Whitney
@MomtoEandP
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My life is chaos 🧑🧑🧒🧒✨
Virginia
Joined January 2012
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If you feel so inclined here are ways to lend our family a helping hand. More than anything we just want to spread awareness for Ebstein’s Anomaly, and once again send prayers. We love and appreciate you all ♥️
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Not only is Poppy recovering well but she opened her eyes for an extended period. Her doctor said she is in the acute recovery stage and the coming week will be more critical, so please keep the prayers and positivity coming her way 🤍
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We just came back upstairs from the cafeteria and said “HI!” to Poppy and she smiled and clear as day she said “HIIIII!” Us and her nurse all smiled and were excited and Poppy smiled back like “yep I just said my first word” lol she’s making progress despite her medical issues 🤍
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Poppy is off the ventilator and is being held for the first time in a month 🥰🤍
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They are going to hold off on the heart cath. She has needed to go up on her oxygen more sporadically this week, so if during the cath they need to go up for any reason it can throw off the numbers. A little disappointing, but she will get there in her own time
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Poppy is extubated! Being shunt dependent her sat goals are between 75-90. She isn’t quite meeting that yet but she’s coming close. They are going to do an X-ray here soon just out of precaution. Overall though she’s doing good 🤍
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Poppy hasn’t been able to be held since March 4th. We both held her for hours. She seems to be feeling much better besides some throwing up. Tomorrow she turns ONE 🥳🤍
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I got to hold Poppy for the first time in over a week. She slept on me for 3 hours and we got all the snuggles 🤍
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Our beautiful girl 🤍 For the first time in 16 weeks she doesn’t have anything at all on her face. She looks so grown up! We have 8 weeks of training to go through and had our first training session this afternoon which went well. She’ll be heavily sedated through probably…
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Poppy has EPEC which is a form of E. coli. I swear little miss can’t catch a break in here. This on top of the withdrawals has not been good. She has barely woken up in the last 48hrs and when she does she is very irritable. Hoping for better days ahead
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We just got upstairs about 20min ago from walking Poppy downstairs and getting her ready. They got a late start but said they will call us every hour with an update. Keep praying for our brave tiny superhero. She’s going through a long and very complex surgery but she’s got this
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Please send prayers and positivity Poppy’s way. I’m devastated at the news we just got after cardiac conference. I also have faith she can defy odds because she has many times already.
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Poppy’s nurse today altered a dress so she could wear it and not have to worry about all her lines and the trach, and one of the nurses that has her a lot bought her headbands that cover her scalp IV so she will quit trying to pull it out. I’m incredibly grateful for her care…
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There’s our pretty girl! She opened her eyes briefly a few times today. Her sats have been up for the most part today but she has had her moments. Hoping for nothing but positivity tomorrow for Poppy 🩷
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Poppy’s color looks so much better today and she just now passed a 2hr pressure support test. The goal is to do another one tonight. Altogether she’s having a much better day than yesterday thankfully 🤍
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They are having issues with sedation not being high enough for Poppy. She’s already on a very high dose of several things, so they are going to add a ketamine drip. She is dealing with metabolic acidosis but that can be easily treated. She is doing better than anyone thought 🤍
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Poppy successfully did 30min on pressure support this morning, and just now finished a whole hour. This is a great way to strengthen her lungs and diaphragm. She gets a break the rest of the night and will try more tomorrow 🤍
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This beautiful little lady just got taken off the nitric! She is being closely monitored but so far she’s looking good. Thank you all for the prayers and good vibes for her, keep them coming 🤍
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Change of plans. Heart cath tomorrow early. She didn’t have a good night last night with oxygen saturation dropping to 28 and heart rate down to the 70s. She had a few moments today of dropping to 50/60s. Super Poppy has got this though and will pull through. I have faith⚡️💜
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Poppy is awake! They haven’t turned down any of the sedation drugs or turned off the paralytic, but she didn’t care and woke up anyways! Goes to show she’s ready to get better and get out of here. She seemed a little confused that she was moving her head and able to touch her…
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Poppy has her catheter and chest tube out. She just came off the nitric with the hope to extubate Wednesday. In the words of her team she “is recovering better than we thought she would”. They say this week is critical in her recovery so keep her in your thoughts 🤍
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Poppy’s nurse today came in with a dress that she made for Poppy with button straps and g tube access. She has another one at her house she’s working on too ♥️
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Poppy heard the Bluey theme song and kicked her legs around and starting watching it intently. She had a better day withdrawing compared to the last couple of days. It’s been nice to be able to hold her and her be less sedated. She has a ways to go but she’s getting there 🤍
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Thank you to each and every person who wished Poppy a happy birthday! She had a great day and was able to relax. We just finished rounds and we are going to try to wean the ventilator more today, pressure support trials tomorrow, and then a possible extubation attempt Thursday 🤞🏻
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Poppy did 2 hours of pressure support this morning and just now finished another 2 hours! They are going to do a repeat diaphragm ultrasound on Thursday to see if the exercises are paying off and there is more movement!
