| Nicholas Ashby |
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Nicholas' Journal July 2005
July 31, 2005 Sunday - (Day +241) Outpatient - (Day 198)
WOOOOWEEE!!! Look at those numbers go up, and up, and up!!!
WE HAVE NUTRAFILLS =
18,700 (4am)
July 30, 2005 Saturday - (Day +240) Outpatient - (Day 197)
WOW!!! Look at those numbers go up!!!
WE HAVE NUTRAFILLS = 5,400 (4am)
July 29, 2005 Friday - (Day +239) Outpatient - (Day 196)
WE HAVE NUTRAFILLS = 200 (4am)
July 28, 2005 Thursday - (Day +238) Outpatient - (Day 195)
Looking in World Donor Registry for another possible Bone Marrow Transplant!!
WE HAVE NUTRAFILLS = 100 WHITE BLOOD CELLS = 500 RED BLOOD HEMATOCRIT = 21,800 (4am) - 21,800 (4pm) PLATELET = 13,000 (4am) - 160,000 (4pm) BILLYRUBIN = 2.5
July 27, 2005 Wednesday - (Day +237) Outpatient - (Day 194)
WE HAVE NUTRAFILLS = 100 WHITE BLOOD CELLS = 400 RED BLOOD HEMATOCRIT = 20,900 (4am) - 19,800 (2pm) PLATELET = 21,000 BILLYRUBIN = 2.5
July 26, 2005 Tuesday - (Day +236) Outpatient - (Day 193)
WE HAVE NUTRAFILLS = 200 WHITE BLOOD CELLS = 300 RED BLOOD HEMATOCRIT = 23,100 (4am) - 21,800 (4pm) PLATELET = 41,000 BILLYRUBIN = 2.3
July 22, 2005 Friday - (Day +232) Outpatient - (Day 189)
WE HAVE NUTRAFILLS = 3,600 WHITE BLOOD CELLS = 3,700 RED BLOOD HEMATOCRIT = 20,000- 18,800 PLATELET = 44,000 BILLYRUBIN = 4.5
Nicholas woke up this morning a little sluggish after a great night of sleep. He had a hard day of play and fun yesterday so he might still be a little tired from that. He took a few steps last night back to his bed and held on to the side. He started to eat also last night taking a few bites of chocolate pudding, a bite of quesadilla, a bite of chicken nuggets, and he is drinking lots of water. This is a great start to his eating. His blood held for 18 hours since yesterday, even though he is getting another transfusion today he has not had one for 18 hours, a definite step forward. The chemotherapy is starting to work. Nicholas tried to take a nap today when he was pre-medicated for the transfusion, but a present was delivered and he got very excited and woke up. After his transfusion Nicholas and his Mom took a little walk outside and down to the fountain so he can throw pennies in it (he loves to do that). His billyrubin has dropped down to 4.5 even though he has been receiving blood everyday. His body and organs are working better everyday. Nicholas looks and acts better everyday and is even getting more energy. It will not be long and he will be running us ragged, I cannot wait. It is time to go back and play. Please pray for the continued gain of strength, and courage that Nicholas has to beat this process that he is going through right now and that we will be able to come home sometime soon.
July 21, 2005 Thursday - (Day +231) Outpatient - (Day 188)
WE HAVE NUTRAFILLS = 4,700 WHITE BLOOD CELLS = 4,500- 4,700- 4,600- 4,200 RED BLOOD HEMATOCRIT = 20,500- 20,500- 19,900- 21,700 PLATELET = 85,000- 78,000- 83,000- 52,000 BILLYRUBIN =
Nicholas looks great and feels great today. After sitting in his rocking chair for 7 hours yesterday he woke up this morning around 8:00am and said that he wants to go in the rocking chair. So up out of bed and in the chair we were. His red blood hematocrit held for 14 hours last night. He is going to get a transfusion today and it started around 1:00pm. His level fell just below the mark of 20,000, so better be safe and keep his hematocrit high where he feels much better. The chemo is starting to work and do its job. He was just a chatter box this morning, but it is funny that when the doctors enter the room he gets very quiet, then says bye-bye to them when they leave and he starts to talk to us again. Physical Therapy came in this afternoon to work with Nicholas and he took a couple of steps on his own with a little help from Mom. He sat in the chair and stood up a couple of times, and also stood on his feet for about 10 minutes while he played with one of the toys that PT brought in with them. He had a lot of fun, then the benedryl hit and it was time for the blood. This caused a nap this afternoon which he probably needed. We found out 2 days ago that the blood test that they did last week to check on his chimeras (to see how many of his old blood cells A- was left) and the results were that he has no A- blood that he is all donor of B+. This is awesome!! His hot and cold glutens are gone also. This is all great news. Now we just have to heal from the hemolasis. We were also told today that Nicholas may have to do 6 doses of this cytoxin (we are on dose #2) until it is all gone. This means about 14 more weeks at least in Utah. We were also told today that if Nicholas starts to walk and heals well like he has been that we may be going to outpatient on the first part of next week. Physically he needs to get stronger, walk, tolerate his feeds, and hold on to his blood. I think that he has done so well in the last 2 days that this will be possible. I think that he will like it better out of the hospital, but it is very scary. The hospital is the safe zone. Anyway he is doing great, got to get back to him. Please pray for his continued recovery.
