Honeyed Heart

Today was a pretty good day overall. We were finally able to start his new feeds. We got all the way up to 45 ml/ hr and were able to shut off his TPN. We will keep his lipids running until his stomach can tolerate adding in the olive oil for fats.

We added in another dose of diurell to continue trying to diarese him. He looks good today but they still want him more negative to keep helping the fluid around his lungs.

We were able to meet with the neurologist to get the results from his brain CT yesterday. She was able to compare it to his MRI he had in 2019. She said that they looked very similar and there isn’t a lot that it can tell us that he can’t tell us by how he is acting. Hope that makes sense. He is doing things he used to do and able to remember things from a year ago which are all amazing.

I was also able to talk to his Dr. about doing his cares every 4 hours instead of every 2. That made a big difference already today. So, as of now, they only need to get blood pressure and temperature every 4 hours now. They are still needing to listen to him every 2 hours but hoping that can change soon too. Once we get back to IMC status, then all his cares go back to 4 hours which helps a lot with his mood.

Being touched every 2 hours SUCKS. He can’t even really get a nap because they inevitably come in and start messing with him and he wakes up. He also gets a shot twice a day for blood thinners for the clot in his left IJ. He gets megs in his J tube, or IV every hour or maybe 2 hours but it is a LOT.

Not that we are anywhere close but once we start discussing going home, we will have a lot of med times to move and change so that I am not getting up all hours of the night to give meds. But, unfortunately, many are every 8 hours so I will have to get up at least a couple of times to do meds overnight. It sucks but at least we would be home. I get up at least a few times at night right now anyway so what is the difference.

Tonight we did something super fun! We got out his new projector and projected a movie onto the closed window shade and turned the couch around and had a movie night!!! It was so fun!! All the nurses were stopping in and admiring our fun set up! He liked it but fell asleep really fast which is totally fine with us. My mom and I put on a cheesy movie after he fell asleep. We will have to do it again! Video on my story on Facebook & Instagram. It was a small thing but made living here feel special.

That reminds me of our wedding video. Our videographer asked Scott something he loves about me. He said that I am fun and that I am always coming up with fun stuff that we can do together. Scott always made me feel perfect. He made me feel like I was the funniest, the prettiest, the most fun, the most incredible person. I felt like my best self around him and I miss that. I loved being around him because I thought the same thing about him. He was and is THE most amazing human. He was so perfect for me. I loved everything about him (except his love of Applebees and his terrible gag reflex – that is a story for anther day).

I hope Maxley thinks of me that way. I love to make him smile and I would do anything to make his life even a tiny bit better.

It is 10:32 and I am exhausted so I can’t do a WHOLE thing but I will give a little insight into our day.

The biggest thing we did today was took him down for a head CT and chest CT. They scheduled the chest CT to see how much fluid was building around his lung to see if they will need to drain it and it looks like there isn’t much there which is good. They also always do a head CT after ECMO to see if there is anything concerning. He got one after he was on ECMO as a baby so it will be interested to hear the results and compare them. We didn’t hear back on that today.

We had to sedate him and it did NOT work. The dose they gave him should have knocked him out but it did not. It took a lot of coaxing and squatting to hold his hands through the donut machine thing in order to hold him still long enough to get the imaging they needed. Then, once we were done, the versed seemed to hit him and he slept in my arms for about 4 hours.

We went up again on his vent settings so he is on a lot of vent support. We are one step below intubation. Not that they are talking about that yet but just sucks. We have several IV meds and have just taken some large steps backward.

Everyone keeps apologizing to us and looking at us like our dog died which makes it harder. I kinda wish everyone was more nonchalant about it and I prolly wouldn’t think it was such a big deal. The surgeon did come in today and said that this is all fixable. Which I didn’t know I needed to hear but I did feel better after that.

I think you kind of forget that he is currently in the ICU and on a ventilator. I mean, relatively speaking, he is doing amazing but in the gran scheme of life, he is really sick and that hurts.

We have been here over 6 weeks and we are in a worse spot than we were 6 weeks ago today. I miss home. I miss life. I miss my Maxley and I am sooo tired. I am so sick and tired of people touching him and him just begging for a break and a freaking sip of water. Both of which I have to constantly tell him no.

No, you can’t have a break because they have to do cares and get vitals every 2 hours and no you can’t have a sip of water because your lung got punctured 6 weeks ago and your health is declining so you can’t have a drink.

I am sad. I am just so sad and overstimulated by ALLL of the noises and all the decisions and the talking and the explaining. I am just sick of it all. But, I don’t get to be because we get to get up and do it all again tomorrow and the next day and the next long while.

Please keep the prayers coming for Maxley’s health to start improving. For us to take some big leaps these next couple weeks. We all need it.

Today sucked.

He had a good night last night but I woke up with a headache and Maxley was super super puffy. Like could hardly open his eyes puffy. When the Drs rounded they mentioned that his x-ray is worse and he is obviously retaining fluid. They mentioned putting in another chest tube and I immediately started having heart palpitations and wanted to scream. (Spoiler: they decided not to). But, we weren’t sure so they had to shut off the food to make him NPO in case they needed to do the procedure and then he can’t have anything by mouth.

They feel stuck because he is maxed out on his diuretics and his body isn’t really responding well to them. His BUN is high meaning he is intravascularly dry and they can’t go up on his diuretics because of his creatinine (kidney function).

They ended up coming back a couple hours later and saying, nobody wants to put a chest tube in this kid (because of what happened) and so they made a plan to try and avoid that.

–> Even after that my head was pounding so bad and I felt nauseous. There were people in and out and I just did not feel good. I was dizzy and ended up napping through his PT and I slept for almost 2 hours. I woke up with the headache still but felt better.

They put him back on CPAP to give his lungs more respiratory support and they put him back on a bumex (diuretic drip). So, getting put back on CPAP and having an IV drip means we are back in the ICU. Ugh.

It also means that he can’t eat or drink anything. Try telling a sick 5 year old he can’t have a sip of water or a grape. It is SO unfair. That alone makes me want to break down. He asks for food or drink every minute or so and it sucks so bad for him.

They are putting him on a no fat diet. They will switch his tube feedings over to something called Vivonex Ten which has almost zero fat. It isn’t good to be on zero fat so they will likely bolus him some olive oil to get some healthy fats in him depending on how much he takes in by mouth once he can eat. He is still NPO (no feeds) to see if less volume helps too. They put him on TPN to get him some nutrients via his IV.

They are giving him more respiratory support because there is a chance his xray isn’t really worse but maybe his lungs are slightly collapsed and so they look worse on x-ray.

This plan is already working. He looks SO much better. Better than the last couple days I think.

The no fat diet will take a long time to even know if it is working so I am not sure what the short term goal is. We would have a faster answer if we just put in a chest tube and biopsied the fluid to know for sure where the fluid is coming from but they weren’t going to do that today at least. Maybe tomorrow, maybe we can avoid it all together. I am terrified but I know that it would get us the answers we need.

We are just trying to keep him up and moving to get fluid off too. We are weaning narcotics and he has been able to stay awake longer periods of time so that helps. He stood some today and only took one long nap but was otherwise awake. That is a big change from constant naps on and off all day and night.

He got an echo today which looks mostly unchanged but there was a minor change they are hoping is due to the fluid overload he had. He got music therapy and PT and OT today which is awesome.

He still isn’t really smiling but is definitely showing his old self as far as things he says, his looks, etc. It is nice and reassuring. I just need to see some giggles and smiles. I hope he is happy. He just seems so sad all the time.

He also had a low hemoglobin today but not dangerously low so they will continue to watch it. But then, this afternoon he pulled out his pacing wire and they were worried about his heart bleeding because of it so they checked his hemoglobin again this evening and it actually went up so it should be ok. We shouldn’t need the pacing wires anymore anyway but they tend to leave them in until discharge.

His glucose was also very high this afternoon (350) and so we had it rechecked but it was a false alarm and had been compromised.

Last night was rough. He just didn’t want to sleep. He wanted a hug every 38 seconds. He I think he is uncomfortable because he is so fluid positive. He is grunting so much and we had to go up on his oxygen support. He is up to 5 liters and 100% oxygen.

We are in a tough place because we can’t go up on his diuretics due to his kidney function.

We are kinda maxed out on his diuretics at this point. We are hoping that just forcing him to be up and moving will help get the fluid moving and get him peeing. We think that the change is because we moved from IV diuretic to enteral. Today, we went back to IV for the night to see if we can just get some fluids off

Seems like we are kinda at a standstill and can’t make any progress until we can get the fluid off. It is hard to get him up and moving when it is hard for him to breathe. Ugh.

