30 April 2019


We celebrate the small wins in tonight's upload. There are a few updates I'll be filling you guys in on; some great, others not so much. But through it all, we know ...


[Music] hey everyone so they've been a couple of changes which is something I should never do but we're here now so we're just gonna go with it there have been a couple of changes one of them most of you know she is no longer required to wear her CPAP mask 24/7 they felt like she was in a safe enough place to where she didn't have to wear it consistently anymore so there's that which is awesome because I feel like the moment they took it off she was in a much better mood like instantly she went back to watching her shows on YouTube her cooking shows Food Network because she loves all things food and cooking and DIY and all of that stuff so she instantly grabbed a tablet and was like mommy I want to watch such-and-such and it just made me so happy she's now on the high flow nasal cannula that you guys have seen her on before the mass was a thing and she's been doing good with that a night before last the first night that they took the CPAP off the first day they had a wear it at night just to be on the safe side but the following day which was yesterday they allow her to have it on

for as long as she wanted and also gave her permission to sleep with it you know if she chose to they basically left it up to her it just was depending on how she was feeling and of course she didn't need her numbers look good her respiratory rate was looking good when she does breathe she is slightly too kipnuk she does have a slight you know work her work of breathing is you know slightly labored given her situation of her overall heart function not being where it should be but they feel like it's in a safe enough spot where if she wanted to wear it all night even while she slept then they would be okay with that so that's what she did and we've been good ever since another thing she has been having these like a flutters which is like abnormal heart rhythms and we had a run-in with these types of situations when we were at chop they actually had to cardiovert her heart to get it back in a more normal rhythm a rhythm that would be safest for her situation and they also put her on a medication what is the name of it it begins with an A it's not coming to my brain but they put her on that at chop

to just help to regulate a consistent more normal heartbeat when we were admitted her heart rate was in like the 140s 150s at rest like while she was chilling sitting down doing nothing her heart rate was that high and you know the team at Johns Hopkins took note of that put it on the proper medication certain beta blockers and other things to make sure that it didn't get to a seriously dangerous place she had an episode where she went into cardiac arrest and her heart stopped they brought her back this is a back story by the way this did not happen recently this was a couple months ago before we went to Philly so I'm just giving you guys a timeline of what her heart rate situation has been like so coming like I said before coming in her heart rate was like in the high at 140 to 150 s at rest they put her on certain medications and for a while they were working and then suddenly she had an episode where she just went into cardiac arrest it was like when the most scariest moments of my life I will make a separate video talking about that but they brought it back they eliminated the medication that she was on because they

realized too much of it was building up into her system and ended up dropping her blood pressure to it ridiculously dangerous level so they took her off of that and oddly enough that episode of cardiac arrest seemed to have jumped it jumped her heart rate to a more normal level because once they brought her back her heart rate then sat in like the 110 one teens at most and everybody doctors included or like how nobody was complaining but they just didn't have a reason as to why her heart rate got back to a more normal pace after that horrific episode so it's it wasn't no one tens and one teams for a while then we noticed it's starting to creep up again when we went to chop and they noticed that - they did some EKGs notice that she had you know slightly abnormal heart rhythms arrhythmias a flutters those type of things so they thought it was best to cardiovert her which is basically send shockwaves across your chest it's gentle it's not really painful they did today air for it just in case you know she were to experience any pain but it was really quick like the whole situation took like ten minutes and I was back in

the room chilling with her her heart rate was back to you know back to normal the 110 and we were good they also started her on that medication that I can't remember what the name of it once they started her on that while we were in Philly and she's been on it ever since fast forward to present time she's been experiencing more abnormal heart rhythms and they eliminated the medication that the doctors at Philly have put it on to avoid another situation like that cuz it was bad y'all talking crash carts and CPR and a lot of tears and panicking and but again I'll save that for another time only like place this little thing on her heart that just monitors her heart rhythm and we actually took it off yesterday and we sent it you know to the people that need to get it so they can look at it and tell us what we need to know I haven't gotten any information about that yet but I will keep you guys posted her heart rate has again gotten back to normal like on its own they took away the medication that begins with an A just as I see right now it's in a stable

place and right now no one's like super super super concerned they are keeping a close eye on her there was talk of moving her into a larger room just a room that can better equip like emergency equipment in the case of something crazy happening but they ended up you know feeling like that that wasn't a necessary step right now so right now she's good she's doing great she's breathing great her heart rate isn't being wonky like it was before so things are good she's in a better mood she is you know happier I'll say her overall demeanor disposition is a lot happier now at ease she still is in some pain from the latest operate like the latest procedure that she had were managing her pain so yeah it's it's coming along we're still waiting for that call so receive a heart and I just can't wait for that day but until that day we're here just living life living our best life the best life that we possibly can given the circumstances and I think we're holding up pretty well if you ask me it's not easy all the time like I told you guys before we're covered we're good but until then you guys don't stop

doing what you're doing be great and you'll see us when you see us [Music]