| Nicholas Ashby |
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Nicholas' Journal June 2005 June 30, 2005 Thursday - (Day +210) Outpatient - (Day 167)
WE HAVE NUTRAFILLS = 9,300 WHITE BLOOD CELLS = 9,900 RED BLOOD HEMATOCRIT = 17,000 PLATELET = 77,000 BILLYRUBIN = 46
We received great news about Nicholas this morning after a grooling night with him up all night in pain. His tummy hurt and he just tossed and turned. When the nurse came in this morning she said the lab called and told her that Nicholas blood looked great and they no longer have to run 2 tests to see if everything was ok because they got the same result from both this morning. A couple of hours later the lab called the PA and told her that the antibodys were slowing down and his blood looked great. A little while while we were all in the room the lab called again and said that the hemolitic process was slowing down and Nicholas hemetocrit did not change. This is all great news. This means that Nicks blood is holding on longer and hopefully we will get a break in transfusing him. The doctors were going to put off todays transfusion a couple of hours.
Nicholas was hurting all night last night and all of the doctors were called in to see why. This morning we had an appointment with the X-Ray people to see if there was anything there. The X-Ray turned out good. The kidney doctors were called in again and wanted us to go to get a ultrasound done to compare the other info to. When we did low and behold there was some fliud behind the liver that was not going away. This is why nicks back hurt him, and he cried out all night. I know that the pain doctors thought we were crazy, but now we know. The surgeon is on his way in so we can find out what to do. Nicholas might be going to surgery in the next day or two. At least this gives us an answer to his pain, although I do not want him to have to go through a 3rd surgery. Please continue to pray for our very loved Nicholas.
June 29, 2005 Wednesday - (Day +209) Outpatient - (Day 166)
WE HAVE NUTRAFILLS = 12,000 WHITE BLOOD CELLS = 24,000 RED BLOOD HEMATOCRIT = 12,000 PLATELET = 16,000 BILLYRUBIN = 45
Nicholas had good numbers this morning when the doctors came in to visit. His liver and kidneys still seem the be working good and the liver and kidney function numbers are ion the normal range. The doctors seem to think that he is getting rid of his billyrubin because his number has dropped from 82 to 45 this morning. His body seems to be shedding the excess billyrubin on its own. His blood dropped again today but only a couple thousand. It has seems to be slowing down. We should see some slow down in the overall numbers in 3 - 5 days the doctors say. He is still receiving blood transfusions every 4 hours, and today he got platelets due to his count being 16,000. Nick has been in pain today and the doctors are having a hard time trying to figure out where he hurts so they can give the right meds. They seem to think that he just hurts all over. The hemolization they say is a little painful, and the billyrubin and jaundas is also painful, along with 2 surgeries in a week, and a low hematocrit level. Nicholas just does not feel good period. Hopefully the medicine will start to work and some of this will turn around. Please keep Nicholas in your hearts and prayers. Pray that he has a fast recovery and that he has a better night. We will be thinking of you "luv bug". We love you Nicholas!!
June 28, 2005 Tuesday - (Day +208) Outpatient - (Day 165)
Nicholas had a pretty rough morning starting at 4:00am. I think that he either had gas, or his tummy was upset due to the chemo that he started yesterday. Nausea is one of the side effects of this type of chemotherapy that he is receiving. After the pain medicine did not work we gave him some benedryl to calm his stomach and he has been sleeping ever since. His numbers have looked good for the last 2 days and did not take much of a drop until this morning. His blood fell a little more last night than he has for the last 2 days. He has held steady at 16,000 or 17,000 between transfusions, but today he fell from 15,000 to 12,000. This is not bad compared to last week where he fell from 18,000 to 7,000-10,000. He is trying to hold his own a little more each day. The doctors said that it should take 3 or 4 days for the chemotherapy numbers to show a small turn around. When he is awake he is more aware and talkative than last week or even a couple of days ago. He will tell us that he loves us, he will say doodlebops, and ask for water, and tell us to change his pants. He is urinating allot because of the fluids that are running through him. His fluids are on 2.5 times the maintenance levels. His billyrubin numbers are also getting better, and I think that his color is getting better also. The doctor said that he is still not out of the woods, but he is doing great and his stats are excellent, this is very positive. Please pray that this chemotherapy works and Nicholas starts to feel better everyday.
