Cowboy Boots

I have been thinking about writing this post for a long time. Originally, I was going to write it on the day Granton leaves the hospital, but it looks like I will be teaching on that day. So when we post the pictures of him leaving the hospital with these cowboy boots on you will understand why he is wearing them. About ten or fifteen years ago I watched a movie called “Alive.” It was about a Uruguayan Rugby team that survived a plain crash only to be stranded in the snow covered Andes Mountains. Their chances of survival were very slim and after many terrible things happened the leader of the group had to go look for help. He assured his teammate, who was loosing his will to live, they would make it. He gave him one little red baby shoe and kept the match. He assured his teammate the shoes would be reunited. When the leader finally came back, he was in a helicopter. As it was circling the plan crash, he leaned out and held up his little red shoe. His teammate smiled and pulled his out of his pocket and held it up as well. I don’t know why, but that has always stuck in my head. Who knows, it could be for what we have experienced in the last five and a half months. I don’t remember how much we shared on the blog when Granton was so bad, and I don’t know how many of you did not know about Granton then. Let me just say it was very hard. We were constantly reminded of the odds. The doctors wanted to be sure that we understood the likelihood of Granton’s death. I think they were trying to prepare us. We had so many different doctors giving us these talks; it was exausting. It was during one of these days that I saw Jenni trying to write a blog. Tears were dripping off her cheek because she was at a loss for something good to write. I was crying too. I walked up behind her and gave her a hug. I said, “He is going to be okay. He is going to leave his hospital in cowboy boots.” I don’t know why I picked cowboy boots. It could be because I was reading a lot of Louis L’amour westerns where the good cowboy always lives to ride off into the sunset. It could because I am a big OSU cowboys fan. Or it could be because I thought it made Granton sound tough. Don’t get me wrong, I don’t think Granton’s toughness had anything to do with his survival. We credit all that to God. I just knew we needed something to look forward to, like rematching the little red baby shoes. I thought the cowboy boots would be good for us to have something to focus on. It was kind of our light at the end of the tunnel. We talked about what the boots would look like. It was a lot of fun looking at different boots on line and picking these out. These boots not only represent the excitement we feel about Granton leaving the hospital. They also are a symbol of what we have gone through and what God has taught us through this journey. It will be wonderful when he puts them on!

Let everything that has breath...

Well wouldn’t you know it, as soon as I post the blog in come rounds. To get the rest of the update, read the blog posted below. So this is the latest. The cat scan did not show an ulcer or abscess. Praise the Lord. No culters have grown bacteria since the 22nd. Praise the Lord. The Doctor increased Granton’s feeds and lowered his IV fluids. Praise the Lord. The Doctor also said we can feed Granton by mouth a little. Praise the Lord. She had not seen him in a week and commented on how much older he looks. Praise the Lord.

We have been waiting for rounds and they haven’t come yet so we will just tell you what we know. Granton had a cat scan about 7:00 last night to see if he has an abscess. We still don’t know the results but the anesthesiologist said he went through it great. He wasn’t allowed any feeds most of the day yesterday because of the cat scan. He is getting feeds now in addition to IV fluids. He has not thrown anything up but his feeds are set real low right now. He actually did gain a little weight this morning from the last weighing which is a positive change from how things have been this week. I took this picture about five minutes ago when he woke up from a two hour nap. Jenni is working with him right now on his crawling. He gets started from the sitting position but all his wires and cords seem to trip him up. He is trying to figure out what to do about this. He just now got up off his knees like he was bear crawling. However, he still does not go anywhere. We are all having fun watching him try. I know he will start moving sooner or later and we will also be moving out sooner or later. When we find out if it is sooner or later we will let you know. I feel good about it. My prayer is that we move out at the right time when the little guy is ready. The Lord has blessed us so much and answered so many prayers. We are looking forward on reporting when this one is answered also. Thank you all for joining us in praying for the little guy. Today has been a good day and we should stop and thank God for all he has given us. We are already so much better off than we were just a month ago.

Update

This morning Granton acts like he feels better. His weight came up to 7.805 or 17 lbs 2 oz. He is still losing some fluids through his stools, but he has stopped vommiting. The X-ray he had yesterday looked better than the previous one which is a plus! So far, the cultures from Wednesday are all negative, as well as, the RSV test. Granton will have a catscan done today on his stomach. The transplant team and infectious disease team have ordered this to try and rule out any possibilities such as an abcess or an ulcer. What we're hoping is that his stomach does not have either of these, but that the new immune system cells are still immature and will eventually prevent the bacteria infections in the blood stream. He will have to do without feeds until he goes to anethesia. So, we will have to be patient until he can at least be put back on continuous feeds. As of last night and this morning he had been getting milk through a suringe pump which is not enough to send him home on. I know that the ng feeds are the best way for him to gain weight and get his nutrition to the desired level. We pray that he will leave the ng tube in for more than a day, that his veins don't get worn out from the sticks, that lab will not run out of places to draw blood, and overall that Granton will handle it all. He is such a trooper. I know his nose has to be getting sore, too. We just pray that he can endure this time since plastic is so risky for him meaning the g-tube (for feeds) and port (for drawing blood) are not smart options. We've always managed to do things the complicated way, but I know that God knows best. We are hanging in there and happy for the positives.

Jenni

Granton hasn't kept much down today, even by mouth. Since we pulled the iv yesterday, the doctors think he has another bacteria infection and they say he sounds crackly. He will get more antibiotics and have cultures done in the morning. Currently, another iv is being put in for hydration. I am also giving him pedialyte one ounce at a time. So, I guess you know what that means. I think I'll just stop jinxing us everytime. ; )

Jenni

Thursday, August 28

Granton is playing catch up from his stomach flu. His blood tests this morning showed he is dehydrated so he is receiving extra fluids in his milk today. We are hoping he can tolerate his continuous feeds so that we can go home tomorrow or Saturday. He will have to be reintroduced to the bolus feeds again next week since he threw up this morning. I'm praying this is the last time. He has had a really loose stool as well and acts kind of puny so we are praying against any more viruses or bacteria infections, but right now we think it's just feeds. On a happy note, he drank two ounces of milk this morning with a nuby. But, I want him to start gaining weight and staying hydrated and oral feeds are not cutting it right now. Once we catch back up, Granton should be able to start practicing more again. I know the hospital is not an ideal place to keep from getting sick and we are hoping to avoid sickness by going to the Ronnie Mac this weekend. Thank you for your prayer and concern. We hope you have a blessed day.