He did get to sit in our bathtub today which is fun! He can’t get his sternum wet for 2 more weeks while he is on sternal precautions but he got to sit with some water and play.

His culture from his chest tube came back positive for MSSA again so they put him on the correct antibiotic.

He got to play with the puppy, Piper, again today and he really enjoyed that.

We are also playing the constant game of trying to clean his gtube. It is leaking so bad and it makes him itch and bleed. We use belly bands to try and help but he is just so itchy.

He ate 3 good meals today too which is great. He is asking for food and snacks.

Pray for Pee!! I think if we can get some really good pee days and diuresing then, we will start to talk about MAYBE going home at some point in the not so distant future.

Day 40 and…. we moved to IMC!!! This means we are no longer in ICU. IMC stands for Intermediate Care. It is surreal that we are no longer in intensive care.

40 days is a long time, I do know that but it seems weirdly fast considering he had a cardiac arrest 38 days ago and survived some of the absolute worst trauma imaginable.

It was fun to have him eat some meals today. He is enjoying be able to choose what he is wanting to eat and that is nice to give him more control.

As of yesterday he was getting all of his nutrients through his J tube but now that he is eating some orally we want to try to move some of his feeds back to his G tube. He has been at 48 mls an hour (which is his full calories he needs) and so we went down to 38 an hour on his J and did 10 ml an hour on his G tube which is working well except…

His GJ tube has been leaking terribly, especially now that we are putting food, he is drinking and we are feeding the G, it has been bad, which in turn makes his skin around the site rashy and bad. It is a constant battle. I think we went through like 5 outfits today because he was leaking so badly. Which sucks because we don’t have an easy way to do laundry.

Plus, we have to dress him because he picked the scab off of his chest tube site and now it is NASTY. I mean NAAAASSSTY. The surgical NP even made a face. They cultured it and of course it came back gram-positive so we had to start him on an IV antibiotic. Ugh. Always something else.

Glad that my updates have been boring! 🙂 That is always a good thing in hospital life.

I totally spaced writing an update last night. My girlfriend, Kalie was here late. She is getting married in 20 days and we were doing some wedding planning and final details!

We have had a good weekend. He has been sleeping a lot but we are trying to do stuff when he is awake. We are playing, working on his PT and OT exercises and we are able to take him for walks around the unit in his wagon. We are explaining more and more why we have to do certain things. Like, why we need him to get up and try to sit, stand, walk, etc. He isn’t wanting to do those things so we need to explain why to him so that he cooperates. It doesn’t always work but it helps some. He is HATING when they listen to him with the stethoscope, I don’t know why. He doesn’t even mind his shot he gets twice a day but when they listen to him, he is livid. It happens about 15-20 times a day too. Every doctor that walks in listens to him, the respiratory therapists, nurses every 2 hours, etc.

I think he hates that he has no control over his own body. He has sensory processing disorder and just being in the hospital has been really sensory overwhelming. I feel so bad for him. We are trying hard to give him choices on things like which leg to do his blood pressure cuff on every 2 hours, etc but there are things we HAVE to do and that sucks. It all just sucks. All of the cords, everybody touching you constantly. He can hardly move to the sitting position by himself so he is basically trapped in whatever position we put him in. He is completely reliant on us for EVERYTHING and that is really hard for a 5 year old.

He has been able to take sips of water from sippy cup and just tonight we were able to give him some bites of food.

We are down to 3 Liters of oxygen and working on weaning his narcotics more. We added another diuretic to get more fluid off as he is looking a little puffy but all things are moving in the right direction.

So glad to have had some good days and hoping they just keep coming.

I probably shouldn’t be writing late at night after being up since 3:40 this morning. I am exhausted and mentally frustrated. Someone tell me to shove it.

“It could always be worse” – my life motto since 2018

I just spent the better part of 2 hours trying to get him to sleep and he still isn’t sleeping. There were machine issues, things not working and then we need a blood pressure and then his blood pressure is high so we have to give him a med for his BP. Then, he needs his meds in his J tube. Then, he needs his lovanox shot. Oh, his oxygen is low. Oh, we need to redress his gtube and listen to him. By then he peed again so we need to change his diaper. And, we need a temperature and to basically count every freckle on his BODY!!!! UGH – told you I shouldn’t write when I am crabby.

It isn’t the nurses fault at all but there are SOO many things they have to do at 8pm and they have another patient tonight so they are running back and forth but he is exhausted at the end of the day. (FROM NOT SLEEPING AT ALLLLLLL) and so he is OVER it. He doesn’t like to be touched by anyone when he is tired and they have to touch him CONSTANTLY.

Ok, vent over.

So… Today was great actually!!! We moved from CPAP to high flow which is huge!!! We went to 4 Liters and hoping we wean more this weekend! It should be much more comfortable for him and he got a smaller cannula for his nose!! He did SOO amazing today. He stood (sorta) and played more. We swang and sat and I even got a little giggle. It made my day. He did PT and OT twice today which he does not like but it is so good for him. We are really working on making him dryer so more output than is going in and a good way to do that is to be more active. We are telling him the more we work, the faster we get to go home to our puppy!!!!

We weaned his ativan today too which is one of his 2 narcotics he is on. We are going to hopefully wean them every other day. I might not write about that everyday since that is boring but hoping to be off of them in a few weeks with an every other day taper.

We also got our WISH today from Child Life. They have a program where you get these very special prizes for having long stays in the hospital. The parent gets to choose the prize and then they come and present it to the kiddo. They make a big deal of it if you want them to but he would NOT like that right now so she just brought it to us.

We got a projector and played with it all night. It has bluetooth and internet so Netflix, Hulu, Disney, everything is loaded right on there!! It is SOO cool!! Anyway… that is so fun.

We have a BIG adventure planned for tomorrow so tune in, maybe I won’t be so crabby!? Odds aren’t great.

Today was so good!! He was more himself than he has been. Sorry, I know I say that almost every day. But, it seems to be the case. We are getting glimmers of Maxley and he is doing things that prove to us that he knows who he is and was. He is still the same kid that came to the hospital which is UNREAL!!! I was so so so scared that we lost him even when we knew he was ok physically. I just assumed that we lost him mentally. But, once again, he is proving us all wrong.

We made 1 big changes today and a few medium ones. The first big change is that we dropped our last IV infusion today – Bumex. So, he still has his PICC (central line) but, there is no continuous infusion going in. So, there is less cords that we have to worry about when getting him in and out of bed, going to the floor, etc. It kept getting tangled, pulled, etc. He still has meds that go in the IV line so we will be keeping that and hopefully getting off or able to move enteral.

We also went down from 10 to 6 on his vent settings so he is getting less support. That is a huge jump. He is satting more in the low 90’s now and they want him above 92% so we may need to go up on his FiO2 (oxygen percentage) but we will see how the night goes.

He got off his enalaprin blood pressure med and added in a different diuretic since we dropped the IV bumex. He is still on a different blood pressure medication but he may need one for a while.

He got to play with a puppy again for a few minutes and I even got a glimmer of a smile today too. He sat up more and was actually interested in playing some! When he was done he threw his toys which is EXACTLY what he does at home, so there is that!

Ashley also brought his swing up tonight and he sat in it for a long time!! It was soo good to see. He swings for HOURS at home and so in preparation for surgery I wasn’t sure what we would do but Ashley found this on Amazon and it works perfectly.

I am starting to see a tiny little night light at the end of this dark dark scary tunnel. I am so thankful for this outlet to be able to vent to and also post our triumphs. I feel this Team Maxley is the most supportive and caring group of people in the world and I am so lucky to have all of you on our side.

He has been sleeping 8-2am pretty consistently. This morning he woke up at 4am and pulled his NAVA catheter out of his nose so the machine kept beeping and beeping and BEEPING. So I got up and they were waiting to hear from RT to see if they could hold off on replacing it but they finally came in about 5:30 and put one back in. Then we found out at 7am rounds that they were gonna pull it anyway. Ugh.

He was much more himself today. Still very bothered by being touched and poked and having to do constant things to him but he is more content. Also, weirdly somehow more crabby at times. When he doesn’t wanna do something he says “stop it.” It is VERY Maxley.

He is still just asking for Water all day long. Like every 28 seconds. Poor kid.

The big change today is that we moved to CPAP on the vent. This is a big step that he is handling really well! He is off of both of his IV narcotics and they are moved to enteral, which is another big step.

We have been trying to get on the floor and play some but he doesn’t last long at all. He did sit for a few minutes today all by himself!!

There isn’t much to say these days which we love. He got another ECHO yesterday and it looks mostly unchanged which is good.

