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!