United States of America · 117 Days · 88 Moments · July 2018

Sean Sweeny’s Day by Day Recovery


3 days ago

6 days ago

Hi babe! OMG YOU MOVED YOUR RIGHT ARM TO COMMAND!! you also used your hand to hit a button!!! SO PROUD OF YOU! Franzi came to visit you! He’s hilarious! We took you outside for a little bit and we walked you around the floor! You were in the chair for about an hour and half! Good job baby!!! You weren’t too interested in food today but that’s because you were heavily stimulated in the morning and did so much in OT! You also washed your face with help of course! But the more movements the more muscle memory you can get! You are also getting better at your getting endurance since being in the PSICU! I wasn’t there for PT tho I’m sorry I had work! I love you so much baby!! ❤️

7 days ago

Hey babe! You had a great day today!! You had speech and ate some yummy breakfast food like pancakes and eggs and apple juice! It was all purred! But it was awesome! OT came with music therapy too and you sat in the chair! You did really good! You love classical music is what we found it relaxes you! We also played some Christian music for you and you loved it! PT was good too! They had you on the tilt table! You are doing better and better everyday with it! You are doing so amazing Sean!! You look good!! Dad and I found that you love being completely on your side we think your tired of being on your butt all the time! Haha! Dan was your nurse today! He’s great and knows what he’s doing! I also gave your blood thinner shot! I also changed your trach! They are training us for when we go home! Anyways! Keep doing you love!!! ❤️

10 days ago

Hi baby! You did so good today! You were able to hold the railing while I turned you so I was able to dress you all by myself! Yay! You also went on the tilt table for about 30 mins with no break! Yay awesome! In OT you were kinda tired and subdued and were super happy to be doing work but you are getting ALOT better at your YES answers by being more consistent! No’s are still hard for you but yes are easiest for some reason? You have been moving your elbow up and down so much and mostly to questions yay! Speech is now having you eat! So exciting! You had about 2oz today! Of purred vegetables! And some apple juice! Yay! You also hit your goal rate of 85 ml for your feed! They are not Bowles but at least you’ll be getting the nutrition that you need! Okay I love you baby!

31 October 2018

Hi baby!! Halloween was so fun with you!! The child life specialist set up a special trick or treating for you since you need Low stimulation and you have MSRA! She had stops at every nursing station and you got some really cool prizes!! They don’t give out candy at the hospital because most kids are on special diets or have feeding tubes like you! You also got to go downstairs and kinda trick or treat! It was too much stimulation with all the people though so we brought you back up :) we also carved a pumpkin but sister didn’t do it right so it turned out ugly 😂 anyways you’ve have a great few days! You’ve just been a little emotional and active so you are definitely tiring mom and dad out 👻 today you were on the tilt table for 35 mins YAY! You also had applesauce, vegetables, and some apple juice today with Becky!! You sure do love food💗 I love you baby💕💕💕

29 October 2018

Hi baby! You got discharged from PICU and are back in the rehab floor yay!! They changed your casts today to black because you are going to be Batman for Halloween! Sissy is going to be Superman! They do a big trick or treating route around the hospital! It should be fun! Ot roasted you the other day because you weren’t tying hard enough and we’re taking things seriously and that was kinda funny to watch😂 PT came in and put you in the cardiac chair for about 45 minutes! We just need to build your tolerance back up! But that’s okay we’ll do it! They also have orders to put you on bybap now so you won’t have to go to PICU when you need it! Finally! Speech should be coming in today or tomorrow to help you eat!!

28 October 2018

Hi baby! Today was a mellow day for you since you are still recovering from surgery! You did sit up in the cardiac chair with Pt!! Yay! You look awesome with your skull cap back on! You can’t even tell it’s titanium! You ar moving around more but no crazy improvements overnight! But that’s okay hopefully we’ll keep seeing progress! :) we watched lilo and stitch today it was lots of fun! I love you buddy!!!

25 October 2018

Hey babe you got your skull cap back on yay! It was with the titanium! They had originally scheduled you at 1pm but you got pushed back to 4!! You got out around 8:00 but still haven’t woken up yet! No major complications with the surgery everything went great! Yay! So happy for you! Love you! 💗💕

22 October 2018

Hey babe! I wasn’t really allowed to update this thing but now that we know more I can! So the medication you were on raglan for stomach mobility was making you have apnic episodes by slowing down your breathing too much😱 but now they have figured it out! They kept you in the ICU because of your skull cap surgery! That is today! Yay! They are also placing a g j tube so they can give you the proper nutrition and so that you can stop throwing up. Also because they can’t use Raglan anymore this is the next best option! You’ve been pretty emotional the last few days but we think that’s because of the surgery and you are scared with all the movement. I love you buddy!!

21 October 2018

19 October 2018

Sean! All your friends came yesterday! It Was so fun!! Omg! We had pizza and soda and candy! You were so happy to see your football team! They all signed your casts too which was super awesome! We also did A prayer circle for you and a blessing of the hands!! Evan spry the prayer guy;) said an awesome pray! Cheese came too hahaha he’s funny! He kept wanting me to buy his shirts HAA and kept talking to me about God knows what! Hanz butt crack showed to everyone HAH! Hmm what else! PT you had a hard time. You became orthostatic and you could only sit up for a little bit! But that’s okay! You were also very tired and fell asleep when OT was supposed to come! But it was good because they you were well rested for your visitors! You had a little bit of a hard time after because it was SO much stimulation for you but you did well after you slept! I love you!!

18 October 2018

Hi love! You had a good day today! You had Pt and OT and they worked you in the cardiac chair because you are in the ICU! But you are supposed to leave today! Yay! Speech came and worked a little bit and you had applesauce too! Yummy! You pooped today too which is awesome because that’s been causing all this mess! I love you buddy!

