Honeyed Heart

Maxley was so happy today. He was just super happy. Smiled so much. He gave a huge grin to anyone and everyone who walked in. He has been kicking more and more and really playing and interacting.

Today he reached for a spun this toy that sang and played music. He loved it. He played with it for like 20 minutes. It was incredible to see him interacting like that. I know he will be way behind in development since he spent almost 8 weeks in a pretty steady coma but I don’t care. I will celebrate these milestones as if he is the first baby ever to do it!!

His procedure went off without a hitch. He got his GJ tube and it looks great. He is healing well and doesn’t see affected by it. He was already grabbing at his new tubing.

The left is his new one. You can see it has 2 ports. One is his G and one is the J. The right picture is his old G-tube. Bye Bye g-tube. On to bigger and better things!!

It took him a little while to recover from the procedure but then he was happy as a clam the rest of the day.

He got his NJ nose feeding tube out today because we got the J tube in! He also got his NIRS taken off today. It is the sticker he had on his forehead and his lower back to measure oxygen levels in his brain and other organs.

Also, I forgot to write yesterday about how he got his pacing wires taken out. They are the 2 large white patches near his nipples. Those were his pacemaker wires. They had thin stitches attached to his heart and if his rhythm was ever off, they would hook up the pacemaker. We finally got the ok to get them taken off yesterday. It isn’t like they got in the way or anything but it is just one less thing. He hasn’t used them since maybe week 2 or so?

The annoying part for Maxley is that they were long wires and so they were rolled up like a hose and then taped on so he had big indents where they were. Like when you wear a ponytail on your wrist overnight and so it just hurts. They were stitched to his heart and all they do to get them off is give it a good tug and they come off.

All we have left to “get off” is his broviac and picc line. The broviac is on his chest and the picc is in his left arm. Both are used for administering medicine and/ or pulling blood for labs. Those will most likely stay in until we get discharged.

Most of his million meds go through his J tube but some still go through the blood. We will be working hard to switch that over as that will be the only thing keeping us here pretty soon.

His 3 leads which measure respiratory rate and heart rate, those stay on until discharge. Those are the small white circles you can see on his shoulders.

So, I think that the breathing tube is the last thing. And….

That is coming out tomorrow!!!!

It was actually supposed to be today but the unit was so crazy that there was nobody available to do it. They need a nurse practitioner or an MD here to watch just in case they need to emergently put it back in. So, we didn’t get to do it today.

We got the go ahead at 7am this morning in rounds and then we waited until he came back from surgery and then waited and waited and waited.

The time never came.

It sucks but I get it. Other kids in the unit are more sick and needed their attention. There were 2 post-ops and those are critical. We were there once. We were the sickest baby in the unit for a long time. I would hate to think that the doctors couldn’t be with us in our time of need because they were trying to make a mom happy.

I just can’t wait to hear his voice and to hold him. I just want to scoop him up so bad. It is an intense pain that I just can’t wait to fulfill.

I do believe too that the doctors want it out badly too. The risk of infection ((again)) is real and they all just want to see his face. So much tape is hiding the sweetest little face.

He will still need oxygen and will get moved to some sort of nasal cannula but it will hopefully be less tape! Plus, we will be able to hold him pretty much whenever we want. There is a chance they will have to re-intubate him. If he doesn’t tolerate it, we will have to put it back in. There is always that chance but the only way to know is to try.

I will be gone all weekend because my best friend is getting married and the nurses have already called dibs on him so that they can just sit and rock with him while my mom and I are at the wedding. I am not worried he won’t be loved.

Not sure what the nurses will do once we bust out of here. They will find a new Maxley to love on.

Off to bed, tomorrow, I get my boy back!

10 months today and 10 weeks today.

10 months today since I lost my partner & 10 weeks today that we have lived in a hospital ((round 2)).

Where has time gone?

Maxley had a rough day. They weaned his meds again yesterday and he felt it today. He cried most of the day and woke up at any sound. Someone came in to get the garbage and woke up, your shoe squeeked, it woke up, etc. He has been having a better night since I got home from work so that is good. Maybe he wore himself out from crying so much.

We have surgery scheduled for tomorrow at 10:30a to get his G tube switched to a GJ feeding tube. Right now his g-tube goes right into his stomach. They will switch the plastic piece that sits outside his stomach to something called a GJ tube. That way he can be fed G (gastro) or J (jejunum).

