New Year's Eve Party

Well we are not at a masquerade but we are wearing mask at this party.  There really has not been much change.  We feel like we are making slow hard progress.  However, the doctors say the little man is ahead of schedule.  Carver did not get the drug that helps his white blood cell count so the number went down a little but that was to be expected.  It is 1980 as of last count. The order on the blood cells goes like this: white blood cells, which he is already making, first, then come the platelets, and the red blood cells are last.  He is not making platelets yet and that is why he has to keep getting them.  Red blood cells live longer than platelets so he doesn't get them as often but we don't think he is making them right now.  Of course we are praying for Carver to start making the other cells on his own. We are also praying about a few other things.  First, Carver's back side is a mess.  His little bottom has sores that haven't gone away.  He has some pretty nasty poop due to all the drugs that need to be pushed through his body.  This make his sores worse.  Jenni and the wound care team are doing all they can but every time he is changed there is poop and blood mixed together and it really hurts the little guy.  He is also puking a lot.  The puking does not seem to bother him at all or slow his eating much, but it would make us feel better if it went away.  Those are the main things we are looking for in the new year.  I hope this post did not come off negatively.  We are very happy and encouraged on Carver's progress.  We are still looking up for comfort and we are still being blessed from above.  It has been a great year and we are looking forward to the next.  Thank you for your prayers and God bless you. 
Happy new year.

New Year for Baby Carver

Carver's bottom got better overnight with the new cream and his own cell counts rising to 2160! In fact, today they talked for the first time about discharging Carver from the hospital. We think he still has 7-10 days here before then, but he gave me a big smile today when we talked about leaving. Also, we are done with the medicine that boosts his cells or helps him to engraft. Yesterday was Carver's last dose, so hopefully he will be less sore and achy now. Overall, I feel like we are on the mend and able to relax more and console Carver less. His pain level seems to be better, too. If you get a chance check out his article at http://www.kansascitystar.com/. Happy New Year!

Jenni

Engrafting

Carver's cells are coming in rapidly and starting to do their job! His counts are at 1400 and they have to be consistently above 500 before he's considered engrafted. So far they have doubled in number each day since Christmas. Roughly, those numbers were 0, 130, 420, 720, 1400. Above 1000 is where they like to see them. We see signs that they're working because his bottom showed an inflammatory response. In other words, it looks terribly sore with open skin areas and a little bleeding. But, he's followed by wound care and they let us know what to do every time he gets a flare up. Changing his diaper is more of a treatment process...you have to be prepared and take your time. Also, his skin got splotchy red and puffy again so the doctors are holding his tacro for the time being. His tacro level was 26 and supposed to be between 7 and 10. Those are the only two concerns so far. We scheduled his pain med again until his bottom clears up. But, praise the Lord for White Blood Cells that know what they're doing!

Jenni

Merry Christmas!

I know a lot of you check this blog all the time and I will just have to thank you for your patience.  We have been busy chasing Carver's crazy brother and sister around.  We have been enjoying our time with them.  They have enjoyed our company and we are overflowing with things to do.  We may be spending lots of time with them but Carver is getting attention also.  If you know my sister, Denise, you know she is about as loyal, hard working and diligent as they come.  She is takes care of Carver when Jenni is busy with the other two.  Carver seemed to get better just about the same time Granton and Kaylynn got here.  He pulled out his NG tube a couple of times and since he was eating on his own the doctors and nurses just decided to give him his way and left it out.  He has kept up his end of the deal by eating on his own.  He still has some mucus but not near what it was.  He is doing very well.  We hope he starts showing engraftment pretty soon.  What a great Christmas present that would be.  We hope everyone is enjoying our savior's birthday as much as we are.  Thanks for the continued prayers and Merry Christmas

Up swing?

We have not posted in a while because there has not been much to post, which is a good thing.  The doctors made rounds today and the hope he is starting the up swing.  We think he might be.  Carver slept most of the day yesterday but he did eat much.  However, he had a good meal last night and has picked up his eating since.  He does not seem to be in as much pain and we have even cut back his pain meds.  Hid did puke a couple of times yesterday but this is not really alarming because it was just a bunch of mucus.  We hope he is starting to get that stuff out of his system.  His bottom is not so great but Jenni and the Doctors think it is improving.  His tac. level is still proving but I think the doctors are starting to get it under control.  By just looking at the guy, I think he is a little more alert and in a little less pain.  We hope this keeps up and now we are praying for growing bone marrow.  On a different note, Jenni and I are excited because Granton and Kaylynn are on the the way up right now.  Can't wait to see them and we are happy that Carver is getting good enough that Jenni should be able to spend a little more time with the other kids.  She has not seen them in close to three weeks.  I hear they are pumped too.  Thanks for continually praying. 