June 27, 2005 Monday - (Day +207) Outpatient - (Day 164)
Nicholas has been very tired all day. He is sleeping comfortably ,and when he woke up he has been drinking a lot of water. This is good. He is keeping his liver and kidney very hydrated and his numbers are still in the normal range. Nicholas had his first chemo IV today and will not have another one for 3 weeks. This cytoxin medication is suppose to turn this process of hemolizing aroung. The doctors said we should see some increase in just a few days. Nicks blood pressure was very good today and his oxygen levels were higher than has been in the last couple of weeks. The pain medications are working and he does not seem to hurt when he is awake. He woke up this morning and told me to change his pants, drink cold ice water, and turn on video, so I did. His billyrubin is a little lower today, but has a long way to go before it is in the normal range. This decrease is wonderful though. Nicholas had a long night last night, but had a good day considering. The fluid levels that he has coming out is high enough to keep his organs fully hydrated and continuing to do ok. Please pray for a full recovery from this hemolization of the red blood cells, and also please pray that this cytoxin works great and our stay is short.
June 26, 2005 Sunday - (Day +206) Outpatient - (Day 163)
After Nicholas was taken off the respirator yesterday the PICU Nurses also took him off almost all of the pain medication. This was not good. Nicholas woke up at 3:00am this morning in a lot of pain. Our nurse did what he could to keep his pain under control until morning when the pain doctors will get there and get him back on a constant drip of medication. The pain doc's walked in when Nicholas was hurting very bad and gave him some high doses of medication right away. He has rested well all day so far, thank god. His liver and kidney functions are working and showing normal numbers right now, but Nick is still a very sick boy. When I asked his doctor this morning how long can Nicholas continue at this pace of blood transfusions until it takes toll, she said "a week ago!" He is a fighter despite all of the odds and is still continuing to show some strides forward. The doctors do think that this will turn around, and we hope soon. Nicholas has been on a 24 hour blood transfusion since yesterday and today with a bag of blood running every 4 hours with a 2 hour rest in between. He has done well with it and has not had a reaction to the blood. We are back on the 4th floor Bone Marrow Unit and not in the PICU right now. There job with his organs is done for now and it is time for the bone marrow doctors to take over. After being on this floor for 7 months it is good to be back there with the nurses and doctors that know him and his condition best. Please keep Nicholas in your prayers for a successful recovery so we can someday come home. Please keep Nicholas in your heart and let him know that you are praying for him.
June 25, 2005 Saturday - (Day +205) Outpatient - (Day 162)
Nicholas had a lot of pain last night. He is still on the respirator, but we hope that he can be removed in a day or so. His blood hematocrit continues to fall very rapidly. He is being transfused right now and will be for the next 24 hours. Each transfusion will be 4 hours long with a 2 hour break in the middle for a total of 24 hours. Nicks oxygen levels fall when his hematocrit falls below 15,000, and we have not been able to get him above this level since surgery, so he is still on the respirator. He is healing from the surgeries, and this morning he seems to be resting comfortably. The pain medicine keeps him a sleep so he can heal. Nicholas' kidneys were stressing yesterday and his numbers shot up. The kidney doctor made some changes in the fluids and his numbers looked better this morning. The liver also seems to be doing a little better as days go on. Please pray for his healing. Please pray that Nicholas continues to beat this. He is such a fighter and has plenty left in him. He is still so strong. Please send out as many prayers as you can. Keep up the good work, "luv bug" We all love you.
UPDATE: Nicholas was taken off the ventilator today and seems to be doing pretty good. He was also taken off 1 pain medication and temporarily off another, although he was starting to hurt a little as he was becoming more aware he is healing pretty good. He is still very sick, and the hemolosis of his blood has not stopped so we will continue to work toward fixing this also. The surgeries just fixed todays problems that were brought on by the hemolosis. Please pray for Nicholas to continue to heal and stay tough through all of this.