July 20, 2005 Wednesday - (Day +230) Outpatient - (Day 187)
WE HAVE NUTRAFILLS = 4,800 WHITE BLOOD CELLS = 5,300- 4,900 RED BLOOD HEMATOCRIT = 17,800- 20,000 PLATELET = 160,000- 105,000 BILLYRUBIN = 6.6
Nicholas had a good night and slept very well after midnight when he finally fell asleep. His fever broke yesterday afternoon after a dose of tylenol. We have been trying not use tylenol because the liver breaks it down and we did not want any more stress on the liver, but it got too high yesterday and the tylenol did the trick. He has not had fevers today and has been in a very good mood. We had a problem with the blood bank again last night and it took 7 hours to get Nicks blood ready from them. His hematocrit continues to fall the longer that they wait to get us the blood. We talked to the doctors today about our long term plans for Nicholas and we were told that we could go though a total of 6 doses of cytoxin before this stops. He just had his second dose on Monday and it was a whopper. He was so sick from this on Mon and Tuesday that I felt really bad. Nicholas got out of bed today and had a bath, also he sat in the chair and played, watched tv, and looked at magazines for 4 hours. This was great. This was the longest time out of bed in 6 weeks. He was talking, and dancing to the videos also. He will get his blood drawn again today to see if we need to transfuse or not. Please pray that the cytoxin starts to do its job and the amount of transfusions slows down. Thank you for all of the prayers and please keep them coming.
July 19, 2005 Tuesday - (Day +229) Outpatient - (Day 186)
WE HAVE NUTRAFILLS = WHITE BLOOD CELLS = RED BLOOD HEMATOCRIT = PLATELET = BILLYRUBIN =
Nicholas had a very rough night. He did not feel good after the double dose of chemo that he received yesterday. He was uncomfortable all night until 1:30am this morning when he filled his pants and threw up. I did not know that someone could throw up so much. He was very sick. He slept good the rest of the night, and they have him on nausea meds every 6 hours now. This chemo has the worst effects between day 1-3. Today is day 1 with 2 more to go. His fever jumped up today and we have been fighting undiagnosed fevers now for 3 days with today being the highest at 38.7. He took a nap this afternoon and it was rest that he really needed. His blood hematocrit went from 24,000 to 18,000 today and he is getting another blood transfusion. He received platelets earlier today because they had dropped to 24,000. His new platelet parameter is 30,000 because the doctors feel that he is out of the woods when it comes to internal bleeding. He was taken off his feeds last night to help with the nausea, but when he was started this afternoon he took 40 cc in and they pulled 60 cc out. This means that his body is not passing it right now so they took him back off because the doctors said that he would just throw it and we just want to keep him comfortable and give him a day off. The feeds will probably start tomorrow or the next day as he feels better. The next couple of days are going to be very long days, so please continue to pray for Nicholas and give him the strength to endure all of this that he is going through. We love you sweetheart!!!
July 18, 2005 Monday - (Day +228) Outpatient - (Day 185)
WE HAVE NUTRAFILLS = WHITE BLOOD CELLS = RED BLOOD HEMATOCRIT = PLATELET = BILLYRUBIN = 7.2
Nicholas had a very restless night again. His hematocrit is low and we cannot seem to get the blood bank on track to get his blood here on time, then we get the blood here and the nurse just had other things to do instead of starting the transfusion. The blood arrived at 7:00pm and the transfusion started at 9:30pm last night. Nicholas had the worst reaction to the blood that he has ever had. 5 minutes into the transfusion Nicholas started to breath hard and had trouble. His oxygen rate dropped drastically (down to 70%)and the nurse ran for the oxygen mask and stopped the blood. He took a little while to recover, but about an hour later he was ok. The next transfusion started 6 hours later when the blood bank finally got the blood ready. This caused Nicks hematocrit level to be lower than when we started after the transfusion because of the length of time it took to get blood. Today we have transfused him 2 times to get him caught up. He has started his chemo today also, and the doctors have given him twice the dose as 3 weeks ago. They think that this will stop the hemolasis for good. He has been sluggish all day, but he has been pounded with blood, chemo, and antibiotics to fight the fever he has had for 3 days. He is such a trooper!! Please pray for the fast recovery so we can come home.
