Tuesday, March 30, 2010

Day +19 Another High ANC

Kyler's ANC is 673 so that means two more days with the same counts and he will be considered Neutrophil engrafted! YAY! We are super excited! He still needs more WBC'S and platelets but they said it looks like he is even holding on to his platelets more so than before which is great! Everything seems to be going good. He is only on half the dose of morphine that he was on and his body is sore from the engrafting and the GCSF whch aids in engraftment and make their bones hurt so when he starts aching he gets a little ill but everything else seems to be going great!! He was up happy and playing for 8 and a half hours today before he was ready for a nap. He is definately feeling like himself again :) Other than that things are staying the same. Please keep him in your prayers!!

Monday, March 29, 2010

Day +18 GREAT day!

I havent updated in a while because things have been going good and have stayed the same the last few days. He hasnt had fever since last wednesday(which was the day they had predicted that his lungs would be so bad he would be in the ICU ) (Day +13) and hasnt had oxygen since last thursday (Day +14). They are cutting down on his meds especially his antibiotics and his morphine. He seems to be doing MUCH better! He has been waking up and playing and laughing and seems to feel a little more like himself again. It's SOSO great to see him like this again :) So, some POSSIBLE good news is that: for the last few days his WBC's and ANC has been on the rise. Well today his ANC is above 500 so if it stays that way for 3 days then today will be the official day of engraftment. I am super excited BUT I realize that in a matter of hours everything could change for better or even for worse. A few things we have got to work on now is getting his temporary line taken out and either a CVL or port put back in. They will decide which one based on rather or not it looks like he will be going home with TPN. With that said, we also have to start trying to get him to eat on his own again. A few things I am going to change, though, is that since he should be coming off of the bottle when he is 1 (WHICH BTW HE WILL BE IN EXACTLY 18 DAYS AT 4:38pm) I am going to start out with a sippy cup instead of a bottle. When he feels like it we also plan on trying to start practicing walking with him since he obviously has no use and/ or desire to crawl. I probably wont put him back in a walker since it seemed to make him want to walk on his tip toes even when he wasnt in it. A few other medical things that need to happen if he has actually engrafted is that in the next few weeks he will be switching from IV meds to oral meds (That part is going to be a little tricky.) So far everything SEEMS to be going great though! We are soso happy! :) He has kept us laughing the last few days when he is awake. He still sleeps a pretty good bit but he is having periods of time when he is awake and playful and happy. He's also still pretty nauseated..but that could be a mixture of things and should get better with time. I am SO proud of Coty and My little boy! I have been every day for the last 11 months and 19 days :) I have said this many many times BUT he is my little hero!! He amazes me every day! Thank you so much for all of your prayers! I know God has been watching over Ky and has taken care of him since day 1. Please keep praying for him! :)

Wednesday, March 24, 2010

Day+13 Another Great Day!

Today was great. Kyler didnt run a fever at all today. He woke up 3 times to play instead of his usual once a day play time. He made us and all of the nurses laugh several times especially when he was trying to show them how to use the medical instruments and how to listen to his lungs. He grabbed the end of the stethoscope and stuck it to his belly for the nurse. It was HILARIOUS!! We all cracked up. He even felt good enough today to get an attitude and throw a camera because he wanted the cell phone instead. I must admit I was THRILLED that he had that energy again. LOL :) He was back to himself for a little bit today being goofy and making funny faces (esp his piggy face.) As far as his medical status everything is pretty much the same. His WBC's are up to 360 or .36, however you want to look at it. His lungs are still in bad shape. We took the oxygen off today just to see what he could do on his own since his lungs SOUNDED better but as soon as the cannula came off he went from 100% oxygen to 90% in less than a minute. That let us know that he definately still needs the help of the oxygen. Atleast for right now it is just the cannula he needs though. He was nauseated today but today is the first day he hasnt thrown up blood at all. Not even once :) He did have to have platelets because they were 19K and 20K is his parameters. His rashes seem to be getting better also. Hopefully all of these things are signs that we are headed towards better days:) We know that his lungs are going to get worse before they get better but hopefully not too much worse. Thank you for all of your thoughts prayers and cards. Please keep praying for him!