He is strictly tube fed. He has been since day one. He can eat orally but rarely lacks interest. Since his heart surgery he has only fed via tube. Now, it is more critical to feed him into his J because there is less of a chance for him to reflux and aspirate. If he refluxes, it can go into his lungs and silently aspirate. That causes food to get into his lungs causing an infection or pneumonia. Unfortunately, with how sick his lungs are, this could land him back on life support easily.

For obvious reasons they want to do everything they can to make this the safest transition home possible.

This is an easy surgery. They have to dilate the hole that is there for his g-tube. He currently has a 12 french and he needs to go up in diameter to a 14 french. He will be sedated for the procedure.

It shouldn’t take long and he will be back in his room before we know it.

After this, we can start talking about when that DAMN tube will come out!!! Could be any day now!!

No update today. We spent the day playing and keeping him calm. He has overall been very happy and very smiley.

It is such a nice change!

The doctors are saying that we will need to switch out his g-tube to a GJ probably this week. We could wait to make sure he needs it but it would keep us here a lot longer and then he would have to be reintubated too. We will meet with surgery tomorrow and find out more. Stay tuned…

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I want to say thank you again to everyone who has reached out with kind words, words of encouragement, prayers and positive vibes. This road is too long, too dark and too scary to do without you all. I am so thankful for this digital platform to share with all of you. I never knew true kindness until I went through tragedy.

I have always thought that I was nice to everyone, that I treated people with respect and there aren’t many people I don’t like. But, EVERYONE is so nice to me. Everyone genuinely cares about me, about Maxley and about Scott.

I think there should be a rule that everyone should act like they have passed away for a day and listed to all the amazing things that people say about them. Or, the not so kind things too. Maybe it would change how you act, good or bad.

I have thought about this a lot since I had to write my husbands obituary and eulogy. I think about what people would say about me and I want to work to make those things be incredible. I am not sure if anything I am saying makes any sense.

I guess I just want to be a better person, a person like you guys. Who, in the face of something horrible, you have shined through. People I don’t even know, never met and maybe never will meet have written me cards, sent care packages and prayed for my family. I know people have their own life to deal with and they take the time out of their day to read about me and say a little prayer.

Thank you! I never thought I would say this again, but here it goes…

I feel blessed.

Maxley has been really fussy because of his withdrawals. It is hard to watch. He is happy at times and then inconsolable others. We can give him pumps of fentanyl but then he becomes reliant on that. His heart rate has been really high and he has a constant fever.

They are culturing out some gunk from his nose to see if he has more than one infection.

I am hoping the high fever is due to withdrawals and not another infection. He is still battling his pseudomonas (lung infection) so I hope it isn’t more than that.

That being said, the pulmonologist is very happy with his progress on the vent. She is surprised at how well he is doing even with the infection and SO fast after getting off ECMO. It is a new rounding doctor this week so we haven’t seen her in a few weeks.

They lowered the vent to 10 today which is the lowest it goes. He is on a peep of 6 and they want him at 5 to extubate so we will probably go down to 5 tomorrow.

I am still not clear on the plan for extubation. I was gone a good chunk of today at a friend’s bridal shower and running some errands so I will need to talk with the pulmonologist and new intensivist tomorrow to see their thoughts. I think at this point he has shown them he can pass the 4 hours no problem. I think they might leave it on cpap mode all the time but leave him intubated for a while. Their biggest “fear” is that they will take it out prematurely and have to put it back in.

It isn’t a huge deal to have to intubate him again but it can cause damage to the airway and is really not ideal. They want to be very sure before they do it.

The excitement of today was that Maxley got a new chair!!

It is called a Tumble Form. It is a soft form chair that goes on the bed. It allows him to sit up but remain stable without the nurse having to sit and hold him up. When they do, they can really only sit him there for a few minutes because their arm hurts and they have to hold the vent too. It doesn’t work that well. He can use it about 30 minutes at a time and it takes 3 of us to get him in it. He sits on the bed so that they don’t have to move his IV poles, vent, etc.

We just got it a few hours ago but so far he loves it! I can’t wait to watch him grow and develop even more. I never thought I would be so excited about a red foam cushion!

