since Friday. This from the child that has until now never made more than 1 mL increase in a day. And it came with no puking, no explosions from the other end, no g-tube leakage and no fussy, upset pumpkin. So John is now at 80% of his caloric needs being met through formula. There is now a real discussion going on about him not needing his broviac replaced - where that will go we don't know at this point, but this is the first time it has even been a possiblity.

Other than this feed increase there is more good news. John has gained weight, the first weight gain since he was discharged from the hospital before Christmas! Just a couple ounces, but the first time the scale has said anything higher at all.

And more good news. Everyone that knows John - and there are lots of people here that do says that he looks better and more healthy than they have ever seen him before - and he does. He looks fantastic. His coloring is beautiful, less jaundiced and his cheeks are nice and rosy. He is talking up a storm, entertaining everyone that looks at him and in general having a great time.

John's last dose of fluconazol is on Wednesday, he is scheduled to have his broviac replaced on Thursday. Also on Thursday we are supposed to be discussing the STEP procedure again, and home on Friday.

How things will actually go is anyones guess from here and all in God's will!!! What we have seen this weekend has been awesome and we thank God for how wonderful our little pumpkin is looking and doing. We also thank Him for each of you, for your love, prayers and support. We'll write again later in the week and let you know how things are going. Love and prayers, Mark, Gina and John - who is now sitting up in his stroller like a big boy (not in the car seat) reaching for the toys on the tray with his one un-IV'ed hand.

John's Weekend

John was admitted to the PICU at 3:45 am on Sunday for severe acidosis. Normal body pH should be 7.35 John's was 7.02, normal body CO2 (bicarb) should be in the lower 20's John's was 7. He scared a whole bunch of people but in the PICU began to recover rapidly and this morning he is doing great with normal numbers, even for other people not just normal John numbers. While in the PICU we also found out that he has RSV. While that can be a devastating illness in babies John seems to be handling it quite well. He has not needed any oxygen support nor other breathing helps and for all the world just sounds like he has a pretty bad cold - which is really what RSV is. He continues on the fluconazol - antifungal drug and other than that seems good. He will probably be moved out of the PICU today and back out on the floor.

The acidosis was brought on by a combination of factors but probably the biggest was being a bit too aggressive in turning down his TPN and pushing his feedings - but the aggressiveness of treatment with John's GI issues is what keeps him chugging along and developing well. The GI docs are now going to address John's feedings by divorcing the two issues 1. his need for caloric intake and 2. his need for fluids. What this means for John is that for the moment he is back on full TPN but once he is out on the floor and ready they will start his g-tube feeds again. As the g-tube feeds increase they will take the caloric things, amino acids and such out of the TPN. Of course this means that he has to have a new broviac central line put in later this week or early next week, but once the caloric things have been completely removed from the TPN his liver will start to recover and his line will be less susceptible to infections. After he is getting all of his calories through his g-tube and/or by mouth then they will start to try to wean him off the IV fluids. This of course is going to take some time and will depend heavily on what John's system can handle.

As always we thank you for keeping John and us in your prayers. We''ll try to send a pic of John out pretty soon. Thanks again, you are all such a blessing to us. In Christ's Love, Mark, Gina and John who even during all the struggles with stuff in the PICU still made the nurses smile and oh and ah.

The Good and the Not So Good

The good news, make that great news is that John is still on the floor and not in the PICU. Also that the yeast has not taken up residence in his eyes.

The not so good news is that last night while giving him blood products to get him ready to have his central line removed this morning he developed a pleural effusion - fluid in his lungs. A little oxygen and lasix and by afternoon he was fine but it delayed having his line removed until tomorrow.

Also on the not so good news part is that an ultrasound of his kidneys showed that has a kidney infection, but the good part is that it is bacterial and they were already treating him with antibiotics appropriate for the infection. Unfortunately his kidney function has dropped some and the kidneys themselves are worse off than the last time they were seen via ultrasound.

Also on the not so good news part is that during the echocardiogram they found a spot in his left ventricle that could be a clot or could be a yeast ball. They won't know for sure for a little bit and some more consulting with cardiology and the infectious disease doctors. This is not compromising his heart function at the moment but if it is yeast it will mean that they will have to treat longer with the antifungal drugs that are so damaging to his already fragile kidneys.

On a good note however his fever is not nearly so high as the last time we went through this. His GI docs are ready to start really pushing feeds as soon as his line is out and expecting that if he can't tolerate them at the rate they hope will work a 5ml per hour increase per day, that they will be able to back down to something a little less aggressive and keep increasing them. John is currently at 55% of his caloric needs being met through g-tube feeds and he needs to be at 80-90% for them to not place another broviac or remove a temporaryily placed one.

Today has been exhausting and although we are holding up okay we are looking forward to a little sleep and a quiet night where they aren't trying to fill him with blood and taking his vitals every 15 or 30 minutes throughout the night. The nursing staff is of course great and has taken great care of John and of us - they make things much easier than they would otherwise be.

Thanks so much for the encouraging notes and prayers. We continue to pray and rely on God's good and gracious will to carry us through this current struggle. In Christ's Love, Mark, Gina and John - who even though so tired he could barely hold his eyes opened managed one small smile before he fell asleep this evening

John's Progress

John was admitted to University in Columbia for a fever on Saturday afternoon. Sunday afternoon we transferred to St. Louis Children's after learning that he has another yeast infection in his blood and will most likely have to have his central line pulled again.

This is the exact same type infection that made him so sick back in November and December with a few exceptions. Dr. Cooperstock, the infectious disease doctor at University in Columbia cultured the yeast out much, much faster than last time. The accompanying urinary tract infection is very minor, not even bad enough to be treatable in a normal kid - but then John is unique, so they are treating. There doesn't seem to be a bacterial infection in his blood also. His fever hasn't gotten as high as last time and keeps coming way down. He is staying hydrated because of very aggressive therapy with IV fluids and with enteral feeds. They did have to start treatment with amphoteracin today. That is an antifungal drug that is very toxic to the kidneys, but at this point there is little choice but to use it and hope for the best. So far that is going well. He is still on the floor, instead of being in the PICU and is still breathing easily, and even having a good many times during the day when his fever is down and he is smiling and carrying-on with the nurses, PCA's and everyone that walks past the window. He is holding up well, and it is our prayer that he continues to do so, of course.

The gastroenterologist that is a liver specialist came by to see him today and to tell us that the situation with his liver enzymes is getting dangerous, but it looks like the g-tube feedings are going well and so he will be pushing them to push him to 80 or 90 % of what he needs calorically through the tube feeds during this hospitalization. Hoping that he can have them remove the broviac central line this time. Once that line is gone these dangerous infections should no longer occur and the damage to his liver should start to reverse itself some. So that means that we could be here for quite some time.

Once again God has already provided the right people to take care of John and people aside from John for us to care for too. One of the PCA's (patient care assistant - nurses' aid type position) came by to talk to Mark today because her mom recently died and she knew that he would take the time to help her understand some of the things that she's been reading in her Bible and to give her some comfort. It is again our prayer that God's will be done for John, that He would strengthen him and us to go through these things and that He would provide opportunity for us to help those here who are hurting - and there are many.

We should be able to send email every day or so and will let you know how things are going here. Thanks so much for keeping John and us in your prayers. In Christ's Love, Mark, Gina and John - who even though he is sick still thinks the med students are his personal fan club and smiles and sticks his tongue out at them when ever he gets a chance