Kristy’s Twitter Update – Monday, May 23, 2011, 11:59 AM
WBC <0.2
ANC (Absolute Neutrophil Count) 0
Platelets 49
Papa reading to his Little Buddy while the nurse takes his blood pressure
Papa grawling like a bear
I am finding out why so many people say u have 2 b your child’s advocate. I feel like it is a constant fight We r not #s that is so sad 2 me
about 47 minutes ago
Being an advocate for your child, this link is from another family’s HLH Journey
http://hlh.evanz.org/2010/03/on-being-an-advocate/
ad·vo·cate: one that pleads the cause of another; one that supports or promotes the interests of another
Day+11 his counts r still 0 fever comes and goes. He is getting a blood transfusion today. They r trying to switch him to total parenteral nutrition (TPN) but I say no
about 31 minutes ago
He is still taking a bottle and getting food through his NG tube he is still tolerating it so why change it is much better for healing.
about 29 minutes ago
He will get Methotrexate 2day this will be his last dose I will be so glad when this is all over and he is free of HLH and BMT complications
about 26 minutes ago
May 23, 2011, 4:00 PM
Liam’s preliminary cultures came back they think he has Streptococcus in his blood stream. They had already started him on antibiotics. We have to wait for the final reports.
Kristy Twitter Update – May 23, 2011, 4:12 PM
Liam has a bacterial infection in his blood so he is being treated with antibiotics. I hope the antibiotics clear it up
May 23, 2011, 4:31 PM
They are taking Liam down for another x-ray. They have had a difficult time getting a draw on him. So they want to make sure the Hickman Line is ok. They are thinking it could be positional thing with him.
Comments from Liam’s FB Group – Liam’s Journey – HLH Warrior
Laura Quackenbush Hammer 5:47am May 24
Liam is in my prayers and on my mind always!
Cecelia Ann Blodgette 9:03pm May 23
oh my gosh, that poor little guy. Prayers continue for his recovery and strength to fight all these complications and side effects. Stay strong you guys! love to you all…
Myrna Liddell 9:43pm May 23
Each day our hearts go out to you, and hope for healing soon and pure. Please know our prayers are with you.
HLH Survivors FB Group Comments
Angela ‘Dray’ Gideon 4:26pm May 23
We are getting ready to start BMT so I’m no help. But I will pray!
Sorry
Kelly Claudine Marsh 4:40pm May 23
Unfortunately line infections are common in the BMT world. Hoping the graft will come in quickly to help combat it!
Karen Beavers 3:46am May 24
Day +11 these days are starting to add up now, you have come so far! Im sure it will be such a big relief when Liam has had his last dose of Methotrexate and a big step nearer to a healthy life! I hope his fever stops soon. Deakon had a line infection (not sure if it was Streptococcus) but this was after his transplant before his new bone marrow had grafted and he was put on IV antibiotics and responded well. I hope Liam feels better soon and hopefully you will see some encouraging blood counts in the next few days!!! Kristy you are staying so strong for your gorgeous little boy! If he was not getting enough food etc you would be the first to ask for TPN, you are his mummy and you know him best so keep strong and do what you know is best for him. I think its amazing that Liam is doing so well and is still taking the bottle, hes so clever. Im sure its part of his routine and probably a comfort to him also. I would do the same in your position but it is a decision only you can make. Deakon stopped having his bottle and ‘forgot’ how to suck, it was so hard to get him onto baby food and back onto a bottle and cup. If Liam does end up on TPN you will cope though. Sending you all lots of love, thinking of you and Liam as always, you are slowly getting there now day by day xxxx
Angela ‘Dray’ Gideon 8:05am May 24
Same thing happened to Nevaeh when she was put on TPN as a baby (one month old). But she learned to suck again quickly and eventualy ate solid foods (a bit later than most kids).