Today was rough for me mentally. I just hit a wall today where I was sick of talking to people and consoling him. It isn’t his fault but he is so unhappy that it is exhausting trying to negotiate and console with him. There are constantly people coming in and asking questions and going over his night and then I have to say to him, “no ouchies” and he is scared and I am just feeling OVER IT.

It is hard watching him suffer and know that this isn’t life. Today he asked to go home and it breaks my heart. I hate how much he has had to endure and he just doesn’t understand why. I am constantly explaining why we have to do certain things and why we can’t do other things.

I can’t be over it though. We have such a long road ahead. I just don’t feel like I can take a day and feel sorry for myself. So, I took an hour and put headphones in and watched Netflix and ate a snack. It is just one of those days, probably hormones. Maybe tomorrow will be better. He needs me to be better. He needs me to be present and positive.

Our first full day in our new digs. It is so much nicer in here. It is bigger and has way more storage. The layout is better too. Our other room was so much smaller and the recliner/ rocking chair was right in front of the fridge so we had to get up anytime they needed to get at his food or if someone needed something out of the fridge. This set up is just much better. We did dare to unpack even though we could move again any day, or, we could be here for months. Hard to say.

I did get a sliver of hope today when the pulmonologist came in. She said that she felt like he could maybe be on quite a bit less support than he is on with the vent. Even hearing that made me feel hopeful that we won’t be in here for months. Potentially false hope but hope none the less. We were able to wean his NAVA level to 3 from 3.5, woop woop.

We also had our usual round of specialists come in… hematology, wound, pulmonology, cardiology, pain and palliative and endocrine even came by.

We are fully off the IV precedex and moved over to the enteral version which is clonidine. That seemed like he didn’t notice much of a change if at all which is nice. Tomorrow we will move off of the IV versed over to the enteral lorazepam. That switch will be rougher.

Today was a much better day. Maybe it was because Ashley spent the day up here and played with him a lot or maybe he is just better but either way it is a win. He slept a lot and played a little. We are still working on sitting which is hard to see. It is hard to see your feisty 5 year old acting like a baby. He can’t really talk, he can’t sit, he is back in diapers, in a crib, unable to do anything for himself, it is all just hard to watch. It is sad. I miss my kid. He is physically unstable and requires a lot of help to move around and maneuver.

There is CONSTANT wire and cord untangling. He has SO many cords. Let me see if I can count them all.

• 2 IVs
• GTube
• JTube
• Heart Rate Monitor
• Heart Rhythm
• Respiratory Rate Monitor
• Oxygen Sats
• NAVA Catheter
• RAM Cannula Breathing Tube

I don’t know how but they are constantly tangled. Even if you move from the crib to the chair, they are in a knot and most of them are super important so you have to be super careful to not pull them out or tug too hard.

It is exhausting.

He plays for a few minutes and then sleeps for about 10-20 minutes. He just passes out wherever he is so he slept on the floor a lot today. I think he likes being able to just stretch out while someone sits next to him.

We are so grateful to have many more good days ahead than bad. But, living here is a constant reminder of so much trauma. The sounds, the smells, the rooms, it is a lot. It is really really hard to be here. But, I can’t even really think about going home. So, for now, we live in these 12 hour chunks of time. The new nurse comes on at 7am and we tell them all about Maxley. What he likes, what he doesn’t like. Who we are, our story and they get to know us. And then at 7pm, we do it all over again but we walk them through his nights and how to keep him sleeping and what he likes at night, etc.

Then, at 7am, we do it all over again. It is the definition of groundhogs day sprinkled in with maybe some different food, a shirt from my rotation and a different nurse.

Hoping to make some steps tomorrow. Thank you for the prayers. I can’t even keep up with the messages and prayers and comments. I am forever grateful for this Team Maxley community. If anyone wants to match my hospital attire and get yourself a Team Maxley shirt to support us, we would LOVE it!!! 🙂

There are a few different logo color options and tons of different kinds!! Shop Here!!

Another day of Maxley not sleeping. He didn’t sleep last night and all day today (and yesterday) he has been sleeping maybe 10-20 minutes at a time and it has made for long and rough days. He just lays there but isn’t happy with anything. He didn’t want us, didn’t want to be held, didn’t wanna not be held. Doesn’t want me to look at him, doesn’t want us to kiss him either.

All he wants is water. He can’t have anything to eat or drink orally because he could so easily asperate because of the amount of air and pressure going into his lungs. He can have a little sponge dipped in ice water every couple hours. It is all he wants. It makes him so happy and I hate that he can’t just chug some ice water.

Today we started the process of moving his IV narcotics to enteral. It is nice because the enteral (oral) versions last much longer. He will get less doses through the day instead of a constant infusion of the med. It is better for the weaning process too. We will be here for a long time because of his lung issue but normally, you can go home on enteral too.

I got to leave and go out to brunch for my sisters going away party. She is moving to Scottsdale the beginning of October. 🙁 So that was so nice to get out and have a mimosa (or 2). I also got out to bring Pam to the airport which sucks. She was here 2 weeks which was amazing but she had to go home.

The exciting news today is that we got to MOVE ROOMS!!!! This is a BIG deal in the hospital world. The rooms 1-8 are for the very severe people. We were in room 7. We were originally in room 10 post op but then when he got put on ECMO they moved us to room 7 and we had been there ever since.

They want the really sick patients up at the front of the unit. The rooms are on 2 sides of the hall and by the nurses station and the Dr. offices. Then, rooms 8-13 are also ICU with a big sliding glass doors in case of emergencies and rooms that can be turned into an OR if needed. Then rooms 14 – 25 are the IMC (intermediate care) side which is a step down from ICU and where you would eventually discharge from. They are larger which is super nice and have a wood door that opens and closes like a normal door. We are elated to be down here. It is such a huge deal and I can’t believe we are already here.

One month ago today. We have been here for one month.

I don’t feel like it has been a month but when I think about everything we have gone through, I can’t believe it has only been a month.

A month is a long time but time just moves different here. When you know you aren’t going home any time soon you aren’t counting the days so much. You just pray that you get to go home with your child. I have stayed here for just a few days and it feels like weeks so I don’t know why this feels different. We have our routines and we just make it work.

My mom and I still have Ronald McDonald so we have been taking turns staying down there which has been a life saver. I posted a video on my story of our room if anyone wants to look today. One of us makes coffee in the morning, we heat up some breakfast if we have an egg bake or something. Or we order breakfast from the hospital cafeteria. Then the rest of the day is just played by ear for meals and working and surviving. We typically order dinner via doordash or grubhub or something.

His x-ray looked the same as yesterday which is great considering this was his first one that he was extubated for!!!

Today was just rough. He is restless and nothing makes him happy. At home he is a mover and here he is stuck. He can’t move on his own or even sit on his own. He is completely at the mercy of others and people just keep touching him. He just wants to GO!

I feel like a lot of my day at home with him is using humor to get through the day and here, everything seems to make him mad. If I do something silly he gets mad and is just frustrated.

We tried to get him walking today but his legs were not working at all.

We think it will be rough for a few days but we need to get through this. We haven’t even started weaning meds in over a week so we have a rough rough road.

Prayers for patience for me and my mom!

What. A. Day… He is extubated!!!!

1:00, they pulled the tube out and he is doing amazing so far.

I will start at the beginning.

Yesterday morning during rounds they said that his lung had collapsed. They were discussing the options of what to do. The first option was to sedate more, go up on vent support and try to pop it back open and give him days or weeks more of support. The second option was to extubate and see if that will help/ fix the issue. They did a quick brainstorming session and the surgeon and intensivist decided that it was better to give him a chance to extubate and see how it goes. So, yesterday morning, 7am rounds we got the green light to extubate. We stopped feeds, gave steroids’ and upped his vent settings to try and pop the lung back open prior to taking the tube out.

I got to tell my mom, she cried. I got to call Ashley and tell her, she also cried. I got to tell Pam when she got in and she cried. It was amazing!!

But, in true ICU fashion, there was other more pressing issues on the floor and they ultimately decided about 4pm to wait until this morning to extubate because there was too much going on. The Dr. was so apologetic but we TOTALLY understood. We have been that emergency more times than I can count and so we get it. Maxley doesn’t know the difference and we are ok.

So, this morning, we waited, and waited and FINALLY they came in and extubated him. It was incredible. I am so so so happy but also very cautious. There is still a chance they will have to intubate again and or have his diaphragm surgically plicated. He still has a long way to go and so I am trying to curb my excitement. But, as of right now, he is breathing on his own. It is amazing. His lungs are doing everything they need to do to oxygenate his body and his perfect heart is pumping it back through the rest of his body and it is incredible. I wish I had another word for it.

