Honeyed Heart

Another pretty boring day. I am wondering if you all are getting bored of reading these boring posts. I am not getting bored of writing them that is for sure.

We figured out this morning that we were giving him the wrong food so it makes sense that he had been vomiting. He threw up a lot again a lot in the middle of the night. He has been on his correct food for about 12 hours and so far so good.

We went on a walk and he sat in the wagon and then we chatted in the hall with some other families for a while and then the charge nurse came up to us and said we were moving and so we quick packed up and he ended up sitting in the wagon for almost 2 hours on his iPad which is so good for his lungs!!

We moved rooms from 15 to 24. There are only 25 beds so there is only 1 bed further down than us. We are still considered ICU status but they needed the room we were in for a more severe case so off we go. The room is a lot smaller but we are hoping to be here just a few days to a week so we will make due!

We are down to 3 Liters of oxygen today. He seems more himself and was much happier and giggly! We got on the floor and played some and we went on a few walks too.

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We are down to 3 things before getting to go home:
1.) Get off of his IV diuretic
2.) Get the fluid off of his lungs (goes hand in hand with #1)
3.) Get down to at most 2 Liters of oxygen

This could happen in 2 days or 2 weeks. Hard to say at this point. Sometimes when there is very little left to go, the time goes SO slow. I almost wish he had a long list left because it would seem like it makes sense to be here but sometimes you get stuck on 1 thing left and time crawls by. Not sure if that makes sense.

Just funny that post open heart surgery we are ALMOST ready to go home but there are just 3 tiny (not so tiny) things holding us back! I am not in a rush to get out of here at all. But, still nice to know what we need to do to go home. You don’t want to be thinking you only have 1 thing left to do and then you do that thing and then find out you have 6 more. I still can’t believe we could be going home less than 2 weeks post-op.

Cheers to night 227 in this hospital! 🙂

Another great day!

Not as much happened today but we did have an EKG and an echo and the cardiologist came in and said they looked great, GREAT!!! We NEVER get a great! The LVOT (what they operated on) looks awesome, complete success! The ventricle they worked on looks great too! Wow! What a success. When the surgeon came in to chat with us today I asked him if looking at the echo was like looking at a finished painting as an artist, it is like getting to see your final product and must be so very satisfying. He just kind of laughed it off, he is very modest but as he was leaving my mom said, wave at the Dr, he has saved your life multiple times!

We were able to bury his pacer wires which means we took him off the pacemaker and wrapped his wires and taped them down onto his chest. They are still attached to his heart in case we need them but don’t need them hooked up anymore. Up until today his pacing wires have still been hooked up to the pacemaker so, big step!

We worked with PT today and got him walking a lot more and he did about 20 sit to stands from my lap! We went on 4 walks too! We got to play on the mat in his room too!

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Last night he had kind of an odd night. He started grunting yesterday evening and we didn’t think much of it but then but he was irritable last night and the grunting with every exhale got worse. We ended up calling in the intensivist and she ordered a chest x-ray to make sure there wasn’t fluid build up from where the chest tubes came out. The x-ray came back and looked fine but they did think it meant he was in pain. We ended up doing 2 doses of oxycodone today and he was MUCH happier. He was waaayyy more himself and we got much more of his personality back.

We did day feeds but he had a big vomit so not sure how that will go.

Not much happens on weekends around here so we are hoping for a very quiet uneventful weekend.

Big day today!!

A lot of changes! Last hospital stay everything happened so slow that I don’t think we have ever had SO many things happen in one day.

We started the morning by turning off his pacemaker and he has been pacing ALL DAY all by himself!! Hallelujah, my mom and I teared up!! We also got his chest tubes taken out which like I mentioned yesterday can be the most painful part of post-op, so super happy to have gotten rid of those!

Then, while we were doing music therapy, the charge nurse came in and said we were moving rooms!! We went from room 5 to 15 so, down the hall. We are still considered ICU status but our nurse has 2 patients instead of just Maxley. We have a bathroom with a shower now too! It just is less important for us to be RIGHT by the post-op side. The doctors like to have all the critical cases all by each other since that is where they spend the most time.

Once we moved, a TON happened. We were able to get off of the nitric oxide which is a huge step. It also meant we can go for a walk so we got to put him in a wagon and walk around the unit. We started him on a IV heparin (blood thinner), they also started him on a blood pressure med, they went down to 50% oxygen, we started feeds last night and most of today and so far, so good but we are starting really slow.

We also got him down on the play mat when PT came and he walked a few steps a few different times back and forth between my mom and I so that was nice but it wore him out for sure.

We have had a few glimmers of his personality but overall he is till very much not himself. He is very grumpy and very fussy unless being held. My mom and I take turns holding him but she is also working so I hold him a lot, which I LOVE but I can’t get up or get him by myself. He has SOO many tubes and wires and since I can’t grab him on his sides, it’s very difficult.

You have to go to the bathroom, get your water, your phone charger, anything else you need before you sit because then you are down for hours, ha!

Yesterday we watched the Curious George movie (it is on their movie channels and it is ALL he wants) about 14 times and just sat with him but today it was only about 4 times, he mostly just slept on us all day. He is sleeping pretty good at night which is good.

Wow, so many changes. Hoping for another good night and productive Friday!

Another good day.

He was even more puffy this morning but we added in 2 doses of IV diuretics and he had a ton of fluids come off today. He looks so much better even by this afternoon!

He was in a much better mood today for most of the day but then bouts of worse mood than yesterday. They say the pain can be worse day 2-3 so he might have been in more pain today but overall was really good, I even got a giggle.

They took him off the CPAP today and moved him to high flow. He is now on 4 liters of O2. We will continue to lower the support and also they are lowering the nitric support every 4 hours too.

I ran to shower quick and when I got back everyone was standing around his bed and his pace maker wasn’t working, they ended up trying a few things and it seems to be working ok now but that was a scare. We had a scare earlier too when he was screaming and throwing a fit his oxygen dropped really low and the NP came in and we were all standing around and couldn’t figure out was was wrong. His lips were purple and his oxygen dipped to 20% and then was lingering about 50% and I was very nervous. You can tell when the staff are nervous, it makes you nervous too but then we figured out his cannula wasn’t connected to the O2. That brought back the trauma of the crisis episodes he was having after his last surgery and they were horrible. So close to having to resuscitate, it sucks. I am ready to be healthy and home.

I finally got to hold Maxley which was the best. I missed that and had only been 2 days, I went 72 days after his last open heart surgery. We took turns holding him most of the day. It took 2 of us to get him into the chair with someone but it felt so good and he missed it too because he slept almost all day in our arms.