He spent the entire first half of the day very crabby. He was very twitchy and agitated from 7am until about 2pm. He wouldn’t sleep and wouldn’t calm down. We tried everything and I think we finally came to the conclusion that he is withdrawing. The timing of his sedation meds is usually about every 2 hours and sometimes he gets more than 1 at a time but from 4-8am, he doesn’t have any. I think that it gets him way too behind and it kind of screws up his whole morning. After 2 he does well for the rest of the day.

We moved to 4 hour c-pap trials today and his blood gases have been great. He is on a 4 hour cpap test, off for 2 and back on for 4. The cycle goes on. The nurse practitioner thinks we will do this for a week or so and then extubate.

He still has a fever and is pretty sick from his infection so we will wait until he is better from that for sure. We have a new rounding intensivist starting tomorrow so we will see what she says.

We are just hoping for a quiet weekend!

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Several people have asked about my Keep bracelet again. There are 3 more days to order from my Keep Collective Party!

Let me know if you have questions!

They switched him to 3 hour c-pap trials today and of course he did perfectly. We may switch to 4 in the next day or so and see how he does for a few days. If he does ok, he could be extubated in the next week!!!!

Not many other changes but today was one of the best moments of my life.

I got to hold Maxley.

It was incredible.

I haven’t held him for 61 days. Even then, it was for maybe 20 minutes. This wasn’t much longer than that. He was really agitated and seems to be withdrawing from the medications quite a bit. He did fall asleep in my arms which made me feel really good. He has been agitated here and there due to the withdrawal and being intubated.

It took 4 of us and probably 30 minutes just to get him into my lap. He has so many tubes and cords. He is hard to move and maneuver. The nurse practitioner is the one who suggested it which was nice!! I came home from work and they said, “you are holding him tonight!” I said, “ok!” You wouldn’t hear any complaints from me!

I am not sure how I will ever let my mom hold him now! I miss him so much, once I can pick him up myself, I will never let go.

He was so heavy! My arm hurt after. I can’t believe how much he has grown in 66 days.

66 days in and it feels like we just got here and that we have been here for years all at the same time. We have 33 days to bust out before we surpass our last stay. That is not a record I am looking to beat.

Quick update since there wasn’t much happening today.

Maxley started 2 hour c-pap trials today. He did perfect!! We are hoping this will speed up the extubation. We will do 2 hours for a few days, then move to 3 hours for a few and then 4. After 4 they will typically extubate. That is what the nurse said but the doctors might want to do 5 hour trials. The 5 hour trials are a little pointless because he will do 5 hours off the vent and an hour on and then 5 off again. It is basically extubation so they will usually just do that.

The culture of his mucus from his lungs came back positive for pseudomonas so we started him on an antibiotic.

They were also concerned about more broken bones so they did an in depth bone scan and didn’t find anything. Really good news.

Overall, I am more than thrilled with how well he is doing. Days are still hard not holding him and he cries a lot. He is a fussy baby and really loves to be held so this is hard for him to just lay here all day. We can play and interact a little but it is hard.

He is fighting sleep as usual. He was awake from midnight until 7am last night. Typical Maxley.

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I am not sure if you guys remember me posting about Maxley’s taggie blanket that was given to him.

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I absolutely love it and it is one of my favorite things we have received here. The nurses love them too as they are so thoughtful and are helpful in propping up tubes and things as well as being cuddly.

Well, the owner of Baby Jack and Company contacted me and wants to help out the hospital!

If you use code MAXLEY they will match every lovey purchased and donate one here to the hospital to be given to a little baby post heart operation.

INCREDIBLE!!!

You can purchase for yourself, a gift for a friend or donate one here and the company will donate a second!!

Shop Here!

Mail to:
Children’s Hospital Minneapolis
C/O: Paul Paulisich/ CVICU
2525 Chicago Ave
Minneapolis, MN 55404

There isn’t much to write about when I am at work all day and come home and he naps and isn’t awake much.

A few updates from when I was at work.

He is still rocking his c-pap trial. They are still an hour every 6 hours but the pulmonologist wants to make them longer since he is doing so well. The intensivist said that we could extend the length or wean the peep and so the pulmonologist chose to wean the peep. He is doing really well.

He started a new “trick” today where he bares down when he is mad and his oxygen saturations (sats) drop down to 50%, 70%, etc. We aren’t sure why he is doing that. It seems to be maybe he is trying to go to the bathroom but they don’t know why his sats drop. This seems like when he was having his pulmonary hypertensive crisis except that his heart rate didn’t drop ever. He turned kinda dusky like you could tell he wasn’t getting oxygen but heart rate didn’t budge.

