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Nicholas' Journal May 2005

May 31, 2005 Wednesday - (Day +180) Outpatient - (Day 137) 

 

Nicholas is doing awesome!! He is starting to eat more everyday so his tummy must be healing and all around he feels great. He is still true to his nickname "a wild man" running and playing all day. He likes to "ride in daddy's new car" and "go to McDonalds for a happy meal with a toy" He is so funny and the things that he comes up with is amazing. His anti-rejection drug (cyclosporin) taper has began and he is doing great with it. His final dose is scheduled for November 12, 2005. At this time he will be off all meds and he will start his immunizations all over again. We are so happy with his strength during this process and he has done so well. Please keep him in your thoughts and prayers for a continued successful recovery.

May 28, 2005 Saturday - (Day +177) Outpatient - (Day 134) 

All of the tests that were run on Nicholas came back negative on Nicholas. He doesn't need to start any more meds other than what he is on right now. NO GVH!!! What a relief. We just need to heal his tummy now and he will be eating better. Nicholas flew home on Angel Flight Friday (yesterday)morning. The pilot was very nice and even picked them up here at the hotel. They landed in Lewiston around 10:00am and went to grandmas for a party. Nicholas was very excited that he got to play with his cousins. It is Saturday morning and dad is rested and ready to make the long 10 hour drive home to Lewiston, Idaho. It is a long haul, but it is a beautiful day to make the drive. Please pray for Nicholas and his continued recovery, and for his dads safe drive home.

May 26, 2005 Thursday - (Day +175) Outpatient - (Day 132) 

WE HAVE NUTRAFILLS = 3,000  

WHITE BLOOD CELLS = 4,100  

RED BLOOD HEMATOCRIT = 27,300 

PLATELET = 142,000

Nicholas had his appointment this morning for his normal 2 week blood check up, antibiotic, and to go over the results of the scope and biopsy results. The doctors are very pleased that NO GVH was found at all. At this point all other of his tests have come back negative also. His tummy is inflamed and all red and it is no wonder that he has not been eating. He has been put on 2 other antibiotics to sooth his tummy and help it heal. The doctors say that he probably not eat and keep anything down until his belly heals. He did very good today and did not throw up any of the new meds. We have to continue to try to get him to eat everyday and get something in his tummy to keep it working. He will continue to stay on TPN until he eats, or in 2 weeks if he does not eat he will start to receive feeds his nose tube to keep his gut working. All of his numbers are great and some are higher than they ever have been. This is awesome. They have started the scale down of his cyclosporin (anti-rejection drug) to help to start to build his immune system. With the schedule in place he will be off all meds on 11-12-05 of this year and his regular immunizations will start. Nicholas and his mother will be flying home at 6:30am in the morning on Angel Flight, and I will start the 10 hour drive in the early afternoon. Please pray for a safe flight for them and a safe drive home for me, but most of all please pray for Nicholas and his continued well being. 

May 25, 2005 Wednesday - (Day +174) Outpatient - (Day 131) 

Nicholas had a pretty rough day today starting off with his scope at 11:00am. All went pretty well and the doctors found a lot of inflammation in his stomach and intestines. They called it severe gastritis's. We were told this comes with the territory of bone marrow transplant and the doctors now know why Nicholas has not been eating, and has diarrhea. They did biopsy his tummy and are testing it for GVH and we should know in a couple of days if it is either GVH, or caused by a viral something, or both. Nicholas has another appointment in the morning to go over the results, get another antibiotic, and all of the bi-monthly blood work up. With the exception of him not eating, and the diarrhea he has been a trooper and in a very good mood. Nicholas and his mommy have another flight with Angel Flight lined up on Friday morning to fly home, and I will set off and drive home at the same time they leave for the airport. Please pray for their safe flight home and my safe drive home, also please pray for good results of the biopsies and a continued fast healing process for Nicholas.

