Honeyed Heart

Happy Labor Day!! I hope everyone had a fun weekend! I can’t believe school is starting this week for our school districts. I am sad that Maxley will be missing the first weeks of school, but I am so grateful that he is still here with us. Luckily we chose to do another year of preschool so he hopefully isn’t missing too much.

Lots of little changes but the theme of the day was that he had a fever. It got up over 103 and he was covered in ice packs to try and break it. We had fans on him and an ice cold wash cloth on his head and he was still over 103. They did culture his ET tube (Endotracheal Tube) and that came back positive with bacteria. We don’t know what is growing yet but they did start him on 2 antibiotics to cover whatever is growing.

Nobody is surprised as it is an open source straight to his lungs and he has an injured lung right now. It is just one of those risks that they have to take.

What else…

We went down on Bumex (diuretic), added Lactulose to help him poop, we stopped insulin and then restarted it because his blood sugars were high again. We restarted feeds at 5 ml an hour.

He hasn’t had any of the work of breathing today so I think we captured the right settings on the vent that make him happy. Another day of no movement from him. I miss him. I miss his personality and everything about him. It has been 13 days of watching him lay in bed and fight for his life. It sucks and it isn’t fair.

Ok, back to not feeling sorry for myself.

His white blood cell count is high again and we lowered the morphine a little too.

We were able to get off of the nitric oxide today too!

Big things planned for tomorrow!!! Hoping for another good day!

Lots of little changes today!

We saw pulmonology and she said the lung looked better via x-ray which is great. They weaned down the vent (maybe too much) and his nitric oxide which is great.

He opened his eyes just a slit a few times but didn’t look at us or anything, he is still very sedated.

He got some orthotics for his feet that have little kickstands to keep his knees facing the ceiling and keep his ankles flexed. They want to make sure he doesn’t get drop feet.

He got another echo today and the cardiologist said that his right ventricle looked NORMAL!!!! That was amazing to hear. It went from severe to moderate to mild to normal in 3-4 days. They were worried because of his lung injury, that impacts the right ventricle, so, good news, amazing news!

Although he has a heart defect, that has never been his issue. Both times he landed on ECMO for his lungs… for 2 totally vastly different reasons.

We were able to pull his catheter today which is nice! We will just weigh his diapers now but that is nice to get that out of him. We also got to pull his NG tube that was going in his nose, one less thing!

He has been running a low grade fever all day, nothing is culturing so they don’t know why but he has just been running warm all day. We will just keep an eye on it, always something.

He was gagging a lot more this afternoon. We don’t know if it is because we upped his feeds today and he hasn’t pooped or he is more wakeful so he is gagging on the tube more. Then after the little gagging episode, he had some work of breathing like he was gasping kind of and bobbing his head a bit. We suctioned a bunch and got a bunch and it would get better for a bit but then he would do it again. He just had a long episode of doing it so we got a chest x-ray here at 9pm and that looked normal.

The Dr. thought it could be the way they weaned his vent today, that he hasn’t pooped (did a suppository but so far, nothing), that his lungs are recruiting, more secretions, he is a little fluid positive and that he is more awake so he could be more agitated. It could be any number of those things or all of them together. It is hard to say but they aren’t overly concerned. We paused the feeding for a few hours to see if that helps, we will continue to suction and we went up a bit on the vent to give him a little break. He doesn’t seem like he is bothered by it but it looks really uncomfortable.

We also added in an albuterol every 4 hours and that should help loosen some stuff up.

There was an emergency in the unit about 9:40pm tonight. All the alarms went off and everyone started running. We saw nurses grabbing the code carts, gowning up. They wheeled everything over and nurses and doctors were running to the end of the hall. It is horrible. It is horrifying. Maxley is in a good place right now but it is a constant reminder that something could go wrong at anytime. Mom and I said a prayer for them and have been emotional. It is so unfair. This life is so unfair. I am sick to my stomach for that other family because I know too well what they are likely dealing with or maybe they don’t even know yet. It sucks. It all sucks.

Another amazing day. Maxley headed back to surgery for the (hopefully) last time. He got his chest closed today!!! He rolled back at 11am and we got to see him a little after 1pm.

The surgeon did the “hollywood” closure so it took a while. He tried to make it look really good! 🙂 The surgeon also said his lung looks a little better than it did a couple of days ago.

He has been opened 7 times in 11 days. I am so grateful that he is finally closed and his chest can start to heal.

His chest x-ray looked better today too! We met with pulmonology, cardiology, pain and palliative, and of course all the doctors.

We were planning to start food today (very slowly) but they couldn’t find the right extension so we will have to have someone bring that up tomorrow and then we can feed him a tiny bit. He is still getting TPN and lipids through his IV to give him nutrients but we need to start feeding his belly at some point and they heard some bowel sounds today so we thought we would try.

We had to start him on potassium, magnesium and calcium today and he got platelets too. We also started him on a Narcan infusion and went down on morphine. We are hoping to slowly go down so he is more wakeful which will help his lungs and all the things. He will be intubated for a while so he can’t be too wakeful.

His insulin lowered today. They are still checking every hour and he is getting insulin until it is normal.

OT came today and stretched him. They would like him to wear his AFO braces to keep his foot more flexed. Apparently when you lay in bed too long and your foot is somewhat flexed it can cause drop foot and lead to some problems with walking. So the braces keep his foot more flexed until he is mobile.

I feel exhausted today even though I slept good, my body is just crashing I think after such an emotional week. I can finally take a deep breath.

Wow. What a day. The BEST day ever!!!!

Maxley is officially off of ECMO and decannulated. He is scheduled to have his chest closed in the morning but for now he is still open.

Our morning was nothing special. They told us in rounds that they were planning to decannulate him this afternoon which was reassuring to hear again! He had a great night and was comfy and calm, we all slept great.

They scheduled him for 12:30 to head back to the OR but it was actually 2:00 on the nose that he was heading to the OR. The surgeon said that everything went well and they moved one of his chest tubes due to skin breakdown.

We got to get back to his room at 4pm and we couldn’t stop smiling!!

What a huge step, one I wasn’t sure he would ever get to.

The only odd thing that happened over night was that his glucose spiked and so they started him on insulin to get that down. It is something they sort of expect because we started him on steroids yesterday which can cause that, being in the OR, inflammatory response, etc. The last glucose we got is 447.

He had a little fever over night last night but he is already on an antibiotic so not much they do about it.

He is still very out of it and of course he is still intubated. They were able to go down a bit on the vent but overall he is still needing a lot of help. But, his lungs are working all on their own. AMAZING.

We haven’t seen him wake up at all today. All of his med levels are the same as they were when he was on ECMO and the machine eats up a lot of the meds so he is overmedicated right now but because he had surgery today and will have another now tomorrow, we are ok leaving him until he gets back from the OR tomorrow.

