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Text of the page (random words):
ope to maybe share a before and after picture one day but not yet as far as surgery goes he looks great we won t know for a good six weeks and another sleep study how successful it was but besides some remaining swelling he looks great around his jaw ethan s lungs sound clear and are doing well according to his rt s he is still needing 2l of oxygen when he hits a deep sleep but not for long we may come home with a pulse ox and nasal cannula to have on hand for any middle of the night desats we cannot be discharged until at least monday as ethan s pneumonia iv meds have to be given through monday i just don t know if it s a monday morning dose or evening dose if it s evening tuesday morning will be our earliest discharge possibility lastly we miss our picu team man it s like going from first class to coach we ahem i really miss them all how do we begin to thank them send me ideas please seriously ok i m going to try and go to bed early praying for miraculous improvements at 9 38 pm 0 comments thursday september 27 2018 9 27 update picu day 9 short and sweet update as not much happened today ethan was weaned off of the precedex and started on a clonapine patch and ativan to help alleviate any withdrawal symptoms lungs sound good but he still has to cough some nasty coughs we were able to suction some of the secretions and jazz that he was coughing up which was good he does have some labored breathing but is on room air with only blow by oxygen on standby if needed he has only needed the blow by a few times for some isolated desat moments he has held on to a low grade fever and an elevated heart rate both could be attributed to withdrawal or the lingering infection maybe both we don t have a sure way of knowing so withdrawals the most obvious withdrawal symptom he has are the shakes when he goes to lift his arm up he shakes like a person with parkinson s it s super sad to see he also has like a blank stare when he s looking at you but he s trying so hard to maintain eye contact the other withdrawal symptom is sweating not profusely or anything but just a nice salty dew across his forehead this morning when the surgical resident came to visit we talked about the casts she was not under the impression we would be going home with the casts on and i was but over the course of the conversation we wondered if there were any splints that could be made that would be removable for showers and sleep as well as lighter in weight well a wonderful ot came by and made him some splints and they are awesome best thing is that they will last so we can use them in the future for things to keep his arms secure ie sleep studies he is getting used to his new mouth i think he thinks that his tongue feels funny and dr runyan thinks it s also likely he looks really good especially compared to a week ago now that the breathing tube is out i told scott that cora could come visit i posted a video on fb with their reunion it s really precious if you haven t seen it cora didn t want to leave because she missed us and she wanted to stay here with me just a little while ago our nurse was wondering if we could be moved to the floor tonight but after some discussion they ve decided to keep us here one more night and move in the morning we will have to stay on the floor for 3 or 4 more days while ethan finishes out his zosyn antibiotic for the pneumonia lord willing this is the last update from room 625 in the picu at 10 03 pm 0 comments wednesday september 26 2018 extubated i m sure that if you are following me on my other social media platforms you already know that ethan was successfully extubated today without any complications d he was groggy but awake his oxygen started at 4l and quickly made its way down to its current 5l setting his sats are holding steady above 95 and really only drop if he needs suctioning he is coughing well on his own and getting the junk out he s also tolerating the nasal cannula fairly well so far i imagine once he wakes up more that will change he is fighting to get up which we expected but it could make my night with him pretty long it seems crazy to hope that he sleeps tonight considering he s been asleep for over a week but he needs to get his sleep cycle regulated so far he s back to resting and the resident is ok with giving some melatonin to help if we need to i m hoping we don t have to do that though so here s to a restful night for us and cheers to a successful extubation at 9 34 pm 0 comments 9 25 update ok so i just did a live video on facebook with most of the update so here is just the written version today was super emotional for me maybe it s that we ve been in here a week now maybe it s because i miss my baby girl maybe it s because ethan caught c diff maybe it s because i haven t had much consecutive sleep though our nurses are amazing and don t bother me at all during the night maybe it s because i m overwhelmed maybe it s all of the above ok it s likely all of the above but i did step away for a shower the floor has a section for families in the icu to be able to rest shower which always makes me feel better besides the whole bomb of the c diff finding ethan had a really good day he has been comfortable and well sedated he did wake up for a brief second when i kissed him on the forehead to tell him i loved him and he made eye contact before drifting back to sleep i said on fb that it was his reassurance to me that he s ok and that he knows i am here he was started on flagyl for the c diff and he may have had a minor allergic reaction his upper lip looked like a bee stung it so they gave some benedryl and i think it looks a little better watching his skin color is also leaning yellowish could be the lighting maybe but a panel for his liver will be ran in the morning ethan has had a fever all day that hasn t budged his poor legs have lost muscle mass already they re just little chicken legs i ve been giving him his feeds but i still think he s lost weight from the loss of muscle this is the plan as of right now start propofol and stop versed and morphine propofol has a shorter life span so he won t be as sedated when it comes time to remove the vent continue precedex continue methadone and ativan to ease any potential withdrawal symptoms from the long term sedative narcotic use over the past week take the vent settings to pressure support this will basically have ethan doing the work and the vent will only kick in if he doesn t he needs to be able to show that he can breathe on his own without the vent stop feeds around 4am if all goes well overnight extubate around 10am tomorrow i feel a tad nervous about the extubation i should be doing cartwheels ok i should never be doing cartwheels but you get what i am saying about him getting the breathing tube out but there s just something about it that is giving me anxiety ok i stepped away in the middle of writing this and forgot to publish it i don t know if i forgot anything until next