15 October 2018

Seany! You are currently in ICU because you are having periods of apnea bu it’s only for a few seconds and then you are fine..you are also back on a little support on the track collar. They think it’s because you have an emesis that blocking the movements of your bowels and prevents your stomach from emptying properly. You also have a gas bubble near your diaphragm and that could be causing you to have short periods of the not breathing or d stating. You are still the same old Sean tho smiling at everything and you are alert. You were quite tired today but I think yoI are just catching up on lost sleep when you were throwing up. therapies are coming tomorrow to work you out! Today you mostly rested you took a 3 hour nap hahaha and then me and you listened/ danced to some rock and 70s music! It was fun! We also stretched your arms and legs. But yeah nothing too crazy except the not breathing for 20-30 seconds? But hopefully by tomorrow it will all be resolved! Love you so much ❤️

14 October 2018

11 October 2018

Hi baby! Sissy and Alex came to see you today! We went to your OT and speech therapy! You had puréed carrots and mashed potato’s with gravy! You did so good and we’re so excited to eat! Sissy learned how to feed you the right way and fed you a couple bites of carrots!! :) you are making progress everyday because you can vocalize a lot easier to command now and are using your elbow to communicate! Speech is going to allow the cafeteria to send you food but only vegetables or food but we’re allow to give it to you!! Yay!! You also did really good holding your head up today in OT and PT! You are looking to the right more often and sitting straighter too! You are going o have lots of visitors this weekend! You are doing so good! You havnt thrown up in days! Your heart rate is really good and your vitals too! You are going To get your bone flap hopefully soon! YAY! I love you so much buddy can’t wait till we can bring you back home!!

9 October 2018

Hi baby! Omg you tried rice with cilantro, chicken noodle soup, pears, and beans and corn salsa. It was all puréed but you LOVED it! I’m so happy for you! Hopefully by the end of the week speech will clear you to eat with us breakfast lunch and dinner! You’d only get 30 mins but still! Today you were pretty tired and slept a lot! But you went on the tilt table for 32 minutes! OT you were more subdue but that’s okay! You had a big day in speech! I love you! Nothing too big today but that’s okay too! :) I miss you I will see you Wednesday for moms birthday! :)

8 October 2018

Seany!! You ate 1oz of applesauce today!! You did so good that the speech therapist wants to clear you to eat breakfast lunch and dinner(all purred) food! Yay! It wouldn’t be a lot and you would only have 30 mins but still awesome step in the right direction! Hopefully tomorrow you will be getting chicken and gravy purred and vegetables!! Yay!! You were so excited to eat too it was awesome! They also recasted you today since they took them off in ICU! You handled it OK just because there was a LOT of stimulation and you had your hand brace in and you did not like that! You slept a lot today too because you are still rebuilding your endurance but you were super happy in speech and in the morning when we came and saw you! Mom said you did really good in OT too, they are working on movements with your hands so that you can start to become more independent!! Keep working buddy you are doing great!! Oh also you havnt thrown up in 5 Days!!!! Yay!!!! Okie love you!!

7 October 2018

Hi baby! You are almost to 100 percent baseline! We got you in the chair today for an hour and 15-20 Minutes!! We also stretched your legs and arms out! The 60’s fire guys came to visit you today! You and dad also took like a 2 hour nap it was hilarious!! You were smiling and laughing a lot today too but we’re more tired than usual! Also, you have been keeping your feeds down for 5 days now!! No throwing up YAY!! Also, the hospital is bending over backwards now because of the big fuck up they did with that GI doctor who withheld all your meds and That’s what made you go into withdrawal and have a seizure! So now we have to build up your tolerance again! But they are going to cast you tomorrow and put you on the tilt table. I love you so much love!! Hopefully this week will be WAY better!

6 October 2018

4 October 2018

Hi baby! The past few days have been crazy! But we are just happy you are doing better! You are still very out of it and tired because of the Valium they have to give you...! But you are opening your eyes again and smiling!! :) you haven’t had any therapy yet b hopefully tomorrow you can! They discharged you from the ICU and you were able to back to Miller west(rehab part of the hospital)! You also changed rooms because they are doing constructions so we had to take down all your stuff again!! But that’s okay! Anyways I love you! And I’m sorry I couldn’t be there the last few days but I’ve had work and I’m kinda getting sick! But hopefully I can see you tomorrow!!

1 October 2018

Hi baby! Today was A VERY rough day:( you had a seizure for about 2-3 hours were thinking but then continued to have symptoms of posturing and tremors and flickering eyes :( you were also super sweaty with a heart rate average of 170:/ They gave you 4000 of keppra, 4 dose of adavain, Valium, morphine, antibiotics in case you have an infection in the brain! They are doing an EEG over 24 hours, they did and EKG as well as spinal tap! They hooked you up to the ventilator because you were STATing very low and stopped breathing... it took them while to stop them but you were still pretty upset. You had a fever of 103-101 all day today but are finally calming down kind of.. you are out of it non responsive with eyes closed your pupils are normal! They are hoping the reason you are having this is because the blood and body wasn’t absorbing your medicine the way it was supposed to because you had a blockage! That’s the best case! Anyways love you buddy keep fighting we love you ❤️

30 September 2018

Hi baby! Today you didn’t have any therapy! It was your rest day today! You did throw up tho 3 times dying the night :(( which sucks because it made you pretty tired all day today :/ The GI doctor did an X-ray on your tummy and you have and blockage and don’t really have bowel sounds...soo they are running labs for your nose and blood counts and potassium. They are also holding all the feeds until they can get the throwing up under control! They are also going to give all your meds IV, morning by G tube! Besides that tho you are doing great. You wernt as active today but we think it’s because you didn’t sleep much and havnt gotten food in a day:/ but hopefully they can figure out what’s going on and stop this vomiting! Sharon and Fred came to visit you today! They are dads friends!