June 24, 2005 Friday - (Day +204) Outpatient - (Day 161)
Nicholas got out of surgery last night at 10:30pm. It went well. We were very scared about the income of the surgery because the surgeons and doctors were saying that Nicholas has to be a world record for someone who is alive with a billyrubin of 85, with 1 being normal. His hematocrit was also at 10%, but Nicholas had to have this surgery in the hopes that his billyrubin will come down after they remove the gaul bladder. The surgeons were impressed with how well Nicholas did come through the surgery. He had blood transfusing during surgery, and then after. He also had to have a transfusion of platelets before he went into surgery. He came out of surgery on a respirator and stayed on it all night. The team just wanted him to rest without pain, and stay relaxed. We all got a little sleep last night. Nicks Grandma, Great Grandma, and step dad came down from Idaho to be there for Nicholas when he came out of surgery. Nicks billyrubin levels dropped 10 points through out the night. This is awesome and it is what we were hoping for. He will have a long recovery from 2 surgerys in 1 week, but he is very strong and is doing ok. Please pray that Nicholas continues to beat this, and continues to do well. He is so strong and is such a trooper. Keep it up "Luv Bug"
June 23, 2005 Thursday - (Day +203) Outpatient - (Day 160) Going to surgery again!!!
Nicholas is on his way to surgery this afternoon between 2:00 and 4:00. Three teams of doctors are working on Nicholas to try to figure out what is happening. Nicholas' billyrubin is so high that the hospital machinery cannot even read to get accurate levels. His liver is in really bad shape due to the extremely high billyrubin levels and a Gaul bladder full of "sludge" they call it. There might be a blockage in the main part from the liver to the Gaul bladder, or even further down. Nicholas' liver is on overload and not able to process the meds, antibiotics, liquid food, and all of the blood transfusions. By removing the Gaul bladder this should free up the process of the liver and allow it to start to work better. It is kind of like unclogging the filter. His hematocrit fell to 10,000 again today and he has been being transfused for the last 8 hours. He will also need platelets before surgery. He is being prepared now, and then we will be in the PICU for a couple of days. Please pray for Nicholas to keep him strong through this very demanding process. Please pray that the surgery goes well and he can start on the road to his recovery. Please pray that he continues to fight like he has always done so well.
June 22, 2005 Wednesday - (Day +202) Outpatient - (Day 159)
Nicholas took a turn last night. It started with him being in a lot of pain followed by x-rays etc.. We have had a hard time controlling his pain today, and then found out that Nicholas' liver is failing. It is working very hard and cannot keep up with the red blood cells that are licing themselves. He had to have another transfusion today because his hematocrit was 10,000. The doctors have taken off all of the meds that go through his liver in the hopes that we can give it a rest. His billkyrubin is so high that the machines cannot even detect how high that it really is. The doctors have told us that hopefully with him off all of the meds that go through his liver it will start to turn around. Only time right now will tell. We are trying to keep his pain under control and keep him comfortable. Please pray that Nicholas is not in any pain and the best outcome for him comes soon. Please pray that his liver function turns around and he kicks this. Please pray that the blood cells stop licing themselves and gives Nicholas a break.
June 21, 2005 Tuesday - (Day +201) Outpatient - (Day 158)
Nicholas is still receiving transfusions everyday. The hemolizing of his red blood cells because of the cold glutens seems to be slowing down a little. Nicholas only received half of the bag of blood today as he did the other days. His counts fell, but not as drastic. He received a half bag (120cc) of blood this morning at 9:00am - 1:00pm. His 5:00pm blood draw showed a hematocrit of 18,000 and then again at 9:30pm it showed a hematocrit of 14,000. Last week he was falling more than that when he was being transfused 220-240cc of blood for 18 to 24 hours a day. The removal of the spleen does seem to be slowing it down a little. The doctors told us today that if it does not slow then Nicholas will have to start chemo all over again, but not as aggressive, then possible another bone marrow transplant (his own stem cells) to get rid of the 5% host bone marrow that is causing so much trouble for Nicholas. He is very juntas and the doctors only want to transfuse him if his counts fall below 15,000 to help out his liver. It is working too hard right now and his billyrubin counts are through the roof. Nicholas seems to be in quite a bit of pain from all that is going on in his body, surgery, hemalising, etc... He sleeps through out most of the day. Other than the blood problem Nicholas seems to be hanging in there. Please keep him in your prayers for a fast recovery and not have to start chemo next week.