VIDEO on Instagram

Other than holding him, it seems like we spend 80% of our day untangling cords! He still has his central line on his left shoulder and an IV in his right hand. We got to take the one in his left hand out which is nice, we are getting down there. We are down to his right IV, central line like I mentioned, his pacer wires, his oxygen cannula, g-tube and his chest tubes. Then he obviously has his leads measuring respiratory rate and heart rate and his pulse ox.

When he was fussy he would point at the floor like he wanted to get down but he can’t walk with the machines he is still on, hoping to wean some more on the nitric oxide so he can be more mobile. We did get him to stand in his crib twice today but he was really unhappy. The nurse was telling us that the chest tubes can be the most painful part ESPECIALLY when standing because then the bulbs hang out of his skin and pull which can really hurt.

He also got his bandage from his chest taken off today. It still looks really awful but should be healing well!

Another great day with lots of changes.

He had a great night and we slept pretty well too. We were up at 7 for rounds to hear what the plan was for the day.

They wanted to de-intensify his care, meaning get him off or down on as many things as possible and man did they do that. They took him off the propofol around 11 to wake him up, that was the only thing really keeping him sedated. It took a long time for him to start waking up. The doctors wanted to see his eyes before giving the go-ahead to extubate. He was thrashing and moving quite a bit but didn’t want to open his eyes. Ultimately, the intensivist gave the go-ahead anyway because he was fairly awake.

He was able to get extubated around 12. At the same time we got to pull his NG tube, this afternoon we were able to pull the catheter and the arterial line came out this evening. So many amazing changes today!

He started waking up an hour or so after getting extubated and all afternoon was a battle. We would spend 20 minutes getting him to calm down and he would finally fall asleep and he would sleep for about a minute. This went on for hours. When he woke up he would thrash and cry and was miserable. Around 4 we switched him to a new med called toradol that is an IV med more like a tylenol but worked wonders.

The hard part is obviously all of his cords and tubes and wires but his pacing wires are keeping his heart at the right rate so we are extra cautious and the chest tubes for the bleeding. The other really hard thing is that you can’t pick him up under his arms for 6 weeks due to his sternotomy so that is such a challenge to settle him, and move him. We can’t rock him yet which is what he really wants but hopefully soon.

He is really puffy still. I am hoping some of this fluid starts to come off because he can’t even open his left eye.

I spent alot of the day cuddling him in bed with no complaints from him. He was so sweet and towards this evening was back to himself. He only got one bump of fentanyl today so we have mostly been able to stay off the narcotics. The spinal block ran out at some point today too.

The pacemaker is still pacing the atrial section of his heart. We are testing off of it once a day but he went down to 50 which is much lower than we want. That may still take some time.

The bleeding to his chest tubes has been minor which is great!

He was able to drink some juice today and he drank 3 mini juice boxes but then threw up a few hours later. We were able to offer him crackers, yogurt and popsicles but he didn’t want any of them.

He started signing this afternoon too! He asked for elmo of course but his first sign was more after giving him a drink of juice. He was content watching his iPad and would nod off for a bit.

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He is finally asleep and has been the whole time I have been writing so maybe we will all get some sleep tonight. He got moved to a crib tonight too since he has been so mobile. The downside is that I can’t lay with him now but hopefully tomorrow he will be more himself and we can play a little more.

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I wanted to touch on surgery yesterday too now that I have a tad more energy. What the initial surgery was meant to do was fix the tissue build-up in his Left Ventricular Outflow Tract (LVOT). The surgeon described it as think of a clogged pipe.

They needed to go in and clear out some of that excess tissue like the picture shows. That part was very successful. This will allow the blood to flow more freely without causing issues. There is a chance this tissue could grow back but he doesn’t believe it will. The other procedure was much more invasive but didn’t have the risk of the tissue coming back but glad they chose this one as it seems like it worked without the extra risk.

The other thing he was going to look at while he was in there was his mitral valve. He has some mitral valve regurgitation and that would cause issues in the long run. He wanted to just take a look at it but was ultimately able to fix one of the holes to limit the regurgitation that was happening. There is still one more hole in the valve and so he will need that fixed in another open heart surgery in the future but he is hopeful that is many years down the road. The benefit of what he did is there is a chance now that he won’t need a mechanical valve which has been the plan all along. So, we will see as he grows but not having to put in a mechanical valve means that next surgery could be his last and he wouldn’t need to be on blood thinners the rest of his life.

What a day. Let me start by saying he is doing incredible.

I am still in shock and don’t even know how to put into words how amazed I am at this child and these surgeons and all of you for your prayers, love and outreach!

It was a long day and we are exhausted. We watched him walk back to the OR at about 7:45a and got back to his room to see him at 6:30p.

See previous posts from today but his surgeon was very very impressed with how well it went and better than expected.

I might be too tired to explain the ins and outs of the procedure tonight but really really good news.

I could feel the prayers all day and felt so calm and so at peace. Looking at the #teammaxley pictures rolling in kept us entertained for hours. We laughed, we cried. We got to see friends we met from his last big hospital stay and it overall was as good of day as any major operation can be. I couldn’t reply to the hundreds of messages and prayers and kind words people sent. There were so many pictures I hope I saw them all! I am blown away by the support, seriously.

Right now he is stable. He has very little bleeding coming from his chest tubes which they were worried about because this is his 2nd sternotomy which the surgeon said is a higher risk for excessive bleeding. He has been able to wean off of some meds already. We have also gone down a tad on his ventilator support. His blood pressure is a little high but as the rounding intensivist says, that is a good problem to have. We are just working on monitoring the blood pressure and making sure the bleeding doesn’t increase.

He is still intubated (breathing tube), he has an NG to suction excess fluid from his stomach, a NIRS to monitor kidney, function and oxygen saturations in his brain, he has a subclavian central line, an arterial line, and two IV lines as well. He has a catheter, 2 chest tubes, and pacing wires.

The atrial (top) part of his heart is not currently beating on its own, it is currently being paced using an external pacemaker. They are hopeful it will regain its ability to beat in rhythm in the next few days.

He looks amazing right now. He has a long way to go but I couldn’t be happier in this moment. All of our old nurses keep coming in and saying how big he looks and how amazing he looks after such a major operation.

We are off to try and get some sleep! Thank you all, your love today means everything to me. I do not think we would be where we are right now with all of your love. Thank you thank you thank you.

Kelsey, Maxley & Terri <3

Surgery day!