TLC

Carver is holding his own. He has required extra mommy time, TLC, and rest. We are doing our best to keep him as comfortable as possible. Last night he showed some true signs of pain. Typically, nursing has served as his comfort from feeling icky. Now he is struggling with it. He wants to eat, but his mucuscitis from mouth to bottom and all the way through has hindered his eating. Basically, he gags and chokes easily and shows discomfort with swallowing. Also, his bones are weak and hurting. All of this is due to the chemotherapy necessary to fix him. We are staying strong though and have even seen a smile squeak out of Carver today. The pain meds are working in his favor. He can at least be awake without crying as much. The good news is that his internal organs, kidneys and liver are all fine. The culture did not grow anything and he does not have a virus. His hgb is 9.1 after the blood transfusion. And, we will still be able to give him my milk as needed through a nose tube to keep his tummy satisfied. So far, he looks like a three month old as opposed to a 7 week old and his weight is steady...we have a little window of wiggle room. I can nurse him at anytime and hope to keep his interest as much as possible, especially with the pain and nausea medicine right before hand. Our plan is to use his tube before bed and first thing in the morning. We'll see how this works and always one day at a time.

I have found encouragement in the the fact that God will give me the wisdom to make the right decisions if I stay focused on him. I have to remember his help and presence whenever frustration, anger, or a stream of profanity fires through my head. He has given me peace despite the mental battle, and I have the future to fix my eyes on. An inspiring mom gave me these words of wisdom last night..."You can't fight darkness with darkness only with light." And, singing hymns to my baby has been an inspiration, as well. The verses bring lots of comfort. Some of my favorite encouraging lines include: 1.Marvelous, infinite, matchless grace, Freely bestowed on all who believe! You that are longing to see His face, Will you this moment his grace receive..Grace, grace, God's grace. 2. For Jesus shed his precious blood, Rich blessings to bestow; Plunge now into the crimson flood That washes white as snow...Only Trust Him. 3. O holy Child of Bethlehem! Descend to us, we pray; Cast out our sin, and enter in; Be born in us today. We hear the Christmas angels The great glad tidings tell; O come to us, abide with us, Our Lord Emmanuel. Love every word in that line!

I could go on and on so I'll wrap it up! I have been a little obsessed with hymns for a while and am now starting to memorize more of them. Thanks to a member of our care team I have a song book in my room. Occasionally, I hear a hymn in my head in the moments I might consider the hardest. I think to myself I should really be mad right now and instead a tune is playing in the back of my mind. Its exciting to realize that something I might not have handled so well in the past has suddenly become easier to deal with. I can only hope that I grow up even more whether I hear a hymn or not and with lots and lots of God's good grace.

Jenni

Hard Day

I don't have much time so this will be quick.  The doctors originally thought the 19 would be his worst day.  So far it is today.  Carver is in pain.  He wants to eat but it hurts and he has a lot of mucus in his mouth.  His nurse wants to put a tube down his nose but we want to talk to the doctors first.  His weight is good and holding steady.  He and Jenni are both very tired and not getting any good sleep.  Please pray.

WANTED: Eating and Sleeping

I have some good things to report and also some things to pray about.  First of all, Carver's white blood cell count has dropped and nothing has grown in the cultures they took yesterday which is good.  On top of that his temperature is normal again so also a big praise.  I do have some specific prayer request.  Carver ate well at 10:30 but ever since then he starts and gets a few swallows but then cryes and quits.  Jenni thinks he is having trouble swallowing and that is why he is not eating like he should.  As most of you know, we are really praying that he keeps eating so please pray that he gets over this quickly and starts eating again.  Also,  Jenni and Carver need some good sleep.  Everyone is watching Carver so closely that he is not getting much sleep and in turn Jenni is not getting much sleep eather.  It seems like everytime Jenni gets him to sleep and lays down for her own rest some reading or blood sample or something is needed and this wakes the little man up.  This does not make him happy and of corse if baby is awake, Mama is right there too.  They need a good nap and a good night's sleep.  Please pray for these things.  Carver needs lots of energy and so does his mom.  Food and rest are very important.  Jenni and I were talking about this and I told her I would put it on the blog.  I said, "As soon as I post this, people will pray." 
So there you go, I posted it.  Now, get to it. :-)