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Poppy didn’t have the best day. She was cyanotic most of the day and was working pretty hard to breathe, but it turns out that her right upper lobe in her lung collapsed. She also spiked a fever of 102 but swabs were negative and once again running cultures.
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Poppy did two pressure support trials today. One for 2hrs and one for 1hr 50min. This is a huge deal for her! She’s definitely exhausted and sleeping right now, but to be able to work on her strength today for so long was a big task and she did great!
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They tried last night and Poppy didn’t have any other access except for a scalp IV unfortunately, but she still looks cute as ever. As far as the Remodulin goes, they are keeping it going through an IV since she reacted so bad to the subcutaneous pump, and took her Lovenox from…
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Poppy is in a great mood today! She just had an echo that showed little to no fluid around her heart anymore, so hopefully she can get the drain out this week! Her xray showed right lower middle atelectasis, but she sounds great when listening to her. Her doctor is wondering if…
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Poppy’s day consisted of more pressure support trials to try and strengthen her lungs. If all goes to plan her team is thinking of extubation possibly Sunday!
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We just walked Poppy down to the OR. This is the last photo I’ll have of her intubated. I’m so happy for her to get a new start at life 🤍
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Poppy got a little spa date and she went straight to sleep after. She got a blood transfusion today and spent most of the day resting. The goal for the weekend is to keep getting stronger 🤍
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She passed the ERT! She will likely have another one in the morning before extubation but they expect her to be able to be off the vent tomorrow 🤍
Poppy has had a good day overall. She is currently doing an extubation readiness test in hopes of extubating her tomorrow at some point 🤍
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Poppy’s ultrasound showed that there IS improvement since last week! Her doctor said she is worthy of another extubation attempt sometime next week. He said if she isn’t able to be extubated we will probably be talking about a trach. Keep sending prayers and good vibes her way 🩷
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Poppy had speech therapy today and they gave her a lollipop to try and get her to start using her tongue again. We will also be introducing flavored chapstick tomorrow to try and get her to lick her lips. She also got her arterial line removed and for the first time in months she…
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Poppy had a big day! She did two 2 hour pressure support tests, and even squeezed in some physical therapy and occupational therapy. Needless to say she is exhausted and sleeping soundly. Repeat ultrasound on her diaphragm tomorrow to see if all this has been paying off!
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The fact that Poppy can actually wear clothes now makes me so happy. That seems so small in the grand scheme of things, but there were times we thought she may not make it. Seeing her slowly getting back to doing normal baby things like wearing clothes is actually a huge win. It…
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Look at how good Poppy has looked the last couple of days! She’s getting close to getting her heart cath hopefully next week. That will determine what steps will be next. I know she still has work to do, but I’m so proud of how far she has come. We are lucky 🤍
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Poppy unfortunately did not have a good day yesterday, and so far today isn’t any better. She had an EEG overnight because she would roll her eyes back and have body spasms, and when her nurse or I would try to get her attention she wouldn’t respond at all like she normally…
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Poppy was awake for a good bit of the day. Physical therapy was impressed with how good she could move her legs considering they haven’t gotten much use. They were able to get her FiO2 down to 48 and ENT wanted it 50 or less for the tracheostomy, so now we are just waiting on…
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Poppy had a 30min test for her lungs while the vent was in pressure support mode. She triggers every breath so it’s like PT for your lungs. They hope doing this every so often will help strengthen her lungs and get her ready for another try at extubation at some point
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No repeat echo today. We are giving the ibuprofen another day to try and lessen inflammation, and then going to repeat the echo tomorrow. Today has been a big rest and relax day. She really needed it. She’s been through so much in the last almost 11 weeks.