I spent the rest of the day rocking him. He slept so good and hard and looks amazing!

This evening we switched out his bed for a crib since he already started rolling on his tummy. He is normally a tummy sleeper so he will be so happy.

He is trying to talk but his whole body is shaky and weak. We got him sitting some today too. I haven’t cried yet but it still doesn’t feel real. 28 days. He had been intubated for 28 days. He had a cardiac arrest and was on ECMO. He bled out twice and is still here.

I thought he was a fighter before. This is insane. He shouldn’t have to fight this hard. Nobody should but it isn’t fair to make 1 little person fight over and over again. Just for a chance to grow up. Ugh.

The cherry on top of the amazing day that we had was that in rounds, our Dr. called Maxley the hero of the day. Hero. He is a hero. He is incredible.

She came back in this evening too just to visit and said his x-ray looked so good today and it gave that extra day for him and an extra dose of steroids so maybe that extra day was a blessing in disguise and he will have an even better outcome now.

There was more that happened today too Up on meds, down on other meds, met with other specialists, talked about platelets and many more things but at the end of the day. My son is breathing on his own.

This day is unreal.

Thank you for the prayers, kind thoughts and really any thoughts at all. I know you all caring is the only reason I can get through this. And, most days I am so tired I don’t want to be writing this. I want to lay down but I know that so many people love him and need to know what is going on, so I type.

Today was another day of rest.

He had a good night last night though!!!

His x-ray was worse. It showed that his lung was de-recruited (caved in) and so we went up a bit on his vent to help “pop” his lung back open.

Otherwise we mostly just held him all day! It was nice and calm. There was a lot of other things going on within the unit and so we just hung out most the day.

He did get to work with PT today. She got him sitting up and he didn’t like it but Ashley was able to work her magic and read a book to distract him. He sat (with help) for almost 10 minutes!!

We went up on amlodipine for his high blood pressure and also went to a bumex drip to help him pee more. He was getting lasix every 6 hours but they decided an IV drip of bumex is better for a continuous infusion and keep him more even for fluid balance. We also added an enteral potassium until we can get his potassium back up to a better place. When he is peeing so much with so many diuretics, it is hard to keep all of his levels, level.

Praying for another good night on the cardiac floor for all of the other heart kids living here with us!

Such a tiny step today but feels like we haven’t done anything in weeks.

We weaned his NAVA rate to 2 from 2.5 this morning. That is it. Otherwise we just hung around today.

We talked to pain and palliative for a long time because he had a really rough night last night. He didn’t really sleep much at all. We discussed a better plan of what to do going forward. We will see how that goes tonight. We are trying a few new things tonight.

We also talked to integrative medicine for a while on how to help with his delirium. They also gave us some ideas of how to help with that too.

He finally pooped tonight after 2 days and several meds and suppositories! Phew.

His xray looked better today which is amazing and overall he had a good day. He rocked with me and with Nana, he got OT and got to sit in his purple chair.

He as A LOT more with it today. He was following us around the room, looking at us if we called his name and playing along with us if we asked him to look somewhere. Seemed more responsive if that is possible while being unable to speak or really move his hands or arms (we have to keep his arms restrained so we keep his No-No’s on so that he doesn’t pull anything off that needs to be on). He was looking at us when we were talking and telling stories which is nice!!

His blood gasses look amazing and he is rocking everything he is being asked to do. I don’t know why he is still intubated. I just don’t. I think he is ready but I also know that isn’t my job to know if he is or isn’t ready. My job is to love him and advocate for him. I am doing both so much it hurts. It physically hurts.

I am torn if I should say today was a good day or if today was a rough day. I guess it was both. We are still in the ICU and he is still intubated so take my good day as a grain of salt but there is nothing changed and nothing is bad, so today wasn’t bad per say either.

I was just emotional today. I cried a few times and am feeling helpless and frustrated. I am sad. I am just sad we are still in this same place. I know we are getting closer every day to extubation but this is long. It is a long difficult journey.

When he was a baby, it took 29 days between getting off ECMO and extubation (March 12, 2019 – April 10, 2019). As of today it has been 19 days since getting off ECMO. So, we are still ahead of our timeline from before. Not that we can compare but I did assume it would be less time because he was on ECMO for 25 days. Both of his lungs we so so sick last time. This time, it is one tiny lobe on one lung. But now it seems that his diaphragm is causing more issues than the lung.

Speaking of diaphragm… they did another diaphragm study today and it showed no change from last Monday.

His gtube was cultured yesterday and it did culture back Staph. They started him on an IV antibiotic and an antibiotic cream for his gtube opening. It is really bad. I haven’t talked about it too much but it is looking terrible!! Ever since they switched to the GJ, it just looks Big and inflamed and gives me the heebie-jeebies. Yesterday when the GI doc was in here he even said to cover it up “because nobody should have to look at that.” I mean… he isn’t wrong.

I got to hold him for a while today and one of the surgical NPs came in and removed all of his stitches. He had a lot above and below his chest incision and some from his lung injury too. He didn’t love it but handled it well.

There was a lot of that today. That is partly why I have been emotional. He is being poked and prodded and when someone walks in, he knows he is gonna get hurt or poked or moved or suctioned. Ugh. It is terrible. I am not normally an overly sensitive person when it comes to him getting hurt but I am OVER them making him feel any amount of pain. It is mentally exhausting. Seems like he is either crying, wincing or just staring off at nothing when he is awake. It is all so painful.

I can’t even explain the pain of watching your child like this when they normally have so much personality. It is a pain I can’t put into words.

Right after the stitches came out he had to get back into bed to get an ultrasound of his stomach and kidneys, more on that in a sec. He didn’t like that either. Then, after that, radiology came in and had to do a diaphragm study. He looks so scared when new people walk in and it actually breaks me. I have to tell him over and over again, “you’re safe, no owies” but I just feel so bad for him. His legs are so bruised from his lovanox injections and he has wounds everywhere.

He got the ultrasound on his stomach just to make sure there is no excess fluid, not expecting to see anything. Then, they also wanted to look at his kidney function. The doctors are watching his kidney function closely because they think his high blood pressure is caused by his kidneys and the med they put him on for high blood pressure can cause more kidney damage so they are just keeping an eye on it.

He is doing amazing on his NAVA vent. They weaned his rate down to 2.5 late this afternoon and so far, so good!!! His body is really liking this vent and the way it triggers his own breath. He is doing amazing and I am so so proud of him.

He got to sit with Nana for almost 4 hours which is amazing! He slept and looked so comfy.

He had a great night last night!! We decided to do something rarely done on this unit but we went up on his precedex to 1.2 from 9pm until 6am and then back down to .8, to allow him to get some really good, restful sleep which will help with his delirium. It worked great!! He slept all night and woke up at 7:15am! He was awake more today too so hoping it continues to work and gets him some really good sleep and we can start to see my boy again. I think his days and nights have been backwards and that makes delirium worse too.

I will keep saying it but thank you for the prayers. I appreciate all of the kind words, thoughts, prayers and everything else all of you have done for me and my family.

For no real good reason we had a pretty good day. He was very out of it and delirious but he was awake more and we seemed to make some good progress.

We started a blood pressure med, enalapril because his blood pressures have been high. He was on it after his last surgery for about a year.

We had a GI consult today for his GTube and we had pulmonology and skin/ wound came. We had him in his chair for a while today and Ashley got to wash his hair while he was sitting which I think they both loved. After he got out of the chair Nana finally got to hold him!! She has been so patient. He slept with her HARD.

We then had to put him back in bed because they came to do a minor procedure. They switched out his vent to something different so they can do a process called a NAVA. They put a NAVA catheter in his nose so it goes down into his stomach. The catheter has a sensor on it that senses when his diaphragm starts to move/ take a breath and it triggers the machine to give him a breath. The thought is that this is a better ventilator for his current needs. So far he is looking really good on it. His respiratory rate is lower than it was on the other vent. I am really hopeful this is a big step forward for him to get to extubation.

We were supposed to get the diaphragm study today but there were too many other emergencies in the hospital that we got bumped. Hoping we get it done in the morning!

Today was kind of weird. He was very sleepy. He slept almost all day. He was maybe awake for 1 hour total today and even when he was awake he just stared off. He didn’t make eye contact, he didn’t acknowledge us or even act like we were in the room.

That is really hard for me to watch. He just stares past you and it is heartbreaking.

We did make some good progress today though. We went down on his vent settings! We went from 8 to 6 for his PEEP. We also tried to go to 10 from 12 on his pressure support but we ended up having to go back to 12 because he wasn’t getting enough air volume and was more air hungry. We continued on with 4 hour trials today and those did go well.