Another weird Maxley-ism.

The intensivist thinks that he is just mad about the tube and being intubated.

One cool thing today is that he got his art line taken out t today! It is his arterial line he has had in his right arm for 36 days. It is right in the inner elbow so it kind of bugs him and his skin is so dry and irritated. I bet it felt so good to get that off. He still has his PICC line in his left arm and the broviac arm in his chest.

These are used for meds blood draws, etc.

The art line was used to measure his blood pressure constantly. Because his blood pressures have been good, we were able to take it out and rely on the normal blood pressure cuff every 4 hours or as needed.

We weaned another 10% on his methadone. We are just about at a point drug wise that we could extubate. He needs to be pretty awake to extubate and we are there which is nice. His lungs aren’t ready but it is nice to know that when he is ready, there won’t be anything holding us back.

The cultures came back positive for another lung infection. They started him on a Q12 (every 12 hours) tobi nebs nebulizer treatment for now.

He is up to 6.7 kg which is 14.7 lbs. He was 11 lbs the day of surgery so he has gained almost 4 lbs!!!

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I just shared this on Facebook.

I would love if you could all go to Facebook and share my post.

I would LOVE to find that dollar bill!!!!

Another really nice day.

We have been here 9 weeks today. We actually had the same day nurse that we did the day of surgery and the same night nurse. We haven’t had her since that first night so she couldn’t believe everything he had been through in these 9 weeks.

He was fussy again this morning but then was super happy the rest of the day. He has been a lot more wakeful during the day and sleeping ok at night. We are so hopeful we can sleep train him. Who knows once he is off all of these drugs but we can hope.

He had a busy day with OT, PT and music therapy. They all commented on how amazing he looked and how he was up and playing. He really looked like my Maxley today. His glimmering eyes and quick smile are back!!

He played for a long time today. He was reaching for things, interacting and playing. It was so fun to see him grabbing for toys and you could see him thinking. He was taking everything in. They sat the bed up pretty far and he looked into the hallway and the nurses would walk by and wave and say hi to him. He is just a doll.

They are getting a lot of secretions when they suction his tube. He is coughing a lot and they are getting a lot of yellow mucus out. Now they think he may have an infection. We sent a culture today so we will see what comes of that in the next day or 2.

We started c-pap trials today at noon and will do them every 6 hours. They are one hour long and right before the hour is up they pull a blood gas to see how he is handling the trial. His gasses have been perfect. Better than before the trials in fact. They will continue to be 1 hour every 6 hours until further notice. They said today that it will be 2- 3 weeks of c-pap trials to get him ready to be extubated.

They are fairly certain that he will not need a trach. They think he is doing so well that he should be able to get extubated without a tracheostomy. It may take a while but we will be patient.

Another pretty ok day around here.

Maxley has been withdrawing from his meds a little bit. I don’t think it is enough that we have to add meds back on board but enough that he is pretty uncomfortable on and off. He is fussy and then happy and then fussy and then happy. To be fair, this is him at home so we call that his baseline. But, he shows other signs too that they watch for. Every 4 hours they score him on a scale. Anything above a 4 they say he is withdrawing. He has been pretty low but showing signs ofr sure. We have been testing him by giving him a bump of fentanyl because if he was withdrawing he would react positively to the bump. Sometimes he does, sometimes he doesn’t.

The worst part about all of this is that he is SO gaggy. Is that a word?

He gags a lot and his heart rate dips. He does that vagle thing and it is SO hard to watch. His entire body wretches and he is red in the face and can’t stop. The nurse compared it to when you get in a coughing fit and just can’t stop. That is kind of like him when he gags. It is really scary. His heart rate dips so low and it takes him a while to recover. We just stare at the screen and wait and hope that he pops back up on his own and they don’t have to start chest compressions. Ugh. It is so awful.

They weaned his vent rate all the way down to 10 today which is as low as they go. It is pretty much off as far as the rate goes. They weaned the peep today too and his sats are holding strong and his blood gasses are good too.

Warrior.