Jenni

Granton and the Big Exit

Granton has been enjoying his visitors lately, especially, the kiddos. Tyler Olson, who had been in the PICU with us, came by and played and cousin Jessie was here today along with Mr. Stapleton. So, he's had two entertaining days and given away lots of smiles. Along with that, he took a step toward me having to turn his body at the same time when I was holding him up just now. We have been basking in the sunlight while we can without any lines attached. He threw up his ng tube so were waiting to put a new one in, and the iv in his foot is now gone. He threw up because his stomach wasn't able to hold all the volume this time and not because he was sick. Granton got over his virrus thanks to his new immune system (somewhat faster than mom it seems)! Once again, we've planned to go to Ronnie Mac by Friday. Daniel will be here Saturday morning for sure so one of those days could be our big exit. I am so happy and know Granton will be, too. One more thing, I saw and heard him say Mama officially! He has been such a sweetheart the past few days. He has been playing on the floor mat with his new Little People dump truck--big boy toy--from Aunt Rena and laughing about it. I guess he needed a break from his smaller, chewable toys.

Jenni

We Love You and Miss You Dad!

Tuesday, August 26

Good afternoon. Granton has been working extra hard on his drinking skills lately. So far, we have managed to get him to drink all of his oz. by mouth to avoid the ng tube put down his nose. He needs 6 oz. per bolus feed 6 times a day. We've successfully completed two bolus feeds without the ng and are still cheering him on. If the ng tube is replaced, we will continue to give his fluid oz. by mouth and make up the difference through the ng tube. Right now all his meds are by mouth which can get a little tricky at times. But, we've dealt with oral meds before having been hospitilized and he doesn't put up too much of a fight.

The doctor is not concerned about the bacteria infection so long as he is looking so good. The culture that grew on the 22nd was probably the result of plastic again--when Granton got the periferal iv. He still has the iv in his foot that will come out tomorrow. If he grows another infection after they take out the current iv then they might consider the cat scan they mentioned to Daniel that can tell if Granton has an abcess. Right now, they don't think he has an abcess and compared to the lungs, the gut can heal more quickly. I'm just glad it sounds as if he doesn't have any chronic stomach problems and this should resolve with time. This is the best I could understand the information I was given.

We don't have too much time left in the hospital. We are very hopeful to be wheeling Granton out of here soon, but we won't be posting any official dates.

Jenni

Todays prayer request

Granton had a good nights sleep, and woke up feeling good and happy. He lost his NG tube when he was throwing up the day before yesterday. The plan is to put another one in today. He is eating and drinking some. Pray that he can take in enough nutrition that he won't need the tube. Five months is long enough to have a tube down his nose. The Dr.s and nutritionists don't think he can do it,but God shows his strength best in those who are weak.
We thank God for all the prayer warriors who intercede on Granton's behalf.
Love and Prayers,
Mimi

Male Bonding

Granton and I have had a lot of fun today. He is sitting with me in the recliner right now. We are watching the Baby Einstein farm video. He is also trying to help me type so don’t be surprised if you see a few typos in this blog. I am happy to report he has been feeling great today. He hasn’t cried a bit and has been very friendly with the nurses even when they try to check his blood pressure. It is pretty obvious he is much cleaner when mom is around, but today he is gets to be all boy. When they have come in to check his oxygen saturation it has been 99 both times. This is even better than Dad’s. I haven’t ever been on a ventilator and thought I was in pretty good shape. The doctor thinks the gram negatives rods may be coming from an abscess. After they look at the cultures he may get another cat scan. The good news is he feels great. However, mom is SICK! Hopefully, she, and Grandma Sandy, will get over this thing as quick as Granton did. Jenni is not allowed back on the floor until at least 24 hours after she gets better so Me-Me will have to fly solo. I am sure she will be up to the task. Raising seven kids, and their friends half the time, is pretty good training for this kind of thing. Pray for Jenni this is her first day since Graton was born she had to spend away from him. That would be hard enough but being alone in the Ronny Mac room sick as a dog has to make it worse. She has called to talk to Granton a few times and his eyes get real big when I put the phone to his ear. He looks around the room to see where she is. I think he knows he would get a bath in a heartbeat if she were here. The video just ended and the little man is going to want to play so I will wrap this up; I have better things to take care of. Keep praying.

Good news and bad news

The good news is Granton slept through the night and seems to be feeling much better today as he has not thrown up for quite awhile. The bad news is we will not be able to start his feeds back today. Also, Jenni is now sick. She has diarrhea and has been puking her guts out. It sounds vicious when she throws up because she doesn’t have anything left in her stomach. The doctors don’t want Jenni on the floor for 48 hours because she is sick. On top of that, Grandma Sandy had to leave this morning because she is getting sick too. Please pray they get better and that I don’t get this thing. I am the only one left to watch the little guy. We called in reinforcements with Me-Me who will be here tonight. I don’t think this is related, but Granton did get a positive test result on gram negative rods from the 22nd. I don’t know what the plan is about that yet. Anyway, that is the latest. I better get back to the little man. We are happy that he is feeling better and this is the first time he got sick and did not need oxygen which is uplifting. Keep praying for the little guy and everyone involved with watching him. Thank you so much.

