Thursday, April 22, 2010

Day +42

WOW! cant believe we have been here almost two months. Hopefully we will be home soon. We know FOR SURE that we will be here ATLEAST 14 more days. Possibly more. Kyler is having a procedure tomorrow to see what it going on with his sinuses. They are going to do an endoscopy on them and culture them and maybe even biopsy some of the tissue that they found on the CT Scan. They now have him on TPN for 12 hours a day (From 6am till 6pm) since he is eating some on his own. This morning his blood sugar dropped a little low and I heard him making a funny sounding whine around 6am so I got up and picked him up and he was sweating, and very limp and wouldnt sit up on his own so I paged the nurse but in the meantime I put his O2 monitor on, checked his BP, temp, respirations and heartrate. His BP and temp were low and he was freezing even though he was sweating. I told the nurse everything when she got in there and asked her to check his blood sugar levels and page the doctor. We ended up giving him some orange juice and 20 minutes later he was up laughing. The rest of the day has been GREAT!! He has been walking around playing and has eaten a little bit and we have played basketball (with his new b/ball set he got for his bday :) ) and he even got to walk about 2 inches out of the room and talk to everyone LOL. Healthwise everything is still pretty much the same. He is on a TON of allergy/ sinus meds and antibitiocs for his sinuses. Luckily his VRP was negative so he doesnt have a virus. His leg is doing much better. They pulled the drain monday and it is healing very well. He is doing so great so maybe tomorrow we will find out what is going on with his sinuses and we can get that fixed and start working on getting home. Im so proud of Coty and My little boy! Coty has taught him some VERY funny faces lately and I have taught him to blow kisses and do this super cute thing with his teddy bear where I tell him not to give Pooh Bear all of mommys love and he hugs him super tight! Its SO cute! But hes so cute LOL :) Well he is napping on my cot and im thinking I might cuddle up and nap with him since we had a long night. :) Please keep him in your prayers!

Saturday, April 17, 2010

Day +37

Quick update (and thats bc Im running off of 2 hours of sleep LOL )
Okay, so SO far Kylers VRP is negative. STill have 2 days before final results though. He is on more meds for sinuses and is on an antibiotic which should fix sinuses and his infection. Speaking of which last wed when they did surgery on his leg they found that is was a MRSA infection. It was an abscess that was infected. That same morning he had the endoscopy done (hope I spelled that correctly)..All they found was gastritis which the majority of post BMT patients have. SO with that said the best treatment is a medicine to coat his throat and belly and making him eat, and yes it has definately been a "making him" situation. I will say though that he has done WONDERFUL! Particularly today. He has already eaten almost a jar of baby food (which is HUGE for him) and hasnt thrown it up (which is even MORE huge). He has drank a little water and has kept his oral meds down. Yesterday was the first day we forced him to eat and it was a little rough. He kept it down for an hour then vomited it ALL back up. Then he was up all night (except 2 hours between 4-6am) crying with tummy pains. The thing that helped most was letting him lay flat on me, so He and I stayed up and watched cartoons all night. :) Today has been GREAT though!he also attempted to crawl today (which is good bc he HATES crawling) and he was doing really well but then he fell and pulled his CVL a little and got upset and refused to try again. I probably would too though LOL :) He has been asleep now for 2 and 1/2 hours so Im really glad he is catching up on some sleep. The biggest thing keeping us here is his infection and nutrition issues. Hopefully we can get those fixed soon
He had a GREAT birthday. I went and got him cupcakes and his daddy an ice cream cake. They both LOVED their presents which made me SUPER happy! :) He was doing so great that day with the nausea that I was able to dress him up in a blue striped polo and khaki shorts TOO CUTE!! (But I think he is too cute even in his yellow hospital gown :) ) They did a study that day and found that he is 100% engrafted. YAY!! That was GREAT news:)
Well, the update actually ended up being a little longer than I intended but he is so much fun to talk/ write about I always end up talking a lot :) That is the majority of the new info though. I will update when we know something new. Please keep him in your prayers and thanks to everyone for Ky and Coty's Birthday wishes! :)

Thursday, April 15, 2010

Birthday Wishes!

Kyler- Happy 1st Birthday!! The last year has been the most amazing year of my life. I am so blessed to be your mommy. You have made me complete and changed me in so many amazing ways. I could never put into words how much I love you and how important you are to me! God new the huge impact we would have on each others life and I am so thankful every day that you are my little boy! You are so strong and amazing! You make me proud every day- actually every minute :)I am so excited about all of the years I have to watch you grow up!! You could slow down a little bit though :) Youre already growing up so fast! I have no doubt you will be amazing for the rest of your life!You have a place in my heart that is forever yours! As the quote goes "Children fill a place in your heart that you never knew you had" You definately have! God has big plans for you little boy and so does Mommy and Daddy so you keep on fighting and being strong for us! We Both love you so much! Not a minute goes by that you dont make us laugh or smile or make my heart happy! I LOVE YOU!!!
Coty- I fell inlove with you when I was 15 and barely new what "Love" was. It never went away and Im glad it didnt. It only got stronger. You make my life complete in so many ways. I know weve had our ups and downs through the years and broken a lot of hearts (esp each others) but we made it through and I feel like we are right where we should be! We made a beautiful baby together and now we have our own perfect little family! I look forward to many years together watching our Children (yes plural..there will be more ;) ) grow up! Weve come so far and changed so much from the 15 and 16 year old who use to fight over who loved who more...Oh wait we still do that :) Weve always came back to each other no matter who or what got in the way, and I think that was God's plan. He knew we were meant for each other and nothing can change that! I LOVE YOU...MORE :)