The best part of the day was that I got to cuddle next to him. They were able to scoot him over in his bed and I got to lay next to him. The nurse said if he had a good day like yesterday she would let me hold him. He didn’t have the best morning so I didn’t ask but then he had a really good afternoon so I asked the night nurse. She was thinking about it but then he vagled a couple times really really bad and then I just said I didn’t want to. I get so scared watching him choke and gag. I wouldn’t be able to handle if he did that while I was holding him and worse, if I caused it.

I do think that me holding him is good for him too. I think it is important but the benefit has to out way the risk and right now it doesn’t. It will be a while. I will patiently wait, kind of.

Either way, it was nice to lay next to him and cuddle. I loved doing that at home in my bed. Felt normal.

So many of his meds are through his g-tube that he has a TON of meds in his med drawer. So crazy to see how much we are pumping in him. Not including the ones that are still IV or the ones that just weren’t in his drawer yet for the night.

I hope tomorrow is another good day. We are having more and more of those.

Today was one of the best days he has had here. There were no big changes with his care or anything but he was so happy. He was just so smiley all day. He just kept lighting up the room and made everyone who saw him happy.

He just seemed the most like himself today. I sat on the bed with him for a long time and played with some of his toys. He interacted and grabbed the toys. He smiled at me for what seems like forever. He followed me around the room with his eyes and seemed to really be looking around a lot and taking in his new room.

He was staring at the vent and watching his breaths for a while. He even watched a movie. The TV in the room has some movies and it has a mount so that it pulls from the wall and he can see it so he laid in bed and watched that. ((no shame in my parenting style)).

The very best part of my day was when we asked the nurse about him sitting up more and so she sat him up. I got 2 videos because my mom wasn’t in the room for the first one. We both cried. It was so wonderful to see him sitting. He is HUGE!!! He looks twice as big as before surgery. He isn’t, but he is big!

Also, he has a flat head. A very flat head. He had the most round perfect little head that the doctors and nurses used to comment on. He spent the first 99 days of his life being held the majority of the time and most of the time even when we were home. But, after all that hard work of keeping his head round, he has a flat head.

He may need a helmet now. Looks like we may be adding more doctors appointments to our future. ((eye roll)). He really can not catch a break.

Today, I just feel like I am finally getting my little man back. It is so wonderful to see. I can finally picture taking him home!!!

We will have good days and bad but today was a good one, a very good one.

Mom and I woke up this morning and the nurse said that Maxley had a good night! She also said that today was moving day! We moved to the room directly next door. We could actually see into this one from our old room through windows between the two.

We wanted to move for a few reasons:
– change of scenery. We have been here almost 9 weeks, it was time.
– our room needed a good cleaning. They clean everyday but it needed to be dusted and really scrubbed.
– our fridge had a huge block of ice in the back that was starting to smell.
– the only room that was open had an entire wall of windows and was a little bigger than the old room.

Moving our stuff took an hour or so but moving him was a huge ordeal. I thought they would move him yesterday when he left for the cath but it didn’t work out. They have to take him off the vent and manually “bag” him for the move. Then they have to lift him off and put him onto the other bed. It took about 6 people in total.

I felt a little bad because it was so much work but if they didn’t agree with moving us to clean our room and fix the fridge, they wouldn’t have done it.

We weaned the peep on the vent by 1 today from 10 to 9. The peep is how much pressure they are forcing in his lungs. Ideally 0 is what he should be at but he doesn’t need to be at 0 to get extubated. He will most likely go from the vent to c-pap or a nose canula and both of those offer a peep. He is still at 16 for the rate which means the vent is making him take at least 16 breaths per minute. He has been breathing over it for at least a week now I think. So he is taking between 20 – 30 breaths per minute but fully on his own. The 16 only comes into play if he is really sleeping hard or forgets to take a breath. the vent will force one in.

Once he gets down to a rate of 10, they will start c-pap trials which again is testing the vent “off” to see how he does. The don’t extubate but they lower the vent and simulate him being off. They may start before he gets to 10, we will see.

C-pap trials are going to be like mini workouts for him. They will do it for an hour and give him a break. Then maybe the next day do it for 1 hour, twice a day. Then after a few days, do it once but for 2 hours, and so on. Working his lungs out would be like me going back to the gym, hard as hell. 🙂 It will take time to build back up again. It has been almost 9 weeks since he has had to use his lungs and this will be a tough go.