He also got an echo this morning and that looked even better today which is amazing to see! Praying he doesn’t have any long term effects from the CPR.

His X-Ray after decannulation also looked good. His fluid levels have been good today and hasn’t needed as much blood product.

The wound specialist came in and looked at a few pressure wounds and a few other things but most are looking good considering he has been in bed for 10 days. Nothing bigger than a stage 1 wound.

I thought I would share a little more about our Hospital life. Our hospital room (as you can see from pictures) is about 20’x20′ and our personal space is about 12’x6′. We have a couch and a chair and just take turns where we sit so that we can see him. We have a little shelf and mini fridge with a 12″ closet space. We do also have a bathroom that has a toilet and a sink which is nice that it is right in the room.

There is a Keurig in the ICU that is all the way at the end of the hall. We have bagels and hard boiled eggs, etc that we eat for breakfast. We have sandwich stuff in our fridge and so we just make something little for lunch or go down to the cafeteria for a salad or something. Dinner we order out or we also have some yummy home cooked food from my grandma and sister.

They offer dinner at Ronald McDonald but it isn’t usually gluten (or dairy) free, so my mom can’t eat it.

We brought a mattress topper for the couch so it is a little more comfortable and we have a little TV stand we can use as a side table, dinner table, computer desk, etc.

So far, all of that is working well. Ashley and I have been sleeping down in the “hotel room” at Ronald McDonald which has a bed and a full bathroom so we can shower. It is down one floor but here in the same hospital. We have that room for another week thankfully.

It is amazing how fast the days go. We have so many people constantly in and out to chat, discuss Maxley, etc. We have pain and palliative, the chaplin, other nurses, doctors are in and out, specialists, my sisters, etc. It makes time go even faster which is great because so much of hospital life is just waiting. You also don’t want to miss important things people have to say!

I am not a patient person so that is really hard for me.

I went downstairs to grab our dinner and I was a few minutes early so I stepped outside for the first time in 10 days. Felt good but I am immediately eager to get back up to Maxley’s room so I don’t miss anything or anyone.

Ashley and I got to his room for their 7am rounds. Nothing exciting came out of that.

He had a good night but bleeding picked up again so they paused the heparin infusion for a few hours which is bad while on ECMO. They have to keep the blood thinners going so that the circuit doesn’t clot. But, they also have to weigh the pros and cons of giving blood product over and over and over again.

They really wanted to just try and get him off ECMO.

While waiting to hear what they decide, we met with pulmonology and discussed the possibility of removing his right lower lobe (where the injury is). They were wondering if that was eating up blood product since it is so sick but the pulmonologist said she didn’t think that was the case and she believes we should leave the lung as is. The lung should eventually heal, but will take several months.

Around 10:30, about 15 people filed in here to do a trial off ECMO. He was off of ECMO for 3 minutes. His oxygen stayed at 100% which is amazing but his blood pressure dropped about 30 points, his CVP went up and the NIRS went up too. They also ran a blood gas panel during the 3 minutes and it was a little higher than they would have liked.

He wasn’t ready.

We decided we would give him more time and try again this weekend.

They ended up pausing the heparin again around 3:30 for a bit to try and get the bleeding under control. His chest dressing was soaked in blood again.

We are walking a fine line. He is bleeding so much so we are giving him product but then the product is making him puffy and worry about output, plus when on ECMO he needs to be on heparin which makes him bleed more.

Around 3:50p our ECMO nurse noticed a bubble in the circuit. If that gets to him it would cause a stroke, or worse. So they were VERY quick to react. My mom and I were sitting in the room and Ashley had ran home for some more clothes.

In about 30 seconds the perfusionist (and about 10 others) were in here and clamped off the cannulas so the bubble couldn’t travel to him. They yelled out 3:54pm – Off ECMO and then we all stopped and stare at the screen to see how he was doing. His oxygen stayed at 100%, his blood pressure stayed, they ran a blood gas, his CVP stayed level, EVERTHING stayed!!

Mom and I sat there for about 5 minutes and just stared at the screen while they ran around, yelling things, turned on the lights, threw on the blood pressure cuff, etc while we just stared semi-panicking.

The Dr. kicked us out after 5 minutes and we had to go sit in the waiting area. It was a long 20 minutes or so before the cardiologist came and said he was stable and staying off. They literally cut the tubes and took the old circuit away. They leave the cannulas in his chest for now.

The Dr. came and chatted with us too and said “this is NOT how we like to do this!” But, maybe this will be ok. They are ready with another circut if his labs start to get worse or he starts to show us he isn’t ready. But, as of me writing this at 8:36pm, he has been off for just over 4.5 hours.

I am not ready to celebrate yet as this is a long process. IF he is still holding strong by mid morning, they will decannulate him (remove the ECMO cannulas from his heart). They would leave his chest open for a couple of days just to be extra sure. They don’t like to have to surgically open him back up in an emergency.

Once he is closed up, I will celebrate. It is still a long road.

I still can’t believe we are here. I have been petrified, for a week now. I am still so scared. I am so scared that he won’t be himself, that he won’t come home, all of it.

I don’t mind staying here. I don’t mind living here. I do mind not taking him home ever.

I just need that glimmer of home that I will get to take him home one day and I think today was it!

It is going to be a long night of watching and waiting but praying PRAYING he is strong enough to stay off and that the air bubbles never made their way to his brain.

Thank you EVERYONE who has donated to our gofundme. That has been an incredible light during this very dark and scary time for us.

Happy Birthday to my sister, Codi!! We go to the fair EVERY year on her birthday. She got to go with her family today so I am glad but I think this will be the first year since the year he was born that I haven’t gone.

I slept good at Ronald McDonald House last night. When we got back to the room about 6:30 this morning, his chest dressing was SOAKED in blood and it was dripping onto the bed. After rounds they came in and redressed it. It was soaked again pretty quickly. They ended up coming in a little later and saying they were taking him back to the OR and doing another chest wash out.

We asked a lot of questions before agreeing to do this. I did believe this was the best thing. We think this was why he was not able to advance on ECMO because of all the extra fluid around his lungs.

It was a few hours later that they took him back and it was REALLY hard to send him back to the OR to be opened back up but everything did go well. There was not any active bleeding which was great news. They just adjusted the cannulas from the ECMO and that fixed the bleeding.

We got back to the room about 4:00 and he looked really good.

They made several adjustments to his sedation today. They had a lot of trouble keeping him sedated overnight and with all the commotion today with his bleeding and re-dressing he was too wakeful and moving around, which is dangerous. His drug tolerance is very high due to his history, so it takes much more to keep him pain free and sedated than a typical person of his size. We also consulted with Pain and Palliative today. We worked with them last time on medicating him for sedation, pain, and then the weaning. The weaning was a very long difficult process when he was heavily addicted to narcotics in 2019. We know we will have the same path again, so having them support us is very helpful.