July 17, 2005 Sunday - (Day +227) Outpatient - (Day 184)
WE HAVE NUTRAFILLS = WHITE BLOOD CELLS = RED BLOOD HEMATOCRIT = 22,000 PLATELET = 68,000 BILLYRUBIN =
Nicholas did not rest very much last night. He toyed with a low grade fever all night and in to today. He slept from 10:00pm-11:00pm and then again from 12:00am-3:30am. His blood pressure is up a little ,and so is his heart rate and blood pressure. The doctors were not going to check his blood until 6:00am this morning and I knew that this would be too late. When his fever went up I asked the nurse if we could do another hematocrit because I figured that he was low, so she called the on-call doctor and he said it was ok. His hematocrit was at 19,100 and time to transfuse. She ordered the blood and the transfusion started about 3:30am this morning. We asked the doctors some very specific questions this morning and found out that he is still hemolizing a little. Not as aggressive as before, but he is because the chemo that lasted 3 weeks is due again tomorrow, and she thinks that it really helped the hemolisis and it is just time for another infusion of cytoxin (chemo). This will be given tomorrow and we do not know how many other rounds of cytoxin Nicholas will have to go through. We just have to wait and see in another 3 weeks. This can be an on-going process the doctor said this morning, depending on how Nicholas' blood reacts to it. Hopefully, it will be all gone in this next round. There does not seem to be any warm or cold glutens, but there is definitely some hemolisis. When his blood is typed and crossed the blood bank finds no A- cells and a little B+ cells, so they are using the neutral donor of O. A- being his old blood and when the transformation is over he will be B+. The doctor told us this morning that she and the blood bank have never seen anything like this before, and now there is 2 going through this, Nicholas and the girl next door. HMMMMMMMMMMMMMM at the same time and were both blood type miss-matched. Nicholas low grade fever may be from something that he picked up, or may be the feeds. They have been pushing the feeds up pretty fast and his gut may be stressing a little with all of the new food in it. His system is working and it is processing it, but may be a little slow, so the doctors slowed the feeds down for a day or so until we can figure out what the low grade fever is all about. Please pray that it goes away and we keep moving forward. Please continue to pray for Nicholas and his recovery.
July 16, 2005 Saturday - (Day +226) Outpatient - (Day 183)
WE HAVE NUTRAFILLS = WHITE BLOOD CELLS = RED BLOOD HEMATOCRIT = 19,700 PLATELET = BILLYRUBIN =
Nicholas had a great night of rest. His organs are doing very well and he had many very full diapers for me to change in the night. He woke up in a very good mood this morning. His blood hematocrit fell below the 20,000 mark to 19,700 and he started his blood transfusion around 9:00am this morning. The doctors tell us that it is the cytoxin (chemo) that is causing his blood to fall. This is expected. They lowered his platelet parameter to 30,000 today because they think that all of the surgical stuff has healed and there is not a need for such a high parameter because he should not bleed internally anymore. His feeds are going to be pushed up again to 30 and then up 5 every 12 hours unless he does not tolerate it. They are trying hard to continue to push food 24 hours a day in his gut to get it working, and keep it working. He is doing great with it, and he seems to be processing the feeds just fine. Ultimately, we need to get hinm off the TPN and Lipids and just on the feeds, but the best would be for him to start to eat all by himself and not need the extra. The doctor said that she thinks that this could come over a very long time. His skin continues to look better everyday, and he is talking and moving more also. He is getting stronger by the day and plan to have him back up to par in no time. Please continue to pray for the best recovery of Nicholas. We love you Nicholas!!!
July 15, 2005 Friday - (Day +225) Outpatient - (Day 182)
WE HAVE NUTRAFILLS = 5,800 WHITE BLOOD CELLS = 6,800 RED BLOOD HEMATOCRIT = 19,000 PLATELET = 65,000 BILLYRUBIN = 5.3
Again, Nicholas continues to go forward and do well. Each day he gets stronger and talks a little more. It is funny to hear some of the things that he says. Physical therapy came in today and he did not want to have any part in it. He was more contempt right on the bed, but this is what we need to do to - get him up and moving so he can get stronger. The doctors say that his numbers are doing really well, and the chemo did not affect them very much. The blood bank called and said that they do not see any more of the antibodies in his blood. These antibodies were what was causing all of the problems, thank god that they are gone. He is ready for the next round of chemo on Monday and we will see how he does. The doctors said today that if he continues to do well we may get to go home in a few weeks and if not maybe out of the hospital as long as we are local for the daily testing. This is awesome!!! His feeds got pushed up today again to 25. This means that he is at about half of his daily needs of the vivonex. He is still on the TPN and the Lipids for the rest of his caloric needs. His tummy is doing great processing all of the feeds that we are putting through it. Last night he was a little uncomfortable and we thought it was the feeds, but this morning we thought that it might be some of those bladder spasms that he was having. We had cut down on the medicine because he was doing very well, but we think that he may need it so we started it up again. He took only a little nap today and played with his toys and watched videos. All in all Nicholas is doing wonderful. Please keep up the prayers for him and his continued health.