This morning he was really happy! I was getting a bunch of HUGE smiles from him. His whole face would light up! I would pretend to eat his leg or his foot and he would light up. Then, this afternoon, he didn’t stop crying for hours. He was so sad, huge tears and the first time I had really seen him sob since being in the hospital this round.

His whole body was shaking with his cries and it was heart wrenching. I just want to pick him up. I can tell that is what he wants. He cried every time he saw me. He just wants his mom. It is not fair, I just want to hold him. I will ask again soon but with his osteopenia (bone loss) it is unlikely they will let me because he is so fragile right now. I miss him and I know he misses me.

I sit on the other side of the room and he probably thinks I leave him. I almost never leave the room but he doesn’t know that. He can’t see me from where he is so he probably thinks I leave all the time. God I miss him.

He has been getting really red (I can’t remember if I wrote about that already) but it is really on and off and hasn’t happened in a couple days. But now today it happened twice. We put an ice pack behind his head and that seems to help and he seems to really like it. He is a warm kid, just like his daddy. “Sweats in a snow storm,” Scott used to say.

The skin doctor came in and said that his rash is looking better so that is good!

Looking forward to my first night in the new room!

We woke up early this morning to several men in our room. Most of the nurses are women around here so that was strange. We got up and saw that our cardiologist and an anesthesiologist were in our room looking at Maxley. They were actually going to be ready an hour early to do his cath. That was nice! They came in about 7:45 but it was a couple hours before they were actually ready for him. He was scheduled for 10:30 and they actually brought him back about 9:45.

For the procedure, they take him back to the cath lab and they put a catheter in his groin artery up to his heart. They turn up the oxygen and down and then turn the nitric back on and turn it off. They are measuring the pressures in the ventricles of his heart. There was another med they were maybe going to need to start called flolan and they were testing to see if he needed it. The down side of it is that it is strictly an IV med so we would have had to go home on an IV which is not ideal. BUT he didn’t need it.

It took a couple hours but he did wonderful! The cardiologist came and talked to us after and said he was impressed with his pressures and how well he did. He was happy he didn’t need flolan! He has been really sleepy this afternoon but otherwise seems to have recovered well.

It is a pretty big procedure and kids do not always handle it well. There is always a risk they will come out back on ECMO.

(side note: a friend asked me if you pronounce it or spell out the letters and you actually say it eck-mow. I love those questions because it is stuff I don’t think about)

This is the second time he has had one here and he did much better this time. We will have to come back every few months even after we get discharged just to measure pressures.

This was the last big piece of the puzzle of how he was doing. With the genetics results back yesterday and knowing today he doesn’t need the other drug, there are no more unknowns. There is still the question of timing which I feel I can more accurately answer but other than that, he just needs to get extubated and we can go.

Sounds easy, right? Once he is extubated, it will be a long road but that is his last task. He is hardly on any IV meds and we can work on weaning his sedation at home if we have to!

So, timing? The question of the century. If you would have asked me a week ago, I would have said months and months. Now? Maybe weeks to month(s). A week ago I didn’t think we would be out by his birthday, now I am hopeful. He has 76 days to bust out before he turns one. No pressure, honestly, whatever he needs but it would be so nice!!

We have already been here 59 days so that would be a total of 135 days. That would beat our last stay by over a month. We are not in the business of trying to out-do our last stay, ok Maxley?

The last step of extubation could happen this weekend (it won’t) or in 3 months. He is doing so well and he is down to 16 on the vent. We need to be to 10 before we can do c-pap trials again so we are close! But, that could take time. Or we could start c-pap trials and he could fail over and over again for months. There is no way to know but I am hopeful that it could be a matter of a month or 2? Not getting my hopes up.

His rash is looking a lot better. They prescribed him a steroid ointment and that seems to be helping. He got his steroid pulse dose for the month today too.

We had an INCREDIBLE day. Genetics results came in. They were able to call me at work and put me on speaker. All of his tests came back negative. SUCH a relief. There was still a chance that he could have something genetic that he couldn’t recover from or that could be terminal. Something could also come back that could say that this could be something that could continue to happen throughout his life. But, nothing came back. He is a carrier for a certain genetic condition (I will need to read up more on that) but it has nothing to do with his lungs.

This is by far the best news that we could have gotten. It felt like a huge weight lifted off my shoulders when I heard. I was so confident that he was doing so well but since they told us they wanted to test, it has been in the back of my mind that something could come back telling us that we would never leave the walls of this room.