Sticking to the Game Plan

Today ended up being pretty calm. Carver did get 50mls of new blood and we did not seem to have any trouble with it. His temp. has been a little warm but not like the reading we got this morning. So now we are getting ready for "day 3" which is the day a doctor said wold be the hardest on him with the kemo from last week. By now I am sure everyone knows our game plan for this - PRAY PRAY PRAY!

Good Morning Smile

First of all, Carver just smiled at Jenni so he gave him about a dozen back.  This morning his temp. his 101.5 but he was bundled up quite a bit.  We unwrapped him and it came back down but he is still pretty warm and his white blood cell count went up a bunch so they went ahead and drew blood for cultures to see if anything grows.  He is still eating pretty good, actually he is eating right now, so they are going to turn of his fluids.  They don't think he really needs them and his heart rate has been a little on the high side.  Carver's hemoglobin level is at 7.1 and he automatically would get a transfusion if it dropped below 7.  They are going to draw a lot more blood so they decided to go ahead with a transfusion which should help his heart rate to come down as well. The doctor said they would probably have to give him more blood later anyway with all that they need to draw.  We are waiting to see what his tacrolimis level is.  If it is under 10 they will restart a bunch of drugs to protect him from graft vs. host disease.  On another note, Granton and Kaylynn are playing the part of Mary and Joseph at Lone Cherry Church Christmas Service.  Hopefully the don't get any stage fright.  I will give another report on how they did and how their little brother is doing later.  Thank you, Thank you, Thank you for all the prayers.  

"Day 1" in one day at a time

Today the plan has been to take it easy.  The doctors decided to give Carver a rest after his blood pressure and heart rate got so high yesterday.  His tacrolimis level is on it's way down.  Its highest reading was 51 and it was last checked at 18.  They want it to between 5 and 10.  It will probably be low enough tomorrow that they will start everything back up.  But today they gave his liver a rest and he did not hardly give him any drugs.  So we just have taken it easy.  Carver's great grandma and great aunt came to visit and it was good to see them.  Carver is still eating and we are praying he keeps this up.  Day one is wrapping up and we are gearing up for day two.  Knowing that people are lifting us up in prayer makes every day easier. Thank you!

Well I just left Carver, his mom, and his Grammy all sleeping in his room for the night. They are resting up for a new day tomorrow, which will be "DAY 1." "DAY 0" went pretty well. Carver did let his blood pressure get too high. In fact we almost moved to the PICU, but it went down just in time. A drug that fights graft vs. host disease called tacrolimes or FK506 (can't rember if that is the correct spelling, or number for that matter) gave him the high blood pressure but they gave him other drugs to bring it back down. He won't get as much FK506 tomorrow but it is hard to get the right amount with little kids. His heat rate went up after his blood pressure went down, but it was trending back down when I left. Anyway, he is doing very well. We are still praying that he will keep eating and all his numbers do what they need to do. Thank you for praying and I will try to give an update tomorrow. As for now I plan on a good nights rest.

POWER IN THE BLOOD!

I am sitting here in Carver's room and he is getting his new blood right now!  It is very exciting!  I keep hearing my dad, the church song leader, saying "There's power in the Blood!"  Everything is going well so far.  He does have a rash but it is nothing that is causing much alarm.  Carver has been very peaceful today.  He is still eating and it is our prayer that he keeps this up and won't have to get a tube to his stomach where he could forget how to eat.  Anyway, keep sending those prayers!  We are so thankful for them.  I am sure Carver's Grandpa will sing it out loud, very loud and I am praying that song holds true and there is "POWER! POWER! WONDER WORKING POWER" in this precious blood for our little man.

Hgb

So, his hemoglobin went up a little from 7.2 to 7.5. Still no transfusion yet.