July 14, 2005 Thursday - (Day +224) Outpatient - (Day 181)
WE HAVE NUTRAFILLS = 4,300 WHITE BLOOD CELLS = 5,200 RED BLOOD HEMATOCRIT = 18,900 PLATELET = 119,000 BILLYRUBIN =
Nicholas got his first bath for 5 weeks last night. He complained about it all the way until we got him out of the tub and on the bed in a warm towel when he said "squeeky clean" "Great". We then knew that he loved it, although it was very hard for him to sit there (I had to hold him up), but he was able to hold up his own head pretty well. His neck is getting stronger everyday. The doctors came in this morning and told us to get him outside in the sun. It would be good for him to get out of bed and enjoy the outside. So, we did. We went out to the waterfall in front of the hospital where he sat on moms lap and threw pennies into the water that was left in the pond. (I think they are cleaning it) He stayed for about 5 minutes and then wanted to go back to the room and take a nap. Just like the bath wore him out last night, so did the walk outside today. When we got back to the room he sat up in the chair by himself for 1 hour, then back into the bed and fell asleep. He is doing better everyday, and his strength is getting better also everyday. Nicholas had to have a blood transfusion today because his hematocrit fell from 21,000 to 18,000. His platelets are high enough that he does not need them. They are raising his platelet parameter to 50,000 now that the surgeries are over and he is healing the doctors are not worried as much about the bleeding. This means that he will probably get less transfusions of platelets. His numbers are dropping now due to the chemo he received 2.5 weeks ago and he will get another dose on Monday. For now, the doctors say it is just time to heal and get his strength back. Nicholas is doing a great job of that and he should be back in no time. Thank you for the continued prayers that Nicholas receives everyday. Please keep it up, it is wonderful.
July 13, 2005 Wednesday - (Day +223) Outpatient - (Day 180)
WE HAVE NUTRAFILLS = 3,900 WHITE BLOOD CELLS = 5,000 RED BLOOD HEMATOCRIT = 21,600 PLATELET = 177,000 BILLYRUBIN = 4.8
Nicholas had a great night of sleep. His bladder is getting better and he does not seem to have the pain that he did before. He has been resting very comfortably through out the day and night. He did not wake up until 8:00am this morning and started to talk right away. He is talking and laughing more everyday including demanding that "daddy go to McDonalds and bring chicken nuggets with ranch dressing." He does not realize that daddy does not have a car, so we tried to talk him into Burger King (which is located in the hospital) and he was OK with that as long as he got a "happy meal with a toy" He is so funny. Our old Nicholas comes around more and more everyday. His blood and platelet numbers are very high today so he will not get any transfusions. His billyrubin continues to fall very slowly as all of it works its way out of his system, 4.8 is great since we are down from 85.0!!! Physical therapy is suppose to start today so we will see what they are going to do to Nicholas to start to get him around. He is still very weak from the surgeries, but getting stronger everyday. Nicholas started demanding his coffee this morning from starbucks even though he cannot have it we went ahead and got him a decaf Americano and added his favorite flavoring (French vanilla) to it. We were surprised how many drinks he had. He is really feeling better to want his coffee and McDonalds, now if we could only get him to eat it. He did have another bite of his chicken nuggets today, so we will shoot for 2 later on today and tomorrow. Please keep him in your prayers for a continued great recovery
July 12, 2005 Tuesday - (Day +222) Outpatient - (Day 179)
WE HAVE NUTRAFILLS = WHITE BLOOD CELLS = 4,200 RED BLOOD HEMATOCRIT = 19,400 PLATELET = 69,000 BILLYRUBIN = 5.4
Nicholas had a good night last night. He started off to sleep really dreaming and saying "push play", "right here", "no more owies", which we think that is withdrawal from the narcotics. Nicholas is still grinding his teeth and is also picking at his fingers. The doctors say that this is his way of dealing with the trauma that he has gone through. He cries every time a nurse walks through the door,, but it is getting better everyday. He is not grinding as bad as the last 2 days, so hope that it goes away soon. The doctors told us that one of his cultures grew out on Friday and he had a staph infection. It is a good thing that one on the antibiotics that he has been on (vincomyosin) attacks this. This is probably why he had the fevers over the weekend. Physical therapy has started, but mom and dad are working with Nicholas all of the time to help him gain his strength back that he has lost during the surgeries. We play all day with Nicholas except during his naps. He is sleeping well now and getting all of the rest that he needs. He went 2 days without a blood or platelet transfusion, but today he is going to get both. His numbers are only slowly going down and this is due to the chemo that he is on. His blood seems to be fairly normal now, but there will be an extensive work up this week to make sure. Nicholas is on the road to recovery!! Please pray for his strength and courage to continue to fight and get better very soon. We love you Nicholas!!!