One thing we learned the first time with all this was to bring in specialists. Sometimes it was later than would have been ideal. The intensivists here are amazing, but they can’t know everything. Hematology is one example, Pain and Palliative, and also Pulmonology, are specialists we know have added so much expertise to his care.

As I mentioned last night, keeping his fluid levels where they need to be is a constant battle. As of tonight, we are finally getting to about even with “ins and outs”. This will help his recovery so much.

Another day on the roller coaster.

Mom and I were laying in bed around mignight and he had a weird little episode.

We heard the doctor come in and the nurses were concerned so we got out of bed and were trying to figure out what happened. They were moving him around and put him on is left side to reposition him. His blood pressure dropped, his oxygen saturations dropped and lips went dusky. They quick put him on his back and paused the BP meds. They called in the Dr. and she was right away concerned and ordered a chest X-ray STAT. I just lost it. My whole body was shaky and I was trying not to throw up. I asked her what it could be and she said that it could be an indicator of enlarged heart which would require surgical intervention.

I panicked. We stepped into the hall when the xray tech got here and had to wait for the dr to read the results. They ended up being the same as earlier yesterday so unchanged . But, I couldn’t stop shaking and wanting to throw up.

We were finally able to get to sleep and had maybe 4 hours of sleep. We talked to the doctors this morning and they ended up starting him on Nitric Oxide for pulmonary hypertension. They think the right ventricle is still stiff and just struggling to work as hard as it needs to. We had turned the ECMO pump pretty far down and he was just really struggling so they turned the ECMO back up to give him relief and determined that he just wasn’t ready for the fast track we had been on.

But, it scared me. It scared me really really bad.

I was in a funk all day today. I was just numb and blank. Several doctors who came in asked if I had gotten out or gone for a walk or done anything for myself. I did eventually walk around the hospital for a little bit with Ashley but not a lot.

We just pushed him too hard too soon. We thought he was more ready than he was and he showed us he wasn’t.

He was also really fluid positive so we worked on drying him out a little again because that can be tough on his lungs and heart.

They suction his lungs every 2 hours and are getting a lot of old blood clots which are from Friday. That is a really good thing that they are loosening up so they can be suctioned which opens up his airways.

He has a lot of nuisance bleeding so every little cut or scrape is oozing blood. He is on a lot of blood thinners so it is to be expected but it is hard to see. His IVs, G-tube, open chest and a little cut are all oozing and have had several dressing changes.

Maxley has a history of low platelets. We have worked with hematology for a few years to keep his blood healthy. Since his trauma on Friday, they have had trouble keeping his platelets high enough to coagulate his blood. Being on ECMO is even harder to keep them high enough since they “stick” to all clots. They continue to give him a lot of product (blood cells and platelets) but we still don’t get ahead. Today we requested they bring in our Hematologist and we were able to get a better understanding of why this is happening. They are finally getting ahead of replacing which will help all the oozing at his sites.

We also got orders for the blood bank to provide platelets “matches”. This takes 2 days, but they perfectly match his platelets so the blood can develop antibodies against the generic they usually use. Once we can start using the “matched” product they expect this to make a huge difference.

I am going to sleep at Ronald McDonald tonight with Ashley to hopefully get a good night sleep and get away from the beeping and chaos that is the ICU.

Pray for healing in his heart and lungs and patience and calm energy for me!

Another day of sitting in a chair and staring at Maxley. He just doesn’t look like him. It is hard to see. He looks so much better but his eyes are blank. He is looking right past you and doesn’t acknowledge a whole lot. If I said I wasn’t scared, I would be lying.

I am terrified. When everything happened on Friday all I kept thinking was that I would take him back in any capacity. I don’t care, I just want him home. Of course, all of that is still true but I really really want my funny, outgoing, up for adventure, life of the party, best friend back. I am going to struggle with the reality of what life might look like.

Many of the nurses have said it is not uncommon to see him like this but it is really hard to see when he had so much personality and I love (almost) everything about that personality! It was so different last time because he was a baby and didn’t have as much sass and personality that I can recall. He was intubated for 13 weeks and laid there that whole time.

He was really awake this morning and so we spent a lot of time chatting with him and singing to him this morning. He got another Bronchoscopy today at 11. She was able to get a lot of clots out which is awesome!

After the bronch we kept him pretty sedated for the rest of the day. The doctors really wanted him to have a quiet day to let his lungs rest.

He was peeing way TOO much over night so they had stopped his diuretic and started him on maintenance fluids as well as TPN & Lipids for nutrition. They can’t feed his stomach yet because your bowels fall asleep when you’re sedated and the risk of asperating when you are intubated is too high with anything in your stomach. They also stopped calcium which is another step.

He also got another infusion of platelets. The ECMO pump/ tubing eats so many platelets. They check the tubing with a flashlight every few hours to see if they see any clots. He is on a lot of anticoagulation but they still need to make sure.

They did another Echo today to look at his right ventricle. It is still really stiff. Sometimes that is because it isn’t having to work as hard because he is on ECMO.

We went up again on the vent, meaning making his body do more work and making ECMO do less, they are also going down on the ECMO support for the same reason. There is so much risk of stroke and other complications, they always want to get people off ECMO as fast as possible. He was on for 25 days the first time (8-9 months old).

They were able to remove his EEG electrodes today!!! There was no seizure activity and they were able to see some brain function so they wanted to get them off to preserve his skin. Then, Ashley was able to wash his hair and get all the glue out which was nice and he seemed to like!

Skin came to check out his gtube. We get it cauterized every once in a while because he has such a large granuloma on it but they can’t do anything about it while he is on so many blood thinners.

One of the other cardiologists came in to discuss his pacemaker again too. It is still on the table but the surgeon that just did Maxley’s surgery is out of town until Friday so we will chat with him maybe next week about what he is thinking now after all of the trauma of Friday.

We also had 2 of our very favorite nurses today (and no I am not just saying that Sarah) from before when he was so sick. It makes time go by so fast and is one tiny positive to have people that LOVE Maxley caring for him.

We have 2 nurses because we have 1 nurse works bedside for Maxley and cares for him but then the other nurse works the ECMO pump. They work together and often say, “I am going up to X on the Nipride,” or “I am stopping the calcium,” etc. So it can be a lot but is also so comforting that 2 people are watching him so closely and bouncing ideas off of each other as to how to best care for him. It is needed when he could take a turn for the worst at any time. I would know. We lived it. Many times.

They started saline nebs every 6 hours and they just did their first one and got out a TON of clots from his lungs with suctioning. I have never been so excited to see blood clots!