29 September 2018

Hi love!! Sorry I haven’t written! Today you did really good! You had speech, OT, and PT! You went in the tilt table too for 20 minutes!! You did throw up a few times today....but the GI doctor came in and gave you a med for stomach mobility and what not. You were super happy tho today I told you stories about what’s going on with me and you just listened and laughed! But it’s funny because you only do that for certain people! Also, Dianna moms friend came to see you! We also watched a lot of football! You’re heart rate has been really good! You’ve been moving your elbows to commands and responding with yes or no! We are so proud of you! Mmm what else?

27 September 2018

25 September 2018

Hi baby! You tried applesauce today again! You did so good! They want to keep trying puréed foods which is super exciting!! I wasn’t able to see you today because I was working at the Carters! They are so fun! But, you threw up 2 times today which sucks!! And you were kinda agitated after therapy but you fell asleep very quickly around 5:30! Sissy will be there tmrw in the night because she has work again! But I love you so much!! Keep fighting!!

24 September 2018

Sean! You did SOOO good today I’m so proud of you! You ate some applesauce today! You had to move your tongue around too and swallow but you seemed to really like the applesauce! She also worked on communication by looking at different objects to say yes or no to! You also had a 2 hour nap! But once you woke up you were happy and smiling and alert! Pt worked with you by sitting you up! We also had you hold a ball and then try to keep ahold of it and then throw it! You do better on your left side because the right side is hard! You also threw up twice today which sucks! But they gave you medicine for your tummy and are starting you on medicines for stomach motility and acid reflux! Also in speech you worked with bubbles and turning your voice on and off! Then we watched some of cars the movie before i had to leave for home! But I love you and great job today I love u buddy keep fighting!!

23 September 2018

Hi Sean! You had some visitors today!! Hanz, Sean, Jackson, and Tanner all came to visit you! And your coaches! They were here for like two hours just cracking jokes and you were laughing the whole time! You were SO excited to see Hanz it was adorable!! We also said a really nice prayer over you!! Phil, Teresa, and Brad all came to visit you too!! You were pretty tired tho from all the stimulation from earlier! It was really awesome tho to see the boys and how much love they have for you! Yesterday, you got a procedure done too see why you are throwing up! The doctor said there was inflammation, you had a pile of bile becuAsue you wernt fully emptying your tummy! And he also took some biopsy of your tummy tissue! He also put in a scope in your nose to check how much acid reflux you are getting in a 24 hours period! The surgery went a little funky they put you under sedition but apparently you were coughing and then got a bloody nose...so they had to intubate you..but besides that you

21 September 2018

19 September 2018

Hi cutie! Today you moved to Long Bach California YAY! You were kinda sad in the morning when everyone was saying bye you started bawling your eyes out because the nurses and OT and PT were crying but you got soooo happy when Bob came and sent you off on the plane! You were also sooo happy when we came to visit you!! Brad came today, Alex our old nanny! And Paola! We brought you some balloons and made a welcome home banner! You were very happy to hear old stories! I havnt seem you that happy in awhile ! It was awesome! We checked out Ronald McDonald and it’s super nice! There was no dinner today tho so we all went to Chili’s! I hope you have a great first night! You’ll love it! It’s very clean, the level of care is GREAt! I love you buddy!!

17 September 2018

Hi Seany! Today was a good day for you! You stood up wit Alyssa and Laura! You also did some squats with them! They said everyday you get better and better! But, your left arm will probably have to be casted when we go to Long Beach because the tone is sooo strong! But that’s okay! Mom and dad went to Estes Park today so me and Alex hung out with you most of the day ! We also shaved you!! You look so spiffy! Alyssa came by too again to stretch you and then we put you in your chair! You were in for about an hour and 20 minutes!! Yay!! You were a Little agaited in the afternoon because Laurie wasn’t venting you so I think you had gas bubbles and it was hurting your tummy! Also, you peed and she wanted to wait to clean you up but you hate being wet so you got upset! Also she wasn’t giving you tynol or Motrin like all the another nurses so I finally told her too and then you felt better! Haha nurses I swear! Anyways goodnight love!! You are moving to Long Beach soon!! So exciting!

16 September 2018

Hi baby! You went outside today! It was pretty hot tho so only for about 10 minutes! But you were in the chair in for an hour and 20 minutes! You didn’t have ot or pt come today tho but that’s okay dad stretched out your legs! Alex your cousin is here visiting you too! Bob was nurse today you always love when he is with you! You were very laughing today and happy! Very alert too! You showed your doctor how you can move your legs and wiggle your toes good job buddy!!

12 September 2018

Baby! You stood up for 15 minutes today!! Ahh I’m so proud of you! You just keep getting stronger and stronger!! You also lasted on the chair for about 50 minutes!! So amazing bud! I wasn’t able to see you today because I’m sick with a cough and I don’t wanna get you sick😖but I miss you! Even tho it’s only been like a day and a half!! Hopefully I’ll be able to see you tomorrow! You have spiked a little bit of a fever but they are watching you , so don’t worry! Bob wasn’t here today :( but Brent was, he pretty cool! I love you so much!! Keep fighting bud!

11 September 2018

Hello lover boy!! You had a rough night last night you threw up a few times and we’re gaging a lot! You were given IV zophran to help your tummy! We don’t really know why you throw up but we’re thinking it because you don’t like the TRACH.? But you worked with Alyssa and Laura yesterday on the mat which is super good for you! You seem kinda tired the last two day so hopefully your not getting anything! Sissy is feeling sick so she couldn’t see you today but I was able to FaceTime you!! You did so good in Pt too! The way you sit up is getting better and better you are getting better head control trunk control too! You are doing so good! I’m so proud of you! Mommy is gone in Ca looking at rehabs and she really likes millers in Long Beach so that’s where we’ll prob send you! Yay!