June 19, 2005 Sunday - (Day +199) Outpatient - (Day 156)
Nicholas slept good through the night with just some moaning. The pain medicine works very well for keeping his pain under control while he is healing from the surgery. He was transfused again through most of the night and his hematocrit was taken at 2:00am and he was 18,000. He did not get quite the bump that we hoped for, but it was good nevertheless. His hematocrit at 7:00am this morning came back at 14,000 again, so another transfusion is in the works. We were told by the doctors that this can go on for a while or until his cold glutins either go away or learn to live with the other cells. The warm glutins were taken away with the removal of his spleen. Between the pre-medication for the transfusions, and the pain pump Nicholas sleeps most of the day. Although, he is awake right now and is watching Shrek 2 one of his favorite DVD's. He is starting to drink more water now and is asking for it consistently. His transfusion will be finished around 6:00pm today and hopefully he will get a great bump to his hematocrit and we can get through the whole night and transfuse in the morning if necessary. I will update later if necessary. Please continue to pray for Nicholas and his recovery. Update: Nicholas had a good day today. His transfusion went well, and he was a sleep for most of it. His bouls are starting to work and the pain management is still great. His hematocrit 5 hours after the transfusion was still at 19,000. This is good. He will probably need to be transfused tomorrow anyway.
June 18, 2005 Saturday - (Day +198) Outpatient - (Day 155)
This morning Nicholas woke up at 4:00am in a lot of pain. It was very hard to control it with the meds that the PICU had him on. After surgery yesterday he was on the anesthesia and slept most of the day and we got behind in the meds because the nurses were reluctant to give him some pain meds because he looked comfortable when in fact he must have been hurting. We kept asking for better meds or to increase the dose so he did not have to hurt. The PICU Team and the Bone Marrow Team decided to take us back upstairs to the 4th floor Bone Marrow to get Nick out of the PiCU where there can be a lot of germs. His Mom and I were not real happy with this decision, but we do understand the germ precaution, and the 4th floor nurses are great. After getting settled on the 4th floor Nick was put on a PCA pump for his pain. This pump will give him a continuous feed of pain medication to help him get through this initial pain from the surgery. It worked great and Nicholas is not not complaining of any pain. He was even awake and watched a little TV. We did another blood test and he was crashing again. He dropped from 20,000 to 14,000 and was in need of another blood transfusion. He did not crash as fast or as low as the last 2 days so lets pray that this is a good sign. We got him ready and the new blood started to flow around 4:00pm today. We got very scared when his stomach started to swell. We had his PICU doctors from downstairs, resident surgeon, on call bone marrow doctor, nurses, in his room to check him out. We were scared something was very wrong. He got an emergency X-Ray and found some gas, and some excess fluid. He was given some lasics to get rid of the fluid, and the gas should disappear in a couple of days. (This is such a scary process) His heart rate started to come down about 1 hour later after the transfusion had started. The doctors told us that Nicholas will probably need at least 1 blood transfusion a day until the bloods cold glutens are overwhelmed or go away and Nicholas' body can hold a hematocrit of at least 20,000 on his own. The removal of his spleen got rid of the warm glutens that he had and now it is time to aggressively fight the cold glutens. This change over of his blood type (A-) to his donors blood type (B+) is a very slow and frustrating process, but we will push through. I am so glad that Nicholas is so strong and can endure this process. He will have a couple more tests into the early morning to see how fast he is falling, and when we will need to get him more blood. His base line transfusion level has been raised from 15,000 to 17,000 to help him not crash so fast and feel so bad and sick when he is crashing. Please continue to pray for Nicholas and his recovery. He needs all that he can get. He is having a tough time but seems to be getting through it all.
June 17, 2005 Friday - (Day +197) Outpatient - (Day 154) Nicks is in Surgery to remove spleen!!!
Nicholas was taken to surgery this morning at 8:30 am to have his spleen removed. The doctors say that this should hopefully shut off the destruction of the red blood cells as they pass through the spleen. In theory this should be right. Before the surgery the surgeon thought that Nicks spleen was not very swollen, but after the surgery when he came to talk to us he said that it was 4 times larger than it should be. This was a good thing that it came out. The 2 tests that were drawn right after the procedure showed that Nicks blood was going up, but they we turned off the blood machines and continued to check. At 4:00 and 8:00 pm his blood continued to fall at the same rate as before. Hopefully this will turn around in the next couple of days. Nicholas has been given another transfusion tonight and seems to be doing as good as can be for right after surgery. Nicholas also needed platelets this morning before surgery so we gave then to him and got a great bump from them to 168,000. Nicks body seems to be funtioning well except for the red blood cells. The jandas will eventually go away and his skin will have a nice white tinge instead of yellow. Nicks pain from surgery seemed to be very controlled and his first transfusion went well also. Please keep Nicholas in your prayers, and pray for his body to make this change in his red blood cells.