They took him back to the OR around 7:30am this morning so my mom and I are in the waiting room twiddling our thumbs.

We said a prayer with Maxley before they walked him back and he was in good spirits.

I will post several updates throughout the day as they come. They are usually few and far between but will try!

Update 11:20a:

Took 3.5 hours to get the central lines placed.

All is good!

They are just “starting” which means they are making the incision. That can take a long time to access the heart since there is scar tissue. The cardiologist just stopped in and said he thinks I’m maybe 1.5 hours they will be moving to the next step which is putting him on bypass.

Update 1:45p:

He is just now about to get on bypass. The cardiologist just came in with the update.

He was hoping they would be a little further along but he had a lot of scar tissue and they wanted to go slow and get it just right. If you do it “right” now, he should have less bleeding post op.

It’s going to be a very long day/ night.

Update 3:15p:

Cardiologist just came in and they have removed most of the tissue build up in the LVOT (left ventricular outflow tract). Everything is going well.

2 surgeon in there working intently. Great news!!

Update 5p:

He is off Bipass and they are working on closing him up. Cardiologist said this was a complete success! 🙌🏼 We should be able to see him in the next 2 hours!!

Update 6p:

Just met with the surgeon and he said it went better than expected!!!

He is very happy with how it went. I will post more in my blog tonight of the specifics and medical jargon.

Thank you all for your love. We are crying tears of joy over here.

(Posted June 17, 2021)

We had the most wonderful birthday party for Maxley ON his 3rd Birthday! We had beautiful weather and so many people we love! It was definitely a day worth celebrating!

Balloon Arch: Blush Custom Event Decor
Photography: Amy Mullenmeister Photography
Bouncy House: Froggy Hops
Cookies & Cupcakes: Fergalicious mmm Delicious (my mother-in-law)

As surgery is quickly approaching, I thought it would be fun to have everyone wear their TEAM MAXLEY gear for his surgery on June 21st!

I have created a Facebook Event for the day of surgery. This is just a moment for you to stop and say a prayer or send good vibes for Maxley and his surgical team If you are so inclined to wear a Team Maxley shirt, great! The event link is here.

If you wear a Maxley shirt, post it on social media with the #TEAMMAXLEY.

If you don’t have any Team Maxley gear yet and want to check it out! You can place an order through May 31st! I also added Kids Apparel! Proceeds will go to Ronald McDonald House!

Thank you everyone for your love and support!

Adult Team Maxley Clothes
Kids Team Maxley Clothes

I have a few updates to share!

The first is that Maxley broke his leg last weekend. We don’t really know for sure how but we think going down a slide. You can check out the video on my Instagram Reels. He will get the cast off on Monday the 24th. Which leads me to my next update…

Maxley is having his 2nd open heart surgery on June 21st. It was something we knew would come eventually but I personally was hoping he would be 43 or so. 🙂 I am super thankful we were able to wait until after his birthday so we can celebrate him turning 3!!!

This is a very big procedure and with it comes big risk. We met with the surgeon last week to get a grasp of what the procedure is and what they need to do. The procedure is too much to explain but it is called a Ross- Konno operation if you feel like reading up on it.

There is a good chance they will be unable to sew his chest back up and so that will remain open for a few days. He will also likely be unable to get his heart beating again on its own so he will come out on another form of ECMO where the machine will be pumping his heart for him. (Last time he was on ECMO (the highest form of life support) he was on VA ECMO which does the function of his lungs or breathes for you where his heart was pumping on its own).

There is a lot more too it than that as to why he needs this operation but the short answer is that this is not uncommon with this heart defect. We found out last June this operation was inevitable and I had a feeling it would be now. When we went in April 30th for his echo and meeting with the cardiologist we found out he needed it in the next month or 2.

Maxley needed 2 things before his operation in June. He needed a CT scan to look at his heart which he had today and did great. We are already home. Then, next Tue he needs a heart cath which should also be out patient.

There is a lot to prepare for with this surgery as it will be a few weeks in the hospital again (if all goes well, maybe longer if it doesn’t). Everyone has been asking how they can help and honestly, I am ok. I just need prayers.

I thought it would be really incredible for everyone to come together and have a moment of prayer (or thought) for Maxley during his operation.

I have created a Facebook Event for the day of surgery so everyone can say a little prayer for Maxley during the operation.

More than anything I am asking for everyone’s love especially the day of surgery. Prayers for the surgical team, his medical team and for our family. We know God has taken care of Maxley in so many ways and we want to continue to pray for him. This is just a moment for you to stop and say a prayer for Maxley and if you are so inclined to wear a Team Maxley shirt. If you don’t have any Team Maxley gear yet and want to check it out, click here! You can place an order through May 31st! Proceeds will go to Ronald McDonald House!

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The last big announcement which many of you know already from social media is that we got a puppy!!

Her name is Mountie (named after Canadian Mounted Police). I wanted a canadian name/ word for her.

She is so sweet and honestly the perfect addition to our family. She is an English Bulldog, The kind of dog Scott and I always wanted. We got her a month ago and she has already grown so much. The breeder expects she will be about 55lbs so she will be a tank. She is lazy and sweet, perfect. She doesn’t need a leash for walks and she (mostly) licks Maxley vs bites.

She has her own Instagram if you want to follow all things Mountie Girl!

I will keep my blog updated with everything coming up!

Today sucked.

We had our appointment at Gillette for his SMOs (foot braces). He got fitted for them December 2019 and we received them January 2020. He wore them until he outgrew them in November so, almost a year. The doctor said to stop wearing them once he starts getting blisters meaning they were too small.

We had a follow up appt scheduled for today and I assumed he would be done with the clinic but I was very wrong.

His legs and feet are worse. His knees don’t lock at all so he always stands with bent knees because he has really high muscle tone and his legs are so tight. He turns his feet in but walks on the insides of his feet.

I don’t think I am explaining it well. I feel like I am making him sound like he walks like a crazy person.

I swear it isn’t that noticeable.

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Here is the day he got his SMO’s.

So, fast forward back to today. I was naïve and went waltzing in like it was graduation day and NOPE. He got fitted for AFOs today. They are very similar to the SMOs pictured above but they have 2 parts. An inner liner and an outer shell. The outer shell goes all the way up to his knees.

Oof.

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This was the very last thing I thought we would hear today. Just in time for summer, he will have hard plastic braces on. I know in the grand scheme of all of his health issues this is no big deal. I know that.