We started using an antipsychotic last night to help him sleep and help with the delirium. The night nurse said he had a good night but it is so subjective that it is hard to know what they consider a “good night.”

We started the day at 30 ml/ hr and we are ending the day at 48 ml/ hr. We are now officially at full feeds which is amazing!! I thought feeds might be the thing that keeps us here but we are up to full feeds and he is still intubated. Who would have thought? Because we were able to go up on his feeds we were able to get off of TPN and lipids. This means we are down to 4 things on his IV pole. Three meds and one is just maintenance fluid to keep his PICC line open. This was something that took a very long time in the past. You can’t go home on IVs so getting off IV meds and switching to enteral (oral/ GJ tube) can take a lot of time. We only have 3 more to go!

He is on a lot of enteral meds but those are easy for us to go home on. We added in Famotidine today to help with acid reflux.

I shouldn’t even be talking about going home but I think it helps put things into perspective of the things that need to happen in order for us to move OUT.

I don’t normally talk about future plans but tomorrow they are thinking of repeating his diaphragm study and if/ when they do, they are looking at how his diaphragm is looking. IF it looks better they will start talking about extubation. If it isn’t better, they might start talking about surgical intervention.

Please pray for his diaphragm to be better than it looked last week. I don’t want to keep asking for things because I am so thankful for how far we have come but I think this is such a big step and its taking WAY too long. He has been intubated for 23 days now. I am READY for him to start feeling better and it feels like the only way to make any headway is to get that damn tube out. We can’t wean any more meds until he is extubated. I also can’t fathom sending him back to the OR again. I am shaking just thinking about it. My trauma response is at a peak right now and I can’t keep doing that. Please lord just give my heart a break.

September 16, 2023

Today was Scott’s Heavenly Birthday. He would have been 36 today. We celebrated daddy in heaven today by resting and getting better.  The golf tournament looked amazing and we got MANY videos from the golfers and made us feel very included even though we couldn’t be there. My grandma also turned 86 today!! She is exactly 50 years older than Scott and reading this so, Happy Birthday Grandma!!

Pam brought up yummy chocolate cakes for his birthday and we had tacos for lunch and ordered Applebee’s in his honor. Applebees was his favorite restaurant. Please don’t judge him for that, I swear he was a good guy. Just terrible taste in food. 😊

Maxley had a good night and only had 1 bump overnight.  The nurse kept him occupied when he was awake by reading to him and putting on movies.  We want to start getting his days and nights straight so we made some changes to his sedation medications today.  He slept so much yesterday and slept in 2 hour chunks last night, so we are still walking a fine line between sedation and wakeful and his comfort.  He is more and more jittery which is so hard to see. 

I am feeling frustrated because these steps are SOOO small. It is painfully small. I can’t help but think I know better which is NOT true but I just keep thinking he is ready to get that tube out but I understand them wanting to go slow so that we don’t have a failed extubation.

We were having a few problems with his breathing (ET) tube over the last few days.  The breathing tube had twisted in his mouth and kinked, so they were not able to suction him. 

Last night it got worse so today after meeting with a few of the doctors about options, they decided to sedate him and roc (paralyze) him see if they could fix it.  They were able to fix both problems and also add a bite guard so hopefully the tube will stay secure until we can extubate. 

Today they lowered some more vent settings and started 4 hour CPAP trials.  We think he did well but as always, we will see what the doctors say tomorrow as far as progression. They don’t do more than a 4 hour trial because it is literally breathing through a tube while they are on these trials. So they do 4 hours on and 2 hours off all day. I suspect they will keep this pattern up a few days while they wean a bit more on some of his vent settings.

This morning my mom held him for 4 hours.  While we were transferring him, the ART (arterial) line came out.  We don’t know if he pulled it or if it happened during transfer.  It started bleeding and since he is on blood thinners and has low platelets we had to be very careful with blood loss.  We held pressure for over 25 minutes on it and put a pressure dressing on it.  It really did need to come out anyway and now it is one less thing attached to his little body. The nice thing about having an arterial line is that they have a constant and very accurate blood pressure reading. It doesn’t sound like they are thinking that he will need another one but now he is down to just having his PICC line. Luckily it does have 2 lumens and they can draw from it for labs as well. But, I think they will need another access point eventually. There are some meds that are not compatible with other meds so the can’t give them through the same line.

Speaking of holding him. It is a very complex process. It takes at least 3 people including a respiratory therapist.  ALL the leads, tubes and cords need to be held and he has to be held by his butt and head.  He is like a baby right now in that he can’t hold up his head, so his entire body needs to be supported.  Everything has to move simultaneously, so nothing kinks or comes unplugged.  You also don’t want any cords to end up under him because that is really uncomfortable and bad for skin breakdown to be sitting or laying on cords for any amount of time.

The biggest risk of moving him is his ET tube. If that comes out the Dr. would need to emergently place another one. The doctors are ok with us holding him as long as you understand that risk.

Once he is set in our lap, we position him around several pillows and blankets. If you are the one holding him you have to plan to go to the bathroom first, have everything within arms length including the call button and ready to sit for at least a few hours.  The biggest issue is to keep his breathing tube level and safe.  The tube often fills with water and that can shoot down the breathing tube if not held correctly.  It is a lot of work and isn’t always super comfortable. He is very fidgety, and it is hard. It is hard because at home I am used to just sitting down with him, setting him on the floor, picking him up under his armpits and putting him on my hip, being able to sit, stand and move about freely. Nope. Not here. He is so fragile because of that damn ET tube.

He is also on sternal precautions for 6 weeks. Sternal precautions mean several things but the biggest is that you can’t lift them under his armpits, (like Mufasa held simba) if that makes sense. And you can’t grab him by his arms to move or adjust him.

The other thing that you have to be careful of (that we learned all too well after his first surgery) is that you have to be careful with all limbs, spine, etc because when they lay in bed for so long they start to get weak and their bones get fragile. Last time he got brittle bones and broke 4 bones just from diaper changes or adjusting him incorrectly. You can’t grab his feet and lift them in the air to change a diaper. You have to roll or slide a clean diaper under his dirty one and try to wipe and clean him up and then pull the dirty one out.

On that topic, we also weigh every dirty diaper. So, if we change a diaper when the nurse isn’t in the room we wrap it up (with no wipes bundled in) and put it on the scale in the bathroom. We take a permanent marker and write the time on it so the nurse can chart it later.

Then later in the day, we had to get his PICC line and his Pacer wires re-dressed.  He is picking and pulling at everything now, so this will likely be a regular routine.  I noticed when I was holding him tonight that he was picking at his sternal incision. UCK.

The days are long and the weeks are just going to keep ticking along. Sitting here and missing life is hard. There are things happening on “the outside” and it sucks that we are here, struggling. I miss my house. I miss my bed. I miss my dog. I miss not living in a box. I hope everyone reading this stops for a moment today and is thankful for their home. Be thankful if your children are healthy. Be thankful to go to bed tonight next to a loving spouse or partner. Just, be grateful for being able to sleep in a dark room, without beeping, and without the panic of something terrible happening before morning.

The night before Scott’s birthday. I am so blessed that we get to spend Scott’s birthday with the next best thing, his mom and his son.
The annual Scott Ferguson Memorial Golf Tournament is tomorrow in Lindsay, ON, Canada too! We had planned to be there but that will have to wait until next year. Scott’s best friend, Ken (and many others) are helping to put this incredible event on.

Maxley had a really good day. He is getting some hand strength back and so has been really handsy. We have to constantly watch him so that he doesn’t pull at his ET tube, which he tries to do about every 3.7 seconds. He is pulling at his IV’s, GJ tube, everything! Oofta!

We upped our CPAP trials to 3 hours on 3 hours off. He did amazing and all of his gasses look good too! We weaned his precedex today from .9 to .8. He was pretty shaky today so we know he is still having withdrawal from his versed wean yesterday. The withdrawal signs for dex are harder to spot. They are sweating, flushing, rising blood pressure and rising heart rate.

He also got to rock with my mom for 3 hours this morning and she is currently rocking with him again while I type. PT came today and he had a very special visit from 2 bunnies!!

Right after the bunnies we put him in his chair. He didn’t love it but it is so good for his lungs so after about 20 minutes I told him we are going to try to stay in it for 30 more minutes and then he fell asleep for an hour and a half.

He has been pretty sleepy today. I think the CPAP trials are wearing him out but I am glad for the calm.