June 16, 2005 Thursday - (Day +196) Outpatient - (Day 153)
Late last night Nicholas' blood pressure started to go up and continued to climb. He was put on his blood pressure meds that he took during transplant. This is because of the extremely high doses of steroids that he is receiving right now. This could be very good because it shows that the steroids are working on his blood pressure, and so maybe it will work on the blood hierocrat problem that Nicholas is having. If the steroids do not work he will be taken in for surgery to remove the spleen. The spleen sees his blood as an invader and is demolishing them faster than he can make them. This is a form of graft versus host of the blood where the old A- blood (host) is fighting the new B+ cells (graft) and his type is trying to change over so the A is putting up a fight. He was put on continuous blood flow since yesterday morning at 8:00am and his hematocrit is now 25,000. This is great and we do not know if this is all transfused blood or if it is some of his own B+ blood holding their own. The blood machine has been shut off today at about 1:00pm and blood will be drawn at 5:00pm and then again at 10:00pm to see where he is. If he is holding on his own, and the steroids worked then the surgery to remove his spleen will be called off and we will just watch his progress. If the numbers continue to fall then the blood machine will turned back on and he will receive blood continuous until he has his surgery and does not need it any more??? This will help to get his counts very high to be able to handle the surgery. He will probably need a platelet transfusion also, they have been falling for the last couple of days and he is currently at 82,000 from 196,000 a few days ago. If this does happen then he will go to surgery sometime in the afternoon tomorrow. Nicholas sat up in bed this morning wanting a coffee in bed. He does not usually drink them lately, but I went and got one for him and surprise he drank it and wanted more. He should not have coffee with high blood, but he usually only wets his lips, then he wanted more. So, I made my way downstairs to get him a small decaf Americano. He did drink some and then he was not interested. Nicholas has done nothing but sleep for the last few days so it was nice to see him up today. Please keep Nicholas in your prayers for a fast recovery and that he does not have to go and get his spleen removed tomorrow. He is such a trooper that does any need any more stress. UPDATE: Nicks blood continued to fall through out the day and we kept him on the transfusions into the night. He had a reaction to one of the transfusions at 9:00pm and they had to stop the transfusion and re type and cross the blood. It was a couple of hours until this was done and then the new blood started to run. It will be a very long night a head of us.
June 15, 2005 Wednesday - (Day +195) Outpatient - (Day 152)
Nicholas has had a pretty rough day today. His blood cells dropped from 15,500 to 12,000 in just 3.5 hours. He had more blood ordered but would not be here until later. By 9:00am the blood was here and the transfusion had started. The doctors have changed some of his meds and started him on his TPN again so Nicholas can be fed and not have to worry about the earting thing even though he through up his feeding tube up 3 times last night they will keep it in just in case that they need it. I think that the line started to irretate him. Nicholas is still in the PICU and will not probably come out of there for a while now. The doctors have continued to add more antibiotics, and dropped some of his meds. They have also ordered to have Nicholas on a 24 hour transfusion of blood all day to get him ready for the big day either tomorrow or the next day. He is on an emergency wait for the removal of his spleen in the hopes that this will reverse this process. The blood center has had a hard time to get his blood made since it is so rare and we were told that they only have enough blood through tomorrow right now. Nicholas fever stayed normal all day today, but his blood pressure started to climb tonight. It was as high as 146/98. He was started on some blood pressure medication tonight and this should work. Nicholas has done nothing but sleep for pretty much all of the day. He does sit up occasionally and watch the tv, but he gets medicated for the blood products and it puts him to sleep. Hopefully after all of the blood today he will be more awake tomorrow. Please pray that his numbers start to turn around tomorrow, and he does not have to go to surgery to have his spleen removed. Please keep him in your thoughts and prayers.