I feel like I am going to bed tonight a little hopeful that we are possibly on an upward track. I am scared to be hopeful, that is when I get hurt. Seems like my life is meant to be full of hurt.

I tend to think of myself as a positive person but COME ON??? Who’s life is this? It is a bad movie. I thought it was bad that 2 times in under 9 months, I had to sign paperwork to put 2 different people on ECMO/ Life Support. Not just any 2 people, my 2 people. But now, 3 times in my life…. how? How is that a thing? It isn’t like I never thought Maxley could need ECMO again. It was actually a very real possibility with this surgery but that all went so well and I guess maybe in the future, who knows but this was too much and it was too soon and too scary and I just don’t know how I can ever recover from the trauma.

Today was a boring day which was wonderful.

Mom and I both slept good and Maxley had a great night. Ashley slept at Ronald McDonald again.

His X-Ray looked a little better today (they are looking at his lungs), his lungs sound a little better too. The pulmonologist came in today and agreed to hold off on doing another bronchoscopy today. We will see again tomorrow what the X-Ray looks like and decide if he needs another one.

He also had an echo again today and that looked better. The one side of his heart is looking a lot better and the other side is a little sluggish, which is not abnormal.

He was “awake” a lot today. Opened his eyes and stares up. He sometimes looks around a little and seems to follow voices some but it is hard to tell. He is twitching and moving his limbs a little more as well. We are taking turns between the 3 of us to be sitting at his bedside holding his hand, reading to him, massaging him, doing joint compressions, singing, etc. It is hard for me to sit there too long because there is a heat lamp on him because he is running cold with the blood product and not being able to wear clothes. I run hot as it is and so I get really hot and start to not feel great after a bit.

He peed a LOT today. They stopped the 1 diuretic and lowered the other way down. It is a fine line of diuresing and not getting him too dry. The intensivist said that the lungs heal a little better when they are dryer. Hoping for a few calm days and we can begin to talk about what we need to do to get him off of ECMO.

We went up on the vent settings to make his body do a little more work and the ECMO machine do a little less which is AMAZING!!!! They were then able to reduce the FiO2 (the concentration of oxygen in the gas mixture) to 50% from 80%, normal room air is 21% so this is big!!!

His lungs are doing what they need to do and his heart function looks good too.

They also did an ultrasound on his neck and arm to see if his right IJ was still occluded. They are discussing moving the ECMO cannula from his chest to his neck (where it was the first time he was on ECMO). In order to have the VA ECMO going through the center of his chest, his chest had to be left open. So, he never got closed up after surgery. It is fairly covered but the risk of infection is really high with your chest open. They might choose to move the cannulas in order to close him up.

My sisters were both able to come up at different times and see Maxley which was nice.

The surgeon came in and redressed his chest dressing.

Overall, we had a good day! As good as you can have when your 5 year old is fighting for his life.

I have a lot to talk about. I will kind of go out of order.

Maxley had a good day today. I was too tired last night to write anything so I will try and update you on the events of the day.

August 25^th (Friday)

The night was rough. He had delirium so he was inconsolable when he was awake. He would just scream and kept asking for water which he couldn’t have.

It was a long night. I woke up and the doctors were all in the room talking about his hemoglobin being 5.1. He wasn’t having a lot of output from his chest tubes so we weren’t sure where the bleeding was coming from. His right lung was hazy on the x-ray so they did an ultrasound on his side and the Dr. could see clots and fluid on top of his lung. She said they might need to put in a chest tube and so she started prepping our room to do the procedure. She called the surgeon and he said that she could wait until he got there. Once he got to the hospital he decided it would be better to surgically go in and “wash” him out. He was pretty sure he had some blood just sitting in the plural cavity that wasn’t able to come out the chest tube.

 A risk of bleeding was something we were sort of prepared for even before surgery happened. We knew there could be the risk of having to go back in and wash him out.

They took him back at 11am and we just stayed in the room. At 12:30 the OR called our nurse and told her it went well and they were just wrapping up. We grabbed a few things and headed to the waiting area. I was standing right outside the waiting area waiting to just see him go back to his room so I would know he was good and I could know about when we could go back in the room. I was standing there for a long time and wasn’t sure why they hadn’t come out yet. Then I saw the Dr. walking towards me and she pulled me into the waiting where Ashley and my mom were. She said that he had suffered a cardiac arrest and they were doing CPR and were going to try to get him on ECMO.

The next bit is a blur but one of the other intensivists followed us in pretty quickly and sat with us.

We waited for what seemed like hours and was probably 30 minutes, and we started getting bits and pieces of what was going on but it was a long time before we knew if he was alive.  It was a few hours before we ultimately learned all the details.

I screamed and was in shock.  My mom texted my sisters and told them to get to the hospital immediately and to call my dad.   

Here is what ultimately happened. They closed him up after the surgery, then the surgeon inserted the third (new) chest tube into his right side.  Within a few minutes, his blood pressure plummeted.  They immediately tore open the stiches, opened his chest back up and started CPR directly on his heart.  The surgeon pumped the heart manually and they called in another surgeon to assist.  The 2 surgeons took turns manually pumping the heart in their hand for about 20 minutes as they determined that when the chest tube was inserted it had punctured a lung and was bleeding profusely.  They lost close to 3 Liters of blood. Probably over 3 times his actual blood volume. They must have kept replacing it and he kept bleeding.

While one surgeon was squeezing the heart, the other was trying to stop the bleeding of the lung.  They called in a lung specialist who was able to come in and stich up the lung in the best way to repair the injury. 

In the meantime, the team prepared the bypass machine and they were able to get him on bypass (a different machine than ECMO but similar). 

Once the repair was done and he was leveled out on bypass, they moved him to ECMO and then actually turned the machine “off” and he maintained his sats all on his own. They decided to still keep him on ECMO as it would allow his lungs to repair a bit and give the heart a break after suffering cardiac arrest.

They got him to the room about 5PM.  We were finally able to see Maxley at 6. 

We finally met with the Surgeon about 5 when he came in to the waiting room and told us that he was in his room and getting situated and he explained the entire story.  Then, the anesthesiologist came in after (who was also one of our intensivists for his open heart surgery, and helped a lot on ECMO). He was telling us how many people were in there doing really amazing work for him! I even noticed blood on his shoes. That was very shocking and hard to hear. I know how panicked they must have been and the fact that this is exactly how I lost Scott was maybe on their minds as well. All because of an accident.

We sat in his room, still in shock and watched about 10 people prepare to settle him in.  I felt sick watching them and could not stop crying. I was drained, mentally and physically from this day and was losing it. Too many people running around, yelling stuff, pressing buttons, hanging meds, calling out numbers, etc.