July 11, 2005 Monday - (Day +221) Outpatient - (Day 178)
WE HAVE NUTRAFILLS = 3,300 WHITE BLOOD CELLS = 3,700 RED BLOOD HEMATOCRIT = 23,200 PLATELET = 202,000 BILLYRUBIN = 5.5
Nicholas had a good night last night. It seems that the hydrocortisone was the culprit for the pain that Nicholas was having. His cystitis is under control with the new medication and he does not hurt with this either. He was doing good yesterday, but today he is even doing getter and even looks better. He is talking more, and even barking orders when he wants something. This is great that he is still showing his independence. He has been grinding his teeth and picking on his fingers. The doctors say that this is his way of coping with what he has gone through and it should go away in due time. He is sitting up in bed and is very aware. His speech is better, even more clear, and he has picked up on words that he did not say before this all started. He has never quit learning. What a trooper. He is tired of the doctors now and every time that one walks in he says "No owie, it's ok, no owie" Just another way of letting them know that he is tired of this whole thing. The social worker says that this is good that he is voicing his opinion and independence. We all agree. He is so strong and it is amazing. He is amazing!!! Physical therapy is going to start today so we can get some strength in his muscles and get him around again. He is still very weak, but should come around quickly because he wants to get going. He wanted to sit up , and get in the chair yesterday so I think that he is tired of not being mobile. The doctors say that he is doing great and we are just going to keep on healing. Nicholas will get another shot of cytoxin (chemo) on Monday then 3 weeks to recover. Hopefully at this time all of his old A- cells will be gone and we will be on our way home soon after that when his numbers come back. Please continue to pray for his recovery.
July 10, 2005 Sunday - (Day +220) Outpatient - (Day 177)
WE HAVE NUTRAFILLS = WHITE BLOOD CELLS = RED BLOOD HEMATOCRIT = 21,000 @6:00am 22,000 @12:00pm PLATELET = 86,000 BILLYRUBIN = HAPPY 4TH BIRTHDAY NICHOLAS!!!!!
Nicholas had a great night last night. After the pain doctor came upstairs and continued by process of elimination to figure out why Nicholas seemed to be in so much pain he wanted to discontinue the hydrocortizone and see if that helped. Along with that the nurses, mom, and I read the side effects of this drug Nicholas had them all practically. After last nights episode right after the pre-medication for the platelets it all started again. We pretty much knew that this is the culprit. The doctors did not believe it but said the try it today and not use it for the pre-medication. Guess what, it worked. Nicholas has had a very good day and the platelets are going in now and no reactions. We also figured out that he was having bladder spasims and the medication is also working for this. He is finally very comfortable watching his movies and even talking and bobbing his head to the music a little, and no fevers today either. Nicholas' entire bed was full of presents today and there was enough cake to go around to the kids on the whole bone marrow unit, and PICU. His room was decorated to the hill and was very festive. He opened some of the presents himself this morning, but being so weak he neded a little help. His blood test was taken this morning at 6:00am and was 21,000 so we figured that he would need blood. The test at 12:00 showed that he was 22,000. He went up despite the chemotherapy he is on his body continued to produce enough red blood cells for his hematocrit to go up. This is awesome. Nicholas has interacted more with us today and the staff at the hospital. He even showed us a little his his attitude. He is feeling better. The doctors told us today that they just want Nicholas to continue to recover. We are looking for better days from now on. He is such a trooper and such a strong son that I could never go through what he is going through. Nicholas you are awsome!!! Keep up the good work, we love you. Please keep the prayers coming for the continued success and recovery of Nicholas. I wil;l update later with pictures when I get them.