But, it is just another thing. I left feeling really upset. It is another thing to do everyday. Another thing for him to have to deal with. Another thing to keep track of. Another doctor appointment to go to and coordinate. Another thing to worry about.

This is nothing new. I have spent almost 3 years worrying about his health and I also know this is a moms job. But FOR ONCE, I want Maxley to get the easy way out. I want Maxley to WIN at something.

I feel like I sound stupid just writing this but I can’t articulate it. I felt defeated all day. Tomorrow is a new day and maybe tomorrow I will wonder why I was sup upset but for today I get to be sad for me and sad for Maxley.

His doctor is also talking about doing injections into his legs to relax the muscle and so we will likely schedule that when we have a follow up in 6 weeks. It takes 3 weeks to get the braces and then she wants to see us 3 weeks after that and to monitor him closely.

There is also the possibility of hard casting (like a broken bone) that he may need down the road and or another surgery. Of course.

Only time will tell.

He has a follow up echo in 6 weeks too to see how his heart is doing and to see if we need to schedule his open heart surgery for this year or if we can keep waiting. He will need it in the next couple of years so we are just taking it 6 months at a time.

It is all just too much. All the waiting and the constant wondering, “what is next” is hard. Living in 6 month limbo for his heart surgery is hard. He could need it as soon as May or maybe we get to wait a couple more years. But the not knowing and the “see you in 6 months and maybe we will decide then” feels like I am living my life in chunks of time. I have a stomach ache thinking about it. Most days I can block it from my mind but days like today it just sits there taunting me.

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I promise to post happy stuff too! I feel like Debbie Downer today.

Here is a cute pic of my 1/2 Canadian boy walking into the dr today.

There isn’t anything big to report other than I haven’t reported in waaaay too long.

Not much is new other than Maxley is getting so grown up. He isn’t getting “big” but he looks like a little man.

I can’t believe he is 2.5! I haven’t posted since he turned 2 even.

He is eating quite a bit orally but is still 100% tube fed meaning all of his daily nutrients come from the tube but he tries eating several times a day.

Some days he won’t eat anything and then there is last night where he ate; fish, bread, fries, apple, tomato, cheese, pepperoni and wanted more!

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Like most people, we had a very uneventful 2020. We have both stayed healthy and Maxley hasn’t had any unplanned hospital stays or ER visits since I posted last! He had one planned surgery in June but we didn’t even have to spend the night.

Last I posted he was just getting the hang of walking. Now he is RUNNING everywhere and jumping off of things across things and everywhere! He has no fear and falls often. He usually has a bruise somewhere from running into something or falling.

He is very VERY funny and always wants to be the center of attention (can’t imagine where he got that from… cough cough). When he does something and you laugh he will do it over and over again knowing you will smile or laugh at him. He is very lovey and always wants to be held, cuddled, kissed, hugged, etc. He needs a lot of attention and physical touch.

He has learning a TON of sign language. He is up to 52 words (I keep track on a list when he learns a new word)

Some of my favorites that he signs are:

Nurse, Cute, Aunt, Cousin, Dad, Play, Swing, Cookie Monster, Excuse Me, Socks, Good Boy, Again, Apple.

He is still pretty non-verbal but says “yeah” & “no” and learned “Dada” otherwise we sign everything and we have some charts he can point to for when he needs something.

He is up to 21.9 lbs so JUST about to tip to 22 lbs. He was 18 lbs 7 oz a year ago. Not as much progress as I would have liked to see but we are healthy and I will take that as a win.

He is in 18 month clothes. The only benefit of him not growing is that he can wear the same clothes for a very long time! He is getting taller so he has grown out of few pairs of jammies!

We have been trying to stay hunkered down like the rest of the world. We have done a couple weekend trips “away” but stayed local. It is always fun to get Maxley out of his environment (and mine).

We are anxiously awaiting for COVID to go away so we can make a trip to see our Canadian family and friends. I haven’t seen my in-laws (and they haven’t seen Maxley) since American Thanksgiving 2019. That makes me sick just writing that. And even then it was only my mother in law and her friend who came.

Maxley has yet to meet most of our Canadian family and friends and I am eager to take him on his first plane ride! It is ironic that I always thought he was “too sick” or “too little” to fly and now with COVID there is an actual reason we can’t. He is finally to a place where I would be comfortable being away from his doctors and the hospital that knows him and stupid COVID happened.

I feel bad for any child born in the last year or 2. They know nothing “normal.” Maxley spent almost the entire first year of his life in the hospital and he came home on oxygen so that summer was really hard to take him to the zoo or the mall or “out.” He was also just a few months post life support and I was scared to take him anywhere that had germs meaning leaving my house was pretty much against the rules. We were quarantining before it was trendy! 😉

So, finally last summer I was so excited to take him places. He was walking and he was finally at an age where he would want to see the animals at the zoo or appreciate being out and doing things but we haven’t been able to. His entire life has been spend within the 4 walls of a hospital or this house and he is almost 3.

He has barely been to target or a restaurant. I am just ready for some normal. I know everyone feels the same!

I guess I am just feeling sorry for myself in that nothing seems to go in our favor and some days… it sucks. We don’t get Scott and I didn’t get the normal newborn experience, I didn’t get to take my baby home from the hospital as a newborn, I didn’t even get to see my husband become a dad.

I miss Scott so much. It still feels like he passed yesterday. I still can’t say the D word, I always say he passed away.

I can talk about him more without crying, I guess that is progress. I tell Maxley about him almost every single day. Now, if I say, “where does Daddy live?” he points at the sky and I say, that is right, Daddy lives in heaven.

I tell him often how lucky we are that daddy gets to be with us every single second of the day and he is always watching us. We have the most special guardian angel there ever was. I truly believe that although, I would feel a whole lot luckier if he was here on earth with us.

There is so much more I can say but instead I am going to show you some pictures from recently!

Don’t forget to follow me on Instagram if you don’t already! I post a lot and add to my story almost daily!

If you don’t have Instagram, you can see my recent posts to the right on my main Honeyed Heart page!

Check back anytime! –>

Maxley took his first steps today!!

I think Maxley got to watch his cousins run around all weekend and it inspired him to take his first steps tonight. 

I think I am still in shock a little. I’m not sure if he will just take off walking now or if he will still be really timid, I am guessing the latter. He doesn’t have a lot of interest in being independent. He just wants to be held and wants to be around me constantly. 

The weekend was amazing! Here are a bunch of pictures from our long Memorial weekend. 

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It has been too long so I thought I would do an update. I also just got my laptop back, it has been broken for months which has made it really hard to post (I hate writing from my phone).