Tuesday, March 23, 2010

Day +12 Finally good News ! :)

They decided NOT to do surgery tomorrow which was GREAT news. I was kind of concerned about Ky pretty much going through 4 surgeries all at one time. They decided it would be worse on him to do the biopsy and so they decided to wait to back in the CVL until next week when maybe his counts will be higher. They are going to treat the infection for both fungas and bacteria and they are going to watch it. Here is the POSSIBLE best part but it is JUST a maybe. Kylers counts are coming up and a lot of the things happening to him can happen before the new bone marrow gets ready to engraft. So, what does that mean? It means that POSSIBLY everything that is happening to Ky that they think is related to the infection, could just be signs that engraftment is around the corner. We are praying that that is the case. However, with that said..He still has some rough patches to come. His lungs are definately going to get worse before they get better. As his body begins to build back up neutrophils and WBC's they are all going to go straight to his lungs since they are a source of infection. WBC's job is to kill infection so that is what they will be trying to do. With everything gathering in his lungs it will make it hard for him to breathe and get enough oxygen without a little help. Today he was put back on the nasal cannula and will more than likely be kept on it until his lungs are completely clear. The doctors think that his lungs problems will be acute but they said it could go so far as to need a ventilator. Hopefully not but we will do whatever is best or easiest for Ky. This option is MUCH better than surgery at this point and time. We were so glad to get some good news and some possible even better news :)
As far as how he is feeling..Today was actually a good day. Last night was GREAT after a fairly rough day yesterday. This morning he woke up nauseated and stayed sick for longer than he usually does. He went back to bed around 9am and slept until 2pm when he woke up wanting to play. I brought him down to the cot with me and we read books and played with his play table and even some medical supplies :) (of course it was none that could hurt him). He played until around 4pm when he started getting tired again and he slept until we gave him a bath and then he went back to sleep. He hasnt only spiked a fever twice today but it hasnt gotten out of the 101's which is GREAT compared to recent temps he has had. He has only had Tylenol once today compared to the every four hour dose he has had to have in the previous days. He seems to be feeling somewhat better but he still gets tired very easy so sometimes he overdoes it. I am just so glad that he feels like getting up some. The next few days could and probably will get worse so I am glad he has had some good days in between the bad. He is holding a little more fluid and is more swollen today but he is still the most precious baby :) I have been taking tons of pics that hopefully I will be able to post at some point. Thank you to everyone for your thoughts and prayers! please keep him in your prayers :)

Monday, March 22, 2010

Day +11

Today Kyler had Ct scans to see why he is still having fevers and ultrasounds for his liver. His live, head, pelvic area and abdomen came back great. However, He does have a lung infection that is either fungal or bacterial (which would be from the Staph) He will more than likely be having his lumen hickman (CVL or "central" line) put back in wednesday and the triple lumen removed so while he is under for that then they will do either a lung wash or a biopsy on the lungs to see exactly what kind of infection it is. Today he was taken off of blow by oxygen and put on a nasal cannula so that they know he is getting all of the oxygen. Once they find out exactly what is causing the infection they will be able to treat it better. In the meantime, though, they did go ahead and start him on an anti-fungal medication to start treating it since they are pretty sure that it is more fungal. Everything else is still the same. His WBC's are fluctuating from day to day and he had to have platelets today because they were down to 11K. His neutrophils are comig up some. They still arent high enough to actually "count" in terms of numberrs but they can be seen in the cultures which is great. His mucositis is at its worst but this is probably the worst it will get. Hopefully in a few weeks we will see engraftment. On a side note: Today he had his CT scan which children are sometimes/ usually sedated for because of the burning sensation that the contrast gives them. Well because of Kylers heart rate/ oxygen levels and pulse they didnt want to sedate him so he was wide awake. He did AMAZING!!! They let me stay in there with him and I held his hand and sang to him and talked to him and he only got upset once because they told me to hold his head and not let him move it and he couldnt see me but once I started talking again he was fine again. He is SUCH a strong little boy! They were all kind of surprised at how well he did with being still and the contrast not burning. He is a tough little boy! I know God and everyones prayers are helping him through this. Its helping all of us through this. Thank you all for your prayers! They really mean a lot! OH I got to love on him a LOT today which was GREAT! Yesterday he stayed in bed and slept all day and was only up maybe 45 minutes total but today he was wide awake after the CT scan and he wanted me to hold him the whole time so I got lots and lots of love and hugs! TOO SWEET!!! I love him SOSO much! :)