Long day

Well it has kind of been a long day. Granton has been throwing up a lot. He puked his NG tube out a few times. We have stopped his feeds until his stomach gets better. He has an IV in his foot giving him fluids. This means we will have to give him his meds by mouth. This may be a challenge. He also had a temp today but that could have been because the air conditioner was not working at the time and it was pretty hot in his room. He looks better tonight but he does not look like himself. We know his stomach is shrinking since it is empty. This means we will have to start over with his nutrition when he gets better. Of course we are thankful for all your prayers. Please pray he bounces back quickly and keeps improving. Thank you so much.

Saturday, August 23

We haven't gone through rounds yet, but we have some news from yesterday afternoon to share. The infectious disease department approved an antibiotic for Granton to finish the next five days that will not have to be injected through his leg muscle. We will give it orally or through the ng tube. Also, Granton got sick several times last night and we think it has to do with the formula change from progestamil to enfamil. He has not been interested in eating this morning, needless to say. We are, however, happy he has shown some interest and improvement eating when he isn't throwing up. We think he will have to go to Ronnie Mac with an ng tube to stay hydrated. We pray we will make the best decisions concerning his nutrition.

Jenni

Well, I guess my video is too long or something because the computer shut down 3 times while it was trying to download. Granton acheived our goal and ate 180 calories this morning to substitute his morning bolus feed. The dietition has now allowed him to receive only 5 bolus feeds during the day instead of 6. Also, his periferal iv went bad so two friends from the PICU tried twice to get another one running. The lab ended up drawing his blood and so we are left with no iv, probably indefinitely. Fortunately, this was the last culture ordered. I pray that the cultures continue to stay negative. As for his antibiotic, he only needs 5 more doses--another five days worth. We decided to give these doses as a shot in his leg muscle once each day. And, Granton will need his blood drawn on Monday and Thursday each week. The doctors are not planning surgery for a port since the plastic has been such a major risk. And, they are not planning surgery for a g-tube either at this point. Granton will be able to try enfamil by mouth because it tastes better than progestamil and OT would like to try some table foods like mashed potatoes or green beans. I am starting to wonder if he's still a baby. His cute little arms and legs, and his loud cry are still pretty big indicators of baby, though!

Happy Blog

Our blog today brings good news. Granton has 96% donor cells working for him! Also, his RSV test from Monday is reading negative so far! Never thought we'd see the day when the words RSV and negative were said in the same sentence together. If the test remains negative for 8-10 days, by the middle of next week we could be totally done with the isolation restrictions. Granton can go outside his room and he can see the full face and costume of his doctors and nurses. Good for them, too.

Another thing to mention is his surgeries. We are happy to delay them and possibly avoid them altogether. Granton has been eating so well that we will start feeding him by mouth the same amount of calories he would receive in one morning bolus feed. The bolus feed will be skipped as long as we get the correct amount of calories in him. So, the weaning process has begun even though we were just put on daytime bolus feeds less than two days ago. We are searching for baby food with the most calories and have already started looking at labels, so let us know what you find. Also, he drank some thickened juice about the consistancy of syrup today and was quite interested. Anyway, the doctor did say the team will not rush into surgery now with either the g-tube for feeding or the port which could be another infection risk. They will discuss both procedures as they observe Granton over the next few days and while he is still getting the antibiotic anyway ( they wouldn't do surgery until that's complete). As a side note the most recent culture drawn last night for the bacteria infection is negative right now and the doctors believe the infections have occured each time because of the central lines.

I hope all the teachers and students have a fun day back at school without too many alterations or schedule conflicts. That your day will be as routine as possible for the first day.

Jenni

Two Praises and a Prayer Request

Granton has shown great progress in eating since we've stopped his feeds at night. He ate 1/2 jar of baby cereal with apricots and milk this morning and nearly a whole jar at lunch. He ate so much we gave him a small break from the Bollus feeds when we thought he looked a little uncomfortable. I am so happy to see his interest in eating and so are the doctors. They say that children who go through all that Granton has gone through typically don't show as much skill or coordination with their mouths this early. I think his eating is somewhat instinct as more of those teeth cut through and he tries to bite everything. His tongue still looks peculiar when he eats, probably because he won't suck anymore. We definitely saw success today when we fed him--more than I've seen him eat so far. Great News!

We are praying more than ever about his bacteria infections. It seems the doctors cannot locate the exact cause or why they keep persistantly coming back. We know they are from the gut, so Granton had an ultrasound done on his abdomen just now to gather any clues. The cultures grew a bacteria again today. We thought he had it licked, but they're back. We are praying to find the right kind of antibiotic to kill the infection off. Plus, all of the cultures have shown gram negative rods which are the worst kind. We are safe to stay in the hospital, but not anywhere else until they're gone. Also, his midline was removed an hour ago and he has a periferal iv in now. We have stacked two lumins together as an extra precaution in case we contaminate one we have a backup. We're just trying to think of everything we can to rule out possibilities.

Another positive note is that the doctor wrote up an order for us to keep his stat probe on onluy at night. So, we have one less cord attached to Granton during the day. This is because he has handled his oxygen level so well for the last week.

We are constantly making decisions about what's best for Granton even though we have disappointments or setbacks. I will be happy for him when he isn't in the hospital anymore, but I pray that God will take care of all the details that we don't often see. I am thankful for two praises that offer encouragement at this time.

Jenni

Blowing Kisses and Mom's Little Angel

Granton's cousin Addison greeted him with kisses when she arrived this afternoon. They have had fun playing together. We will have more of the good stuff for you tomorrow when they're at their best!

Jenni

Tuesday, August 19

We are about to make another big step in Granton's feeds which took less time than I thought. Last night, the nurses bumped up the volume to 160ml to see how well Granton handled the change. His stomach has been able to hold the extra milk, so mom is taking a risk and allowing Granton to receive 180 ml today. That means tonight he will not have to have any milk at all and will wake up to an empty tummy. He loves his rice cereal so, hopefully, he will have enough hunger to eat well in the morning. Also, anytime I have a food tray, Granton acts as though he's about to salivate. So, yesterday evening I sat him next to me while I ate dinner and gave him a rice wafer to chew on. He ate the whole thing plus another half. He seems more interested in our food rather than baby food, and especially when he gets to feed himself. The dietition was happy that he tolerated the volume of the feeds and said that this is a huge step toward eating orally or three meals a day.