So much has changed in the world and yet, doesn’t feel like much of a change here.

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We are doing well. We are quarantined like the rest of the world and trying to stay healthy. I am working from home full time and do have nursing help – Thank God!

Maxley has been healthy for the last 6 weeks which is the longest he has gone since the fall. We added in a daily neb treatment steroid to up his immune system and that has worked amazing. He has been sick on and off pretty much all winter so this has been a long run of health.

He is up to 19lbs 15oz so JUST about to hit the big 2-0. This is almost 10 times his body weight at birth, crazy.

He is in 12 month clothes and size 2, 3 or 4 shoes. He can wear size 2 but has to wear size 4 with his braces so most of his shoes are a 4 since he wears his braces almost all day. He has a couple size 3 that he can wear without braces too.

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He has had 4 haircuts. His dad had thick hair and I have very thick hair so I knew this would be a trait. He has about 15 teeth (I have honestly lost count), just a few more left to go it seems.

He is walking (with help) like crazy. He is attached to his walker and is so fast on it I am confident he could walk on his own if he tried. He has zero interest. He drops to the ground the second you let go of his hand. I keep trying to trick him and mid walking let go and he instantly sits.

He knows a few words in sign language but is still very non-verbal. He is getting good at showing me what he wants and it has helped having me home all day to interpret what he wants.

He is grunting a little more and but not making any ba-ba or ma-ma sounds with his mouth at all. I am not worried at all, we will get there. I am so glad he is learning sign language because that has helped a lot.

He is fairly easy going in regard to what he is doing. You can take him away from something or give him something else and he doesn’t seem to care. He is easily distracted too. He isn’t a very good listener yet and is biting. scratching and pinching a lot. I know it is in large part to his sensory disorder but am having a really hard time dealing with it as he makes it almost impossible to hold him. He yanks on hair bites toes… ew.

His absolute favorite thing in the whole world right now is Elmo. If you say Elmo, he starts grunting and screaming. He loves to watch him on Youtube or on PBS. He will sign please and point to the remote control for you to turn Elmo/ Sesame Street on.

He has about 15 books and it is pretty much the only toy he wants is his Elmo books. He reads them each 100 times a day. He will pull all 50 other books off the shelf to find his Elmo books and then hold it up, rub his tummy (sign language for please) and scream. It is so cute.

We have been working on his feeding schedule as well. He is up to 150 ml/ hr (5 oz) for 4 bolus feeds during the day. He gets tube fed at 10a, 1p, 4p & 7p then he gets fed all night from 10p-8a. We continue to up the day feeds until he is getting 240 ml (8.1oz) in half an hour 4 times a day and then none at night. This is obviously similar to a normal child and that way he might be more hungry during the day too.

He has been eating orally a little hear and there. We try to feed him orally 4 times a day and it is hit or miss. He wants whatever I have and tries most things. He doesn’t like fruit or anything fruit flavored. He likes chocolate although he has only had it a few times. He loved avocado, yogurt, goldfish, eggs, cheese. He will only drink out of my cup which of course he is terrible at and he doesn’t know how to use a straw (if anyone knows ways to help me teach him, please email me!) so most of it ends up on him.

The biggest change of all actually happened this week. Tuesday morning I was getting dressed and my nurse called me into Maxley’s room, a piece from the J-tube side of his feeding tube broke off.

I want to avoid taking him into the hospital during this crazy time so we tried just using his G for night and meds and everything and it is going SO well. This is HUGE!!!!

You have no idea what this means. Hard to explain. Before his heart surgery, he just had a G and it was great, it worked great and I wasn’t paranoid about him pulling it out or it popping because I can replace it myself at home BUT the GJ that he has needs to be placed under a fluoroscope in a hospital so of the 12+ times it has popped out, popped, broken, etc since coming home last May, I end up in the ER with him for what ends up being a whole day.

So, the fact that he is tolerating just the G means I can replace this and put in just a G-tube. This is incredible peace of mind and a big reason why I was so scared to travel with him. If it broke or came out, I would have to take him somewhere to replace it or he can’t eat.

We take so many precautions because of how frustrating it is to take him to the ER all the time. He wears a band around his tummy at all times to cover it so he can’t pull, even in the bath. He almost always has a onesie under everything too and I am so careful when changing his dressing because he pulls on it every chance he gets.

Anyway, it is so amazing that we will soon be rid of it! Maybe one day we will get rid of the G-tube too!

I know I am missing stuff so email me or message me on Instagram or Facebook if there is something you want to know!

Here are some pictures from the last couple months.

I hope everyone stays healthy and well. Mentally and physically. I know times are hard but we are all in this together.

Thank you again for following my journey. I feel so loved to have so much support.

I have been struggling lately. It’s on and off and honestly more good days than bad but struggling the same.

It has been more of a jealousy lately. I have had this aching pit in my stomach seeing people get married or get pregnant. Seeing these moments of pure joy for them where they think their whole life is in front of them and my best days are behind me.

I just have this insane amount of jealous raging in me. I wanted that life. I wanted a happy moment with both my boys. I never got that and I just can’t get past it.

I wanted a life with Scott. I hate how much not having him holds me back from being the mom I wanted to be. Or at least that’s what I chalk it up to. I have so much anger and sadness and I know I take it out on Maxley at times.

Sometimes I just scream and cry when I’m at the end of my rope. My poor child who has to grow up without a dad and with a half ass mother.

I remember rocking Maxley a couple weeks ago and he just wouldn’t stop crying. I couldn’t get him to stop. I just started crying and couldn’t stop. I just want Scott back. I want a life where I am happy. I miss being happy. I miss having life to look forward to.

But, I know things could be worse, I know things could always be worse.

Maxley started not feeling well Thursday morning and Saturday we started steroids but they didn’t seem to be helping and Monday night I was home alone with him. I was rocking him because he was so fussy and as he was asleep his saturations kept dropping. Luckily I set his oxygen tank next to me so I didn’t have to get up with him fast asleep on me.

Every 20 minutes or so his levels would drop and I would raise the oxygen. I ended up getting up to 2.25 when the nurse got there at 9pm. I was getting scared so I called and while I waited his oxygen needs went up to 3 liters.

We ended up taking him to the emergency department and was lucky to have a nurse with me. He got up to 4 liters on the way in. We got there about 10pm and with a 2+ hour wait I was scared it would take forever but they brought us right back to a room. They did x-rays, blood tests and tested his boogers too.

Tests came back positive for Respiratory syncytial (sin-SISH-uhl) virus or RSV.