Saturday, March 20, 2010

Day +9

Kylers cultures for the Staph are looking much better today. They havent shown any growth yet, but they still could. They will watch them for 3-4 days before the technically say that Kyler is Staph-free. He has had his ups and downs today. He started out with a bad morning. He was very nauseated and in pain so they gave him meds for both. He slept until around 1pm and then he woke up and played and He and I read a book and he "Held mommy" as I say when he wants me to hold him :) I always say "Do you want to hold mommy" and he will reach for me if he wants me to hold him. It is soo sweet! He was so cuddly today which was great. I am so glad that he doesnt seem to be as sore. He laughed and played for a little over and hour and then the exhaustion set in again and he slept until 7pm when we had to wake him up to sponge bathe him (he cant have a real bath until the triple lumen cath is removed.) After his bath he got nauseated again so he was given more meds and he went back to bed. It was funny because today they showed us how to use the suction nozzle beside his bed to suction his nose and mouth and they thought he would be scared of it but I got it and I said "Can mommy clean your nose and mouth" and he would open his mouth and then close it on the suction and then he would lift his face so I could get to his nose and everytime he would let me do it I would tell him what A good boy he was and he would start laughing. He kept wanting to do it because I kept making such a big deal over how good and what a big boy he was. TOO CUTE! Overall, his fever has been BETTER but definately hasnt gone away. He has only had to have tylenol twice today, so that was good. Well, his machine is beeping and his lasix is probably kicking in so I am going to have to cut my update short. Main point is : He is doing better :-) Please keep him in your prayers!

Thursday, March 18, 2010

Update on Line Replacement

Ok, so they decided not to do PICC lines but to insert a triple Lumen Catheter into his groin. They removed the Lumen Hickman and inserted the triple lumen. He was sedated the whole time. The Triple Lumen can be removed much easier than the Lumen Hickman so as soon as the staph had cleared up they will remove the triple lumen and put a lumen hickman back in. They are keeping him on the Vanc and they are going to do x-rays to make sure the Staph hasnt spread anywhere else and also to make sure the triple lumen was put in place correctly before they start trying to use it. He has pain meds going into it right now and it seems to be working and they said so far everything looks great. I'm praying they are right and that our baby is staph free soon and everything can go back like it was with the regular line and I am also praying that the staph doesnt come back at a later time and doesnt continue to be a problem.
Kyler is sore because the catheter is in his groin right where he bends his leg. The main problem with where it has to be placed is that it CAN get infected when he pottys IF it gets up under the dressing so we will be being EXTREMELY cautious to keep that from happening. Praying that it doesnt, atleast until he is staph free and can get the other back. They are saying that it more than likely WILL become infected but that as I said before hopefully it wont be until Staph is gone and the Lumen Hickman can be put back in. I will update when we find out more. Please keep him in your prayers and thank you all for your continued prayers and thoughts.

Day +7

Well, today and yesterdays cultures came back with news we didnt want to hear. Kyler has a staph (MRSA) infection in his Lumen Hickman (central) line and it is now in his blood. The best treatment is to remove the line and put in a temporary PICC line until the staph is cleared up with the antibiotic (Vancomycin) and he has a few more WBC's and then we can have another lumen hickman put into place. His WBC's came up a little yesterday but are back down today. That is expected though. The first few weeks their counts can go back and forth. Yesterday and last night were really good fow him as far as how he felt. Yesterday afternoon he raised up on his own and climbed into my lap and I read a book to him. Last night, after his bath, he was sitting on the side of his crib playing with Coty and me and talking and laughing and he even got to squirt saline out of a syringe (which he thought was the greatest thing.) We were so excited that he seemed to feel better BUT we knew that they have their "Up's and Down's" until they actually engraft. Well yesterday was definately an "Up" so today he is having a "Down." He is nauseated again today and seems to be hurting more again. He has been resting most of the morning. We are just waiting to find out what time today he will have the central line removed/ PICC line placed. Please keep him in your prayers! He is such an amazing strong little boy and has already been through so much in just the 1st year of his life. I love him so so much and I am so blessed to have him. I will update sometime after the line placement (depending on how Ky feels)