The cultures haven't grown anything since Thursday so that is more good news. Granton will continue his antibiotic for this new bacteria until Sunday. This means, we will probably schedule the surgeries early next week. So far, the bacteria infections in his blood stream have all been different and seem to relate to his stools or come from the gut according to the doctors. They will be giving Granton a preventative antibiotic for these infections so we will not have to be bothered by them anymore. This last one was caught later and sent us in emergency mode. We hope to avoid this with the preventative antibiotic. He was given this same antibiotic before at the time of transplant, but hasn't received it up to now. We are determined to get a negative test result on the RSV. He had another test run yesterday. And, his donor percentage should be known in the next few days. We are waiting now for the B-cells to start producing, but that might take a few months. He had quite a bit of his own already and only the partial chemo treatment to clear them. I think it will be reassuring to discover for a second time that his T-cell engraphtment is still high like it was last time.

Granton is still the sweet happy boy he always has been and manages to play just fine in his hospital bed, exersaucer, floor mat, or pod chair. Yesterday, I was sitting beside him on the bed sewing while he was watching a movie in his pod chair. Occasionally, I'd get a little tug on my sleeve as he pulled me over to watch with him. I just snuggled over and explained what was on the screen and then he kept watching. I am proud of how well he is entertaining himself, too, just like now as I type this blog. We are so thankful for our little man and for all the people who diligently prayed for him during his down days.

Jenni

We are seeing progress in Granton's weight and development. He started to push up on all fours again and rock back and forth like he wants to crawl. He can move one knee on his own. Also, he is officially rolling from his back to tummy without assistance. He performed a little for PT just now which is nice. As for his weight, he is gaining without needing any lasics. The doctor said he sounded clear today and so they held off on giving him any. And, if he can tolerate 120ml an hour 6x a day, then he will still be getting enough calories to stop the feeds at night. Right now, he is working his way up with 105ml and hour and still getting feeds part of the night. Like I mentioned yesterday, he's on the Michael Phelps diet right now while we play catch up. The doctor says it will take months before he takes off eating by mouth again. We will see. He still seems strong for all he's been through.

His surgery is post-poned until the end of this week or beginning of next. We are still waiting to determine what type of bacteria infection he has developed through the new midline. We have to continue his current antibiotic for at least another week and possibly get a new one. We are thankful for the work-in-progress and the doctor was pleased with what he saw in Granton this morning.

Jenni

Hi From Granton...I Can Eat Graham Crackers!

I stayed with Granton last night and he did great. He acted much better than yesterday evening when he pulled his NG tube out TWICE. This is one of his latest pictures without anything on his face. He woke up about 6:20 and played until 7:00. I changed him and then he slept on my chest until around 8:00. Right now he is sitting in his Aunt Rachel’s lap watching Mickey Mouse. He is pretty happy. Alright, this is the latest on going to the Ronny Mack house. We found yesterday night that Granton’s midline tested positive for a gram negative bacteria on Thursday. Gram negative is one of the harder ones to get rid of. The doctors want to get rid of the bacteria before he gets his port and G tube and he can’t leave the hospital until then. The good is he was tested again on Friday and Saturday and nothing has grown yet. If he is rid of the bacteria, we will go on as planned and be out of the hospital by the end of the week. If he grows bacteria we are going to be here longer. I am going back to work this week so Jenni will have a full plate. We are hoping to get out of the hospital soon. It sure is nice to be concerned about going home. We used to be concerned about just making it one more day. Praise the Lord. Thanks for keeping us in your prayers; we appreciate it more than we can say.

We had a much better night compared to Monday, the last time I spent the night with Granton. He slept all night long and woke up at 6:30. I got up twice to check on him and gave him a breath of oxygen once. Now, he is watching cartoons. We usually turn the tv on to Little Einsteins, Sponge Bob or Handy Manny. We are thinking his first birthday cake might be sponge bob, since the shape of the cake will be easy for mom to make. Granton is really into dancing at 10 months old, and he is fun to watch when he hears music. Right now he is groovin in his bumbo chair (I think that's what it is?). And, he especially likes loud rattles and the drum that music therapy brings. That's all for this morning. Shaping up to be a fun weekend. We'll let you know what's going on next week as soon as we find out.

Jenni

We don't have much news. Today was a good day with Granton. A few people have asked for a family picture so here it is. God Bless, Daniel

Latest Assessment

Granton continues to get better every day. No more extra naps. He is ready to play.
The doctor came by and was very pleased with what he saw. He says he is breathing better than he was a week and a half ago. Then, even tho his oxygen levels were good his breathing pattern was abnormal. Now his breathing patterns are normal,and his oxygen levels are good.
We still don't know when his surgery will be, Monday or Tuesday if all goes well.
Mimi

Play Time

Thursday, August 14

We're starting to get our Granton back now! Daniel and I came in to see him this morning and he immediately smiled and clapped! Last night, the doctor popped in to see how he was doing and Granton was acting more alert and interested to see visitors. I tried to get him to wave bye bye and he barely moved his hand. When the doctor left the room Granton started waving vigoursly and I said Oh, he missed it. Then, Daniel looked through the door window and saw the doctor waving back! We think Granton is starting to learn what hi, bye and dada mean. He has done a lot of moving and playing today and last night Mimi didn't have to get up to give him a puff of oxygen. We are so thankful he is not having to be supported with the blow by as much if at all. He is looking bigger and bigger even with the lasics he gets. We're hoping to eliminate some of his extra tubes and wires he received after Monday's set back. Daniel and I are moved in to our new apartment and ready for Granton's arrival. The Ronnie Mac House has been incredible, especially since it was just built in '06. We have been blessed by some great meals and new facilities and the walking distance makes life easier, too. You wouldn't believe the accomadations just by donations. God has been making a way for Granton to come home soon and we look forward to that day! Once again, thank you for all the support and prayers and we will lift you up, as well.

