Mother of a Toddler and Triplets Plus ONE: No tranfer in sight :-(

Friday, October 16, 2009

No tranfer in sight :-(

So Jack talked to Dr. Brown this morning. She told him that Logan could not be transferred because LRMC does not have Vapotherms and he would have to be under 4 liters of O2. I tried to call back so I could ask her questions and of course I got the she will call you back thing and she never called back before she left. Barbra was his nurse today. I hate it when he gets nurses he has never had or hasn't had for weeks. It is amazing when his regular nurse works for 4 days he does great and they ween his oxygen and he does not require pain medication. Why they hell he still has pain medication ordered I do not know. I wish they would take it away so the freaking nurses would stop giving him shit he does not need. They stopped weening the methadone he should not be on anyway for now. The nurse today turned his oxygen up from 60 to 75 and gave him Tylenol with codeine which he has not had in 3 days. He is at 68% now on 8 liters So I called the manager Ann Diez today and bitched her out and got the I will look into why he does not have primary nurses and why to doctors do not call you back. Hopefully if I get some form of sleep tonight and after Jack has had a few hours I will be able to go up there in the AM. Anyone that wants to watch my kids while I see Logan on the days Jack works and the days he does not work so he can go to would be greatly appreciated (I love you Jill!) since there is no end in sight for him coming home or being transferred. Just tell me you want to come over I suck at asking people I feel bad. Why is my 2 year old up at 12:44am showing me her butt! I fed the babies 4oz of breast milk and 2oz each of Enfamil maybe they will sleep a bit longer and be less gassy! They drove me crazy last night they were up from 330 to 730am! Anyone wanna come over and spend the night!?!?!!?! I should go to bed now and take advantage of them being asleep. I am so proud of myself I finally went through my mountain of paper that was starting to fall over and shredded 2 full trash bags full of stuff.

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Jacob

@ 3 years old: Jacob is Triplet "B" He is Logan's identical twin. He was also the recipient from the Twin to Twin Transfusion. This caused him to have to much blood flow before he was born. He had a large amount of amniotic fluid around him and an enlarged heart. 3 days before he left the NICU we were shocked to find out he had severe brain damage. Prior to him leaving the hospital he had achieved everything as well as his brother Andrew. He has cysts covering large portions of his peridal lobe and right frontal lobes. We do not know what caused his damage. He never had a brain bleed and nothing bad happened in the NICU that we know of. The doctor seems to belive it was caused by the TTTS, but 1 week old Ultrasounds showed his brain to be "normal" at that time. He has been diagnosed with Spastic Quadriplegic Cerebral Palsy. He also has cortical visual impairment, severe reflux (GERD), partial seizures, a g-tube. He can not do a lot right now, but we have faith that he will someday. He has some head control and can pull his chest off the ground and turn his head side to side. He has even surprised us a few times and rolled over.

Andrew

@ 3 years old: Triplet "C" he just hung out will his brother caused havic before they were born. He was a perfect infant and just did his own thing. As he is going into the toddler days he is definately developing his own curious personality. While he may have sat on the sidelines when they were small. He makes himself known these days. He has become quite vocal over the past few months. He learned how to walk when he was 21 months old. He climbs everything! He is a sweet boy and is Ava's best friend.

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Friday, October 16, 2009

No tranfer in sight :-(

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