July 9, 2005 Saturday - (Day +219) Outpatient - (Day 176)
WE HAVE NUTRAFILLS = WHITE BLOOD CELLS = 4,800 RED BLOOD HEMATOCRIT = 27,000 PLATELET = 51,000 BILLYRUBIN =
Nicholas had a rough night last night. It was a full night of pain, hurting, screaming and just overall miserable. I feel so bad for him. The Bone Marrow Unit can never seem to get pain under control they just want to continue to give him narcotics and hope that it will just go away. Well, guess what??? It did not go away. I stayed up with him all night and watched his cry all night. I was very frustrated and at 5:00 am I told the nurses to get the doctors in our room and maybe then they will do something about it or move us in the next half hour to someone who can control his pain. I have told the nurses for 3 weeks off and on that there is a little of blood substance in his diaper and that he is hurting down there because he grabs himself when he urinates. They just continue to bolus him with the delated pain medicine thinking that this would help. I have told them that this pain med is not targeting what ever pain he is having, but they just do not pay attention to what I have been saying. Well, early this morning the nurse decided to do a urine analysis test and it came back positive with this thing called cystitis, which is very common in bone marrow kids receiving cytoxin (form of chemo). The bladder spasms and from what we have been told it is very painful. So now we have answers and they have started to treat this. Within a few hours he seemed more comfortable so I think that it is working. The doctors were there this morning while he was crying out in pain, and now we think we have a handle on it. Now that his pain medicine for his bladder is doing so well they are weaning off the delated pain medicine and he is doing well. He is on a lot less dose by this afternoon than last night and the pain doctors think that they will have him weaned off the meds tonight. He wanted to watch certain Wiggles videos this afternoon and shook his head to the music a couple of times today. This is a great sign that he is feeling better and the pain is being taken care of. Surgery came in this morning and removed his staples in his belly, and also took out the drain line from surgery. It was a little bit uncomfortable for Nicholas, but he did not really cry. The surgeon said it was like a pinch and Nicholas would feel a relief right away, and he did. For now he is resting and getting ready for a platelet transfusion. I an going to go to the store to but birthday presents for his 4th birthday that we have planned tomorrow. Please keep Nicholas in your prayers for the answers to anything that may come up, and please pray that he has a wonderful 4th birthday. Please pray for a road to full recovery.
July 8, 2005 Friday - (Day +218) Outpatient - (Day 175)
WE HAVE NUTRAFILLS = 6,700 WHITE BLOOD CELLS = 7,100 RED BLOOD HEMATOCRIT = 23,500 PLATELET = 264,000 BILLYRUBIN = 6
Nicholas had a rough night last night in the PICU. He started in on some very bad pain and at 3:00am the IV in his arm was pulled out because he would scream if you even touched it. This allowed his to sleep for 3 hours. We were told that the PICU needed beds and we were going to be moved back to the bone marrow unit in the afternoon. The PICU has been hopping all night and also this morning. Once we made the move the blood pressure went up, and the fever hit. He is still in a lot of pain and it is the hardest thing to control. The doctors put him on another big gun antibiotic since he has been playing with low grade fevers for the last couple of days, but today it hit hard, 102 deg. He has been miserable since last night. Nicholas had his stitches removed today at 12:00 except for the ones that he most recently got in surgery last friday night / saturday morning. Nick will be getting a blood transfusion tonight because he has fallen to his parameter of 20,000. Please pray that Nicholas gets some pain relief and sleeps well tonight. Please pray for a quick recovery.
July 7, 2005 Thursday - (Day +217) Outpatient - (Day 174)
WE HAVE NUTRAFILLS = 6,700 WHITE BLOOD CELLS = 7,200 RED BLOOD HEMATOCRIT = 24,400 PLATELET = 333,000 BILLYRUBIN = 8 holding
Nicholas had a very sleepy day yesterday and today so far. He was up and at em earlier this morning but has been taking a good nap. He is going to be transfused platelets today and will get pre-medicated so his sleep will continue into the evening. He shouted out this morning, with his eyes closed, and I thought that he was a sleep "doodlebops" and then a minute later he says "coming up next." It was so funny. No fevers yet today and he is coughing less. He looks great and is getting his Nicholas personality back. We have missed this for the past few weeks and are glad to hear it again. They are trying to wean him off the blood pressure drip, but when they decrease it too much his blood pressure goes up. It will be a slow process, but it may be done tomorrow. The doctors have put him on feeds again to try to get something in his stomach and keep it down. So far he is tolerating it well at 5cc per hour. From the raod that he has been on he is doing so well, and the doctors continue to say that he is amazing. He is so truely amazing, and loved by many people. The PICU will keep us for another night (I wish longer) and then we will go back to the Bone Marrow floor. We like it on the bone marrow floor, but we feel more secure in the PICU. Well, got to go. I will update later with any changes. Please pray for the continued healing of Nicholas. We love you stinker. Get well soon and happy birthday on Sunday.
July 6, 2005 Wednesday - (Day +216) Outpatient - (Day 173)
WE HAVE NUTRAFILLS = 6,800 WHITE BLOOD CELLS = 7,300 RED BLOOD HEMATOCRIT = 24,200 holding PLATELET = 174,000 BILLYRUBIN = 8 still going down
Nicholas stayed really sedated yesterday and last night. The doctors have been pulling his respirator down fairly fast this last couple of days so he can be removed. His lungs handled it very well, even thou there is still some damage to his lungs he was taken off the respirator this morning at 8:00am so he can finish the healing process on his own. He received a platelet transfusion this morning because he fell below 100,000 to prevent bleeding. His red blood cells are at 21,000 and will get blood today also because his baseline is 20,000 and the doctors do not want him to fall below this point because it is too hard to get him back to this point. He was pretty edgy after being taken off the machine, but do you blame him. Nicholas and his mom are currently resting right now, and long needed rest they both need. I am going to trey to nap myself also in a little while. Nicks liver and kidney continue to show gain and are doing very well. They are trying to get us out of the PICU and back to the 4th floor Bone Marrow Unit. That is kinda scary, but the doctors know best. I will update later with any changes. Please keep Nicholas in your prayers for the speedy recovery of his little body.