May 24, 2005 Tuesday - (Day +173) Outpatient - (Day 130) 

 

		Thank You Angel Flight Thanks to the pilots that flew my son Nicholas and his mother to Salt Lake City today. I drove through the night and arrived at 4:00am and got some sleep so I could pick them up at the airport today at 1:00pm.
We had to go to the hospital to get his tube in his nose so we could prep him to be scoped in the morning. Nicholas had a lot of fun on the planes. There were 2 planes- 1 that flew from Orofino to Boise and the other from Boise to Salt lake City. The plane shown here is in Salt lake. Nicholas will be scoped at 9:00am and the doctors will be looking for GVH or anything else that would cause him to not eat and still have diarrhea. We should be back at the hotel in the early afternoon to care for Nicholas. Please pray we get some answers to our questions so Nicholas can continue his path to full recovery. Thanks again to the pilots.

May 22, 2005 Sunday - (Day +171) Outpatient - (Day 128) 

 

Nicholas had a great time today also. We played all day jumping up and down to the wiggles and Bob the Builder until he wore himself and I out, then we went down for a nap, yes, the both of us. He ate great today and it seems that each meal he is eating a little more. He has only had diarrhea twice today, but it is still there and seems to be getting a little better. He takes his meds and all of his food without gagging, this is a plus. He seems to be getting better in many things, but the diarrhea. I plan on driving to Salt Lake City on Monday afternoon now since Nicholas' flight will not be leaving until Tuesday morning so I can be there when Nicholas fly's in and  pick him and his mommy up from the airport. Please keep him in your prayers for a fast recovery and answers to his diarrhea.

May 21, 2005 Saturday - (Day +170) Outpatient - (Day 127) 

 

Nicholas had a great time today. We played all day. His eating is definitely getting better and he is asking for food now. His diarrhea has been a little better, but still there. He had a lot of energy today, and we laughed and danced all day. He is just a blast, and so funny. It is very sad that they have to scope him, but maybe we will find out some answers so he can continue to heal. I plan on driving to Salt Lake City on Monday so I can be there when Nicholas fly's in and to pick him and his mommy up from the airport. Please keep him in your prayers for a fast recovery.

May 20, 2005 Friday - (Day +169) Outpatient - (Day 126) 

 

We have been home only for a few days from Salt Lake city. Nicholas is in a great mood and seems to be eating a little more everyday. Between his TPN and his hydration he is getting everything that he needs. The tests that were taken in Salt Lake City on Monday all came back negative, which is a good thing, but the diarrhea has not stopped and he is really not eating enough. We will be on our way to Salt Lake City on Monday morning for probably a week or so for Nicholas to be scoped and biopsies will be taken on his insides and they will be looking for GVHD and other things. I will be driving so we all have transportation when we get there. Being there for an extended amount of time is too hard without a car so I will drive, and then at least we can get out and do things. Hopefully then they will have more answers next week. Please pray for a speedy recovery and answers to our questions.

May 17, 2005 Tuesday - (Day +166) Outpatient - (Day 123) 

We are currently in Salt Lake City for Nicholas' check up. The drive here yesterday was very wet, raining and hailing all of the way. There were high wind advisories, and over turned trucks with lots of new snow on the mountains. Today it looks like it is going to be a nice day. Nicholas' appointment is at 9:00am and hopefully the doctors will have some answers as to why he is still not eating, and has diarrhea. His energy level is good living up to his nickname "the wild man." Please pray for a great appointment and I will update later with the results.

UPDATE:

WE HAVE NUTRAFILLS = 1,900  

WHITE BLOOD CELLS = 3,200  

RED BLOOD HEMATOCRIT = 26,600 

PLATELET = 139,000

Nicholas had a good appointment and his numbers are great. We have a plan of action to help him work through the no eating thing and diarrhea. He has been taken off another medication and his IV ampho also. They are doing allot of tests to see if they can find out something. If all of the tests are negative he will have to come back to be scoped. Lets hope that they find out really what is wrong so he can start to eat and get rid of the diarrhea. Nicholas feels great and is a wild man. He is on his way back to Idaho and he is really a great traveler. Please pray for the best results and a continued fast recovery.