I was in shock because he gets the RSV vaccine called Synnagis. But, my new insurance fought his January dose so we didn’t get it… look what that got us.

The doctors wanted to admit us and we finally got checked into a room at 4am. It was a rough couple days with very little sleep and a lot of crying (him not me).

But we are home.

We got discharged today around 2.

This stay was hard for different reasons. He doesn’t want to be contained. He is a toddler now and he just wants to climb and crawl. He was contained to his crib and that was hard. I either had to hold him or he was in bed. He screamed when I went to the bathroom or went to get food. I was there alone which made leaving the room hard.

He just wanted to rip his oxygen off and so we had to put the No Nos on which are amazing. They make it so he can’t bend his arm. I honestly don’t know how I didn’t have them before. He used to not rip his O2 cannula off but now he does. He even ripped his IV out.

Thankfully we are home now and he is in a much better mood! I can NOT wait to sleep in my own bed.

Thank you for all the prayers, thoughts and kind words. I appreciate the support more than you can imagine.

I had perfect strangers offering to bring food to the hospital and people offering to bring me whatever I needed, your generosity doesn’t go unnoticed. Thank you.

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Quick update on my sweet TWENTY MONTH OLD. How did this happen?? I thought I would defy science and my baby would stay small forever. Not literally because he is still small. I just moved to 9 month clothes last weekend. Big step!

He is about 17.5 lbs and 29 inches. He is a very fast crawler and walks with assistance really easily.

When he isn’t sick he is such a happy kid.

If you follow my story you know that Maxley turning 20 months means that Scott has been gone 20 months. I don’t know how it’s possible. The longest we ever went was 5 months without seeing each other but we talked every single day. I still think of stuff I have to tell him, I still have his name saved as a favorite in my phone and go to call him often.

I still cry, I cry a lot. I miss him. I miss feeling loved. I miss having a best friend. I miss having someone to share my wins and my losses, someone to share my bad days with and not have to carry the load alone.

Someone to help me make the hard decisions in life. I miss that but I mostly miss him for those things. I don’t just want someone to fill that roll, I want him back. I was my Scott. I miss everything about him. I love him so much.

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Lastly, my friend Jenn wrote a really nice blog post about Maxley and I. Check it out —> https://www.cocoscaravan.com/2020/02/widowed-mother-almost-loses-her-baby/

Maxley started swimming lessons today!

He had never been in a pool (unless you count dipping his toes in twice) because he had a broviac IV port until the end of August.

I thought he would have liked it a little more but he is yet again coming down with a cold.

He seemed off all day and was not into it. He finished better than he started and so hopefully it goes better next time!

He is not gonna sleep tonight though because he is so stuffy. We already had to put oxygen on him and by that I mean 4 times already because he keeps ripping it off his face. We started his new treatments already tonight too.

I just hope he can sleep and so he can get better. Let’s hope this is a quick cold. I’m ready for it to be warm already. I can’t take too much more sickness.

𝕆𝕟𝕖 𝕪𝕖𝕒𝕣 𝕒𝕘𝕠 𝕥𝕠𝕕𝕒𝕪.
. . .
𝓗𝓪𝓹𝓹𝔂 𝓗𝓮𝓪𝓻𝓽𝓲𝓿𝓮𝓻𝓼𝓪𝓻𝔂
. . .
What a year it’s been. A whole year since I handed you over to a room full of nurses and doctors I didn’t know to fix your heart that was the size of a walnut. You were so tiny and I was so scared. I was so scared I would never see your eyes again or hear you laugh. But after a long 8 hours of surgery, the doctor told me your surgery was a complete success.
. . .
It wasn’t until days later you started dying. Your lungs were failing and there was nothing I could do, there was nothing anyone could do. I prayed and I cried and I waited for you to get better. It took a lot of meds, some time on life support and the right team of doctors and nurses but you did, you got better. It was a long 73 days I waited just to hold you and to see you without the tube down your throat but that was one of the best moments of my life. Getting to hold you that day, after many weeks of believing I would lose you. It was such a joy.
. . .
It was a hard 112 days we spent together in the hospital but we came out the other side, a little stronger, a little braver, and a whole lot closer.
. . .
I am so incredibly proud of you and how hard you have fought. You’re a miracle in so many ways and I’m so very proud to be your mama. Your dad and I love you so much. XOXO

I had to work from home today because somebody from the county came this morning from 9-11 and he had an appointment at 2 and then my nurse was done at 5. It was nice to spend the day with him although he is on day 3 of not napping at all so it’s been rough. Still happy but moments of fussy.

After my nurse left Maxley and I sat down and cut his cake and we shared a piece.

It was hard if I’m being honest. As I’m sitting at the table alone next to Maxley in the night chair I can’t help but think of Scott. Scott should be here and be celebrating this massive milestone that we accomplished. I miss him so much. Life isn’t as happy without him, I can’t smile as much, I just feel like half of me is missing and it’s been 19 months. I know it will never go away but these big moments shine the light on the fact that it’s literally just Maxley and I and I have to figure it out, alone.

I can’t believe it’s been a year. When Maxley was first born we counted in days in the hospital. We were there 99 days and then when we got home it was sort of a countdown to his surgery and then after that it was just getting through a day at a time and trying to survive through the next hour.

Since we got home at the end of May it’s been wearing meds and trying to get on a schedule. It’s trying to figure out who I am as a mom and how will I survive without any help. How will I ever do this alone?

Each of these beads tells the story of his bravery through open heart surgery, ECMO, a lung biopsy, several bronchoscopys, a heart catheterization, 73 blood and platelet transfusions, 112 nights in the hospital, xrays, blood draws, therapy, firsts after surgery and many more. @beadsofcourage made the hardest things feel a tiny bit easier because we got a bead for doing it.
. . .
I’m so proud of his beads and how far he has come. I love you Maxley!

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A few updates:

He is 17lbs 13oz. That means since the morning of surgery one year ago he has gain just about 7lbs. He has been teetering with 17 lbs since July and finally stayed there.

He is still being tube fed 20 hours a day and working on getting him so more breaks so he will want to eat more orally. He is eating here and there but not a ton yet.

He is starting to make more noises and trying to sign more which is encouraging to me. He is taking the stairs and crawling like crazy. He walks easily with his walker or holding your hand and is totally used to his leg braces he got 3 weeks ago.

Overall we are doing ok. Still a day at a time and I think it will be that way for a while. I’m dealing with a lot of nursing/ insurance stuff and so it’s really been a nightmare and all that’s on my mind lately. Hard to focus on anything else when so much of my future is on the line right now.