Immediately after surgery, they expect a lot of drainage from the chest tubes.  He now has 3 chest tubes and 2 nurses stood and stripped (pulled blood) from the chest tubes continuously and never stopped and the blood kept flowing.  After the first hour or two, the blood should slow down, but his was not.  The drainage from the right (new) chest tube was increasing.  The intensivist told us at 7 that if it didn’t slow down he may need to go back to surgery.  The ECMO technician kept calling down for more blood, then more blood. They could barely up with blood product faster than he was loosing it. In 2 hours he lost 1.5 Liters (a normal 80lb child has 2.5 Liters of blood, he weighs 26lbs) Thankfully he WAS on ECMO so they could replace it otherwise, they could never have kept up with the loss and he wouldn’t have survived.

At 8PM, the blood was increasing and they had to get back to the OR to figure out where it was coming from. 

They called in an OR team and the surgeon came back to the hospital and at 9:15 they took him back.  He looked absolutely terrible, and we all fell apart.  I was sure I would never see him again. 

They thought they would need about 2 hours to flush the chest cavity and cauterize the bleed. 

We did not get any updates for 2 hours, but then finally learned that they had located the bleeding and were able to stop it.  When the new chest tube was being put in, besides piercing the lung, it also hit an intercostal artery, which is a larger artery by the rib cage.  They didn’t know that it had been knicked. But when the nurses were stripping the tubes non-stop, it more than likely made it worse.  It was in an artery and would have never stopped. 

He got back to the room about 11:30 and everything calmed down.  They got him settled in and everyone including his entire care team took a huge sigh of relief.  I think they were more scared than we realized. 

Since we had been up most of the night before and this was a day of shock and trauma, my mom, Ashley and I were so exhausted, we all crashed at 1AM. 

Saturday, August 26, 2023

We all slept well and Maxley had a good night and rested.  The goal today was to try to wake up the kidneys and work on him peeing and getting fluid off.  Sedation will put the kidneys to sleep.  Once his chest tubes had minimal drainage today, they were able to bump up his blood pressure to push more blood flow to all the organs including the kidneys. 

Finally, about 1:00 today we finally got 5 ml of pee and we were so excited!  We celebrate every hour when they measure the output and this last hour was 22ml., so we are making progress.  He is very edematous (puffy) and does not look like himself at all, but at least now the kidneys are waking up.  The extra fluid is also very hard on the lungs and organs so we need to do what we can to get it off. 

He got a bronchoscopy today at about 2.  The pulmonologist puts a scope down the breathing tube and it has a small suction.  They can go into the lungs and see what they need and also suction blood clots.  Since yesterday, he had already developed several blood clots in the alveoli of the lungs.  They were able to suction some out today, but he will need several done over the next few days to help the lungs.  There was no active bleeding which was really good news. 

We are all spending time massaging him and talking to him and reading him books or singing to him. Tonight he was a little wakeful and cracked open his eyes a few times.  We believe he can hear us so we try to stay positive and assuring of how great he is doing. 

There is no seizure activity which can be a sign of brain injury. That is very common and highly likely with a cardiac arrest. Luckily, he had the BEST CPR you could give. The hand directly on the heart, pumping it and because he had an arterial line, they were able to get an accurate blood pressure to make sure that their pumping was adequate. We won’t know how much damage there could be until he is more awake and able to communicate, follow us around the room, react to things, etc. He did open his eyes wide today when we were talking about his Paci and when he heard grandma walk in! Praying those weren’t coincidences.

I just keep praying he will survive but then I remember that I don’t know how affected his brain was. I am hopeful that it won’t be affected but we just don’t know. Also, ECMO itself has a risk of Stroke and many other complications.

Please keep the prayers coming, we all need them!

My sister was generous enough to start a Gofundme page for Maxley, Grandma, Ashley and I. If you could share it, that would be appreciated. This is a very stressful time with none of us working and just praying he survives.

Today was a good day. Started out slow which in hospital life is always good.

Every doctor who walks in has said they are very impressed with how well he is doing!

When we woke up (during 5am xrays) they started weaning him off the ventilator to hopefully extubate. We worked him all the way down on the vent by noon.

They shut off propofol and his IV morphine at 1:00 so that he would start to wake up. It took 4 hours to get him wakeful enough to get the breathing tube out. Finally at 5:00 (during rounds) he woke up enough to get extubated. They put him on high flow oxygen and is currently on 4 Liters.

He is still super out of it and will grunt or cry for a second and then falls back to sleep. The doctors seem to think it is very normal and nothing to be concerned about. He has said “yeah” twice to questions I asked but is otherwise sleeping.

I miss him.

I was able to give him a few oral cares with his favorite flavor, mint. I was also able to help readjust him a few times which is the most skin to skin I will get while his chest tubes are in.

His calcium is low so we are giving some extra calcium and some electrolytes. They put him on a blood pressure med too. He had low urine output most of the day but seems to be catching up this evening!

They are still kind of playing with external pacemaker to get the best reading and the best settings for his heart.

He got his last bump of morphine at 6pm. Then we switched him over to torodol and will rotate tylenol and torodol every 3 hours to hopefully keep him off the narcotics.

We got to see many of our favorite nurses and doctors today too which is fun. Everyone is so surprised at how big he is! They come in and say hi and look at pictures of him and ask all about him.

Ashley was here most of the day and we always had one of us sitting next to his bed. Hoping for a peaceful night for all of us!

We are in Maxley’s room and he is doing amazing!!

The next 12 hours will tell us a lot about how everything looks but so far everyone is very impressed with him.

They have been watching his bleeding output closely. That is always a concern and this big of operation makes bleeding a big risk. He got 4 transfusions today but they will continue to watch his output and there is a chance they would need to go back in and clean up the internal bleeding in the next day or so.

They are titrating down his oxygen levels and is handling that really well. As of now both the top and bottom parts of his heart are pacing on their own but his heart rate is so low (which is his baseline) they are going to continue to use the external pacemaker to set it at a more tolerable number.

This will continue to be an ongoing conversation of whether he will get a pacemaker before we go home. There was a chance he would NEED one due to his heart not pacing again on its own which is now ruled out but they may still give him one because he has always had such a low heartrate.

Both of my sisters came up to visit today/ brought us food and kept us company and Ashley (nanny) was here all day.

It feels so good to be by his side and see him looking so good. There is a still a really long way to go but praying it is only up from here.

Hoping for a good night sleep for my mom and I in our new temporary home!

10:43am He is prepped and the surgeon is beginning his sternotomy.

We sent him back to the OR (8:48am) and put Maxley’s life and future in the hands of the doctors and nurses. Please pray for him to make a full recovery and be back to his LIVELY self very soon!
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I will continue to post updates throughout the day both on my story on Instagram and on here.

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Expecting about a 12 hour surgery.

I officially have a 5 year old!

I can’t believe it. We celebrated his 5th birthday this past weekend with family and friends. Of course, he turned 5 so we had to have a Five Guys party, or as Maxley called it, “Burger Fry Party!”