Sunday, April 11, 2010

Day + 31 and Day +32

So far Kyler is doing good. They took him of of GCSF so of course his counts dropped but they are working their way back up on their on. His platelets are starting to hold a little better and so his his HGB. The biggest issue now is the nausea/vomiting. The doctor has decided that he is going to scope him this week so we can find out what is going on so we can hopefully start treatment, get him back on oral meds (they were oral then had to go back on I.V) and then hopefully get home so that the Three of us can have our family time together at home :) I am so ready to take him outside to play etc (which it will be a while before he can go anywhere.) I was strict before his transplant when he had some immune system. Now that he has very little immune system Im going to be super strict :) The doctors said to expect it to atleast be 6 months or so before he starts being able to go places, around crowds etc. Thats ok though. Mommy and daddy can find plenty of ways to make home fun for him :) I think he will be so thrilled to have the whole house to play in instead of one room that he wont even notice that he isnt getting to leave for a while :) This week they are going to do a test to see how many donor vs his cells are in his body since it is taking longer for everything to come up on its own. They dont expect there to be any issues with that though. As far as everything else goes, he is off antibiotics, almost off pain meds, and is only on his important meds. (Anti GVHD anti fungal anti virul) and his stomach meds (which there are quite a few of those)
Now fun information. I finally taught him how to blow kisses :) He can now stand up by himself (well holding on to something) for a few minute before he starts losing his balance and today he walked from side to side of the cot holding on to it. Super cute!! He can say "Night night" even though he very rarely actually goes to sleep after saying it LOL :) He is getting SO big!!! I cant believe my precious baby will be 1 year old thursday (The 15th). This year has flown by. It has been the best year of Coty and MY life :) OH and the other day his doctor came in (who he loves) and I kept saying "theres Dr. G" and Ky started saying doc doc doc when he was leaving :) There has been a LOT happen but I havent had time to update in a while and its too much to type :) I included the basics though:) Well, Ky was asleep but then they gave him ativan and now he has his happy going and is calling for mommy so I better go! Ill update when I have a chance. :)
Okay, Well I typed the above part yesterday and forgot to post it, so I just added todays to it :). Today Kyler had an NG tube put in. They are hoping his stomach just needs to be stimulated since it hasnt been used in a while. If this doesnt work then they will do the Scope.He did GREAT with the Tube. I played with him and they cuaght him off guard and just put it in. He didnt cry or anything, Just sneezed a lot and as expected he vomited quite a bit afterwards. I was so proud of him though. They were shocked at how good he did. I joked and told them they should be use to how good he is by now. We make a good team...I keep him distracted and he lets them do pretty much whatever they want as long as I stay with him. :) If the scope doesnt show anything they will have to do a more permanant tube. His counts are still coming up. OH And I realized I forgot to mention that his lungs were all clear on the CT scan YAY!!! That was a HUGE deal I just didnt realize I hadnt updated since then. Ive been busy playing with my little boy :) Other than that nothing is different today from yesterday. Please Keep Him In Your Prayers :)

Monday, April 5, 2010

Day +25

Kyler had his CT scan this morning. Now we are just waiting on results. Hopefully they will all show clear. His WBC's have slowed down increasing but everything is still going good. His blood pressure is a little high but thats not surprising considering some of the meds he is on. He has some blisters on his leg from where they had to put pressure tape where the femoral line came out SO now we are trying to get that cleared up. They have contacted the burn unit so they will probably be coming to look at him. Other than that everything is the same from the medical aspect.
From the "learning" aspect Kyler is loving his new sippy cup which is GREAT!! This morning he drank a WHOLE cup of water. I was SUPER excited. That puts us one step closer to eating thus coming off TPN and getting on oral meds Thus going home :) He had a lot of fun getting out of the room today to go down to CT. It was so cute. He is standing better and learning to transition from sitting to standing back to sitting. I am so proud of him.
He had a fun Easter. He had an Easter basket and a bunny and books and a new leap frog cell phone. He was a little tired and ill yesterday but he did seem to have fun. Esp with the paper from the Easter basket :)
Hopefully we will know more about the CT later and tomorrow we will have the upper GI and know more about the nausea and vomiting. Things are overall looking good. Weve had two good nights of rest so thats a plus since he is usually very tired during the day after vomiting all night. He is still super sweet as always and gives us lots of love and hugs :)
I will try to update when we know more about the scans.

