Sunday, February 14, 2010

Kyler had his line put in tuesday. He had to have a blood transfusion because platelets were low and his blood was "oozy." He did very well though. The doc did an incision instead of using A needle to find the vein like they usually do. He said that actually would cut down on bleeding. They gave him twice the amount of platelets they usually do and he had to have a ton of fluids so he was a very swollen little baby for the first 3 days. He was wonderful though and he did amazing. All of the nurses loved him and how cooperative he was. They said they arent use to babies not crying and Kyler didnt cry during his labs or prep etc and barely cried when he woke up from surgery. As soon as they handed him back to me he fell asleep and didnt cry again. He was amazing even when we got home. He really is a very strong little boy. He has been wonderful through all of this.I love him so much and am so blessed to have him. He did lose his appetite thursday. I couldnt get him to eat anything and could barely get him to take formula. He did eat a few popsicles though and drank some juice. Friday he woke up sneezing and by fri night he had a runny nose and congestion and a cough. Friday night was pretty rough on him because he isnt use to breathing through his mouth and he would get nervous when he couldnt breathe and get choked up and then he would throw up. I felt so sorry for my sweet baby. I sat on the couch and let him lean back against me to sleep until 3am when it finally broke loose a little (with the help of saline spray and suction) and he was able to lay in his bed with his head elevated. He slept until about 6:30am and my sweet husband got up with him and let me sleep a little. Sat he seemed to feel a LITTLE better but still wasnt himself.He couldnt nap well because he still couldnt breathe laying down. I went and bought a humidifier thinking it would help him breathe BIG MISTAKE! It made him a lot worse. I put him in bed at 8pm and turned it on and he woke up at 10 screaming and gasping bc he couldnt breathe. That was the worst he had been and it really scared him. I got him up sprayed and suctioned his nose and laid on the couch with him until 11pm.My husband and I noticed that the cooler he was the better he could breathe so we turned the heat down to about 68 degrees and he started breathing easier so I laid him in his bed around 11:30pm and he slept until 7am this morning. Today he has been doing GREAT!! He has ate a TON and can breathe better and took a 2 hour nap. He didnt cry when we flushed his lines (He's been crying when we do it because he has to lay down for it and it bothered his breathing) and he went to bed no problem tonight. The schedule RIGHT NOW is tomorrow: rest of lab work tues: Kidney tests Wed: CT scan Xrays. Next mon or tues we should be signing consent forms and IF everything goes as planned and all test results come back ok we should be admitted March 1st. We will have 8 days chemo (busulfan, cytoxan and atg) 2 days rest and then transplant on 11th day. I will keep everyone updated. Please keep our sweet baby Kyler in your prayers! Thank you for all of your prayers and thoughts! :)


  1. Hi Jill - Off to such a rough start, buy I'm glad Kyler is feeling better and I hope you are all able to get some rest. Did you guys decide if you are doing the reduced or full chemo? On the WAS Form I posted a comment on a new BMT study for WAS and one of the things they'll look at is full vs. reduced chemo regimes. Different thoughts behind the two approaches, but it will be good to (Finally!) have a study underway to look at outcomes under both regimes. Is it me or is it crazy that they've been doing WAS BMTs for 40 years and the data is so lacking!!??!! Take good care. Keeping you guys close in my thoughts and prayers. Love and kisses to Kyler from Robin & little J.P.

  2. Hi Jill,

    Glad this is over with and that Kyler is feeling better. Good Luck with all the testing this week. it is going to keep you busy. Take good care of yourself too.

    With prayers and best wishes,