Jenni

PS--Granton was really having fun in his exersaucer last night for the first time in a few days.

Latest News on Granton

Granton's stats have stayed improved today. He has slept a lot more than usual today, but dosen't seem to be hurting. Docs say the bacteria they cultured out of the removed hickman was a new one for Granton. Actually he has had 3 seperate infections in his hickman and all 3 were diferent. Well the hickman is gone now ,so that won't happen again. He was started on a new antibiotic today that specializes in killing this infection and his other antibiotics were stopped.
When hickman was removed he was given a temporary midline. This is sort of a more permanant type of I.V.. They couldn't put in a port or pick line till his blood infection is cleared up. It won't be too permanant tho. Monday or Tuesday a port will be installed. At the same time the Dr.'s want to put in the G tube. This will be a little more surgery than what was done Tuesday. The port is like a pick line that will be compleatly under the skin. This is to help protect it from bacteria. It will be used to draw blood or give I.V.meds when needed. It should be able to stay in place for quite a while. It will be accesed by a needle through the skin when it's needed. As you know the G tube will give direct access to feed Granton by going straight into his stomach. The Dr.s seem to feel this is necessary befor Granton can leave the hospital. His nutrition is vital and he still can't drink and hasn't been eating enough solids to fulfill his needs. This could stay in place for months or even years. We hope not years. We will try to let you know when this will be done for sure so you can be praying.
That is the plan for the early part of the week. They are hoping and planning for him to be healed up enough from this surgery to go to Ronni Mac House by the end of the week. That would be GREAT, but we have learned to be patient.
Granton is starting to stir so I'll sighn off and check on him.
Love and Prayers,
Mimi

Upbeat Note

This is just a quick note to let you all know that Granton is steadly improving. He slept soundly all night. His stats have improved and are in fact pretty good. He dosen't need to use oxygen when he is awake, aand just a puff now and then when he is deep asleep. He still isn't acting his usual energetic self, but is pretty quiet and cuddley. Right now he is taking a sound nap. I am hoping when he wakes he will feel more like his old self.
Mimi

Cranky Times

The surgery procedure went smooth and Granton looked so cute afterwards. He was all bundled up in a hospital blanket with pink lips and cheeks, much better color than yesterday. He's gone 30 minutes now without having the oxygen mask held in his face for support. We think the lasics is a good explanation for this. He hasn't felt very good this afternoon. We are trying to decide if he is tired or in discomfort. He has been given a little bit of pain meds tonight and is starting to settle down. We're hoping for a good night and less oxygen requirement in the morning. So far, he's handled his feeds just fine, but they are increasing the volume gradually each hour to be easy on him. We are doing our best to handle all his new tubes and wires again. I appreciate nurses, especially with all the beeps, dings, cries and constant ups and downs. Our nurse today might as well have set up camp in our room. She was quite a trooper and had one more patient besides Granton at that. Have a good night. We're up here watching the olympics which is a nice distraction. We are so thankful for everyone's prayers. I think he might be feeling a little better tonight. We hope to have good news tomorrow.

Tuesday, August 12

Granton had a better night. He did not wake his dad up too much, just enough to keep his oxygen mask in place. The doctors are still concerned about Granton needing more oxygen. The xrays don't give any indication that he should require more, so it's a little confusing. Right now, his weight is up and we think he is still holding fluids which could require more oxygen support. The bacteria type should be determined in the next 24-48 hours. If the infection needs an antibiotic that can go through the ng tube, we are in better shape to go to Ronnie Mac with Granton. We are anxious, but a little reserved, too. I don't want to move in and settle down just to be back in the hospital the next day. Granton's heart rate is getting much better, and I think his breath rate could be better but not as high as yesterday. We have to hold a mask to his face every minute or two to boost his oxygen stats up above 90. He is stating about 85 on his own right now. We are holding on to the Lord's love and strength right now while we are experiencing a slight set-back. Granton's color is sloooowly coming back, but he still isn't up to par just yet. He has been watching some cartoons and napping this morning and gives out half-smiles. He goes through surgery today and we think that both procedures can be done under anesthesia which is a praise. Also, he won't have to have a vent after anesthesia. We pray that the procedure goes as planned and the Hickman doesn't cause any damage on the way out. He will have a temporary PICC put in place at the same time and won't feel the procedure like we thought he was going to have to.

Follow Up

Well this is the latest. Granton’s fever went away until about 30 minutes ago when they read his temp at 101.1. However, they just took it again and he was a little warm but didn’t really have a fever. We did get some results on the bacteria. It is a gram negative that grew very fast in the culture. Gram negative is not good news but it is better than a fungus. His heart is still too fast but it is slower than before at 180. We did get to feed him and he ate really well. He still needs oxygen to keep his stats up. Right now the plan is to take the Hickman out at 1:00 tomorrow and he will get a PICC line whenever we can squeeze him in the schedule. We will post more when we know more, until then, please just keep praying for the little guy.