9 September 2018

Hi baby! You had a great day today! Alyssa your fav OTworked with you! We had to wake you up and you went too happy with that ;) but o wouldn’t be either! Bob was your nurse you always laugh with him! Alysaay is very proud of you because she says everyday you are making improvements!! We got you in the chair twice today too which is very good for your health! And lungs! They also red capped you today for about two hours which means you were using your upper air way to breathe! Good job buddy! Hopefully we can get he tRACH out soon!! You wernt as alert as you normally are but I think it’s because you have been tired. You threw up a few times last night so you didn’t get the full REM sleep you usually do;) you also havnt been taking your naps! But you’ve been falling asleep at about 7:00 pm because you are sooo tired!! We watched some football too! The broncos won:;( BOO and the Steelers tied with the Browns CAM U BEIEVE THAT? I love you Sean and am so proud of all the work you are doing

8 September 2018

Hi baby! Today i didn’t see you much i needed a break! I spent about 3-4 hours with you tho! You threw up twice today...we’re not really sure why! You didn’t take a nap after all your therapises this morning! So you slept at like 7:00 and were out!! You had Wanda today you love her! She calls you her pumpkin! She’s from South Africa and super interesting! She awesome! You also got compression socks today so that you don’t get a DPT! Wanda sent a MRSA culture to see if you were negative! You had such a bad coughing fit today wit Amanda that you coughed out your tRACH!! You also got red capped today which is awesome because it means in time that will go away!! I love you baby!! I’ll see you tmrw!!! ❤️❤️❤️

7 September 2018

Hi cutie!! Today you had another good day! Toni was your nurse! She’s VERY good with you! You had therapy but me and mom missed it! Alyssa was there with you tho;) they stood you up!! And worked with you! Speech came in and tried to do some swallow and ice chip testing! You also scored a 16 on you coma recovery scale! You are getting better and better everyday!! I love you so much baby!!!❤️❤️❤️❤️

6 September 2018

Hi baby! Today you stood up! We are so proud If you! Laurie was here to visit you! Laura was here too your fav PT you sat up for about 10 mins!! And you are getting way better at holding your head up! You are also trying really hard to stick your tongue out to command! Also, today you lifted your head up while in bed 🛏 and turned it which is a huge huge deal! We are so proud of you!

5 September 2018

4 September 2018

Hi baby! Today was a great day for you! You were sitting in the chair mode today and when I walked in you were all smiling it was adorable!! We attempted to have you stand today but the OT doing it Emily didn’t really know how to do it so you didn’t look comfortable and you were pretty PO! So she sat you in the chair instead! Laurie came to visit you too and that was some great stimulation! You sat In the chair for about an hour and half which was awesome!! You also had a great nap for about 2 and half hour! Brent was your nurse today! You kinda like him idk you like Bob the best tho. Laurie’s friend who’s into alternative medicine cane and did some Reki healing for you! It really calmed you down! And she said she thought you were doing math equations in there!! So maybe I’ll give ya some geometry questions?;) anyways I slept a lot today and we went to Denver so I didn’t see you as much as I’d love but it was good to have Laurie there for a new voice and stuff! Okay love you!!!!❤️❤️❤️

3 September 2018

Hi baby sorry I forgot to write yesterday! Today Brent was your nurse! We got you up in the chair for about an hour and a few Minutes! Dad and I did it too so that was actually pretty funny 😂 you tolerated the hand splint pretty well too! You also had the speaking valve in like all day sooo proud of you! We listened to some music!! You fell asleep a lot of the day tho for like 4-5 hours you were out!! We don’t know if it’s the increased dose of keppra or baclofen but I just think it’s become a habit! ;) dad stretched your legs tonight because if was holiday staffing For therapists. You gave some nice poops for me and zack your night nurse ;) and were laughing the whole time Haha! We worked on sticking out your tongue and you are getting so close! I know you can do it! I love you so much baby and I miss you!!! Keep fighting ❤️❤️❤️❤️❤️

2 September 2018

1 September 2018

Hi baby! You stood up today for 9 minutes! We are so proud of you!! You were a little agitated while doing it but you did an awesome job your vitals all stayed within reason! Also, Alyssa worked with you today and you scored a 14 on your coma recovery scale! So good job on that! Sissy didn’t see you in the morning because she didn’t sleep last night so she was sleeping in! You took two naps today! One after Alyssa messed with you and then after you stood for 5 mins! I’m so proud of you! Toni was your nurse today and you had a very good day expect you threw up twice... so we’re not really sure why? Maybe you are just exhausted or somethings bugging you so the way you deal with it is throwing up! Sam also came to visit you today! She watched you stand which was a big deal! Zach is your night nurse today! Hmm what else? Oh ya you tried to stick your tounge out to commas multiple times tonight which was really good to see! I love you baby get a goodnights rest ❤️

31 August 2018

Hi baby! Today you stood up with Alyssa and Laura! You did so good! You were getting kinda dizzy here and there but you stood up 3 times for about 1-2 minutes!! We are so proud of you! You also did a very good job in holding your head up!! And big step to having you walking and sitting up! You were very smiling today mostly cuz bob was there! I think you like his vibes because you really mesh with him! I love you baby!

30 August 2018

Hi cutie! You tolerated your splints for an hour today I’m so proud of you!! You also did really good holding your head up and insisting forward movements with PT today! We dressed you but then you ended up pooping through your shorts so we had to take those off 🤣 you are much more alert than you have been and are very smiling! You have a lot of the same facial expressions too so it makes to that much easier to read you! I can always tell when you pee or poop be Aussie of this look on your face and then you start to get move your arms more and it’s either a poop running down your leg or pee all over the bed!! HAHAH! You slept slot today! Probably for about 4-5 hours! But sleep =recovery so I’m not complaining! I also took a 2 hour nap! I love you so much Sean and I can’t wait till your better! Although you’ve come along way and I’m so proud of you!!