He is picking out Sesame Street characters from books if we ask for him to point so we know that part of his brain is perfectly in tact! They wanted to get some extra fluid off and diarese him today but as of right now (9p) he is even for the day. This might be obvious but I didn’t know or understand. They track everything that goes in him. Every ml of fluid, meds, flushes, food, etc. and then they subtract everything that comes out. Diapers, gtube waste, blood, etc. They track the ins and outs everyday to make sure he isn’t taking in too much fluid. There is a large monitor in our room that has his I/O on it so we can track along with them. It also has his most recent blood gas labs and lots of other stuff too! It is a nice snapshot for the Dr’s when they walk in.

The pulmonologist told us we are his patient of the week!!! He thought by the way his X-rays looked at the beginning of the week, it would be kind of a rough week but he said Maxley is doing amazing. Better than his X-rays looks. That seems to be the Maxley way.

Hematology stopped in too. We got the results back from his nutritional labs and they all came back normal. This means that his diet or lack of nutrients isn’t causing his lack of platelet production. This is a good thing but doesn’t give us an answer as to why he has these ongoing platelet issues. You platelets are made in your bone marrow so they are wondering if he has a deficiency or something we need to do with some bone marrow testing once he is better. There aren’t a lot of tests or things that can help them when he is this sick.

Another great day! We have made such progress these last few days. Grandma held him for a couple hours this morning which was AMAZING for them both!

We went up to 25 ml/ hr on feeds. We did a 1 hour CPAP trial at 11 and he did great! Then we moved to 2 hour trials two times today which he also did great! I am feeling very hopeful with getting close to extubating!!! In the next week, I can feel it!

He even got to rock with Ashley this afternoon and me this evening. Hoping Nana gets to hold him tomorrow!! She has been very patient! 🙂

My sister, Codi came up and brought us dinner tonight which was very nice!

We weaned his versed a little bit today. This evening he started to show some withdrawl symptoms. He had a slight fever and was very shakey too. We gave him 2 bumps between 7-9 to see if that made him more comfortable.

We got the results from his echo he had yesterday and everything looks good still. We also started a gas X today to see if that helps dissipate some of the gas. He also got an ultrasound on his legs to possibly add in another IV. They had to pull his hand IV this morning because it blew.

I did realize today that I no longer feel the need to bring my cell phone to the bathroom with me. That may not seem like a big deal to others or maybe it sounds silly but for a couple weeks I was scared just to leave the room. I was scared something bad was going to happen the 3 minutes I would be gone. I would hold my phone in my hands while I went to the bathroom and just stared at it shaking. He was so so sick that I didn’t want to leave at all.

Also, I finally got back on Instagram so I will try to do a photo dump today to catch up on some cute pics!

As of today, we have spent 251 nights in the hospital. 251. That is 2/3 of a year. He is only 5. That is 13% of his life. That doesn’t include his outpatient procedures, countless ER visits, or any of this hundreds of appointments with his specialists over the years.

That was just alarming to realize today.

Maxley had a rough night with not a lot of sleep. He was very restless and coughing a lot. He got 7 bumps of versed and 2 PRNs of morphine and it didn’t seem to help a whole lot.

Our goal for the day to was diurese (get rid of fluids) He was positive 600mls yesterday and his xray was a little more foggy today.

We weaned his precedex by .1 and he was even more awake today but really calm. He is in a REALLY good place. The doctors keep saying that he is acting appropriate!

We spent A LOT of time talking with him, reading to him, watching movies, etc. He is good for the most part. I can tell he is really frustrated by not being able to do things. His hands aren’t working how he wants them to. His voice isn’t there and that stinking tube is in his way. We are trying to find other ways of communicating, blink if you want to watch this movie, then if he doesn’t blink, we will move to the next one. He is nodding some but seems like it is a lot of work. I can tell when he is squirmy he means no. We have his speech device “talker” with us but he doesn’t have the dexterity to use it to communicate.

There was a moment today where he crossed his leg over his other knee and in that moment I KNEW he was my Maxley. I know that sounds silly but that is something I don’t see other kids doing and I just can feel it that he is in there. It made me smile.

We went down on nebs from 3 times a day to 2 times a day because they are causing so much coughing. He got another echo today but we didn’t hear the results on that. We aren’t expecting any updates. We went up to 20 ml/ hr on feeds. I am so glad we moved to the GJ tube because we have been able to make really good progress with feeds! We were able to go down on his TPN today since he he “eating” so much!

At 2:30 today we got to put him in a chair which is SO exciting!!

Ashley sat with him for an hour and “played” with him. She read him books, they watched a movie and chatted! It is SO good for his lungs to be up like this. He didn’t love it but didn’t seem bothered by it too much. He fell asleep for a few minutes at one point.

We got to finish the day by me laying in bed with him and watching a movie. He fell asleep as soon as I laid next to him. He seemed to calm immediately.

I am frustrated because my instagram must have locked me out. I haven’t been able to get in since yesterday morning and I don’t understand why but it is bugging me. UGH. So, that is why I am not posted.

Wish us luck on night 252. Hoping we all get some sleep!

Today was another good day. I guess I should be more clear on what a good day looks like around here. A good day to us is that we didn’t have any major setbacks. Which, we didn’t. We even took a few baby steps forward, which is incredible but I don’t want anyone to think he is good or he is well. We have a very long road ahead of us and to be honest I am overwhelmed by it all. We are not as far along as we should be. I thought even with ECMO that we would have been extubated by now and working on weaning oxygen and eating. But, we aren’t there. We aren’t even close. I am so mentally exhausted. I was on the verge of tears all day and just felt off. I hate this. I can not believe this is my life. That I am living in a hospital yet again. Day 20. Unreal.

Last night was a little rough. A lot of bursts of coughing, gagging, and inconsolable but then would sleep for a bit. So, it was on and off. I slept in here last night and I got mom to sleep downstairs which was nice for her!

We met with all the specialists again today. Cardiologist, pulmonologist, pain and palliative, integrative medicine, and our intensivist. He got OT and music therapy too.

They weaned his vent a little today. They went down from 10 to 8 on his peep and went from 18 to 16 on his rate. We also went down on his versed (sedation med) today by about 15%. We went up to 15ml an hour on his feeds and he seems to be tolerating that pretty well. We tried venting to a farrell bag but after about 6 hours he had a little emesis (vomit) and so we went back to venting his gtube into a diaper so he can get rid of the air and the secretions from his stomach. Because we aren’t feeding his tummy, his gastric contents need somewhere to go. Eventually he will be able to tolerate them staying in his tummy but that could take some time.

He was comfortably awake for almost 2 hours today. We read him books and listened to music. He responded to us and looked around the room too. He was still out of it but was more aware than he has been. He was looking at the pages as we were reading.

Respiratory came and re-taped his ET tube today and changed it from taping it on like it has been to an ETAD. It wraps around his head so it stays better. It looks weird but seems to be staying better than the tape.

They also gave us the “arm” thing that is holding his ventilator tubing so it isn’t kinking so bad.

He got a platelet transfusion today since he was down to 49. They test it an hour after and he went up to 66.

We also got the results from the diaphragm study he had done yesterday and his right diaphragm is paralyzed. They aren’t sure if it is permanently paralysis or just temporary. It isn’t going the wrong way which is a good thing. Sometimes they see that the diaphragm is going up and pushing into the lung which isn’t happening but it is “stuck” and so his right lung (the injured one) isn’t able to fill fully which is causing his high respiratory rate and some of the other breathing issues he is having. This could take months and months to recover properly. This could set us back even more.

There is a chance that if we can’t get anywhere with his ventilator settings they would need to go in and do a diaphragm plication. They would go in and tack his diaphragm down so that his lung can inflate.

We are really hoping we don’t need to do that but it is good to know that nothing will be a surprise if it comes to that.

He is pretty awake as I am writing this (9p) and so we turned on a movie for him to watch. Just because I know we will be watching a lot of this movie, I will mention it is Curious George. I think last time we were here we were watching this 8-10 times a day because it was the only thing that kept him calm.

Thank you for the continued prayers for Maxley, my mom, my favorite mother in law, and Ashley. It is funny because when the doctors round on us, they come in our room and we all 4 stand up and come stand on the side of his bed while they all pile in. We are quite a site to see. We all wear Team Maxley clothes everyday so they have just started calling us Team Maxley as a collective.

Today was actually a really great day! He had a few coughing fits but way less than the last few days. He slept a lot and seemed a lot more comfortable too. It was nice to see him sleep for good chunks of time.

He had a really rough night and was up a lot coughing and gagging. He didn’t get much sleep so maybe why today was better!?

We had a fairly eventful/ productive day as well.

Maxley got his final chest tube out today which comes with a lot of relief I imagine. He has had 4 chest tubes in total for this hospitalization so it is a big step to get the last one out. They were also able to bury his 2 pacing wires since his pacemaker has been off for a few days.