Alarming Morning

Last night went like this. Granton destated from about 11:00pm to 2:00am reaching 85 at the lowest. Mom doesn't have near the patience that the grandmas do, so finally around 1:00am I had the nurse turn off his monitor in the room. I'd already tried taping the oxygen tube to his face and shirt and that didn't work for our little wiggle worm. The nurse tried to prop the tube up on a toy and that didn't work, so finally, I asked her for a nasal canula just overnight. We taped the nasal canula down twice, but since the tubing hung down in front instead of back, Granton decided he wanted to play with it. Eventually, mom took the dangling canula off his face and he didn't seem to have as many problems destating. However, he did have high blood pressure all night long and kept his nurse hopping in and out. About 3:30-4:30 mom got some sleep until Granton started getting sick. He was getting 135ml more last night to compensate for a feed that was skipped during the day. Anyway, he threw up four times and gagged several times along with dirty diapers, rumbling tummy, and moaning. Then, came the emergency. About 5:00am Granton spiked a sudden fever of 104 and his heart rate climbed to 230. An immediate team of heart doctors did an EKG to figure out why his heart rate was irregular. They determined it was caused by the fever, but they gave mom a big scare. We had to flip him upside down twice, hook him up to a heart monitor and the EKG machine. He got 3 antibiotics and cultures for a bacteria infection that they suspect has to do with his Hickman line again. Which means we should take it out ASAP. We were planning to do several surgeries all at once and get them over with while Granton was under anesthesia and on a vent. As you know things rarely go as planned around here. Now, we're looking at taking out the Hickman with a temporary PiCC line until the infection clears and Granton may receive a port and g-tube. The nurse told us to wait at least 48 hours to get rid of the infection. Right now, he is on blow by with a simple mask and we are waiting to place a nasal canula on so that it's Granton-proof. Currently, his temperature is 103 and his body seems to be cooling down. His heartrate is 193 and he is very underactive. I said lathargic, but the doctor quickly corrected me. Granton is usually so active, so for him he doesn't feel well at all. We just had a chest X-ray because both a transplant nurse and a respiratory nurse said he sounded a little crackly on the left bottom side. Wow! Did I ever get broken in to staying the night with Granton! But, I must say, he sure needed his mama when he started getting real sick. He wouldn't let go of me. At this point, I don't think we will be back in the picu because his blood pressure didn't drop after the antibiotics and his heartrate is going back down. He received zofran for his stomach ache, tylenol for the fever, and he is currently off his feeds and on iv fluids. I'm sure I've missed something, but I'll cover my tracks later. Until then, just keep praying for Granton and join us as we trust in God.

If you make the Most High your dewelling- even the the Lord, who is my refuge- then no harm will befall you, no disaster will come near your tent. Psalm 91:9-10

Jenni

Pray for the Cure

Granton had a great two hour nap this morning and is playing in his crib. He seems less congested today and we're still hopeful to move him out of the hospital this week. One of our transplant doctors will be leaving for vacation and will be back in two weeks. She said she hopes to never see Granton again. He will be happy to move around more and not be so confined. His legs and feet kick out of the crib a lot.

Today was a beautiful day for August and I got an opportunity to run a 5K for the first time. I was amazed by the number of people at Union Station this morning. The website said we would be joined by 22,000 contestants ready to run or walk for the Cure. I felt very girly when I saw the huge arch of pink balloons at the starting line. But, what a pretty and welcoming display they had set up. Also, I counted at least four street bands playing for us as we ran--one in a historic jazz district--and saw lots of cheering fans throughout the course. Even before I took off running I got to meet a breast cancer survivor of 2006 who went through several reconstructive surgeries. After sharing her story, I congratulated her and then I mentioned Granton having his bone marrow transplant. I told her so many people have given to him and I felt as if this was one way I could give back. She said thank you and then off we went. During the race I thought about Granton and how thankful I am to be able to use my lungs and for the fact that he is still able to use his. I am also thankful for health and Daniel who helped me get into shape to finish the race without stopping. I did achieve that goal, but I about lost a shoe in the process. Fortunately, I still made my goal of under 30 minutes at 26:25 which put me 47th out of 188 in my age bracket. The women's winner ran it in 17:15 and the male winner ran a 15:14. The best part was seeing so many people of all ages contributing to a great cause and interested in taking care of themselves. I am happy our friend Jen encouraged me to run. It was a great experience and nice to achieve goals even though we are here in the hospital most of the time. For a first cross country race this one was a site to see!

Jenni

We don’t have any new news today. It is the weekend and there are no changes planed for Granton. He just finished eating pairs and seemed to like them quit a bit. His oxygen saturation lever hit 100 in the evening yesterday without any oxygen. We have never seen that before. He does still need help when he sleeps sometimes but has seemed a latter better lately.

Praise God that He is good even when we least expect it! Just when my bitterness and anger get the best of me God is right there with encouragement. I've noticed this pattern in the past when I just couldn't take it anymore and want to be mad at God, He does something so considerate. And, how could a person blame a God who just performed a miracle for their son? Yes, that thought crossed my mind, but I didn't care I was frustrated and couldn't get over it! I will admit, despite my angry attitude, I had begun to believe that I couldn't trust anyone but God and I was just going to ignore everyone else. Now, I know you are going to say that is so like a woman to be mad at God and trust Him at the same time! I know you know how merciful He is. Anyway, I will get to the point.

I believe we have finally been given some reliable test results. The latest results came from a lab center in Seattle, one of the nation's best. Up to this time, CMH has been using the Midwest center here in Kansas City for lab testing. Their method of testing is different from the method that Seattle uses. The lab reports that Midwest had been sending were not accurate, so now they are communicating with the Seattle Center to correct their system. Having said that, the Seattle lab center test that was sent off a week ago came back today. The results show that Granton has 95% donor lymphocyte cells and is nearing the end of his engraphtment!!! I told the doctor ahead of time that I might cry before he gave me the results, and he said he was feeling the same way. The transplant team gave us the thumbs up and expressed that Granton had been trying to tell us this all along!

So, now you get to experience the shock with us. We will be planning the surgeries, and discharge date again soon. Plus, we're back to the FK506 to prevent graft vs. host disease. Also, as soon as we get to the Ronnie Mac house we will no longer have to live in isolation! Until then, we must try to keep from spreading RSV throughout the hospital. I am thankful none of us, including the doctors, have to scratch our heads over test results quite so much. I am also thankful that we are just barely over our halfway mark post-transplant and Granton is showing vast improvement! Maybe, we will be home in time for his birthday after all. We will give you more up and down updates later, but for now I am hoping in God to sustain me and allow me to be happy over this amazing news!