Lastly I want to give a shout out to a fellow heart mama and friend Carlie. Carlie’s sweet daughter Julia lost her battle with CHD this week and went to heaven. Juju was almost 2 and had received a donor heart last year but God had other plans for her.

I have been in shock all week and so saddened by the news. CHD sucks and it isn’t fair. Maxley came so close to losing his life so many times it feels so real to me. I called my mom bawling when I heard and can’t get their family off my mind.

If anyone feels compelled to hear her story or to donate you can find her instagram @jujusnewbeat and you can donate on Venmo @thrivingheartmom (Her friend Stephanie is collecting donations for the funeral). Please pray for their family.

I hope you all had a wonderful holiday! Maxley and I had a busy few days.

We spent the week with family and friends and it was really nice. Holidays are incredibly bittersweet as anyone who has lost someone knows.

I miss Scott on every turn. Every little thing makes me think of him and it’s guy wrenching. I find myself holding back tears most of the day and trying to enjoy the moments.

I got another nephew over the weekend and I am a proud aunt (again) to another nephew, Peter. My sister in law in Canada had a baby on Friday making sweet Lotus a big sister. I can’t wait to get up there to meet him. I’m currently working on sweet talking my mom to babysit.

Tonight is a big night for me, I know it seems silly and pretty unbelievable considering Maxley is 18 months old but tonight will be my first night alone with him, just him and I. No nurse, no grandma, nothing.

Most nights if I don’t have a nurse, my mom comes to stay. I’ve had a friend come stay too but I told my mom I need to get “this” over with. My first.

It seems silly and think what you want but it makes me feel so much better knowing my mom is in the next room. Even if I’m the one getting up with him, just knowing she is there if I need to tap out, is so helpful.

He was was easy to put down tonight so that’s a good thing and maybe a sign of a decent night sleep for both of us.

He is completely back to himself after pneumonia and off of oxygen again so that makes a big difference because getting his oxygen cannula on him is a 2 person job.

Thank you everyone who reached out and wished Maxley and I a Merry Christmas. I truly feel so loved!

My video/ article came out today!

In case you didn’t know I was contacted a few months ago by Parents.com and I did the interview in November.

https://www.parents.com/parenting/dynamics/mom-loses-husband-days-before-she-almost-lost-son/

It came out really well and I’m actually really happy with it.

Feel free to share on social media.

After an eventful week of doctors appointments and a stint in the emergency department on Monday for a new GJtube…

I thought the week would slow down but I guess I was wrong.

He has been getting sick through the week and today we went in for Maxley’s 18 month appointment and his doctor was concerned about him. She ordered some labs and a chest X-ray. They diagnosed him with double pneumonia (both lungs).

They sent him home with an antibiotic, steroids and nebulizer treatments. I was glad to be able to go home and not the hospital for now.

He hasn’t slept in days and he is in rough shape. He is needing a lot of oxygen and can’t stop coughing.

Let’s pray we stay out of the hospital for Christmas.

My washer AND dryer crapped out on me last week, rotten luck I know, but long story short – I had to buy new ones. Not a fun purchase but you know what made it a little easier? Knowing I was getting a little cash back by shopping online. How? Ebates!

Ask my family, nurses and coworkers, I talk about it all the time. It is free money and my number one shopping tip for the holidays!

You have likely seen commercials for it and I have been telling people about it since my sister introduced me to it years ago.

People seem to think it is a scam or false advertising but it is legit!!

Use my link and you will get a FREE $10 after your first purchase using them!

It is now called Rakuten but it is the same thing, new name.

All you do is use their website like a browser. Say you wanted to buy something at Old Navy or Macy’s. You go to their site and search the store.

It brings you right to their website and you shop like normal EXCEPT you are earning INSANE amounts of cash back!!!

No joke.

I have made hundreds of dollars buying stuff I would have normally bought. Seems like almost all retailers use it and it helps a ton! You get the cash back via check or paypal every 3 months… like magic!

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The best way to do it is to download the extension and then when you forget to go to their site first but go straight to Old Navy’s site for example. A little button pops up and reminds you to activate your cash back!!

I am not joking when I say there is zero catch. It is cash back just for shopping online!!

It is perfect for the holidays and will make shopping a little less stressful.

Use my link for a FREE $10!! + 10% cash back at a ton of retailers until Saturday.

Let me know if you have any questions. Honeyedheart.Kelsey@gmail.com

(it even works in Canada!)

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They also give you coupon codes you didn’t know existed so I have saved even more money on purchases.

Can you tell I love Ebates? What have you got to lose? Sign up now!

Filming yesterday went well I think!

It was an hour and a half interview. That was tough. It’s tough to relive the hardest moments and days of your life with cameras, lights and knowing people will see your whole life unravel.

It’s one thing to write about my life but to be raw and emotional on camera and people to see me is another.

My mom was there to support which helped a lot.

I’m really looking forward to seeing the rough cut! I believe it will come out in January on their website and social media. I will share it with you and ask you to share it too!

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Yesterday Maxley figures out how to shrug his shoulders. It’s probably the cutest thing in the entire world. I will have to get a video.

He also clapped today! He only did it once but it was exciting!! He does it if you hold onto his wrists but today was the first time he clapped on his own! It was exciting! So many firsts still to come. So fun!

We went and saw Santa today too! We go together with my sister and her kids so it’s a fun cousin picture.

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Also, happy world prematurity day.

Tomorrow is the Parents magazine video shoot!

They are coming to the house for most of the day and doing video footage and an interview. I hope it turns out ok. I can’t wait to share it with you guys! It was my own little secret for so long.

It’s strange because everyone keeps congratulating me for it. It’s like I applied or something. I know I should be excited and I guess I am but it’s hard to get overly excited knowing the only reason I’m in this situation is because Scott isn’t here.

Maxley alone is a complete miracle but he wouldn’t get half of the love he gets if I was coparenting.

Don’t get me wrong, I am so beyond thankful for all of my supporters and every single message of hope, love and thought but it makes me think I wouldn’t know any of these people or get any of this love if I had Scott. I would trade everything in my life for one more minute with Scott.

That made me feel bad for a long time. It made me feel bad because I knew deep down that I would give up Maxley for more time with Scott. You might think that I’m terrible and that you would never trade your kids and maybe you wouldn’t but if you haven’t been here you just don’t know.