They switched his G tube for a GJ tube. The J part is his jejunum. So they actually feed his food right into his intestines and that way we can continuously vent his gtube (stomach). We are hoping this will help him be more comfortable. Because he is on a vent they are pumping air into him constantly and he will swallow a lot of that and that causes gas and pain.

It was interesting though because they normally bring you down to radiology to get the GJ placed so they can see what they are doing and that it goes in the right place. But, our Dr. asked for them to come up to the bedside to place it because he is “too sick” to move him. That was really hard to hear. He is so much better than he was just a week and a half ago so it feels like he is good, but he isn’t. He is still on a ventilator. He is still on “life support” because a vent is considered life support. Moving him is a LOT of work and is ultimately a scary thing to do. it isn’t ideal to be wheeling him around the hospital where something bad could happen. So, they were able to come up to the bedside and place his new feeding tube.

He has been on the ventilator for 17 days now. Seems like a lifetime. He was on for 13 weeks when he was a baby so this is nothing but it feels like we are still so far from extubation and making real progress.

They also did what they call a diaphragm study while radiology was in here. They thought there might be something “wrong” with his diaphragm that is causing his tachypnea (fast breathing). They did notice that his right side was more stiff but we aren’t too sure what that all means yet. We will need to talk to the pulmonologist in the morning.

A culture from his bronchoscopy came back today as yeast so they started him on an antifungal. It is because he has been on so many antibiotics.

Our nurse pulled his leg IV today because it had blown and was hurting Maxley when they flushed it. He still has 3 IVs in his right arm so still plenty of access points, at least for now. It wouldn’t surprise me if they need to add another IV in the future.

His legs are already black and blue from his lovanox shots he has to get twice a day. The poor kid looks like a pin cushion and it SUCKS. He has skin tears and wounds all over. His scars are giant and black and blue. He looks like he has been in the worst car accident you can imagine. It is so horrible to see him this way.

Pam spent the day up here and my dad and stepmom came up too. It was apparently grandparent day! 🙂

Of course, like every day we met with Pain and Palliative, hematology, pulmonology, cardiology, and wound care. Not to mention the times that our Intensivist comes in to see him every day. It is a constant stream of people and always spit-balling ideas of how to care for him. Do we go up on this med, down on this med, another 3 days on the antibiotic, venting his tube, etc.

It is a lot of advocating for him and I am so blessed I get to do that for him. My mom and I take turns stepping out for meetings, or to make calls for work but we always make sure someone is in here with him. Not every family here is as lucky. I am sure there are many stories and I can’t begin to imagine the turmoil these families have to deal with. But, so many of these kids have nobody in their room with them. We walk by their room 10 times a day and have never seen a single person visiting, or proof that they have loved ones who care. It is heartbreaking. I want to scoop all these babies up and love on them.

Seems like all of the prayers are working so, thank you!!

We had a great start to the day by learning his fever broke overnight.  We didn’t quite trust it at first, but he has not had a temp all day!  He finally has warm feet and hands and we think he must just feel better in general. 

Now that his fever is gone, we can actually use blankets to tuck him in.  We brought in his weighted blanket and he has been much more content. 

So, one thing off the list!

His coughing continues to be very annoying and wakes him often.  They made some changes to the vent today to see if giving him more air to expand his lungs could help the cough, but it didn’t.  At 5:00 today we started a cough medicine to see if it would help suppress the cough and it seems to be helping.  They also changed his nebulizer to only 3 times a day instead of 6 since the neb really exasperates his cough. 

So we are hoping if he can reduce his coughing, he will rest more and heal faster.

His X-Ray and lungs are also better today. 

We did not wean any drugs today.  He was pretty rough this morning and they decided to give him a break for a day.  As anxious as we are to get him off these drugs, we want to do it safely and let him heal. 

The best part of the whole day was that Pam flew in this morning!!! I am so excited to have my mother-in-law here for 2 whole weeks!!!

So many prayers are being answered!

I was able to be gone most of the day for one of my best friend’s bridal shower! It was lovely to get out of the hospital, eat yummy food, drink a mimosa (or 3) and chat with friends.

My mom stayed here with Maxley. We mostly kept him sedated to help his lungs rest a little more. He woke up a few times and is nodding or shaking his head to questions. Just now I asked him if his throat hurt when he coughed and he nodded. He looked up at me like “Please help me.” I feel so bad for him. I am crying and just feel sick with how much pain he is in. I hate this. I hate all of this.

He had a bronchoscopy while I was gone and the pulmonologist said that everything looked good. His injured lung looks better than it did in his last bronch. They didn’t get many secretions out which is a good sign but he just keeps coughing. He has these bouts of horrible coughing fits. He had to be NPO (no feeds) starting at 4am so he didn’t get fed most the day but did have 2 little throw ups despite not getting fed.

He got a blood transfusion during the bronch because his hemoglobin was low again today. They do so many blood draws because they do labs so often.

The doctors thought the coughing might be from his lung healing and making him have the feeling of needing to cough or because he is intubated. The feeling of that tube might be making it worse. We won’t know until we extubate but it is a catch 22 because we are struggling to make progress because he keeps coughing.

We will continue to keep him sedated and pray that his lungs can continue to heal. His x-ray did look better today too!

His temp was down a little today and didn’t seem to get as high as it has been which is good news. His core temp is high and he sweats, but his feet and hands are very cold. The last few days we were putting heat packs on them, but today my sister brought up an electric heating pad, so now we can keep his feet warm.

We added morphine back as a PRN (as needed) so he got 2 of those today. That will help with any pain he might have and actually acts as a cough suppressant. Hoping having that on board will help some.

2 weeks today since his incident. Two whole weeks since my world came crashing down again. It seems like yesterday. He has come so far but is still soooo far from getting to go home. I am feeling frustrated and sad and angry and so many more things that I know are not productive or helpful, but here I am. Watching Maxley plead with his eyes because he isn’t able to talk. I am watching him cough and cough and struggle and it is NOT fair. It isn’t fair he has to do this again. I would give ANYTHING to trade places with him.

Moving on to our day and away from my pity party…

He was off the pacemaker all day. He is pacing in the 110s – 120s which is great. He had more poop today and we went back up to 10 on his feeds.

He failed his 2 hour CPAP trial in the middle of the night because his respiratory rate was too high. The one this morning was more of the same so they DC’d them and said he just wasn’t ready for them yet. He is too awake and coughing too much. His coughs aren’t super productive so they don’t think he should be this awake. He needs more time to let his lungs re-recruit. His xray looked worse this morning too. He was a little fluid positive yesterday so it could be fluid or a myriad of other things but they don’t know. They just believe he needs more time.

It felt like we were so close and so we are taking a big step back. I know it is fine and I can hear all of you saying, “that’s ok, he will get there” and I know that too but… at the same time, it is hard not to think about the fact that we just shouldn’t be in this situation. He shouldn’t have to be intubated and missing school and the rest of summer. He shouldn’t have to be drugged with a tube down his throat coughing up mucus from a lung injury that he shouldn’t have. Ooops, sorry, I accidentally stepped back on my soap box for a second.

Moving on. We weaned the dex by .2. We had integrative medicine come and do some Reiki on him and some other healing touch.

I went home for a few hours today!! I actually walked out of the hospital, got in my car and drove!! LOL I got to see Mountie and was able to shower in my own shower and grab a few things for a friends bridal shower in the morning and I had to do a few things around the house that was just easier for me to do rather than explain to Ashley or someone else. It felt good but I also hated it. Felt good to get back to him. I didn’t miss much.

He was a lot more awake today which again isn’t the best respiratory wise but he was shaking his head and nodding his head appropriately and answering questions. We asked him if anything hurt and he said no, my mom asked if he wanted her to sit with him, he said yes, Ugh. Melted us and then he smiled. A BIG smile, a big, up to his eyes smile. It was BEAUTIFUL. I can’t even explain to you the sheer beauty of a smile after the thought of losing him for so long. Ugh, we all cried, even the nurse.

We added cyproheptadine to help with digestion and we added Vancomycin as well and did a blood culture. The doctor thought there might be another infection because his CRP (inflammatory marker) went up today indicating possible infection. He STILL has a fever, I think this is day 7. Ugh, poor kid.

Prayers for some quiet days so Maxley can get strong and maybe we can take some steps forward next week! Thank you everyone for your love and support for my family and I. It has made a world of difference for us.

—> If you didn’t see the video of me holding him, scroll down! It had trouble uploading but I think it is working now.

Thursday. Funny how we loose track of days around here. He is making progress every day. Today was even better than yesterday.