Love,
Jenni

Friday, August 8

Granton has had good blood pressure readings through the night and this morning which is a praise. However, his lymphocyte counts are going down again. Pray that they will go back up. He's losing his donor white blood cells and now his own white blood cells. And, mom is losing her patience as everyday is something new, different or opposite than the previous day. To look at it positively, the transplant team has given two other repeat transplants and both were successful. Granton would be there third if he loses his engraphtment.

Jenni

Thursday, August 7

We don't have a lot to report this morning about anything new. Granton and Mimi had a long night and are sound asleep now. His blood pressure has been on the high side lately and several times in the night he got mad when the nurses tried to take it. The doctor's say it may have to do with the Clonadine patch they just weaned him off of. For now, Granton will get some blood pressure medicines to help keep it within range. Also, we had a false alarm panic in the night and Granton had an X-Ray done plus some antibiotics ordered and he somehow pulled out his ng tube. After one antibiotic they canceled the order because he was just upset in the night for lack of sleep not because he acted sick. And, the room next door experienced an emergency, so all this combined together made for a long night. That's all for now.

Jenni

Wednesday, August 6

As if this kid hasn't been complicated enough already, here is some more news to chew on...

Our most recent conversation with the transplant team took place about an hour ago. The information they have gathered tells us that Granton is losing his transplant engraphtment. The donor cell percentage dropped to 17%. However, Granton is still engraphting, according to the doctors. If the testing is accurate, Granton is engraphting his own immune system cells. The tests have ruled out lymphocyte cells from the cord blood donor's mother and lymphocyte cells from me. So what does this mean?

Now that it's proven that Granton is engraphting his own immune system cells we have to figure out if his cells will actually work. Are they going to fight off infection? The transplant team plans to culture those cells to see if they will fight off infection. If they do fight off infection and prove to be functional we will no longer have to be concerned about Graft vs. Host Disease. We will still have to take some precautions because Granton will be developing his own immune system as though he's still inside the womb safe and protected. He will not receive any immunizations until a year after transplant. Now, if his white blood cells do not work to fight infection we will have to accept another transplant.

So, his cultures will be sent off today and should be expected back within 2 weeks. For the time being, we have post-poned the surgery to take out the Hickman line and get a g-tube. He will need the Hickman line for a second transplant if the cultures show that his white blood cells don't fight infection. Even though I talk about doing another transplant, we are not planning for one. The doctors are confident that his test results have shown a steady increase in Granton's white blood cells and a steady decrease in the donor white blood cells. They said that this has never been seen before, and they are certain that the cord blood donor cells did work to save his life as we have witnessed.

If all this proves true, we praise God then and now that Granton will have a brand new immune system as we have prayed for over and over. We are thankful and rejoicing to know that he might not have a lifetime battle or fear of Graft vs. Host disease. I will say that the doctor's news and expression and tone was encouraging not fearful. I will also say that the lab center they've used over the years for testing is trying to figure out if there are any flaws in their system. Last, I know many of you have faithfully prayed over and over for the RSV and PCP to be gone. The transplant team said that if Granton's RSV test results ever turn out negative that that is evidence of his own cells working in his favor. Basically, Granton has once again proved complicated and the team is searching for possibilies or explanations for the results they've seen. They have been in contact with other bone marrow transplant doctors from other hospitals. It's all very confusing and interesting at the same time. We will keep you posted.

Love,
Jenni

Well, Granton’s last few days of wildness caught up with him and he actually took a nap this morning. He has been quite a bit calmer today. We did get a good test result back this afternoon. I could read the data about each type of cell and how it is better, but to keep things simple, the results were good. We are still awaiting the donor percentage results, though. If these results are good, the doctors will do a surgery where they give Granton a G tube (the second belly button) and also take out his Hickman to replace it with a port. The port is just under the skin and there for immediate access if he needs antibiotics and for drawing blood. Also, we heard they are planning to release us to the Ronnie Mac house by the end of next week. Jenni and I got to see where we will be living in the house. We really like it. It is like a very small apartment. We are all looking forward to sleeping under same roof at night. We have been thanking God so much. Going through what we have been through has opened our eyes to how much we have to be thankful for. Thank you for all the prayers and keep it up.

Two belly buttons

I don’t know how to describe the level of energy Granton has had lately. Scientist should study this kid to find a new source of renewable power. The little guy has been so much fun. The doctors just came by. They plan on weaning Granton off more drugs and they hope to have some more answers from new engraftment test results, which should be coming in soon. The big news is they are seriously talking about a surgery for Granton. It is a very common surgery where they basically give him a “button” that goes straight to his stomach. They tell us it has very little risk of infection and it does not damage his abdominal muscles. Parents seem to like it after it is put in. We see the benefits for Granton. He has needed a little oxygen at night when he is in a deep sleep and his mouth is shut. After this surgery he will no longer need the NG tube and that means no obstruction in his nostrils which will hopefully mean he does not need oxygen at night. Also, he has pulled out his NG tube a few times and he hates having it put back in. This would eliminate that problem. Another reason it is good is we always check for placement before we give him anything through the NG tube. We want to make sure it is in the stomach and no where else. We would not have to worry about this problem with the new “button.” Also, it would be nice not to have a tube taped to his face. The down side is he will probably be put on a ventilator for the surgery. We know he is better but last time he was put on a vent it seemed like forever before he was taken off. It will be hard on us to see him on one again. Hopefully, they can take him right off. Of course, it is always a little strange to let people poke holes in your child, and more so when he’s not sedated or paralyzed. The doctors seem to think this will be better for him in the long run and it should make things simpler for us once we get to the Ronnie Mac house. We agree with them even if we are not totally looking forward to it. Oh well, everyone loves their belly button. Granton will actually have two of them.