May 14, 2005 Saturday - (Day +163) Outpatient - (Day 120) 

 

Nicholas slept in a little this morning, but woke with a little belly ache. We got out of bed and watched the wiggles and cartoons. He barely had his eyes open and he started to dance. He loves to dance to the Wiggles and Higgley Town Heroes. His meds gave him a upset tummy today, but it did not seen to bother him very much. He still has diarrhea and is not eating much at all. Thanks to the TPN he is getting all of his nutrition. We will be leaving to Salt Lake City on Monday for a check up and see why he is still not eating and why he still has a upset belly. Hopefully they will have some answers. Please pray for a safe trip and a speedy recovery for our very loved Nicholas.

May 13, 2005 Friday - (Day +162) Outpatient - (Day 119) 

 

Nicholas slept in the car as we drove down the river to get to Daddy's house. He woke up in a very good mood and wanted a "Kids Meal from McDonalds with a toy - a scrussy dog" So we picked this up on our way home. He ate pretty good, a little better today that in the last few days. All in all he is a very good mood and we played until it was time for his meds then it was time for him to go to bed. He was out sleeping at 11:00pm which was very late for him. He just kept on wanting to play and tickle daddy until he fell asleep. He is so precious!! Please keep him in your prayers for a fast recovery.

May 11, 2005 Wednesday - (Day +160) Outpatient - (Day 117) 

 

Nicholas had fun today riding his bike. This is the first day that has not been raining and Nick took advantage of it. He loves to be outside. He also wanted to "go for a ride in daddys new car!!" He is so cute!! He had a blood draw yesterday and his potassium was a little low so it has been adjusted. He still has diarrhea but is eating more with every meal. This is all a good thing. We will be back in Salt Lake City to address the diarrhea and a check up on Tuesday May 17, 2005. Please pray for a safe trip and a continued speedy recovery.

May 8, 2005 Sunday - (Day +157) Outpatient - (Day 114) Mothers Day 2005!!!

 

Nicholas was feeling pretty good over the weekend. He did not eat much, but ate a little more everyday. Still no fever, and not sick. This is a good sign. He still has diarrhea his tummy does not want to eat very much and this worries us. It is moms day today and Nicholas bought his mom a large candle to burn at home. He sat and played like a big boy while watching his big brother Mitchell playing baseball. He had a blast falling down in the grass and just being a kid. We hope that he continues to feel good everyday and is on the road to recovery. Please keep him in your thoughts and prayers for a speedy recovery.

May 7, 2005 Saturday - (Day +156) Outpatient - (Day 113) 

 

Nicholas had a great time today and feeling great from the long trip home from Salt Lake City. Now that he is relaxed he can get down to business and ride his bike and play with his toys. He has been watching cartoons and dancing. He is not eating very much but he is still on TPN so he is getting all of the nutrition that he needs until he starts to eat more or the doctors find out why he is not eating very much. For now we are just trying to recover from the almost 3 weeks in the hospital. Please keep him in your prayers for a speedy recovery.

May 5, 2005 Thursday - (Day +154) Outpatient - (Day 111)

We are driving home from Salt lake City 

WE HAVE NUTRAFILLS = 1,800  

WHITE BLOOD CELLS = 3,000  

RED BLOOD HEMATOCRIT = 28,000 

PLATELET = 155,000 

His numbers are higher than they ever have been in the past. His red blood cell are a little low, but we are sure that they are building. He is doing great and we are being released for 10 days to hope that he starts to eat and the C-Diff continues to go away. The doctors are not as concerned about GVHD as they were, but they do not think that he has it. We will know more in 10 days when we get back to Salt Lake City. Please keep him in your prayers for a fast recovery.