Tuesday, March 16, 2010

Day +5

Kylers nausea is MUCH better! He hasnt had to have hardly any meds for his nausea today.His diarrhea has also been much better. He has also been awake a little more. He woke up and talked to me for about 5 minutes then he laid his head on me so we cuddled up on the cot and took a 2 hour nap together. It was too sweet! I love him so! He hasnt seemed to be in as much pain but he did have a pretty rough time with a fever last night and it has persisted today. They told us last night that his culture came back positive so he is on another (very strong) antibiotic. So, special prayers..That it clears up easily. So far everything else is good. His heart rate is a little high due to the fever and his blood pressure has been high a few times but nothing to worry about on either one of those yet. He is pretty swollen from all of the fluids but I must say he is still the most beautiful baby I have ever seen. He is starting to lose his hair at a faster rate so we got some to keep and put in his baby book. He has had meds added and DC'ed and still has his PRN meds. He's doing so good and as I have said so many many times...he is my little hero. He is such an amazing little boy and I am the one who is so blessed to be his mommy :) OH, extra note..I tried to post pictures but the internet here wont let me SO, there probably wont be pics until I can use another internet source. Thank you for all your cotinued prayers.

Sunday, March 14, 2010

Day +3

Kyler is still very nauseated. Now it is because of the mucositis that has set in instead of the chemo though. They are still keeping him comfy with pain meds and switching between benadryl and ativan for nausea. He has been sleeping a lot the last few days which is good though because we would rather him be resting that be awake and in pain. When he does wake up he does manage to give us a few small smiles. I am so proud of him and how strong he has been. he has had a fever today (after 2 days of not having one) so they did some cultures just to make sure he doesnt have an infection. They think that the fever is mainly because of his pain/ nausea. He had to have a blood transfusion and platelets today because his parameters were a little low, and he's on lasix now because his I's and O's arent equaling out. Other than that not much has changed. Hopefully he will start feeling better in a couple of weeks. I am going to post some picture on here that I have been meaning to post for a week now. Some are pre-BMT some are during BMT and some are after. Please keep him in your prayers.

Friday, March 12, 2010

Day +1

Last night Kyler woke up throwing up three times but as soon as I would clean him up and pick him up to rock him he would fall right back to sleep. He was given benadryl but it didnt help for to long. This morning he slept on me from 6 until about 7:30am when he woke up nauseated and threw up again. They gave him ativan at that point which helped a lot. It always relaxes him and he will play and laugh after he gets it. He has had some diarrhea from the chemo but we are keeping him covered in cream so that his bottom wont become raw. So far his mouth looks good (No sores) but we cant see into his throat and stomach to see if they are there but right now he doesnt seem to feel to bad. This is the "honey moon" Phase as the doctors refer to it so we know that eventually (in a few days) he will be a lot more nauseated and in more pain. The doctors have meds ready though to keep him as comfortable as they can. He started his anti-fungal med today and his cellcept yesterday. So far he's doing good. His heart rate has been a LITTLE high (not dangerously) but more than likely it is only because he is nauseated and in some pain. After they give him the ativan it usually goes down to normal. So far today he hasnt a fever which is good and both of his cultures came back negative for infections. I will update soon. Please Keep him in your prayers. I will post some picture soon! I have LOTS! He still likes to pose for the camera. TOOO Cute! I love him so!

Thursday, March 11, 2010

Day -1 and the Big Day..Day 0

Day -1 was kind of rough. Kyler was in some pain and had a temp of 102.5 (at the highest) and his heart rate was a little high. We gave him some meds and he slept on me the majority of the day. His ATG finished up at 8pm that night and he did great that night and by this morning (Day 0) he was doing much better. He had to have a little more pain meds but then he felt great. BMT was at 12pm. He did really well. He got sick (as expected) but after he vomitted he felt better and went to sleep. He is now laying in his bed playing with the oxygen tube (which they just put in his bed for a little extra oxygen) He doesnt have a mask or anything so hes free to play with the tube. So far his fever has stayed down and his blood pressure and heart rate are much better. I know its going to get worse before it gets better but he is such a strong little guy. I lovehim so! Please keep him in your prayers.

Tuesday, March 9, 2010

Day -3

This day(Monday March 8th 2010) Day-3 was Ky's 1st day of ATG. He did great during the first 6 hours but during the last 2 he broke out into a rash and had a fever by 12am. Today they are giving him benadryl around the clock during his ATG treatment to help keep that from happening. Hopefully it will go better. He is losing his apetite even more now and is more nauseated. He still manages to laugh and play though. Such a strong, amazing little boy. I love him so. Everything else is doing good so far though. Just hoping it continues.Please keep him in your prayers.