July 5, 2005 Tuesday - (Day +215) Outpatient - (Day 172)
WE HAVE NUTRAFILLS = WHITE BLOOD CELLS = RED BLOOD HEMATOCRIT = 25,000 holding PLATELET = 186,000 BILLYRUBIN = 10 still going down
Nicholas had a good night of rest. His red blood cell hematocrit is still staying steady at around 25,000. He had to have some platelets today and after the transfusion they are very high. This is very good since we do not want him to bleed anymore. His billyrubin continues to go down and is in a much better range of 10 and dropping. Our aim is to have him at a billyrubin of 1. He was a little more awake this morning, but they put him on a drug to help his muscles and help him to get more sleep and it sedates him too much, so they turned it down and hopefully he will be more awake, but not in pain. They have continued to wean him off the respirator last night and today. His lungs are doing great and the weaning will continue. They hope to have him at a peep of 5 by tonight and start to maybe let him breath on his own tomorrow and may be take him off the respirator all together. This is awesome. The doctors told us yesterday that it would be another week on the respirator, but it looks like he is healing well and it may be sooner. Our goal is to have him off the machine and back on the 4th floor by Sunday July 10, 2005 for his 4th birthday. Nicholas did well last night and Mom and Dad were able to get some sleep also. With the sedation slower down maybe Nicholas will wake up and do some watching of the television. Please keep up the prayers for Nicholas. He continues to need all that he can get. He is doing good, but lets get him doing better. UPDATE: Nicholas came down with a un-diagnosed fever this afternoon. All of the doctors have been in his room trying to figure out why he might come down with a fever now since he has been doing so good this far. Please pray that the fever breaks and does not come back.
July 4, 2005 Monday - (Day +214) Outpatient - (Day 171)
WE HAVE NUTRAFILLS = WHITE BLOOD CELLS = RED BLOOD HEMATOCRIT = 27,000 holding PLATELET = 40,000 and being transfused BILLYRUBIN = 13 still going down
Nicholas' numbers are still getting a little better today. The respirator was turned down a little in the night which means that he is not relying on it 100% he is down to 55% although his peep is 14 which is still high. The doctors said that he will probably be on it for a week while his lungs are healing and he is still in pain. His red blood hematocrit held at 27,000 for another night. The hemolisis is definetly slowing down and he is able to hang on to his own red blood cells. The other most wonderful numbers are his billyrubin which came down to 13. Thius is a far cry from 85 a week ago. His color is definetly getting better, and his urine is a more normal yellow color now instead of a redish orange. This is because his liver and kidney are working better to filter these fluids and return to some more normal functions. As the hemolisis slows down this will also continue to get better. His lungs took a pretty good hit, but are showing good signs of recovery while he is on the respirator. The doctors had a hard time a couple of times controlling some of his pain. The cramping in his tummy this morning that was gas cannot be controlled by pain medication, they just have to pass the gas to get rid of it, so hew tossed and turned a little this morning and loosened up his arterial IV in his arm. The nurse tried to put the IV back in since it was only loose, but she could not so she took it out. At least he did not pull this one out, it just loosened up due to him rolling around in the bed a little uncomfortable while we were waiting for the meds to kick in. All in all he is doing much better today and the numbers are showing it. He does not like the tube in his mouth, but while he is healing from the surgery and he is on the respirator he will have to stay. Please keep him in your prayers for the continued success and healing.
July 3, 2005 Sunday - (Day +213) Outpatient - (Day 170)
WE HAVE NUTRAFILLS = WHITE BLOOD CELLS = RED BLOOD HEMATOCRIT = 12,000 before surgery 25,000 after surgery PLATELET = 86,000 after surgery BILLYRUBIN = 20 after surgery
Nicholas was back in Emergency Surgery last night.
Nicholas was doing so well until yesterday afternoon. After 3:00pm Nicholas started to get real puffy and looked like he was retaining fluid. His belly was getting real large again and we knew that he was filling up with blood again and probably needed to be tapped again to get some relief. He was getting worst right in front of our own eyes and the Bone Marrow Team could not move him fast enough to the PICU. His stats were falling rapidly and he was in a lot of pain. He has started to cough and he is short of breath. I had told the nurses for the last day and a half that it sounded like Nick was wheezing and was hard to breath. They kept on telling me that his lungs sounded great when in fact his left lung sounded raspy and was not working well at all. He started to spike a fever also. His doctors were called in and we were taken down to the PICU where ultra sound, respiratory and all of the doctors and nurses that you could imagine were waiting for us. The ultra sound found that he was very full of blood and surgery was called also. The ultra sound guy tapped him to remove some of the fluid and relieve some pressure and put in a drain. They removed 2 liters of blood. He was pumping blood into his gut as fast as we could put it into him. Surgery came down to let us know that he was bleeding internally and it had to be fixed. We knew this and there was no other option. So at 1:30am this morning Nicholas went into surgery and a couple of hours later we got the call that he had made it and is in recovery. They had stopped the bleeding and hope that it does not happen again. Nicholas in heavily incubated and on a lot of pain relief medicines. His lungs have taken a hit ,and now the long road to recovery begins. His lungs have some fluid in them and have been shortened so he does not get as much air. This is because as his gut filled with fluid things inside had to get smaller or move around to allow the fluid. As his lungs shortened in was harder for him to breath. We met him in recovery and have been with him all day.