29 August 2018

Hi baby! Today was a good day for you. You had bob for a nurse and you were laughing and smiling the whole time. You just love him! PT and OT came Laura and Nicole I believe because alysssa is gone till Friday. They sat you on the edge of the bed and worked on head control. Sitting up is really good for your health mentally and psychically! We also got you up in the chair today. You did NOT like it today! We also put the hand splint on too and you were not happy about that! We took a fun little joy ride outside on the 5 floor which is also good for you recovery! Then you started getting upset and angry and eventually started sliding yourself out of the chair so Laura after about 45 mins in the chair came and put you back in bed. You were much happier once in bed! But we do have to build up your tolerance for when you go back to rehab. You slept off and on most of the afternoon! Prob because of the hard workout! You don’t realize how much energy it takes to hold your head up and stuff!

28 August 2018

Hi baby! Today you slept a lot! You were very temperamental. You seemed agitated/ anxious today but that’s normal we all have those days. You do not like being wet or poopy! I helped cleaned you twice once when you peed and then once when you pooped. I’m trying to learn as much as I can just in case we’ll have to keep doing this. They moved you over to a dolphin bed a bed for skin it’s good for pressure sores.

27 August 2018

Hi baby I don’t have Amy pictures of today. It was pretty uneventful. You were pretty calm and relaxed with a few episodes of crying and agitation mostly when you were wet though. You slept for most the day or just laid in bed with low stimulation. You seem a lot more sensitive to stimulation today that usual so we kept it quiet. Sissy also slept because she was tired hehe. They put you in the chair for an hour and also worked and stretched your for about 45 mins. They sat you up too which is good for head strength. You got mad/tired/agitated and started posturing and crying after about 45 minutes but we still Kept you in there because you need to sit up it’s good for your lungs. Denver firefighters too came and dropped by a gift card which was really nice of them! Everyone is rooting for you bud people you didn’t even know existed!’ They love you and I love you and we want you to get better! Okay I hope you have a good night you were sleeping when we went to say goodnight! I love you

26 August 2018

Hi baby! Today bob was your nurse and you always love when he is around ;) he always make you laugh up a storm! You wernt able to do PT today because apparently they were swamped so you got to rest today. No results from the CT scan so you didn’t have a stroke. Also, the EEG showed nothing meaning no seizure activity. So we have no idea what Happened to you the other day but we’re hoping it won’t happen again. You had a pretty calm day but you did watch two movie which you seemed to like! You were happy as a clam laughing at us and exerytgunh! Tonight you were a little more agitated but we think that’s Just because you pooped and peed but once we got you clean you were more released but still agitated. We think you were just overstimulated today and we’re just restelness and annoyed! So I just held your hand and your heart rate went down to the 70s rather than it be in the 90s! I love you so much buddy and I miss you please get better soon

25 August 2018

Hi baby! You are currently having an EEG to see if you are having what they call sub clinical seizures(seizures that don’t exhibit the typical signs) it took them 45 minutes to get them all on! Also this morning you were not as alert but also not smiling but for Alyssa and me you do. We noticed a face drop on the left side and lots of right side neglect. So they called the stroke alert team. Tons of doctors and nurses came in to assess you plus get a history. The nuero team ordered a CT scan with contrast so they could see the blood vessel in you head plus neck. However a cat scan can’t also discticsntky rule out a stroke because it’s not as clear as MRI which you can’t have. So they will do one tmrw after EEG is done.

24 August 2018

Hey buddy! So today was kinda an interesting day. You started off the morning very alert and happy! You were showered and smiling and following commands. But then you stopped breathing and your oxygen levels went to 70 so they bagged you. I was in the gym at the time but mom told me to come up. Then your pupils were two abnormal sizes and you had an upward gaze to the right and were very out of it meanwhile you were still not breathing. So they put you back on the ventilator started IV’s to get fluid and blood counts and all that. They also took you to CT scan but found nothing different from the previous ones. They ruled out infections and blood issues. So they think it’ was a focal seizure so they gave you an IV dose of Keppra. You also couldn’t keep anything done from your feeedinf tube you kept throwing up so they gave you a break from that. But you me heart rate was pretty stable throughout it all. You just wernt as alert. But Brent and Toni the nurses are super good! I love you!

23 August 2018

Baby! We went on an adventure today!! We went outside! You didn’t really like it tho! I think too much stimulation plus you had pooped! Today was a good day for you buddy! You had Brent today as your nurse and you also slept for a good 2-3 hours once I played some Christian music you were out! Prob from the big day of being in the chair plus going outside! Tehe! Sissy was super tired after staying there all night the ICU never sleeps!! You luckily got sleep last night and threw up once or twice last night and then had a huge blow out for us today. You threw up basically all your feed onto mom and I good thing I caught it with my gloves;) and it got on moms pants but once you threw up you were so much happier smiling and laughing as usual!! You were pretty much calmed down too after we cleaned you all up changed your sheets and everything! We don’t really know what’s making you sick but we’ll figure it out okay bud? I love you more than you could ever know and I had so much fun with you

22 August 2018

Hey Sean! I’m so proud of you!! You squeezed your doctors hand to command!!! You have also been wiggling your toes a lot today and wiggling to commands which is awesome!! Mom and dad are gone so we got to some crazy stuff huh;) we joy rides right outside in your wheelchair which was really fun! You also did makeshift squats with PT! You also did an atomic shart on Bob when you were turns his way! Haha and then peed on carol! You were laughing so hard and you were all smiling today which was great to see! Bob is very good with you he knows what to do and how to keep up with everything!! Also mom and dad are not here today so it’s just me and you bud! I love you!!