Saturday, April 3, 2010

Day +23

Kyler has rested a lot today. Yesterday (Day+22) he had his CVL put back in and his femoral line removed. We had a few issues last night with the line that was removed. The area didnt want to clot and continued to bleed. He ended up getting 3 platelet transfusions. It ended up not being anything to worry about but it concerned us none the less. I actually helped hold pressure on it during one of the moments when it decided to start squirting blood.By this afternoon, however, it has quit bleeding but the pressure tape had left blisters so now we are treating those. He did so good during the dressing change. He just laid there and held my hand and played with me. Hes so strong :)
The line itself seems to be good. They x-rayed it to make sure it was in a good place. They had to go a little higher with it and tunnel it a little differently because there was a little blockage in the right side of the vein. They said he did GREAT during surgery. Last night his temp got back up to 100.1 so just to be safe they started him back on another antibiotic (hes still on vanco also) and they did cultured just to be sure it isnt another infection. He was up nauseated most of the night but he has rested very well today and at this moment is playing and making us laugh. They gave him ativan a little while ago and that is his happy med so he is doing pretty good right now :)
As far as the nausea goes: The GI doc came by today and checked him out and said trhat tomorrow she and the attending GI doc will come by and more than likely they will do the scope on him next week (Go down into his stomach with a camera). They doc mentioned that there is a POSSIBILITY of GVHD of the gut BUT all of the lab work suggests that he doesnt have GVHD. We will know more after they explore his tummy. Hopefully it will be something simple to fix. In order to get to go home he has to quit throwing up and be able to take meds and hopefully food by mouth. He was able to keep water down today but he threw the pediasure back up again. He is doing much better with a sippy cup than he was 2 days ago though.
His WBC's are lower than they were yesterday but nothing to worry about. Things are still looking good. He is super sweet as always. He got out of bed once today to sit in my lap (in a chair right beside his crib) and read a Dr. Seuss book. I have come to really like them LOL :) He woke up a couple of times today and kept us laughing EVERY time. He always does. :) I will probably update when we know more about the possible infection and GI issues. We will have some scans monday so hopefully we will know more by then. Please Keep Him In Your Prayers :)
Sumathi- Just wanted to say thank you for all of your comments :) I have been meaning to email you BUT I get so busy and I dont usually even have time to do this until Ky goes to bed. When hes sleeping Im cleaning and when hes up Im racking up all of the play/ cuddle time I can get :) I hope everything is going great with you all!! TTYS! :)

Thursday, April 1, 2010

Day +21 We have Neutrophil Engraftment YAY! :)

One of the big days is finally here. Kyler is considered engrafted (from the neutrophil perspective) He is doing so good :) He had a much better night last night. They started another med to help take him off of the morphine and it seems to be working. Now we are trying to find out what is causing the nausea so they are playing around with the meds (increasing/decreasing/"dc-ing" etc) If we dont find out something that way they will take more measures to find out why he is still vomiting. The other news for today is that he has to have surgery tomorrow. They are going to put his CVL back in and take out the temporary line that he has had. So please say a special prayer that the surgery goes great and that hopefully this is our last surgery for lines (That is until it comes out for good :) ) They did an ultrasound to find the best place to put the line to try to avoid any further problems. STill no fever and he's still doing great oxygen wise. Next monday he will have another CT-scan to see if he still has the lung infection and those results will decide where we go from there as far as antibiotics etc. Hopefully it is all gone:)
Some fun news: He and I have been working on his standing/ walking/ pulling up etc. Well today he decided to pull up on the side of the cot by himself. YAY! Go MY Sweet baby :) He has kept everyone laughing the last few days. He is so goofy! Also now he not only know how to say "Bye" but he knows when to use it and it makes him so proud! Makes us proud too :) Everytime someone leaves (and even when hes ready for them to leave) he waves and says "Bye" He took out the second bye LOL :) He decided today that he was going to give me a TON of kisses on my cheek which was super super sweet! He's my sweet baby :) He's not a mommys baby at all ;) lol Coty has taught him the "rain dance" and he has it down pat now so I have video taped him doing it. TOO CUTE! He took a few sips of pediasure today and the even better news is he kept it down. Things are going good!
BEE- To answer your question- It looks like we will be here another 3-4 weeks or so but Ky's counts arent as high as Max's BTW CONGRATS YOU GUYS!!!! SOOOO Happy for you :) Lots of love for you guys! But, we also still have the issue of Kyler nausea and he needs to be able to take some oral meds before we go home. As you probably already know he can go home on TPN but some meds pretty much have to be oral. So I think we will be here a little while longer. What about you guys?? Any talk of going home yet??
Well, I better go I think my sweet baby is waking up from his nap and we have a Dr Seuss book calling our names so I am going to get everything ready to read to him. Please keep him in your prayers:)