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This is most Poppy has looked like herself all month! I have some big news.. she is cutting her first tooth AND fingers crossed she might get to come off the ventilator as soon as tomorrow. Keep the prayers and good vibes coming 🤍🤞🏻
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Poppy had a repeat echo today and the pericardial effusion hasn’t gotten worse. Going to continue the ibuprofen and keep monitoring it. She lasted 40min this morning on pressure support which is 20min longer than her last attempt last night. She’s getting there in her own time 🤍
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Poppy is a happy girl this afternoon. She spent the morning coming off of ketamine and throwing up, but she’s really perked up! Access has been a constant issue with her and now another IV has gone bad. She had no other places for an IV so they are going to switch her Remodulin…
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Poppy got the subcutaneous pump put on about 2 hours ago, and they are going to slowly taper down the IV Remodulin until around 6pm when she should be completely transferred over to just the pump. So far it’s already going much better. I’m hoping the extra time is what’s going to…
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Poppy isn’t having any issues on the subcutaneous Remodulin pump thankfully! She had a busy morning with trach care and physical therapy so she’s getting some beauty rest 🤍
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It’s a big day for our little Poptart! She has her hair done and is relaxing just waiting for her turn at the cath lab this afternoon 🤍
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Tomorrow is a big day for Poppy! If all goes to plan then around lunch she will be totally off the nitric. This has been a roadblock. If her medication is working she should be able to stay off. She then can focus on other big things she needs to have done and do to get better 🤍
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Poppy is off of the Dilaudid and tomorrow they will start tapering down more of her meds, they just aren’t sure which one but will talk about it in rounds. Also, who is that baby on the left? She has grown so much since she got admitted January 6th. The left is in the ER that day…
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Poppy is recovering well. She is having some tachycardia here and there today, but with no other symptoms they are keeping a close eye on her. Her heart rate was 170 this morning but it’s down to the mid 150s. That’s still high but hopefully going in the right direction
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The withdrawals have hit Poppy a little hard today but she toughed through it. She’s had a long day with PT and OT on top of not feeling too good, but she’s pushing hard to leave this place. Fingers crossed to be home before Eden’s birthday the beginning of August🤞🏻🩷
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Poppy just had an echocardiogram and is on the schedule for an ultrasound of her diaphragm. They are looking for answers as to why she hasn’t moved forward and been extubated. She is more alert today and I even got a small smile 🤍
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We have to be at the hospital by 6:30 in the morning. Poppy is the first case of the day. She was very mad all day trying to pull out her tube and a lot of head thrashing. I can’t wait for her to have more freedom and to see her sweet face. Definitely going to cry when she comes…
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Keep the prayers and good vibes coming for our little Popstar 🤍
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Poppy is doing well besides the expected withdrawals from tapering down medications. On Friday they tried to switch her Remodulin to a subcutaneous pump because of access issues, and as you all know that didn’t go well at all and she instead had a scalp IV inserted to help with…
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Poppy had a rough night last night so they only did a Versed wean today. They are holding off to see how she does before they decide when to do another Precedex wean. Withdrawals really got her today but hours of snuggles and a few PRNs later we got some smiles 🤍
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Poppy is still doing good off of the ventilator, but has had a rough day withdrawing from medications. Nothing prepares you to see your child go through that. They upped her drips for tonight and are going to talk more about it tomorrow. Keep her in your thoughts and prayers 🤍
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This morning they weaned Poppy’s Precedex very little and this afternoon they weaned her Versed very little to see how she does. Fingers crossed she has a good night and isn’t too uncomfortable 🤞🏻
We usually never hear any sound from her, but today she was positioned perfectly…
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Poppy is getting some much needed rest today. She just needs to get over this norovirus before we can be back on track to wean off things. Four more days until it’s her 1st birthday 💕
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Poppy hasn’t peed as much lately so they are giving her a diuretic to try to help that. She is getting a head ultrasound soon because she isn’t as active as she was yesterday even being sedated. Doesn’t mean she’s had a stroke or has blood clots, but they have to rule it out.