Last night about 11, his blood pressure was a little low, so they decided to turn the pacemaker back on. This way his heart rate stays a bit higher, his blood pressure stays stronger which also helps his kidneys function better, ( as well as all organs). They left it on all day today also, We didn’t ask to shut it off, maybe they would have if we did.

There are a lot of things that we kinda ask for or push for but don’t always happen otherwise. Not that they don’t know what they are doing but they are doing SOO much that I think sometimes my mom and I are thinking of some other things that they aren’t. Or the day intensivist doesn’t realize that the night Dr. turned the pacer back on, etc.

CPAP trials went well over night so they did 3, 2 hour trials today and he did great. They will do 1 more 2 hour trials tonight. They adjusted other settings down also today on the vent so his lungs do more and more work.

He finally started stooling today so we were able to start his feeds and then this afternoon they increased his rate to 10 ml/hr and so far so good. He still seems uncomfortable in his tummy, but so much better.

OT came today and we learned about some good ways to stretch him and move him to better support his hips and legs.

Hematology came by today. He has a blood clot in his left IJ so he went on lovanox today. This is 2 shots a day for 6-12 weeks. Obviously, we will need to do these at home, so we started learning today how to do them. We also talked to them about his chronic platelet issue. It seems his body is not producing platelets like it should. This can be caused by a few different reasons so they are going to do some blood work and try to narrow it down. There are so many complex things going on with him right now, it is nice to get the specialists involved while we are here and as he heals.

His fever continues to go up and down. He was at 104 most of the day, but intermittently would drop to 101.

We weaned further on precedex today and plan to step down 2 times a day. He is very fidgety and seems uncomfortable. He yawns a lot (sign of detox) then gags, then coughs. This went on most of the day. We sit with him and massage him and console him to relax him. Getting him over these bridges are tricky. We want him to start waking up, but we also want him safe and comfortable.

Speaking of waking up, we had the best surprise today of him opening his eyes for over 5 minutes. We all cried. He was tracking and watching each of us when we talked. I was able to give him some mouth cares using water on a sponge and wetting his mouth along his cheeks. It was amazing. Obviously he is very drugged, but to see his beautiful eyes, was so exciting.

This morning during rounds we asked (aka begged) to switch his last chest tube to a bulb. This is a shorter tube and gives him more flexibility for movement. They finally got permission this afternoon from the surgeon to make the switch. I was so excited about it I offered to even help the nurse do the switch. During the night rounds the Intensivist then said I COULD HOLD HIM!! I was so excited.

I can’t believe it has only been 2 week (yesterday) since I have held him. It seems like so much longer. I am so grateful for all the nurses and staff who helped make it happen. It was the best hour of my year and will be hard to beat for a long time. It has been the longest 2 weeks of my life and that is saying something.

We put my chair right next to his bed and after about 30 minutes, they transferred him into my lap.

Now as I write this he has opened his eyes a few more times, but you can tell it is exhausting for him. Holding his little eyelids open is a lot of work.

Today would have been Maxley’s first day of preschool. I was emotional about it because it just sucks. But, now that I am writing this, I was able to hold him and I am just feeling grateful for this beautiful creature that I get to love. I am so damn lucky.

Photos by Shea Jurgensen

Our FAVORITE Chaplin came today and we haven’t seen her in a couple years. She prayed with us and said she had been praying for us.

Thank you to everyone who has been praying, sending vibes, thinking of us, sending us food, sending money etc. It is something you never thought you needed until you are in this situation and you can’t believe how much you need it.

What a day… lots of big updates!!

The short story is that he went from 16 meds down to 7!

If you don’t care which meds we nixed today, then skip to the next paragraph. He got off the insulin (hoping for good), he got off morphine and narcan for good, and they removed bumex too. The only meds we have left are milrinone (for heart funtion), versed (sedation), precedex “dex” (sedation), TPN & lipids (for nutrition) and then he has 2 maintenance fluid running in his art line. I think we started with 30 or so when he was first on ECMO so this is huge!

We met with integrative medicine to learn about alternatives to assist Maxley in his recovery. They use things like essential oils, massage, reflexology, etc.

He got his subclavian line taken out. They usually only want that in for 7 days and it has been 14 but he has had a fever so vascular access didn’t want to put in a new PICC line until his fever cleared up. They ended up agreeing to doing it even though he is febrile because his surgeon thinks he might have a fever for a long time because of his injured lung. The new PICC line is in his right arm so that is now the 3rd IV port he has in that arm.

This is day 5 of his fever and he is 104 right now. They aren’t overly concerned but we spend a lot of time trying to cool him down. Ice packs, fans, wet wash cloths, etc. I am hoping it breaks here soon. He has had 2 doses of the correct antibiotic for this strain of bacteria but it doesn’t seem to be helping. They keep culturing blood, urine, etc but aren’t finding anything else.

Taking out his central line also means we get to stop checking his CVP (measures the pressures in the heart). It has been on the monitor this whole time so it is weird when they stop monitoring certain things.

They have been giving Maxley suppository’s and stool softeners for several days, with no luck. We are now adding enemas to help. We did get a small poop today which is great but they are still holding feeds until he is stooling so we need to get him pooping. I have a feeling that feeding will be something that will keep us here.

Around 2:00 we noticed that his heart rate was pacing over the pacemaker (set at 120) so we called the dr in and she was super happy about that!! She ended up unplugging his external pacemaker and he has been above 100 since!! The pacemaker will stay on the bed as a precaution in case he dips down. He has a low base rhythm and they want his heart rate up so they have been pacing him just to make sure he gets adequate profusion but they are fine with him being a little low if he doesn’t need the pacemaker. It does sound like a permanent pacemaker is off the table right now and I am SO thankful.

We ended up doing a CPAP trial on the vent to see if he is ready to be extubated and he did great! We only did an hour but his gasses were good and his sats maintained which is great! We will do another one hour trial every 6 hours and will hopefully go longer tomorrow and hoping he is strong enough to get extubated in the next few days.

He is still super sedated. We are weaning but he hasn’t really shown any signs of waking up. He opened his eyes for a few seconds today but was pretty quick to close them again. I continue to be very afraid. I am so scared of the brain damage that I know is a very real possibility. I am scared for the possibility that he had a stroke while on ECMO or that an air bubble got to him. I am so beyond scared that he won’t be him under all of those drugs. I was so elated when he got off ECMO I thought we would start to see Maxley really quickly but we just aren’t. It is hard sitting here hour after hour, day after day and staring at him just laying there. He is at the part of the movie where the main character or the love of their life isn’t waking up yet. I am waiting for the climax of the movie where they wake up and remember everything and everyone lives happily ever after. I want my happily ever after with him. I keep thinking, I will just be content for the rest of my life if I just have him. Maxley (being Maxley) is all I need.

We got the sweetest letter from Maxley’s school today, it made me cry!!

Please continue to pray for him and his recovery. We know God is listening.

Minor changes today which is nice.

The biggest thing today was that he got his left chest tube out!!! That is a huge relief for him to have one less thing.

We got off epinephrine and Nicardipine (both for blood pressure) today. We also got off the continuous morphine but still have it for bumps as needed. He has been a little gaggy this evening but otherwise haven’t noticed much for withdrawl. We got back up to 10 ml/ hr of feeds but still no poop.

He got another echo today but we didn’t hear back on the results of that yet. We were given the ok to remove the Nitric oxide from the room. He got off of it yesterday but they leave the equipment in the room for 24 hours just to be sure he can handle being off.

We got the cultures back on his ET tube and it was Haemophilus influenzae and Moraxella catarrhalis. Neither of which they were surprised to see. They already had him on the right antibiotic so hoping that his fever breaks here soon. He has been over 103 for a good chunk of the day still. We have ice packs, fans, wet rags on him, etc. We just want to keep him comfortable but he is so hot.

The wound care nurse came by and did some silver nitrate on his g-tube granuloma to burn that off. We have had it done a few times outpatient but figured while we are here we might as well have them do it. Plus he is sedated so it doesn’t hurt him.

He is still very out. He opened his eyes just a tiny bit a few times but not much. Doesn’t acknowledge that we are here or anything but calms easily.

Ashley got to wash his hair today which she loved.

I started working again today too! It will keep me sane and busy and I want to stay on top of my territory. I am lucky to have a job that has been so flexible but I am ready to get my mind of things for a bit.

Thank you again for all of the prayers and support you all have shown me. These prayers have been working and we are so very grateful he is still here to fight with us.

Please keep the prayers coming!!! What I am praying for his for Maxley to still be Maxley and to not have brain injury and for patience to let his body do what it needs to do.