21 August 2018

Baby baby baby! So not too much going on today because of the big day yesterday! But you did sit up in the chair mode in your bed for about 2-3 hours which was awesome and great for your health! Speech came in for about 30 minutes to work with you and said you did much better than last week so good job! PT came in and have gave you a massage on your neck and was stretching you but you were really tired and agitated so she left s little early but after she left you about knocked out and so did i we slept for about 2-3 hours Hahahah! It was the perfect day to sleep tho because of the rain and what not! Then I played you music for awhile once you woke up helped change you and read to you our book that we are reading called super fudge by Judy Blume! You seem to really like It! Tonight was a little tough for you. You were kinda storming you were really sweaty and crying and stuff but they gave you boost bar and that seemed to calm You down. I think you are just overstimulated! I love you!!

20 August 2018

Hey Seany! Today was a BIG day today for you because OT AND PT got you standing up in a harness of course with help but it was to get used to standing it’s good for blood flow bones and to bear weight on your ankles! You sustained weight and took steps with the help of PT guiding you and it was really exciting because you were smiling and laughing the whole time! You like alyssa a lot you always flirt with her ;) hahah you had a very nice nap after we got you laid down and we’re snoring;) I also took a nap too on the couch in your room! You woke up pretty ago after and then ended up throwing up some meds. We’re not really sure why you’ve been throwing up but it seems like your tummy is just super sensitive. You were not too happy for the afternoon but calmed down eventually. Mom and sissy got our nails done and then I went to workout! You are doing really good baby and zacks your nurse tonight he’s cute as hell but too old for me 🤦🏼‍♀️anyways I love you so much and I’m so proud of y

19 August 2018

Hi Mr. sleepy head!! You sat in the chair for 2 hours today bud good job! Also OT gave you a pep talk about you can do it and how it will be hard but worth it! Also I woke up late so now I’m sitting in your room watching Riverdale! Hehe hopefully you wake up soon so I can hangout with you! Love you!

18 August 2018

Hi Sean! So today was kinda a crazy morning! You threw up 3 times but they think that’s from the general anthesisia due to your surgery! You turned blue today and your o2 levels went to 30 so they got ready to bag you but you quickly recovered and started breathing again. They took you down to Ct scan because the doctor Gooding noticed you had more swelling than usual but thank god it was nothing they think it was just air!! From the surgery so your all cleared! So after that you seemed to have a better day and you were wiggling your toes which was awesome!!! ❤️ because that means your innthere! You were smiling a lot too which was super cool

16 August 2018

Hi baby!! So today you were supposed to get your skull cap back on so they prepped you and took you to the OR but when the surgeon opened you up he found an infection in your dura which was confined to a small amount so it wasn’t able to penetrate your brain THANK GOD!!! He is good indeed! Anyways they cleaned out the infection and closed you back up as well as took cultures and blood of the infected tissue. Now they will wait for it to grow to see what exactly it is. You’ll be on antibiotics tho for 6-8 weeks and then have to be cleared another two before putting it back on so we’ll be here a while and you will prob be in PICU for awhile but rhays okay it gives your brain more time to heal!! I love you so much and I’m so happy I’m back home with you because seeing you smile is the best part about my day no matter what! I love you so much seannny stay fighting okay!! I’m praying for you and so are so many other People!!!
Hi Seannny! Sooo I wasn’t feeling too good today so I didn’t see you in the morning but mom and dad did! You had OT,PT, and speech working with you for 2 hours!! Yay!! They had the speaking valve on you too for 9 hours which was really good! You had bob as your nurse today he’s really good!! Mom and dad checked out Ronald McDonald House and it was huge but it’s kinda far which sucks! You’ve had a really good day today especially since you had such a big surgery yesterday! I love you so much baby !! I even read you a few stories today and you really liked so that’s gonna be a thing from now on!

14 August 2018

13 August 2018

Looked at a place in Orange. It was nothing compared to Craig. Love you Seany!!

11 August 2018

I miss you and I love you!!

10 August 2018

Love you more than you could ever know!!! I’ll be home soon!!

6 August 2018

Seany I love you

5 August 2018

Hey Sean! So you slept all morning and then we both stayed asleep until about 1:45. Bob was your nurse today he is GREAT and super funny! You knocked out your gtube with your hand today so they had to replace It temporality until they will do it tomorrow with a radiologist. Also, your test came back and you do have MSRA in your nose meaning visitors have to suit up in gloves and a gown because apparently it’s super contagious. But since we’re family we don’t and we’ve been around you. The problem with MSRA is it’s resistant to lots of antibiotics so they put you on a very strong antibiotic to try and kill it. Your heart rate and respiration’s were really good today especially since you’ve been off the ventilator. You are still getting 30 percent oxygen but you are doing great. You smiled a little bit today especially when we told you you had explosive diarrhea they had to suction it too which is even funnier! Derek rice came to visit you too today dads friend from work. I love you <3

4 August 2018

You are in pediatric ICU at Swedish medical center. You had diminished lung sounds especially in the right so they put you on this thing called the bypap which helps you breathe through positive feedback giving that extra boost you need. They all changed your trach too which really did a huge difference! It’s now called a chaley? Anyways, you are in ICU because you have a staff infection in your lungs as well as pneumonia in your right lung. The kidney doctor said you were drying up meaning you were in acute kidney failure because you were so dehydrated. So they have been giving you tons of fluids and antibiotics to kill the infection. You slept all day today I didn’t really see you awake really at all but that’s good because you’ve been so sick and we just had no idea! We’re much more relived now that you are in ICU because the nurses and doctors know how to take care of you where in the rehab center they didn’t have the resources too. Anyways, your looking better keep it up! :)

3 August 2018

Hey Sean! You had a very rough day/night last night! Your respirations were 60 sustained today as well as some kidney trouble so Craig decided to send you to Swedish. Er had a look at you first running urine,blood, and ct scans. Your blood count was abnormal as well as you white blood count as gone up. For some treason you will just not calm down. The doctor in the pediatric icu seems to think it’s because of neurological storming that can not be turned off(meaning it’s hard for you to turn it off) but they are still treating you for pneumonia because you have it with broad spectrum antibiotics. They are also trying to calm you down as best they can. I really need you to get better Sean for me okay? I love you so much and I miss you <3