I am so so so blessed to have Maxley in my life. I know he was a gift from God who knew Scott couldn’t stay on earth with us. But the reality is, I chose Scott. Out of all the people in this world Scott and I met and fell madly in love. MADLY. I am still so crazy about that man. And Maxley was created. When you choose someone to spend the rest of your life with you know that everything will be ok. You know that you have them and good or bad, they are yours. I know I will never love anyone the same as I loved Scott.

But I know, I could love any child God gave me.

I’m not sure if that makes any sense and maybe I’m being judged but it took a lot of hours of therapy for me to be ok with knowing I have to work on my connection with Maxley. It took almost losing him 272 days ago for me to feel that connection with him.

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I feel like I haven’t done an update on his stats in a while.

Maxley is 17 months old and 16lbs 12oz. He fluctuates in weight a lot. We try upping foods and he gags so we have to slow down. He was sick for 2 weeks and that puts a halt on progress too.

He is crawling everywhere and loves LOVES to walk holding onto your fingers. He kisses EVERYTHING and I mean everything. He gives loves of hugs and loves to be held. He is very sassy and let’s you know when he isn’t happy which is often. He is more and more content to crawl around and play with toys as long as you are within 3 feet and watching him because he wants constant recognition that what he is doing is good and or funny.

He laughs when you laugh and even when I am so mad at him, he gives me these eyes that melt my entire insides. I know my heart must literally swell up.

I do my best to sanitize carts and use a cart cover too so neither of us have to touch the cart. I’m careful about people touching him and try to stay away from strangers.

Wish me luck for the shoot tomorrow! I’ll update you all.

I got all of my Christmas cards stuffed and ready to be addressed this weekend and so I thought I would share my special promotion with you guys.

I have specialized codes so if you want one just message me but since I work for Shutterfly it is our Friends and Family discount that is better than anything else you will find online.

If you haven’t ordered your cards yet, email me Honeyedheart.Kelsey@gmail.com or contact me through instagram or Facebook and I will send you one! 🙂

They also have amazing gifts too!! If you need ideas or suggestions for gifts let me know! Everyone in my family gets Shutterfly gifts!

Today was a big day!

Maxley got his first haircut.

Everyone had been asking me for a long time when I’m gonna do it so I’m sure people will be happy!! It was SO long.

It’s honestly not very different but a little shorter than I would have wanted. I’m pretty sad about it, I’m sure that’s normal.

A big reason I wanted to get his haircut this week is I have a little secret I have been keeping for a few months.

I am going to be featured on Parents.com in a feature called Parenting Against All Odds. They are coming to my house for the day this Saturday to do the interview and it comes out in January.

It’s a big deal and I feel very honored to have been selected for this. I’ll post updates when I know more.

Maxley is feeling slightly better. He had a small fever yesterday so I had an appointment to take him in today but ended up cancelling because he felt better!

He hasn’t really been himself. He is overall happy but much more sensitive than normal and just wants to be held.

I ordered him a new backpack that hold his feeding pump that is smaller so he can wear it. I am working on having him wear it to get used to the extra weight. He can be way more mobile if he wears it vs me chasing him around with the bag and once he is walking, all bets are off!

He did so well tonight for it being his first time! Watch him crawling with the backpack on here!

i

My nurse called in sick for today so I stayed home from work. He was really happy this morning but needed a lot more oxygen overnight so I called the pulmonologist again and he said to bring him in to the emergency department and prepare to get admitted.

As soon as we got there they tested him for RSV, flu and croup. They did xrays and other tests and labs.

We were there about 5 hours but they said he has croup and an ear infection.

They have him a large dose of a med and we got a nebulizer and an antibiotic but were ultimately sent home! He took a really long nap and then went right to bed.

I’m hopeful he starts to feel better. He was pretty happy tonight and I even got some smiles out of him.

Maxley is a little worse today. There is a crackle in his lungs now so I called the on call pulmonologist to see if he needed to get taken in but he was comfortable prescribing some steroids for now.

If he doesn’t get better in the next couple of days I will have to take him in.

He needed a little bit of oxygen during his nap today so I hope that doesn’t increase.

Because his lungs were so sick and he has lung disease the risk of pneumonia is very real.

. . .

Scott got his green card 3 years ago today. We spent a lot of time and a lot of money to get him to be legal here. We had legal documents, interviews and meetings with our lawyer to get this all done. Because of that, today would have been the day he could have applied for American Citizenship. This was something Scott wanted so badly.

I am working on getting Maxley his dual citizenship because I know how important it would be to Scott. I know he would want Maxley to celebrate being half Canadian.

. . .

Today was another rough day or missing Scott.

The thing is, it’s so much more than just missing my best friend. It’s so much more than all the things he is missing out on.

It’s the fact that every single day of my life I relive his last day on earth. I remember sitting there for hours waiting to hear if he would survive. I imagine how scared he must have been, I can picture him lying on the table as I say goodbye. So much more that I can’t even talk about yet.

I think people think you start to heal after it all happens but I have to look back on that day every single day of my life and relive the worst moments you could ever imagine.

I replay the words from the doctor and it’s unbearable.

Scott, I love you more than you know.

Another first for us. Maxley is sick.

He has never been sick before. Last year when we were home from the hospital in September I refused to take him out of the house unless it was medical related. He had gone to target once and that was it. I was careful who came into our house, who held him and I constantly sanitized and bleached.

Maxley getting sick last year would have meant no heart surgery and that puts his life at risk. He was already showing signs of heart disease at 5 months old and so the surgery was necessary.

Since we came home this second time in May, it was summer! His pulmonologist gave us the ok to be out of the house from Memorial Day to Labor Day without many precautions. I still sanitize constantly but now we have nurses in and out of the house constantly, my niece and nephew are here a lot and I break the rules and take him out more often than I probably should (even after Labor Day), sorry Dr. Moore.

I have been sick around him 3 times without him getting it and have always been careful. I can tell he is building his immune system and that’s a good thing!

Maxley getting sick is scary. It’s a scary thing because it means a lot more to us than to a “normal” healthy child.

It means I keep my hospital bag close at hand, just as his oxygen is. We moved his oxygen out of the closet yesterday and checked out tank supply just in case.

We are constantly listening to his lungs to make sure they don’t sound rattly. Any sound in his lungs means there is something in there and it can lead to an infection.

His lungs were dying just a few months ago and it almost killed him. A small infection can mean another fight for his life.

He is strong and he is fighting this.

I guess it’s time to accept that it will be another long winter stuck inside the house. I know other medically fragile parents can relate to this.

I dread being stuck here alone all the time.

It’s going to be a long winter.