Monday, August 4

Good Monday Morning! Daniel is now calling Granton Captain Insano. He has been a hyper wild man ever since last night. I am so excited to see all his energy coming back! He did not stop clapping, shaking or bouncing for hours, and when we left last night he was upset that it was bedtime. We did change the hickman dressing last night and checked for placement of his ng tube, however, our official parent care status date has been pushed back. Unfortunately, the doctors would like to discuss his test results and figure out for sure how much FK506 Granton will need before we start giving it to him ourselves. Within 48 hours we should have more answers about Granton's lymphocyte count. Praying for God's will to be done in this situation and that Granton will have brand new lungs and a brand new immune system. Also, praying for strength just in case our road becomes longer than expected, but hoping for the best!

“b [-;.pkl hvvn ub b uumih n j

The following is a message Granton typed for the readers of his blog:

“b [-;.pkl hvvn ub b uumih n j

I don’t read baby type so if you have any little kids they may be able to tell you what it says. Granton spent some time unhooked from all the machines so we let him type part of the blog. We have had a good day and not much has happened. The only change the doctors have informed us of is they are completely stopping the graft vs. host disease medicine, FK506, to give the donor cells more help. Jenni and I have started our training for Granton’s medical care. I just used a stethoscope to check for placement of his NG tube and we will be redressing his Hickman line later today. Thank for all the prayers for the little guy and just keep it up.

Wild day

We have had a wild day. Granton’s teeth are bothering him. He had not pooped for a while and that always makes him agitated. However, he did have a colossal poop this evening. This one may go down in the record books. While we were trying to clean up the huge mess he managed to pull out his NG tube. We have not seen Granton without stuff on his face for many months so we took the opportunity to take a few pictures. Hope you like them.

Well another member of the transplant team came in. Actually, before I tell you what he said I want you to know I went on a walk and had a little talk with God. Basically, I told him we would trust in Him through everything. It makes no sense for us to give Granton over to the Lord completely and then question everything he does. He is in control. That is how we want it and we need to remember it. I used to make fun of the Israelites in Exodus because they had mana falling from heaven every day. They had a pillar of cloud in the day and pillar of fire at night but even through all this, they still doubted God’s ability. I am no better. I have lost count of the many days Granton has lived when he was expected to die. God has been so good to us and one little test result gets me all worked up. Anyway, nothing has changed. We are trusting in the Lord and he is still in complete control. Now that I got that off my chest, let me tell you what the other doctor said after I came back from my walk. This doctor is the top authority on SCIDs and I am always humbled by his intelligence. I joke that the IQ of the wallpaper goes up when he walks into the room. First of all, he did not change anything that the other doctor said. They are still concerned Granton could lose his donor cells and we could have to do this all over again. They would feel much better if his donor cell percentage increased. However, he did give us some new information. He is double and triple checking on the test. He wants to make sure there is no mistake, which of course is a possibility. He told Jenni that he is “perplexed.” What does not make sense to the transplant team is the fact that Granton’s lymphocyte count is good, much too good for the small percentage of donor cells he has. He said that with a reduced intensity regiment of chemo like Granton had, it is more common to have a day 60 slump, and we are on day 53. This would explain the small percentage of donor cells but it does not explain the sufficient amount of lymphocytes. If I understood him right, he even checked to see if some how the donor’s mother’s blood could be engrafting. Because the other option is that Granton is making his own lymphocytes. This is not supposed to happen, at least he has never heard of it happening. I asked if it was possible for a person with SCID’s to make lymphocytes when he/she hadn’t made them before. He said there is no literature that has ever recorded that. Then he said, “Granton is Granton; he is unique.” He also pointed out that the signs of infection are gone, he is not requiring oxygen, and he is gaining weight. Granton is showing improvement which he believes is a result of functioning lymphocytes. To make it as simple as I can, the doctors are confused and there will be many tests this coming week. We will just keep praying and looking up.

Saturday, August 10

Granton is feeling great. He was on the cranky side earlier but we think that might have been due to a new tooth he cut. I think he is up to eight now. We are also happy to report he did not need oxygen last night and he has gone over 24 hours without a canula. This is wonderful. We are celebrating his ten month birthday today. These are all great things but we did get some troubling news from the doctors today. Granton’s engraftment test came back. It only showed 38% donor cells. Last time it was 68%. The doctors are going to do a lot more tests but hey have expressed a fear of losing the engraftment. They do not have enough information to make that decision but they have decided to cut the anti graft vs. host medicine, FK506, way back. This should help his donor cells engraft but the down side is he will be at a higher risk of graft vs. host disease. Our prayer is that this works and Granton keeps his engraftment. The doctor said we will always be doing a balancing act with the FK506 between keeping the engraphtment and protecting against graft vs. host disease. We would really like to avoid going through this again, and have prayed daily in that regard. We are still practicing and learning to be joyful in hope, patient in affliction and fervent in prayer.

What's missing?

I will let you look at the pictures for a while before I tell you what is missing. Actually, there are some things missing that aren’t obvious in the picture. Granton is now missing a drug that fights graft vs. host disease because they don’t think he needs it anymore, but he’s still getting tacrolimis. He will also be missing a patch on his leg later today. The patch was something that started in the PICU for his withdraw from all the pain meds. Speaking of pain meds, they are weaning him again today. They can’t give him any less so they are giving him pain meds less often. We will watch him close to see how he handles all the changes. We are also watching for new results from his engraftment test. They should come next week. Of course we are praying about that. On the lighter side, I was just telling Jenni Granton needed a new toy and what do you know but Grandpa Todd showed up with one last night. As you can see in the picture Granton likes to play with his guitar. He is practicing up for a jam session with Great Grandpa Max. They just might invite Jenni to join them also. Okay, in case you haven’t figured out what is missing look under his nose. That’s right his nasal cannula is gone. Granton did not need oxygen yesterday during the day. He only needed a whiff last night from 1:00 to about 7:00. So now the nurse has taken off the cannula and we will use something called a blow by when he needs a little whiff. We are so excited! A few months ago we were prepared for this kid to be on a ventilator for the rest of his life and now he goes through the day breathing the same air we do. Thank you so much Lord.