We haven't been inpatient for quite some time, but our good luck streak seems to have run out. We came into Children's the 17th, Janessa had a fever at it's highest of 101.3, and had a pretty bad cough with it. Of course with a fever we can't be sure if it's a line infection or anything else with our central line kids. After our 6 hour ER stay with various culture draws from her central line, peripheral line, urine, stool, and a viral panel, we were placed on floor 8 until a room opened up on our normal 7B transplant floor.
So far we have had many issues with her GJ so clogged that we can't drain it, she has been throwing up so much that finally someone is calling the IR team to change it, hopefully they will do it either today or tomorrow. Janessa's viral panel came back positive for a virus, she has a pretty nasty cold going on, and she is just so exhausted and weak, but keeps fighting it. Her central line came back positive for staph on the 17th but was negative for the 18th so we think her line is a contaminate, if it's negative for the 19th, then her line is clear of infection. Her peripheral is clear, her stool is clear, and her urine is always positive as usual.
The doctors are upping her TPN to 20 hours because she lost weight and is 17.14 pounds again :( this is going to be a challenge for us since she is a mobile 2 year old! Janessa will be celebrating her second birth on Sunday, hopefully not here in the hospital.
Well I have to go, Janessa needs a nap! Sorry for any spelling or grammar errors as usual!
I just found your blog! I really look forward to reading it from the start! YES we have been in touch with Quinns family, which has been great. Will be in touch soon. Best wishes to you all. X Shirley Davy with Super Sam!
ReplyDeleteHi Marybeth- tried to reach u via facebook but both pages could not b found- may b my account cuz someone was hacking it last week. Anyway, we went to a prune belly conference because Quinn now has a diagnosis of both MMIHS and prune belly. A doc in texas is collecting DNA snd completing a study for pbs. O told her the dual diagnosis . She is extremely interested in including MMIHS into the study as she knows its rarity and it is on the same spectrum as mmih. The two have been found together in several other babies but none r living that i know of. If u r interested i can give you her info or if u have more questions let me know
ReplyDeleteHey Shirley!! Hope all is well with Sam!! I don't check my blog too often, or update :( I need to do that more often!!
ReplyDeleteKathy, I deleted my facebook and remade a new one, I just added you and got your comment and checked this!! I have heard of the two being confused diagnoses, but never both together, I will let you know if I have any information on it! Is she doing any studies on MMIHS? Janessa does not have PBS, how is Quinn?
Once i told Linda (doctor) that Quinn has both she immediately said ahe wants to include Mmih in the study. She has seen 3- patients in her clinic with mmih and has dna collection for two. Quinn will be the third and she asked me to pass on her info to any families with mmih. The study includes a survey and blood collection from parents and child. She has received dna collection frim all over the u.s. so she can set it up with a lab near you. Ger goal is to find a genetic component and they are close to finding the cause for pbs. The two are in the same family or spectrum i guess u would say so she is encouraged if she can get more families wth mmih. Quinn us doing well -I we actually flew to orlando wth him for the conference and he was able to go to disney :). Hope u all are doing well!
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