It has been a scary 4 weeks waiting for these results.

Maxley has made some huge strides over the last 2 days. He has weaned quite a bit on the vent. They are already talking about c-pap trials (trials with the vent turned mostly all the way down) in the next couple weeks. This is a really good sign he may not need a trach! Once he passes a series of these trials they can extubate!! This means we could be home in the next few months vs. for sure here for the foreseen future.

He has weaned quite a bit on sedation as well. He is more awake but a little fussy but then calms easily. Sometimes he looks at us and sometimes it is like he doesn’t know we are here. We still talk to him and sing to him so he can hear us.

He has had a few more gagging episodes where his heart rate dips and they get really freaked out. It happened last night and several times today. It is so scary. They are close to starting chest compressions each time. He is so much more sensitive since his nerves are waking up. He already had a bad gag reflex and I guess being intubated for a long time makes that worse. They say it is normal but most of his meds are enteral (through his NJ tube) so when those go in, the tube that goes down his throught moves as the liquid passes through and it causes him to gag. So so scary. We are talking with the doctors about moving meds back to his gtube or even switching his G to a GJ sooner rather than later. More to come on that.

The good news is that so many of his meds are enteral which is great. He really can’t go home on IV meds and the process of switching his IV meds to a dose every 4 hours is a long process. Apparently, some of that happened without us even noticing. We were too focused on other stuff I guess. It is one less thing we have to do before we go home. There are still a few to be converted and the harder ones too.

They had to go up on his heparin today because his levels were a little low.

Endocrin is working on measuring the phosphorus because his levels were really high. They are worried that he is overproducing phosphorus which affects your bones. We will meet with nephrology (kidney doctors) to learn more about all of this.

Today he was a popular guy with PT, OT, Music and Massage all coming to see him.

We are also monitoring his hands/ fingers because they are starting to grow strangely. They look like clubbed knuckles right below the nail bed. We have had skin, genetics, pulmonology and our intensivists all looking at them and they aren’t sure why yet. Genetics said they don’t think it is related to his genetic condition. We are going to try and x-ray tomorrow to see if it is skin growth or bones or what.

He is officially off of nitric since 9 or so Monday night. He hasn’t even missed it which is great. His sats have been 100% and he is doing so well!

He has developed a rash under both of his arms. They are calling it contact dermatitis which just means it is from something he has come into contact with. The skin doctors think that it is just from having such dry skin and then his arms rub on the blanket all day. Poor thing seriously can’t catch a break!

I received the nicest gift basket today full of candies and goodies. The card said to the staff taking care of Maxley!! That was SO incredibly thoughtful!!! I set it outside of his room at the nurses station and the nurse went NUTS!!! That was such a thoughtful thing. I don’t know who it was from though. So, thank you!!

Today would have been our 3 year wedding anniversary. Three years. We had such a plan for our lives and our marriage.

Scott and I had talked a lot about how we wanted to put our marriage first. We wanted to be the type of parents that put each other above our children. We chose each other before kids and we would be there after they moved out. We talked about date nights and how we would need to discuss things other than Maxley or future children.

So, today, instead of writing about Maxley. I will post about our marriage.

https://www.youtube.com/watch?v=rq59akhHYwc

Photography by my good friends Cory Amundson && Gretchen Richardson.

Scott was the most incredible person. Nothing I say can do him justice. He was the most giving, loyal, loving and caring human. He loved everyone and wanted to be friends with everyone. He loves his family and would have been the most incredible father.

Most days I still can’t believe this is my life. I have a Polaroid of Scott on my dash and I look at it when I am driving and I am reminded that he is gone forever. And, I cry. I cry hard. I cry a lot in my car because it is pretty much the only time I am alone (thank god). I have one voicemail from him and it is long and he is talking about plowing the driveway last winter and to give him a call back and he just kind of goes on about random stuff but at the end of it, as if he knew it would be one of the only recordings I have of him, he says, “I love you, Kelsey.” It is so perfect. I listed to that over and over again while I drive. And I scream and cry and blubber a lot. (probably not safe).

It is kind of strange because I like to look at him when I cry. I feel more connected to him and I miss him so severely that I just feel like I connect to him more if I can stare at him while I cry. I kind of want one of those pillows of his face, so I can lay on him and sob.