My in-laws were able to fly in to be here and Pam made that incredible cake and the cookie french fries with frosting ketchup!

Of course we also had to get pictures done at a Five Guys with the incredible Amy!

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On a much less exciting note, we finally got surgery officially scheduled for Aug 23rd. I am beyond petrified but glad we have 9 weeks to to spend together before finishing out the summer in the hospital. I have one ask, same as last time, that everyone wears Team Maxley gear on Aug 23rd (or something green, his new favorite color) and send me a photo or tag #teammaxley on social media. It meant the world to me last time and was a SUPER fun way to keep my mind busy during the 10-12 hour procedure.

If you don’t have Team Maxley gear yet, support us by shopping here!

This is a very invasive surgery and will likely lead to him needing a pacemaker put in during this hospital stay. We are waiting to hear back from his surgical team to set up a meeting to discuss more of the risks and all that goes into this surgery. We are expecting at least a few weeks in the hospital. My mom is planning to stay with me every night and I am sure I wouldn’t be able to keep Ashley away even if I wanted to!

We will take all the thoughts and prayers you want to throw our way. Prayers for peace of mind for my mom and I leading up to surgery and the day of. Prayers that the doctors are able to perform the operation with no hiccups, it is a complete success and there are no complications. Prayers that Maxley comes out of surgery himself.

Thank you everyone for your love!

I was finally able to speak with Maxley’s Cardiologist last week and we are moving ahead with surgery for this summer. As of now it is scheduled for July 31st but we are hoping to push it back a week or so. He will behaving a Ross-Konno Procedure which is more involved than we thought it would be.

The Ross-Konno procedure is an open-heart surgery done under general anesthesia and cardiopulmonary bypass. It involves removing the damaged aortic valve, removing the pulmonary valve, and putting the pulmonary valve in place of the damaged aortic valve. Then a donated pulmonary valve (animal or human) is attached in place of the removed pulmonary valve. The left ventricular outflow tract is also enlarged to enhance blood flow.

The chances of needing a pacemaker post op are very high.

More information to come but wanted to share all the news I have as of now.

I have had a few requests for Team Maxley Apparel again and I would LOVE for everyone to wear their gear the day of surgery again!

I am currently in 2nd but have to be in 1st by tonight to make it to the next round. Keep voting! Share with everyone!!

I could win $20,000, a weekend in Palm Springs and a spread in Women’s World Magazine!

HELP ME WIN!!!

I am participating in a contest for $20,000 and would LOVE your support. Can you vote for me?

As you know our life hasn’t always been easy and the money would be life changing for us!

I thought I would hop on and post as we had a very eventful March.

Maxley and I got to go to a weekend away with some friends in northern Minnesota. These are 3 of my coworkers and closest friends. I am so lucky to have found these women at my work 6 years ago. We met when only 2 of us were married, the other 2 have since gotten married and now we have 6 kids between us! We don’t all work together anymore but we get together a lot! 🙂

Then we got to spend a week in San Diego!–> More pics to come.

It was such a fun week and got to spend time with more of our favorite people and lots of time to relax. I wanted to go for what would have been Scott and my 6 year wedding anniversary. It was so nice to spend it on the beach!

Of course the BRAND NEW Sesame Place in San Diego opened on our wedding anniversary so we had to spend the day with Maxley’s favorite monster, ELMO!!!! We didn’t tell him until the morning of and he was so excited!

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For the last and for sure not the least, we had a follow up cardiology appointment on Friday after we got back from CA. He had a chest x-ray, an echo (ultrasound of his heart) and then we met with the dr.

It isn’t good news. His LVOT (which is what we had repaired this past June) is looking worse every time we go in which is every 3 months. It looked SUPER good post surgery and has slowly been leaking more and more. As of right now he is at a peak gradiant in the low 50’s and once we get to the 70s we have to intervene. He was 20 post op still in the hospital, 26 in Sept and now 50’s. That means he will need another open heart surgery likely in the next year if not much sooner. We are looking at a heart cath in the next 6 months and then likely moving forward with surgery. This next procedure is a much riskier one in that the chance of a pacemaker is much higher.

I try to live in the moment and not think and stress too much about it but it is definitely scary. It is a LONG time out but I would love to have everyone wear Team Maxley gear again so if you wanna start shopping, feel free to shop here!

I love all of the support we got last time…

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I work for Shutterfly and have a friends and family discount!

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They are one-time use code so contact me if you’re gonna order and I’ll send you a code!!

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Please share with family or friends who you think might be looking for nursing work! They only require 2 shifts per month so there is very little commitment and it would change my world!!

 Well… my fear has been realized. Maxley tested positive for COVID today. I am still in shock.

I can’t even make this up. I don’t understand how one person can be expected to deal with so much. I am mentally exhausted from having to handle one thing after another.

Maxley woke up this morning with a cough and he was lethargic and not himself. By about 11 he had a fever of 102.7 so I booked him a COVID test and soon enough they called with the results.

He hasn’t been anywhere so he must have got it from a nurse or I which sucks.

He is still very much out of it and his coughing is horrible. He still has a fever even with Tylenol but he is maintaining his O2 sats above 94% which is great!

I will wake up a few times overnight to check on him and make sure he is maintaining his oxygen. I am just praying he works through this and we can stay home.

I packed my hospital bag tonight just in case.

We have been enjoying our quiet time at home! We got to celebrate the 4th of July (independence day) outside of the hospital and my birthday!

I am now 33 and Maxley is 3! 🙂 Scott would have also been 33!

It has been quiet around here which is nice. I didn’t have a nurse our whole weekend at home until Monday and that was a lot so grateful to have help again. His new med schedule is A LOT and he is on continuous feeds and puking everyday too. Gets to be a lot and of course I am back at work too.

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Maxley had his post surgical follow up yesterday and it went great! It was downtown at Children’s with the cardiologist. He got a chest x-ray and labs and then we met with the doctor.

His x-ray looked much better which is great! If you remember, he had a lot of fluid on his lungs which is what kept us in the hospital a few extra days. We were able to stop one of his diuretics which is great! The doctor hadn’t gotten the labs back yet but he said he would let me know anything noteworthy on there!

We will go back in a month for more labs and a routine echo of his heart to see how the fix is looking.

Maxley is still a little fussy and whiney. I think he is still just not 100% himself. He hasn’t gotten Tylenol since yesterday morning so he is officially off of all pain relievers.

Mostly he seemed happy today and he took a long nap and went to bed easily.

I was able to go pick up Mountie today from the breeders where she has been staying for the last 2 weeks. It was so fun to see her again and she jumped on me. Safe to say she missed me!