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Poppy failed another pressure support test and isn’t coming off the ventilator yet. She is also going to get a blood transfusion today. Hopefully it helps her blood count and maybe make her feel better if she’s fighting off anything. Jordan left so it’s us girls for the week 💚
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Poppy had a really good day! She threw up quite a bit but that’s expected with norovirus. Besides that she was pretty alert and engaged with my mom and stepdad. She even got to sit in a chair with PT for the first time. My mom didn’t get cleared from her oncologist to come to UVA…
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Poppy has been off nitric for 7hrs longer than last time. This is a huge step for her. Doctors are happy and are hopeful to do the heart cath this week. They can have more answers afterwards and then we can talk about what’s next for her 🩷
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Getting snuggles and watching Bluey. The withdrawals haven’t been nice to her today, but on a positive note she will be off of the Dilaudid tomorrow. That’s a big step! She still has several more to come off of but this will make 2 down 😊
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Poppy is just hanging out today reading books and watching Bluey. She’s just taking it easy to get ready for the tracheostomy and g tube placement on Friday morning 🤍
I’ve had a couple DMs and replies to tweets asking about a GoFundMe. I’m going to add the link for everything…
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Where did my 5lb 13oz baby go? I hate she is spending her 1st birthday intubated and in the hospital, but we are so lucky to be able to celebrate her. She has been such a blessing to our family and we look forward to many more birthdays with her. I love you so much Poppy and I…
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The plan for today is to get an echo and see about when they want to remove the drain after they check on the fluid. They are going to start weaning the ventilator down little by little and see how she does. Maybe tomorrow they said they will talk about weaning sedation, but want…
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Poppy just spiked a fever to 101.5 so they are running cultures and started an antibiotic out of precaution. She also failed the pressure support test this evening. She may have to wait a little longer to be extubated, but the team will talk in the morning and decide.
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There is no concern with Poppy’s head ultrasound and the doctors said that she is making pretty good progress in recovering 🤍
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Cardiology is happy with how the new medicine is working so far. The big test will be getting off her nitric oxide machine and seeing if she is okay with just the medication forms of it. They just started weaning her off. Here she is awake but heavily sedated a few moments ago 🩷
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We just finished rounding on this sleepyhead. At this point the drugs are just too much and she’s at an extreme risk for her withdrawals. She also hasn’t been able to wean settings on the ventilator like they hoped and her left side diaphragm movement is still affected. They are…
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Physical therapy was supposed to be at 11 but something came up and they couldn’t come. I think she is irritated I made her do some anyways with just me by that look I got 🤣
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Poppy has been very aggravated today but it’s mainly related to the tube. She wants to grab it and try to pull it out or she will thrash her head around and knock out the bows. They are going to do her tracheostomy and give her a g tube this Friday though! She is going to be so…
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The diuretic has helped and she is looking less puffy already. No news on the head ultrasound results, but we are hopeful she is fine because she has started kicking around and moving her head a little bit 🤍
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My heart is so full. I’m glad I could see them both in the same space even though Eden had to stay in the hallway. Eden picked out a “happy birthday you’re the best!” bag for my gift and she was so proud to give it to me. I love that their dad lets them be themselves and also be…
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So we attributed all the throwing up Poppy has been doing to withdrawing, but she actually tested positive for Norovirus again today so it’s a mix of the two things causing her to be sick. Even though she’s not feeling the best she’s still happy and still participating in all her…
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Life has a funny way of kicking you while you’re down. This afternoon my mom found out that her stage 4 lung cancer has metastasized to her brain. She is going to continue her chemo and do radiation in hopes of it shrinking. 2024 SUCKS so far, I’d like a reset.
