we had a MUCH better night last night, and mama even got a few hours of sleep in there. they are still playing with the sedation meds because when one wears off she starts the fight again. it is possible if she continues that they will give her something to paralyze her so that she can't fight. that little has some spirit in her.
we are here for *a while* whatever that means. i have heard 'at least two weeks' and have just decided to settle in and be okay for now. i have a few pictures of shilo that i'm going to put under this. if you have a hard time seeing littles with tubes and not looking great i wanted to prepare you.
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| so many tubes and cords. |
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| and still that awesome mohawk hair. |
Sweet, little Shilo, my prayers are with you and your family! I hope you get to leave the hospital soon.
ReplyDeleteOh gosh, this breaks my heart. Lots of love and prayers for you guys.
ReplyDeletePoor little. Still sending prayers for a speedy recovery. It's awesome that she's a fighter! Means she's going to fight to get well.
ReplyDeletepraying for you & Shilo! Email me if you want to chat my little Emma is in the same spot.... we are in the picu in Hershey PA.. Emma also has DS... and our T21 little ones just love to eat through sedation!!!!!
ReplyDeleteShantrarogers@gmail.com
My little one who has gtube, is on pulse ox for monitoring, repaired ASD, requires o2 when sleeping and has DS had same symptoms a couple of weeks ago..we too took trip to ER..these things usually mean weeks in hospital..they tested and found she had Hflu-Haemophilus influenzae..only one that is bacterial..cough, throwing up, etc..I am guessing they check for that but just wanted to share..the IV antibiotics helped shorten the stay..praying for you and sweet Shilo..
ReplyDeleteI'm so sorry to hear your little one is struggling. I just wanted to let you know that our son Jake has Down syndrome, and when he was 5 months old he had got pneumonia so bad that he had to be intubated. He too had lots of sedation problems. After about a week of going thru what it sounds like you guys are going thru one of the nurses remembered reading a study about people with Down syndrome not metabolizing the Morphine family of drugs like typical people. They can take elephant doses of it and it will barely touch them. Jake was at Seattle Children's Hospital at the time, we brought it to the attention of the head ICU doctor and they got approval to try a drug that was not approved to be used in pediatrics. It worked perfect. I can't for the life of me think of what it is called, but if I do, I'll let you know. It took us MONTHS to get Jake off of the morphine because they had him on such high dose and it wasn't helping. Hope everything turns around soon for your little one.
ReplyDeletePraying for you and your little one!
ReplyDeleteWhat a sweet little lady. I am praying for your little one and your family, Andrea. Love love love.
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