2 August 2018

1 August 2018

Hi Sean! I miss you! I miss hearing your voice and talking to you<3 you had a pretty good day! You were pretty emotionally liable meaning one minute you were crying the next you were smiling. What really calms you down is music and movement so like rocking you back and forth in your chair really calms you down. Bridget(OT) and Jenny(PT) co treated you today and worked on head movement and control and vision things as well. You did so good for them Sean!! You also had a new speech lady Kimberley and you responded way better than you usually do. You do really well tracking with your eyes! Dave was your nurse tech today. Oh and you met the other 15 year old Naija and watched her play games and you wouldn’t stop looking away;). You stormed off and on all day today but nothing too crazy your heart rate only spiked one time during the day so they gave you oxycodone a pain Med and boost bar an anti anxiety med! I hope you sleep with the angels I love you❤️❤️

31 July 2018

Hi boo baa! You had a really good day today! Sorry I forgot to write yesterday! Anyways Haley was your nurse tech she is soooo good and you seem to love her you always smile with her and look at her! You slept all night and then until about 9:15 when Haley had to wake you up which you were not too happy about 🤣 you are still on antibiotics so you take a little longer to transfer but that’s ok! Jenny your pt got to on the tilt table which is really good for bone health, blood pressure and overall health! You did so goood Sean. Last week you did not tolerate it but this week you did! Good job buddy! You also had ENt clinic today too which look at your trach and to see if there is damage to your vocal chords but there was nothing you have no damage so hopefully after your cranoplaaty(putting back your skull on) they will take it out! Which is super exciting Sean! You don’t seem to like speech but I get why she’s not my favorite but Jenny and Bridget are great! I love you Sean so much ❤️

29 July 2018

Hi Sean! You are doing way better today! You have a really hot nurse tech his name is Dylan😍 hehe he’s super cool though you seem to really like him. I’m sure it’s nice to have a guy rather than a girl! We took you outside today with aunt Debbie, Nina, and Rachael and Dylan and mom and dad and me! It was fun and you liked it! You were laughing a lot mostly at memories like mattress surfing and when you used to get constipated and run around hahah! We all went to chapel today downstairs on the second floor and it was a great message about God vision for us and how it’s not always our vision for our life. You also watched some of the jungle book wit Dylan you were smiling! Sissy slept for like 3 hours today what a suprise;) and then went to the gym😎

28 July 2018

Hey Sean! Oh my goodness it was a crazy day for us! You had a great day though you slept for like 3/4 hours! Sooo aunt Debbie, Nina, mom, and Rachael and me wanted to drive to Fort Collins to check out the downtown so we figured dad would be okay by himself for a few hours. So right when we were pulling into CSU after like almost a two hour drive dad called us and said he was feeling funny and thought he was gonna pass out..sooo we immediately turned around and he called 911. They took him in the ambulance to Swedish hospital and Gabe him 1000ccs of fluids! He was dehydrated! And also anxious. So we took him home once we got there but he was stilll struggling after about and hour so we headed to the Er and on the way to the Er mom got stung by a bee! But since dad had been there already the doctor Gave him a anti anxiety medication and that has seemed to really help him!

26 July 2018

Hi baby! You had a very rough night last night. Your heart rate was from 150-190. You were sweating a shit ton and they put you back on the mist because the oxygen in your nose wasn’t enough. They tried a bunch of medicine but you were crying and sweating and moving around all night and didn’t get any sleep:( hopefully tonight you can! They have been adjusting your medicine to hopefully make it your heart rate better. You weren’t able to participate in therapy today because all the drugs you are on to manage your heart rate and pain. We didn’t really see you much today because it’s hard to see you like this but don’t worry you have a 24/7 nurse tech who is in there with you and the nurse Tonight is really good she’s super on it. Hopefully the storming will get better soon:) mom sissy and dad went to golden today it’s a little town like 30 minutes away where Coor’s light was founded and hey have the picture from it. It was a cute town but Fort Collins is WAY better. I miss you babe<3

25 July 2018

I dont have any photos of you tonight babe because you are having a very rough time! You are in the process of a neurological phenomenon called storming. With you, you get very sweaty, your blood pressure and heart rate goes up today the highest I saw it was 190. And you posture. You cry and and moan too which is hard for us to see. Your doctor said it’s completely normal for your injury your brain basically can’t balance itself chemically....he refered to it as fireworks four of in your neurons so it’s not you it’s just your brain. They put you back on the trach mist because your o2 levels were too low...but that’s okay it’s just because you were hyperventilating. The doctors also said you wouldn’t remember this....hopefully you can have a good night we are very worried about you we love you Gods looking out for you <3

24 July 2018

Seanyyy! You did so good in PT today!! You held your head up for 10 seconds 5 times! You also were able to look around more and look at the letter V and K when she asked you to look at it with your eyes on the wall! Daniella our favorite was matching with us so we had to take a picture! You got a custom made splint from OT today hopefully they won’t have to cast you! You were pretty stormy all day today. You had a rough time in speech therapy but playing Elton Jon and the beejies helped you calm down. You were probably the most stormy I’ve seen you since being at craig tonight. Your heart rate was 150-170s for about 45 mins the nurse too like 15 mins to get in the room and then it takes another 15 to have it work..since you are red capped today respiratory gave you some oxygen in your nose to help you because you seemed to be overwhelmed. You will be getting ambimen a sleeping medicine so hopefully you will sleep though the night. It hailed and rained super hard today Sean it was crazy