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She really appreciated the ketamine drip! We will talk during rounds in the morning about the formal reading of her diaphragm and go from there. The informal reading though says she has movement in the right but not so much in the left. We also talked today about how she’s on so…
Another day on the PICU rollercoaster. Poppy had a rough late night/early morning. She needed 6 Ativan boluses, 6 dilaudid boluses, and 1 ketamine bolus. She was so agitated and didn’t want to calm down. They are going to introduce a ketamine drip today to have that going in the…
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The best 3 days 🤍
It was so nice seeing the girls be able to interact and my heart melted so much when they held hands while I was holding them. Poppy is still slowly weaning off meds and she is doing okay with it. Still throwing up but that’s expected with withdrawing.…
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Another day on the PICU rollercoaster. Poppy had a rough late night/early morning. She needed 6 Ativan boluses, 6 dilaudid boluses, and 1 ketamine bolus. She was so agitated and didn’t want to calm down. They are going to introduce a ketamine drip today to have that going in the…
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Poppy has had a good day overall. She is currently doing an extubation readiness test in hopes of extubating her tomorrow at some point 🤍
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The surgery went great! She doesn’t have to be on ecmo and they actually did close her chest. That could change but she is going to be closely monitored especially tonight. I’m in tears. I knew she could do it!! We can see her soon 🤍
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Update on Poppy since being re-intubated last night. She’s such a trooper
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Poppy’s day started out with a high heart rate and low oxygen saturation. She also had a fever and diarrhea. Apparently norovirus is going around the unit so they are testing her. On her xray her cardiac silhouette looked bigger so they did an echo and are awaiting results.…
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Poppy had a CT scan yesterday to get a closer look at some things and it showed one of her lungs was a little collapsed again. Unfortunately this has happened quite a bit so that’s nothing new. What is new though is that the AP collateral she had clipped during surgery has…
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They switched her morphine to dilaudid and started risperidone for delirium and she is already seeming like a different person from last night and this morning! I hate she is going through all this, but fingers crossed we can take care of this delirium and her be back on the…
Poppy unfortunately did not have a good day yesterday, and so far today isn’t any better. She had an EEG overnight because she would roll her eyes back and have body spasms, and when her nurse or I would try to get her attention she wouldn’t respond at all like she normally…
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We had so much fun with Eden this weekend. I can’t wait to see her again next weekend too. I’m going to miss her when she leaves in the morning. Poppy did pretty well the last couple of days. They are trying to get her fio2 down to 50. It’s been between 60-80 today. ENT would…
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Happy Easter!
Poppy is dealing with pulmonary hypertension episodes again like she did a couple of months ago. She probably won’t be extubated this week. They want to go back to the cath lab and get a look at her pressures first now that she is having the episodes again. They…
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In rounds today they said are going to try to wean the Remodulin (pulmonary hypertension medication) again. Now that she’s been to the cath lab, the hope is that she won’t have pulmonary hypertensive episodes since she doesn’t have the AP collaterals. They want to try to wean the…
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My heart is so full. Eden came up and she finally got see Poppy. She didn’t quite understand that she couldn’t play with her, but she said she loves her and was glad to see her best friend 🤍
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The trach is done and they are working on the g tube now 🙏🏻
We just walked Poppy down to the OR. This is the last photo I’ll have of her intubated. I’m so happy for her to get a new start at life 🤍
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Poppy is feeling a lot better from the EPEC thankfully. She just got taken off of CPAP and put on high flow air and so far so good. She’s currently watching The Princess and the Frog with her dad. I’m happy she’s had a good day so far 🤍
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There’s nothing concerning on her echo, but she does have Norovirus.
Poppy’s day started out with a high heart rate and low oxygen saturation. She also had a fever and diarrhea. Apparently norovirus is going around the unit so they are testing her. On her xray her cardiac silhouette looked bigger so they did an echo and are awaiting results.…
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Cath lab is scheduled for Thursday 3rd case of the day. If all goes well with the doctors 1st two patients then he expects to get to Poppy around 1pm. They also did an echo today. The pericardial effusion(fluid around her heart) is big enough now to want to drain. So at cath lab…
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