June 14, 2005 Tuesday - (Day +194) Outpatient - (Day 151)
Nicholas blood draw this morning came back with a hematocrit of 11,000. He is still falling rapidly and will probably receive more blood today. Please pray that the doctors have a plan that will help Nicholas very fast. I will update later tonight. Please, Please, Please, Please, pray for Nicholas and his recovery. UPDATE: Nicholas continued to fall today. The blood bank had a hard time making his blood today because of the extensive work up they have to do to match his changing type. By the time that the blood was ready his IVIG infusion had only started. This needed to be done before the transfusion, but there was not enough time. Nicks blood pressure had dropped to 75/22 and heart was 155 then, we were taken back down to the PICU where we will stay for a while. They had him calm and relaxed in no time and the blood transfusion started. Since the IVIG was not finished they tried to run it with the blood (something that they have not ever done) and it worked. Nicholas did not have any reaction over the 8 hour transfusion but he has basically slept for the better part of 2 days now. This is OK with the very low hematocrit he needs to save his energy. He will probably get another transfusion tomorrow and if in the next 2 days the dteriods do not start to work he will go to surgery to have his spleen removed. This should probably help. The dose of steroids that he was given tonight was 240 something and normally they only give 7 something. The big gun antibiotics and steroids are running trying to get on top of this fast. Time is of the essence here. When I left at 2:30 am Nick and his mom were resting and now it is time for dad to get a couple of hours rest. Please keep Nicholas in your thoughts and prayers.
June 13, 2005 Monday - (Day +193) Outpatient - (Day 150)
WE HAVE NUTRAFILLS = 16,700 WHITE BLOOD CELLS = 18,400 RED BLOOD HEMATOCRIT = 10,000 PLATELET = 147,000
Nicholas woke up this morning with a blood hematocrit of 8,000. This is very low and the doctors are putting a rush on more blood for him. They have told us that they are pulling out the big guns and are increasing his steroids 10 times and the antibiotics will go up also. They hope that this will help to stimulate the production and out weigh the destruction of the red blood cells. The rush is on for the new blood. Thy wanted to take us back down top the PICU, but our favorite nurse Jay wanted us to stay and he would watch over Nicholas for us and do the transfusion himself. If we need to go there we will, but hope not. The big gum meds are in and Nicholas was ready for the blood at 11:00 am this morning. This will take 8 hours to transfuse. Nicholas did very well and slept most of the way through it. His hematocrit came back at 15,000 at Midnight. I think that he just does not feel good and the heavy meds are causing him to sleep. He needs the rest. They will take blood at at 4:00an in the morning to watch the cells and hope that this process slows down. We were also told by the doctors that if this does not slow down that they will remove his spleen and this should definetly help. If it does not he will go back to chemo to kill the a red cells that his body is fighting. Please continue to pray for the health of Nicholas and the blood switch over completes.
June 12, 2005 Sunday - (Day +192) Outpatient - (Day 149)
WE HAVE NUTRAFILLS = 15,500 WHITE BLOOD CELLS = 18,200 RED BLOOD HEMATOCRIT = 19,500 PLATELET = 138,000
Nicholas was able to go back to the 4th floor BMT unit today. He was doing much better in the morning with his blood hematocrit at 19,000. The transfusion did well, but his counts continued to fall all day. He got more jondas as the day went on and more cranky. His blood was still crashing. This is due to the fight of the 2 blood types and his body is trying to change over. The doctors tell us this can be a very long process and they will work as hard as they can to make it work faster. He does not have a fever anymore, but he has developed a urinary infection. He is being given meds for this also. Please pray for Nicholas and for him to stay strong while he is going through this.
June 11, 2005 Saturday - (Day +191) Outpatient - (Day 148)
WE HAVE NUTRAFILLS = 16,500 WHITE BLOOD CELLS = 17,700 RED BLOOD HEMATOCRIT = 10,000 PLATELET = 126,000
Nicholas stayed stable today, but his counts continued to fall. We have been fighting fevers all day and he just feels pretty bad. His red blood cell transfusion was scheduled in a couple of hours, so we were told. All night we were told this until 3:00am on Sunday morning and the blood finally came. Nick started the transfusion and 2 hours later he had a reaction to the blood. He started to throw up and his fever that was under control was now spiked and up very high. The blood had to be stopped and we had to try to get nicholas back under control. He was trying to go into transfusion shock. This was a very bad scene, then none of the machines would work. Our nightmare at this time was staring at us. We were taken down to the PICU. Their equipment was more sensitive and we had a nurse for 12 hours and they did not leave Nicks room. At this time Nicks hematocrit was 10 and he was still in need for blood. Nicholas was given a lot of meds and a lot of steroids. The 8 hour transfusion started again and we were all wondering if he was going to react to this one also, but no he did not and all of the blood made it in. We just relaxed and waited for morning to come and then we were let out to go back to the BMT Unit on Sunday morning.