update at 12 37 am 0 comments monday september 24 2018 wiley day more bugs today kept us on our toes my sweet bubs is gaining tolerance to his sedatives versed morphine and precedex this meant that ethan did his very best to try and wake up today which we do not want him to do yet as it s just not safe since he is still intubated unfortunately we had to up his sedatives in order to keep him asleep and add methadone and ativan in order to help counteract any withdrawal symptoms he would have once weaned off of the sedatives pain meds once his cocktail was finally fixed he s been resting comfortably since warning poop talk coming two things that i never thought i would see were done over the past couple of days rectal pouch it s exactly what it sounds like a bag to catch poop that was connected to a collection bag like used for urinary catheters flexi seal click on the link if you dare it will be better for the protection of his skin as he already has a bed sore on his booty thankful to our consumption of juice plus for keeping him moving even on heavy sedatives and pain killers that are notorious for causing constipation ok poop talk over two more bugs grew from his culture enterobacter cloacae complex pseudomonas aeruginosa so far the zosyn is enough of an antibiotic so nothing really changed with treatment with the two new bugs added fever it s still there he is also busting out in random sweats so they are trending the fever an esophageal probe was placed to get an accurate temp lung fluid it s still there chest x ray today looked like yesterday s if that doesn t come off he will need to have the lung tap that i wrote about yesterday vent his peep was taken down to 10 and they hope to get it lower overnight he s also still on 30 oxygen if he continues to do well with the lower settings on the vent then he will be given propofol and taken off of the other meds since propofol has a lower shelf life in the system then if all goes well and he is well enough to take off of the vent that will be done on wednesday he s doing well but those bugs are pretty serious bastards he is not out of the woods yet but it s looking promising cora she is super struggling she did not want scott to leave her at school today and ann marie my friend who has been caring and loving on cora since ethan s surgery last week says that she had more sad moments today but that she was able to distract her i haven t said thank you in a while and i m sorry for that thank you to everyone who has prayed visited brought us food answered the call for a salt lamp lent jp vineyard and a special huge thank you to our surgeon and his staff our nurses omg the best our attending physicians our respiratory therapists and anyone else that is making this event the most comfortable possible they care and they re listening we ve been very happy with our care thank you side note that s funny we are low on juice plus vineyard berries because i ve been giving ethan so much and my shipment won t be here for a bit so i reached out to some who i know have connections that may be able to help i am surrounded by some of the most amazingly supportive people my awesome team leader my mama bird sherry has shipped us some but it won t be here until wednesday my amazing friend katie has a bottle that we could use and we can just replenish her when our shipment comes the only thing that was complicating was that katie lives in greensboro and i live in winston salem so i pulled together some friends to get it to me it s like i ran my own courier service today and that one bottle of juice plus has been all over like a piece of lost luggage but i will have it tomorrow morning lol katie kristen sonji my house amy neighbor me at the hospital if that doesn t show how important it is for ethan to have his jp i am not sure what does you should get you some just sayin until next update at 11 04 pm 0 comments sunday september 23 2018 we have a confirmed bug hi family friends we ve had a pretty productive past couple of days ethan has been able to be weaned down to 30 oxygen from 65 and 12 peep from 14 his simv was also taken down to 10 from 22 his chest x ray this morning was also remarkably improved they did a scan of his right lung the problematic one last night to check for fluid and he had maybe 1 5 2cm of fluid they decided to not do a lung tap and continue on with the lasix for the excess fluid in his body so far today that has been working as the title says the bug has been identified in his lung and it s a superbug because everything ethan does is super haha he has 100 000 cfu s acinetobacter baumannii he was on zosyvn and vancomycin but infectious disease wanted to discontinue those and switch to meropenem but i had to remind them that ethan is allergic to meropenem so id went back to keeping him on the zosyn update on all of the other fun jazz heart rate still elevated but nothing to worry about he is fighting a pretty major infection oxygen as stated above he s down to 30 and 12 peep i think they are going to try to decrease the peep overnight temperature still low grade but nothing worrisome considering everything he s fighting blood pressure he went from low bp to much higher his map is 100 right now but they tell me a higher bp is better than a low urination peeing well but still has the foley bleeding minimal swelling so much better his hand is still puffy from the infiltration it suffered the other day but even that is getting better feeding we upped his rate to 100ml hr from 80ml hour this gives him all of his same nutrition in a 24 hour period that he did prior to surgery extubation possibly tuesday or wednesday we have a lot to accomplish over the next day and a half to even think of that as a possibility for tuesday he seems to be trying to wake up a lot more which means more sedatives to keep him asleep but that also comes with withdrawal risk when the time comes in the next few days to extubate scott brought cora up to the hospital tonight so i could see her we aren t allowing her in the picu right now because we just don t think it s something she needs to see but i was able to eat with her in the ronald mcdonald room and snuggle for a little over an hour i sure do miss my baby girl until next update at 9 07 pm 1 comments older posts home subscribe to posts atom copy and paste this code to your html java script a href http faulknerfamblogroll blogspot com img alt faulkner family src http farm3 static flickr com 2617 4122353830_e8d6cce8e7_o jpg border 0 a faulkner woodworks on facebook faulkner woodworks idsc for life networked blog followers follow this blog search this blog my recommended reads shelfari book reviews on your book blog share a book review on shelfari where this reader meets fellow readers totally cool people live feed feedjit live blog stats wanna learn something acute lymphoblastic leukemia childhood apraxia of speech down syndrome dysarthia pdd nos tethered cord syndrome blog archive 2018 12 december 1 super rare 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