23 July 2018

Hey Sean! You had a full day of therapies today including OT, PT, and speech! They capped your trach with a red cap meaning you are now re learning to breathe with your nose and mouth yay!! It’s exciting hopefully soon that trach will be out! You were not happy today in PT when we tried to put you in a standing chair you started crying and moaning so they just worked out your legs instead. Your pee bag came undone and you got all wet in PT so you didn’t get too much done. In OT she worked on your hands and arms and played some music and you loved it. Daniella was your nurse tech today you really like her and you always laugh when you are around her. Your in bed now and are going to have your shower hopefully it goes better than 2 days ago:) you are the cutest when you yawn and laugh. You like things a very certain way and get annoyed if it’s dosnt end up like that. You definitely like being in bed the most but I wouldn’t blame you it’s so comfortable!! I love you Sean <3

22 July 2018

Hey Sean we tie dyed today. We did it with mom dad and with my favorite tech KAyliee. You did really good you were kinda pissed tho that we took you out of bed but you got to meet the recreation leader and she found out all about you so when you are ready to participate you will have it all set up. You took a nap today I waited until you fell asleep when we came back. Then I went back to take a 3 hour nap! I love you so much Seany <3

21 July 2018

Hi Sean! You were so tired today but that’s probably from all the stimulation/movemet you have been doing. You were kinda stormie today because you were prob tired, overstimulated but that’s okay. Your nurse tech kaliegh is great! She knows what’s up<3 I spent the whole morning with you laughing and joking around then we went outside and you lasted an hour and 45 minutes in the chair! Good job buddy! You still get pretty upset when you are in for too long so we just lay you back down and it’s all good! Mom took a nap with you in bed today because they had the afternoon shift meaning I went back to nap after they came in around 11. Today you have your shower and program: you hate the shower but I get why. You were very upset today after the shower because the tech was a rookie and didn’t know how to control your head mom did some stretching in bed to keep your muscles moving :) you had a very releaxing day Sean <3 I didn’t do much either I really don’t know where the time goes. I luv u

20 July 2018

Hey love bug I don’t have any photos of you today. You are pretty sick we don’t know with what yet though. They are pretty positive you have pneumonia that is turning into has turned into sepsis. Sepsis can be very bad especially if you go into shock but they caught it early or whatever is happening early so that they can treat it. They are treating you with an IV drip of fluids and antibiotics so hopefully help get rid of it. They are putting a pick line in which goes straight to your heart it’s more effective if you need antibiotics or anything! You are also getting lots of fluids. We hung out with Auntie Debbie, racheal and Nina today and they camr and talked to. You’re heart rate was high and low all day but it was lower when we last checked on you and you were sleeping which is great!!! Hopefully we can beat this thing and get you moving on to therapy Monday. Oh also in speech today you were able to use your eyes to communicate by looking at yes and no flash cards. Yay!!!
So today was an eventful day Sean hahah. Your nurse tech Emily was amazing! She actually had a TBI but Sean you wouldn’t even be able to tell! We took you outside today twice because you didn’t have lots of therapy today. You were very happy and smiley today which was amazing to see! So funny story Sean! So Emily noticed that your external catheter had blown so she decided to get you a new one! So as she was cleaning it and just about to connect the new one she nyou waterfall peas all over her arm but she grabbed a blanket real quick and omg Sean it was so funnny because you were laughing the whole time before and after it was so cute! But ya you peed all over her and then all over your shorts and the blanket and your shirt...so we got you all cleaned up that takes a good 30 mins then realize you pooped!Omg Sean! You were just laughing up a storm Sean! We Showed you the garden and rock granden and you met Matt today from the spinal cord unit he’s super funny and nice,you had a good day

19 July 2018

Sean had a bone scan today of his hips and elbows to check for HO where extra bone grows in your joints and can be very painful. Sean also had a little bit of OT. His Tech today is Dave and nurse today is Joe. Sean held his head up today with the help of his Pt girl for 15-20seconds!! Yay! They worked on Sean’s tracking abilities with his eyes to his left and right because he does better to his left(from the injury). He was laughing a lot today which was very cute to see! :) he was got a tray today for his wheelchair so his arms would be more comfortable. He wasn’t able to open his mouth today for the speech therapist. He wasn’t able to blow the tissue today with the speech therapist but that’s okay some days he can somedays he won’t. Pt stretched out his shoulders and worked on him sitting up.

18 July 2018

Sean’s second full day here at Craig hospital. Today he was very alert probably because he was able to get some sleep last which is super exciting because you haven’t gotten sleep in who knows when! You had joe today as your nurse he was your nurse last night too:) you have an awesome wheelchair that is perfect for you expect the head rests we are working on that part ;) You had therapy starting at 10:00an with speech therapist Jenny she’s pretty cool she’s kinda old and big but she seems super nice;) and then we gave you a break to lay down because that really helps you...it’s hard for you to sit in the chair all day long...and especially since you are not used to it. You can tolerate up to two hours then you are done. You then had PT with Jen she was working on your mobility and seeing your range of motion she’s the one pictured here steching you out. You were very tight but that’s no surprise since you are a boy hehe and then you had another break and then had OT till tmrw Sean <3

16 July 2018

Friday day at Craig was a success for Sean. He got there at about 2:30 in the afternoon after flying with mom from Reno. Meanwhile sissy and dad we’re on the drive which is a good 15 hours. Sean got a nice bed that is considered to be low stimulation it’s almost like an adult size play pin but with high foam walls that are neutral color. Sean’s heart rate hasn’t gone up crazy like it was in ICU. He’s going really well here at Craig they had him do PT and OT the first day he was here and then had him rest for the rest of the day which is good for him. Mom got to meet his doctor, speech therapy, oT, PT, case man aged and what not. She was overloaded with info the first day. She stayed in the family housing super close by hospital and was also able to climb in bed with Sean. I have a bed that’s called a low stem bed meaning it has high walls and nothing around it to keep stimulation at a minimum. It’s very comfy and I love it so much thats I’ve been able to sleep in it every night <3