We had a perfect marriage. Not THE perfect marriage. Not like we didn’t fight or anything but when we did we made up quickly. We spoke the same language of arguing and so fights were put out quickly. We had almost all of the same interests and what one of us wasn’t interested in, the other would learn to be. We had separate lives in addition to our marriage. We saw friends and both loved our work. There was always plenty to talk about and knew that we would never run out of words (we were both in sales after all).

Scott was made for me. I am not sure that I believe in soul mates. Like there was only one person out there for each person but I believe that Scott and I were meant to be together. We were meant to create our first child whom Scott is caring for in the after life and little Maxley whom I am blessed to love for at least another day.

I am so beyond thankful for the 8 years we got together. Even another 8 wouldn’t have been enough but I will settle for a lifetime of incredible memories of Scott. My husband, Maxley’s father, and my best friend.

I love you, Scott.

______

Thank you to everyone who reached out to me and said Happy Anniversary. I am not ignoring your messages but today was a hard day. This is by no means how I imagined spending my wedding anniversary.

At the very least I thought I would be able to hold by baby tight but I can’t do that either. I didn’t even go down to visit his grave. Maybe next year, I will just forget this day all together.

Maxley had a good, calm day. We have made another notch down on the vent and he has been doing well.

He is also OFF the nitric. He started the day at 2 and they did an echo. The echo looked the same so our cardiologist gave the ok to keep going down. They went down to 1 at noon and then just went down to 0 here at 9pm.

They will leave the nitric oxide tanks in the room for 24 hours and if he is still doing well then they will take the tanks out. One more piece of machine out of the room will be so nice!!!

We are taking baby steps but they start to add up!! This is the one piece of equipment we can’t go home with. We are NOWHERE near going home but it is just nice to know that there is nothing that will keep us here as long as this nitric wean goes well.

We are still trying to figure out why he is so red and gets so warm. He has a low grade fever often and gets completely flushed several times a day. We aren’t sure if it is detoxing, withdrawals, a reaction or what. It is at random times and not with the same meds so it is hard to say.

We weaned another 10% on his methadone. He has still been so sleepy. We aren’t sure if he is digesting his meds better now that he is eating more and pooping or what the difference is but he has been so sleepy. Hardly waking up at all. He can barely even open his eyes which is a huge change. He is on a lot less meds than he was even a week ago so I am not sure why he is just so out of it. It is hard to see. At least it is easy to wean the meds.

He got a massage and PT came in to work with him. He usually handles those really well.

I am back to work tomorrow after working from here on and off for the last 8 weeks. I am so incredibly grateful to work for such an incredible company and work family that has allowed me time that I needed to be with Maxley. This has been an impossible year and the end is nowhere in sight. I am just so appreciative and thankful to have the ability to focus on him.

With my wedding anniversary tomorrow, I am trying to surround myself with all the Scott love I can. I am obsessed with my 𝒦𝑒𝑒𝓅 bracelets that I can wear everyday and think of Scott.

“𝒶 𝓉𝒽𝑜𝓊𝓈𝒶𝓃𝒹 𝓂𝑜𝓇𝑒” is from our wedding song.

Shop here!

I was gone yesterday to celebrate my best friend’s bachelorette party! If you want to see all the fun we had, you can check it our here!

As for Maxley…

They went down on the vent a couple times this weekend. They would go down a little and then do his blood gas and they would still be perfect so they would go down again. So great to see him tolerating these changes.

They are also weaning the nitric down. He has a cath on Thursday and they really want to get him down to 1 or 0 before the procedure. He was on 20 just a few days ago and they went down to 15, then 10, then 5. After 5 is actually where the start to see kids notice the wean. Strangely enough kids don’t notice the higher changes, they notice more the closer to 0 he gets.

He is currently on 3 and at 11:30 pm they will change it down to 2. They will stay at 2 and do an echo in the morning to make sure the pressures in his heart are handling the change okay.

He has been really sleepy. We haven’t weaned sedation at all but making him work to breath even a tiny bit more is exhausting to him. He can hardly keep his eyes open. He opened them enough to see me when I got home tonight and he gave me the biggest smile yet!!! It was with his whole face and made me cry. I miss his personality. I spent some of tonight watching videos of my sparkly eyed little man just to remind myself what I have and how lucky I am. ((Never thought I would say that again.))