Monday, March 8, 2010

Days -4 and -3

So far so good. Kyler has been more nauseated thus getting sick more and eating less but he is still doing really well. His urine needs to be a little bit more diluted but nothing to worry about. We started ATG today which I was nervous about bc of the side effects it can cause during infusion but so far he is doing good with it. Other than that not much is going on. He did have ativan for the first time last night and was soo goofy! It was kind of funny, but he felt a lot better. His crawling skills are improving. He rlly want to just stand up and walk so we are getting him a table to pull up on and play on. Maybe he'll be walking soon :) just 3 more days till the big day. Please keep him in your prayers.

Saturday, March 6, 2010

Day -5

So, we had a "Bump in the road" today. Kylers CVL (Lumen Hickman line) "migrated" out of place and had to be replaced. I was so nervous but he did amazing! Even better than the first time. There was less bleeding this time and this doc did it w/o cutting Kylers neck. I was very happy about that. He got behind 2 treatments on busulfan but we finished up this morning and will start Cytoxin later today. His eczema is kind of bad on his legs but that has a lot to do with how dry the air is here bc of the air system that keep germs from coming in the room from other rooms. He is still nauseated every night but he is handling it so well to be so little. He plays up until he throws up and then goes back to playing. He is just so sweet and I cant believe how strong he is. I know this may sound crazy but Kyler is my little "hero". he has gone through things and handle them so well and if it was me I would be crying every time. He got and IV yest without numbing medicine and didnt even make a sound. I think he handled yesterday better than me. I wanted to cry when they told me he had to have surgery again and I guess he could tell I was getting upset bc he was sitting in his crib and I was beside him and he wrapped his sweet little arms around me and sqeezed me so tight :) After his sugery he saw me walk up and was practically jumping out of the nurses arms to get to me and his daddy. I know this is off topic but he brings out strength and love and feelings in me that I didnt even know I had. I am so blessed that God gave him to me.
Okay back on topic. Ky now has 4 teeth and working on 2 more. His smile is oh so cute! :) Medical wise, he will be coming off of dilantin 24hrs after he finishes busulfan he will start mesna with Cytoxin to bind to the Cytoxin so that it will help keep the cytoxin but cutting or tearing his bladder. He will stay on acyclovir, zofran, zantac,aquaphor for his eczema and benadryl as needed. He is still doing great with his mouth care, but the nystatin tends to make him sick. He will be able to stop it though after BMT when he starts his fluconazole. So far everything is going good. I will update soon. Please keep him in your prayers! Thank you to all of you who have been thinking about and praying for him.

Thursday, March 4, 2010


So far Kyler has done really well. He started getting nauseated from the chemo night before last (tues night) and has thrown up 3 times. He seems to feel good though. He plays and laughs and has actually done a few things since we've been here that he didnt do before. He pulls up onto his knees in his bed and has almost pulled up onto his feet once. He now says "Yeah" which has become his new answer to everything instead of "No-no" like it was LOL :) He is able to play on the floor without his helmet here so his mobile skills are getting much better. They came and scored him and he scored 10 months on mobility and 12months on verbal and understanding. The nurses all love him and he does so good with things that they said most kids fight against like: Vitals,mouth care, and drinking the nystatin. He had a bad night the first night but only bc he wasnt use to having fluids flowing through his line and he didnt like the taste or feel of it. Since then he has done great with it. He sits in his bed and plays during the 2 hours of chemo and doesnt fuss. Its like he understands when I tell him he needs to sit there and play so that the monitor will pick up his heart rate and oxygen levels good. I am so proud of him. I love him so much.
Now some medical things. Tomorrow is his last day of busulfan and then we will start cytoxin then ATG. He is currently on acyclovir to help prevent viruses, dilantin for seizures, zantac for reflux, zofran for nausea and benadryl as needed for nausea. His counts are as expected. I will try to update next week or so. Please keep him in your prayers.

Wednesday, March 3, 2010

Day -7

I typed 2 paragraphs worth of info but it deleted it. I will retype later! hes doing great so far though :)