Maxley seemed excited to see her when we got home. It was super cute. He kept kissing her butt. Ha ha The breeder is about 1.5 hours south so I left Maxley at home!

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Other than that it was a mundane day. I am glad to have those!!

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Make sure to follow me on Instagram for more pics and videos daily!

Home.

Home Sweet Home.

Yes!! That’s right, I am writing this from my own bed in Prior Lake, Minnesota!! I have a smile plastered to my face right now. It isn’t from all my neighbors who just stopped over to see me or the giant sign out front of my house when I got home. It’s from just being here and being so damn grateful to be here, with him.

We woke up this morning and our nurse said, orders are in, we are getting you guys out of here!! Discharge always takes forever and you wait on every little thing but we ended up getting home about 1:00! I put him right down for a nap and then my mom started to unpack a little while I made his med sheet out.

He is on 5 new meds and some say 2 times a day and some have specific times and some are time sensitive so it took a long time to write it all out and then another hour to draw up all the meds for tonight and tomorrow morning because I don’t have a nurse all weekend.

I think he is excited to be home but hard to tell. I am doing to go get Mountie from the breeder tomorrow so I am excited about seeing her and them together again!

He is still in a funky mood and cries and screams when I leave the room. He doesn’t wanna play or do anything. He just wants to cuddle and watch movies or his iPad.

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It will take us a while to get settled again and get laundry done and put away and the house cleaned and picked up but I don’t care. It feels so good to be in my own bedroom. He will sleep so good tonight.

He got to have a bath tonight too! We just can’t submerge his incisions or pour bath water over them. It has to be tap water washing his hair off since it runs over the incisions but he can NOT keep his hands off of them.

He looks incredible though. Who would have known he had open heart surgery last week. It’s crazy. He doesn’t even know what a badass he is.

He still has a bandage over his central line incision so that’s the white bandage on his shoulder. You can obviously see the vertical “zipper” scar from his sternotomy. The two scars right below the vertical scar are from his chest tubes (blood draining) and then the small scars are from the pacing wires.

I feel like there is so much more to go over but all I can think is that we are home! I am so lucky. I am so so so lucky.

Happy Birthday to my mom!!! A BIG 60!!!!!

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It is also Canada day and very unlike me to bring a Canadian outfit but I didn’t! Ooops.

We did very little to celebrate her today as she worked downstairs at Ronald McDonald and of course, it is just another day in the hospital. Trying to entertain Maxley as much as possible and talk to the doctors, nurses and specialists that come in to round on him.

Again these days seem to fly by but I am getting more and more anxious for the OK to go home! We don’t actually know when we will go home until the morning of. They can discharge any time of day so if they gave us the go at any point they would just send us home vs waiting until tomorrow. All they keep saying is we are getting close! Ugh. Painful!

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We have gone a whole day without watching the Curious George movie. Phew. He has actually been wanting to watch Trolls too so that is nice but at home Curious George is on at 4:30pm and our nurses are done at 5pm so we turn it on and let him watch it and it gives our nurses time to finish charting before the end of the day.

It is so nice to be able to dress him in normal clothes now that his central line is out we can out clothes over his head again. It is SO much faster too. It is still a lot of cords and tubes to undo to get pants on and stuff but you get used to it.

He did more walking today and he LOVES baby William here and I can get him to go just about anywhere if I tell him we will go see baby William. And he loves Addy too and she is in the room furthest from us so we take turns me carrying him for a little and then I set him down and walk a little ahead and he walks to me and we go see Addy! Her surgery went really well so thank you everyone for prayers for her!! She is a tiny rockstar with half a heart but a whole lot of personality.

We woke up with a new kid this morning. He has been so happy today and we made a lot of progress!

We got rid of his central line (IV on his left shoulder) and he is off oxygen!!

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We got to pull his pacer wires today too! We ended up doing a few EKGs to look into that weird heart pacing issue and they said it isn’t something to be overly concerned about. They will continue to monitor it while we are here.

We asked the doctors today about getting off of a few of his meds when we get home and so we ran extra labs today and got to go downstairs for an x-ray to look at his bones to get off calcium.

We walked for quite a long walk today and by that I mean down the hall which was a few minutes. Here is us walking and you can see his little pack he has on. It is called a cardiac pack and it is a wireless monitor and then it projects to the people at the front desk who monitor all the heart rhythms for all the kids in the unit. So they hook him up to that machine and call the front desk and tell them to turn his pack on and then we can walk. At this time he was off his IV and we paused the feeds so he was cordless which was encouraging for him to walk I think. It is the longest he walked after all.

Then at the end of the video you can see how we have to pick him up because of the sternal precautions.

He is so crabby. This isn’t Maxley. He is just so crabby. He says no all day at everything. If I kiss him or touch his head or rub his back or sing along with elmo or dance or move or breathe. He says no at legit everything I do.

He is just not himself at all. We ended up giving another dose of oxy tonight to get him moving and walking and that seemed to help but we can’t keep doing that either. He is just holding on to a little extra fluid around his lungs and it doesn’t want to seem to budge. We did get him walking a little without blood curdling screams.

We did work with PT again today too and he screamed through most of it. He didn’t wanna stand or walk or anything. It is exhausting to watch and suffer through.

After PT we did get to go outside with a friend of mine and her son! I met Katie a few months back at a women’s retreat for moms of kids with heart defects and they are currently living here so that was a nice outing!

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He threw up again last night, and they are massive pukes. We ended up going up quite a bit on his day feeds so that we could get him off of night feeds tonight so we did that but as I was halfway through the last paragraph he started gagging and had another huge puke. The nurse came in right at the end of cleaning him up and I just broke down. I am TIRED of vomit. It feels constant at home and now here. He throws up so much and it gets everywhere and you have to change every bedding, every item of clothes (and here it isn’t easy with the IVs and cords) and I am OVER it. The doctor wants him on full feeds to go home but that just isn’t happening and it is frustrating.

I know I should just be so thankful to be here with him and he is healthy but I am tired of being here. I know that makes no sense after soo many long stays but it is really hard this time. He is so unhappy and he can’t get around and move and it just sucks.

Then tonight the nurse came and told us that his heart is back out of rhythm. It isn’t the junctional rhythm like before when it wasn’t pacing right it is a Premature Atrial Contraction (PAC) rhythm where your heart sort of misses a beat for lack of a more complex explanation. So, we just ran a bunch of labs and everything looked normal so now they will be monitoring that overnight too. It isn’t a huge cause for concern and many of us have that and notice it as a skipped beat but his is happening super regularly starting tonight only when his heart rate droppped below 80.

Just another thing.

I just think we would be better at home at this point. I am a little worried about this rhythm thing but if that gets resolved than I know he would thrive more at home where he has his things and can run around.