Nicholas' numbers are stable as the day goes on, and the sounds in his lungs sound better also. His lungs are expanding further down into the chest allowing more oxygen to enter. His numbers are steadily climbing showing us that he is more stable. His liver and kidneys seem to be working and doing there job since the Billy Rubin has dropped and his urine is getting lighter. His red blood hematocrit seems to be holding. These are all good signs to recovery, but it will be a while. Please pray that this is it for surgeries and Nicholas gets to just recover.
July 2, 2005 Saturday - (Day +212) Outpatient - (Day 169)
WE HAVE NUTRAFILLS = WHITE BLOOD CELLS = RED BLOOD HEMATOCRIT = 15,000 - 20,000 PLATELET = 86,000 - 199,000 BILLYRUBIN = 38
Nicholas' counts have done very well today and he has slept since 1:00pm yesterday. His hemolasis has slowed down alot, in fact he has not had to be transfused since 4:00an yesterday morning. He was able to holds his own blood for 36 hours without a transfusion. He will be getting some blood tonight around 6:00pm because his count dropped to 15,000 which is his baseline. He will also be getting platelets because his baseline is 100,000 and he has dropped down to 86,000. This is to keep him from bleeding inside where they took the blood from yesterday. His numbers are doing great and it seems that the medication is working pretty well. He is not in near the pain as he was and has been able to rest well for the last day. His pain medication is also working well now that the pressure has been removed from the inside cavity. He has woke up a few times to talk, watch wiggles, and wants to drink water then back to sleep. At this point sleep is good because he needs it, and needs to rest after all that he has been through in the last 3 weeks. Please pray that Nicholas continues to get better and is transfused less and less.
July 1, 2005 Friday - (Day +211) Outpatient - (Day 168)
WE HAVE NUTRAFILLS = WHITE BLOOD CELLS = RED BLOOD HEMATOCRIT = 23,000 PLATELET = 216,000 after transfusion BILLYRUBIN = 44
Nicholas had one of the roughest nights ever last night. He tossed and turned all night and was in severe pain. The pain medicine kept flowing and did no good except for over medicating him. It was the pain people who wanted to just keep pumping the pain medicine in him until he fell asleep, but it did not work and neither did the sedative. They even gave him a super high dose of valume which the doctors were not very happy with and that only worked for about 1 hour. His belly is very large and full of fluid. The ultrasound yesterday showed a packet of fluid there but they could not see what it was exactly. The surgeon was called in last night to see if this was a direct correlation to the gaul bladder surgery that he had and if they could surgically drain it. He said no due to the infections, and other problems that it could cause. This morning the doctors were on Nicholas very early and decided to go in there and insert a needle to pull out the fluid and see what it is. This procedure in like an amniocenthesis, but we will be removing the excess blood. When it was all over thery removed 500cc of blood and there was more, but could not safely remove this. They say that the remaining should just be re-absorbed back into the system. He felt much better after words, in fact his stomach shrunk 5 cm's and he is sleeping. He is so comfortable right now and this is a first for many days. -----More good news------ The doctors informed us today that the hemolization is now under control and his red blood hematocrit is 23,000. He has not been this high since we left to go home after our check up about weeks ago. In fact, he did not have to have 1 transfusion today ,and hopefully he continues to hold and does not have to have the other. His billyrubin dropped again and should continue to drop now that some of the excess blood has been removed from his tummy. His liver and kidneys have taken a hit, but the doctors say that we need to fix the damage that this process has done to the other organs as well as keeping his hematocrit high. His baseline platelet count has been pushed up to 100,000 to try to prevent the bleeding on the inside of his body. His platelet count was 84,000 this morning then after the transfusion he was 216,000. This is great and well above his baseline. So, for now he justs rests and heals. Please keep him in your prayers for a continued recovery.
Nicholas
Ashby Donation Account US
Bank (714-529-3983) Or
just walk into any US Bank Make
a Donation through Paypal: If
mailing please send to: Nicholas
Ashby Donation Account P.O.
Box 1817 Lewiston,
Idaho 83501
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