June 10, 2005 Friday - (Day +190) Outpatient - (Day 147)
Nicholas woke up this morning with a fever of 38.9 and they are on their way down here to ER in Lewiston. From there we will be somewhere after we get him stable. UPDATE: It has been a very rough few days, and we are back down here in Salt lake City. Nicholas had a fever this morning at 4:00am. I was called and mom and Nick were on there way to the hospital in Lewiston. We all arrived at the same time (mon, nick, dad, and grandma) along with his local pediatrician. He was in contact with the doctors in Salt Lake City, and then we were told that nothing could really be done in Lewiston and Life Flight was going to pick us up and transport us back to Salt Lake City. Nicks blood counts were dropping due to the change over from A to B blood. He also had a viral infection that initially caused the fever and then everything else from there. Life Flight was wonderful and we were delivered to Primary Childrens in just a couple of hours. A complete work up was done and we then found out that his hematocrit was at 14,000. The doctors were getting him ready for a blood transfusion at this time. He was being treated for a unknown infection and in the need for red blood. We were told with the AB incompatibility this would be hard to match. They worked on it and we were waiting. Nick was stable with very low red blood cell counts. The rest of his numbers look great. His body is really trying to do its job and the rest of his counts look great.
June 8, 2005 Wednesday - (Day +188) Outpatient - (Day 145)
Nicholas and Mom left the hotel here in Salt Lake City this morning at 8:00am to go to the airport and fly home on Angel Flight. Dad is also leaving Salt Lake City to drive back home to Lewiston Idaho. Nicholas started his new feeds last night and seemed to do well with it. His new hydration also ran and he seemed to do well with it also. He has a doctors appointment next Tuesday in Spokane for a red blood cell count and then again for his normal 2 week check up here is Salt Lake City. Please keep him in your prayers for a safe flight back home, and continued successful recovery.
June 7, 2005 Tuesday - (Day +187) Outpatient - (Day 144)
WE HAVE NUTRAFILLS = WHITE BLOOD CELLS = 4,100 RED BLOOD HEMATOCRIT = 23,700 PLATELET = 172,000
Nicholas had his appointment this morning. His white blood cells, nutrafills, and platelets are doing awesome. His red blood cells are falling. The doctors think that this is due to the fact that his body is trying to change over to the new blood type. He was A- and his donor was b+. This causes a clash while his body is changing over from A to B. Nicks donor was a blood type mismatch so the change over will occur. We have to watch him very carefully and if his red blood cell fall too far they will have to transfuse him until it is complete then his blood count will be normal B+ blood. All of his other counts are great and his platelets are higher than they have ever been. He was taken off his every 2 week IV med and put back on a weekend medication. He takes all of his meds orally so this is OK. He has been on it before and had no problem with it. He has been taken off the TPN also, but now he has a feeding tube and the feeds will run 10 hours a night. He is also on IV hydration at night to keep his magnesium up during this feeding process. He will eventually be taken off the night hydration and magnesium, and will take the magnesium orally. For now we have to make sure that he is getting enough water and vitamins. He will be on the night time feeds until he starts to eat enough food to sustain, and now he is not doing this. The TPN is very hard on your liver, and the gut does not work while you are on TPN, so it was time to start to feed him. The doctors say this is a positive thing and that Nicholas is still doing very well. They said for 6 months out of transplant that he is doing better than most at this stage and we should not worry about the feeds. It has been very upsetting to mom and I, but Nicholas need this to continue to push forward. All in all, the TPN has been replaced with night hydration and the nose tube feeds. This is to keepo the gut working, keep the liver from stressing, and keep nicholas healthy. The doctors have told us that they still do not see any GVH so this is great. Please keep him in your prayers.
June 6, 2005 Monday - (Day +186) Outpatient - (Day 143)
Dad left for Salt Lake City this morning at 5:00am from Lewiston, Idaho. I arrived at 3:00pm to go to McDonalds to get lunch for the all of us. Mom and Nicholas flew in on Angel Flight this afternoon also. Nicholas loves to ride on the planes and come to the hotel here in Salt Lake City. His check up should go good tomorrow because he is still a wild man, and is starting to eat a little better everyday. His eating is still not up to par, but getting better. As his tummy continues to heal I think that he will continue to eat better. Please pray for good numbers tomorrow and for him to continue to eat.
June 5, 2005 Sunday - (Day +185) Outpatient - (Day 142)
June 3, 2005 Friday - (Day +183) Outpatient - (Day 140)
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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