Last Day for Chemo

O happy day, Carver is doing well with his chemo so far! Today is our last day, tomorrow is a rest day, and the transplant is on Friday! He has been playful and happy during the day and sometimes fussy at night with tummy aches. But, last night our time passed by quickly thanks to texting. Carver's hemoglobin level was at 7 last night so if it goes below that he needs a transfusion. This morning it was 13 which is unusual. So, they are checking again for accuracy. Since he's getting chemo it shouldn't have gone up that much so quickly. Oh, and baby Carver is starting to look like Mama now! At least my baby pictures anyway. Just cool.

Jenni

My Babies

Hello to Granton Lee and Kaylynn Sue today! We miss you very much and can't wait for you to see us and your baby brother again. We Love You.

Granton, who came to visit Mary to tell her she was going to have baby Jesus? Did Mary go to Bethlehem in a car and have her baby in a hospital? Kaylynn, Did Jesus have a crib like baby Carver? Where did Mary put baby Jesus when he was born?

Love,
Mom

Baby Talk

Today Carver and I have been interacting more. He gave me his first real grins and some sort of gasping noises. I wouldn't call it a coo but he was definitely trying to say something. He is now grinning at his toys under the jungle gym or play yard...whatever you want to call it. He's quite the mover. Oh, he just made a shrill noise. Most of the time he snorts, breathes fast or grunts like a pig. I mean when he's happy. :0)

Chemo

Carver and I need some sleep. Pray that I can think clearly. We are having trouble adjusting to the chemo schedule. The next three days should have the most interruptions at night. Thank you.

Jenni

Hickman Line In

So Daniel is right. Carver's little leak is not as bad as it sounds. The bleeding is at the site where the Hickman line enters the skin. The surgeon told me he added some powder to help the blood clot and stop the bleeding. That is why the procedure took longer than expected. So, my mind thought the problem was solved and the bleeding had stopped when they were done with him. But, when we arrived at our room I noticed the gauze around the site absorbing very quickly and I immediately called for the nurse to check it. They put pressure on the site and redressed it with some pressure gauze all while reassuring me that this can be taken care of. The doctor later told me that sometimes the fresh stitches can irritate the skin around site causing more bleeding. Also, that the heparin used during surgery helps to open the vein and thins out the blood. This made sense to me as I recalled the heparin filled tubes that lab uses to keep blood draws from clotting. Anyway, all that to say Carver is resting easy with his Giraffe friend and a nice dose of pain medication. If he lays still without crying the site should stop bleeding soon. We are continuing to watch it. The Hickman line itself is usable and draws fine.

Granton was real sweet today. He has been praying for his little brother every morning with the family. His Meme told me that he asked about Carver at lunch. He wanted to know the plan for the Hickman line. She said she would have to call and ask me. He told her to go get her phone. When she called I told her the surgery was scheduled at 4 and to pray that Carver would nap until then. She relayed the message to Granton and he told her he would just stay and watch the clock until 4 then! (He's starting to sound real familiar.) His Daddy said, "He's growing up!"  By the way, Carver did nap well today and has eaten since surgery.

Jenni

Post Hickman Surgery

I just spoke with Jenni and she was calm.  She told me Carver has nursed some after the surgery.  He is bleeding a little more than they anticipated.  It seems like everything is under control and and they have special prepared blood ready should Carver need it.  She did say that they have put a powder on him to help the blood clot and his bleeding seem to be slowing.  His nurse told Jenni that it looks worse than it is.  Anyway, I just wanted to keep everyone in the loop as to how they can pray.  Please pray for him to stop bleeding out of his opening for the Hickman line.  I plan on posting again in the morning with a new report.  We are trusting in the Lord with this and everything else.

Almost Go Time

Carver gets a Hickman line placed at 4 tomorrow. He will stop eating at 11 and only clear liquids until 1.

Transplant Plan

Carver's kidneys and heart look normal. He will receive surgery on Tuesday for the placement of a Hickman line. We pray that the timing will work out so that he is not waiting too long on an empty tummy. Also, that the operation runs smooth. Then, on Thursday he starts his chemotherapy and Friday, Dec.16th is transplant day! We are praying that Carver can remain comfortable through December even after the transplant. Some of the chemotherapy drugs might show side effects like nausea, mouth sores, and rash. The Hickman line should eliminate all the pokes he has endured up to now. Hopefully, this central line will remain infection free. That's all for now. Carver is still showing great weight gain. He's over 11 lbs!

Jenni