The pulmonologist who came in today (not our normal one) was trying to say that she didn’t want to send us home on oxygen if he was still using it during the day. I was like, what???? Why? We have been there and done that and that is NO big deal to us. We have all the equipment at home and know we would be just fine and how would it be any different than being here tethered to the wall and only being able to walk in a 2 foot radius.

Ugh. I have so much to be grateful for but I am having an evening of self pity.

We did move to enteral diuretics today so one step closer for sure! That is “oral” now but since we give it via g-tube it isn’t called oral if that makes sense. We were hoping to pull his central line today because it was due for a dressing change but they weren’t quite comfortable with that yet which I agreed too! I don’t want to have to poke him again or redo an IV if the enteral isn’t enough. Which, we would have had to do tonight to do labs but instead they can just draw blood from his central line. It looks much better now that it is cleaned up.

His chest scar isn’t looking too bad either but he keeps picking at it which is really bad!

On another note, we have a friend we met here in the CVICU who is going to surgery tomorrow to have her valve replaced (something Maxley will likely need at some point) and if any prayer warriors could send up a prayer for sweet Addy that would make their family really happy.

Today didn’t go as planned. Today was hard. He was crabbier than I would like him to be. He doesn’t want to walk, he doesn’t want to rock, or cuddle or do anything. Is it pain? Is it being cooped up? Is it being stuck in a room with his mom because I GET THAT! Being stuck in a small room is hard. For some reason it was easier last time, why? I don’t know?

Did I have more patience? Was I numb? Was it that he was so small and easier to entertain? I don’t know. He is hard to soothe, hard to entertain and hard to keep calm.

He needs to walk for us to get out of here. At this point the IV diuretics aren’t doing everything and he needs to walk to get the fluid off of his lungs but he won’t. So, do we give him Oxy again to make him “happier” and calmer so that he can walk so that we can get out of here? I don’t know.

It is hard.

This picture sums up our time here.

I don’t show this to be funny or to make fun of him at all. I just feel like this so perfectly sums up our day today and a lot of our stay here.

A messy hospital room, Maxley crying, cords and tubes coming out everywhere and him refusing to walk.

When you put him on the ground he just screams and my mom “can’t handle” when he cries and she feels bad. I teased her and said she needs to leave the room tomorrow when we make him walk because I am harder on him. He was hitting a lot today too and I just don’t tolerate that.

We tried to re-arrange our room today to put the bed by his IV pole so he could sit on the bed/couch with me and that was good for a while. He laid and watched his iPad and was content for a bit. It is more iPad than I prefer but whatever makes him happy.

He got the IV in his right arm taken out today which is awesome! We were hoping to make more progress on his IV diuretics and moving him to enteral today but that just isn’t happening. He needs to be enteral for a few days before we can think about going home so he needs to get walking or we will be here a while…

He was doing really well with his oxygen saturations this morning so we were able to actually shut the oxygen off for about 3 hours but then I think his lungs got tired and he was on 1/4 Liter the rest of the day.

We moved down from ICU status today to IMC status (no longer in intensive care)!!!! Today is 7 days post op… last heart surgery it took 92 days before we moved from the ICU. NINETY TWO DAYS!!!

He had a massive puke again overnight which isn’t a huge deal but since we are now in IMC we have a different team rounding on us and they want to see him at full feeds before they will discharge us so that adds to our to-do list.

Mondays mean a new team of specialists too. They round for a full 7 days and then switch on Mondays so we got new Drs today rounding on him. The intensivists switch on Saturdays so they have a little different schedule.

I went outside for the first time all week today. Some friends came and brought me some goodies so I waited outside on a bench for a few minutes and it was nice to step outside! I also got to work for an hour or so today too! Believe it or not it is hard to find time to DO anything productive. Feels like it is constantly go go go, entertain Maxley, get him this, do that.

He actually slept in his bed for 2+ hours today for a nap, for the first time since surgery. That is when I ran down to the cafeteria and worked for a bit. Nice to get out of our tiny home.

As I am writing this we are just over exactly 1 week from seeing him post surgery. How was that ONLY a week ago!?

Looks like it will be at least a few more days in here but we are hanging in. My phrase I use a lot is… it could always be worse.

My mom and I say this often while “living” here… it is like an alternate universe here when it comes to time. As soon as you wake up, it is time for bed. It is so strange how fast time goes. It seems like every 5 minutes we are trying to figure out what we are going to do for the next meal or getting set up for bed.
It makes it a little more reasonable of how we did so many months before this.

We are friends with so many of the doctors and the nurses and so when they come in we end up chatting forever and time just flies!

Maxley had a rough day today but clinically is great. He was happy this morning but this afternoon he had been so cranky. For hours we tried everything but he wouldn’t nap, we took him on a walk and he just fussed the whole time. He didn’t wanna watch TV or anything either. Then, he had a big poop and was super happy this evening. He has had 3 big ones since! We were getting worried if it was that we went down too fast on the oxygen or if the food rate was bugging him, we tried everything, up on the O2 and down on the food, but nothing helped.

We are trying to get him off that Toradol (IV tylenol), isn’t a narcotic but they don’t want him on it longer than 7 days which is obviously tomorrow so we need to try to get him off that but today wasn’t the day.

After he was feeling more himself my mom and I got him walking quite a bit…

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We did some playing on the ground too which is fun! It is hard to be stuck in a 2 foot radius with a 3 year old. He wants to move and he can’t. We need the nurse to help us suspend his sensors and move him over to the portable monitor and shut off his oxygen and move to the tank so it is an ordeal. So, unless they can help us, we are stuck in that bubble and he can hardly go anywhere except his crib or the rocker.

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Today we got down to 1/4 Liter of oxygen which is AMAZING and so he can be hooked up to the wall (low flow) and then we have a LOT longer of an oxygen tubing that we have a bit more freedom. His feeding tube is still really short but that is on the IV pole so it is easy. His other oxygen he was on was a separate pole with a short leash. Hoping to get out even more tomorrow. He wanted to cuddle on the couch with me today so hoping to do that tomorrow!

We met with pulmonology today and she is super happy with how he looked so that is great! She thinks we could be off of oxygen before going home so that would be super great!!

We went up to 30 ml/ hr on food. “Full” feeds would be about 40 an hour and that would get him the 950 he is on at home so we will continue to work up to that but the doctors are really comfortable with letting us do that at home too. Usually, they want you back up to full feeds before leaving but because we have nurses at home, we can do it there too. He normally gets 5 bolus feeds a day meaning 5 different tube feeds at home of 190 mls over about an hour and a half but I think it will take a bit to get him back up to that, no rush I guess!

He also had a rough night last night and my mom said she got up with him every hour or so. She figured out after a few hours that his central line on his chest has an IV coming out of it and it was wrapped under his armpit and then had a onesie on so it was pinching really bad, after that, he slept so hoping for a better night.