May 4, 2005 Wednesday - (Day +153) Outpatient - (Day 110) 

    Nicholas is still feeling great. He woke up wanting to go to the park, McDonalds, and Starbucks...so we did. He had a lot of fun going down the slide at the park and then wanted his own decaf white chocolate mocha. The staff that worked at Starbucks were glad to see him again. He only has had a few bites of cream of wheat, and a couple of bites off of a hamburger. His diarrhea is still here in full force, but no fever. I do not know how long they are going to let him go without eating real food, or when he is going to start to eat real food. He is on his TPN from the hospital so he is getting some of his nutrition. He is still talking like a mag pie and running around like a mad man. I hope that all of this turns around soon. We have a doctors appointment in the morning for a check up and we will see what they say then. Please keep Nicholas in your prayers for a continued recovery and a safe trip back to Idaho.

May 3, 2005 Tuesday - (Day +152) Outpatient - (Day 109) 

WE HAVE NUTRAFILLS = 1,400  

WHITE BLOOD CELLS = 1,900  

RED BLOOD HEMATOCRIT = 26,200 

PLATELET = 136,000 

     All of Nicholas' numbers are up today. His last dose of the Flagil was at 12:00am this morning. He woke up a new kid. The flagil must have really made him feel very bad. He has been wound all day and just full of energy. He is still not eating, and still has diarrhea. We were released today out of the hospital and are staying at a near by hotel for a few days. He will go back to outpatient on Thursday for more testing to make sure that the infections are gone and that he is eating before we go back to Idaho. He ate a few bites of cream of wheat tonight (it is a start) and took all of his meds without much problem. He is having allot of fun being here at the hotel and out of the hospital.    

May 2, 2005 Monday - (Day +151) Outpatient - (Day 108) 

WE HAVE NUTRAFILLS = 1,000  

WHITE BLOOD CELLS = 1,600  

RED BLOOD HEMATOCRIT = 25,000 

PLATELET = 122,000 

     All of Nicholoas' numbers dropped a little today. He ate a pretty good dinner for him lately, but when he did eat this morning he threw it all up. He has not done this for a few days now. The antibiotic does give him a upset stomach and the doctors are told that Flagil makes everything taste like dirty socks, and one of the side effects of flagil is a very upset tummy and diarrhea. The doctors do not seem to be very worried about this because this can be flagil induced. We are going to be released to the University Guest House on Tuesday for a few days of outpatient care. The plan is to get him out of the hospital environment and back to a routine and hope that he starts to eat and take his meds orally. Right now this is a fight, but he is a real trooper and does it despite the upset tummy. When all goes well we will be coming home by the weekend. The C-Diff can come back in a few days, and if so we will be admitted again. The doctors continue to think that he had a viral infection, and C-Diff that he has been fighting. His spirits are very high and he is very active. Please keep Nicholas in your prayers and pray that he starts to eat and take all of his meds everyday so we can come home.

May 1, 2005 Sunday - (Day +150) Outpatient - (Day 107) 

WE HAVE NUTRAFILLS = 1,100  

WHITE BLOOD CELLS = 1,700  

RED BLOOD HEMATOCRIT = 25,600 

PLATELET = 135,000 going up

     Nicholas is having a better day today than yesterday. We do seem like we are definitely on the down hill side of getting him better. Monday will be his tenth day on flagil and Nicholas will be off the antibiotic. The doctors want to send us out of the hospital on Tuesday to see if he will start to eat when he gets into a different environment and out of the hospital. They also want to watch to make sure that this C-Diff does not come back in the first 3 to 5 days. We live too far to make this trip very often so we will be staying close to the hospital for a few days next week to monitor his health and numbers. Nicholas feels great today and he is a "wild man" He has not felt this good for a couple of weeks now.  He is taking all of his oral meds without getting sick, but it is a slow process. Now, we just need for him to eat and things will be back to normal. Hopefully when we finish the flagil his upset tummy will go away and he will want to eat food. For now we are just hanging out and trying to get him better. Please keep him in your thoughts and prayers for a fast recovery.

 

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