Honeyed Heart

It has been a wild few days. It all started on Tuesday when he woke up from his nap. He seemed a little off and more cuddly than normal. I had to leave for an appointment so my mom was babysitting. I told her he might be getting sick and so she checked his oxygen level when I was out and it was a little low. We put his cannula on when I got home knowing we would likely need it while he was sleeping. We had to put him at 2 Liters to maintain above 93% through the night and all day Wednesday. He ended up sleeping in my bed Tuesday night and was up coughing so I didn’t sleep at all.

Then, he was at 2 Liters all day Wednesday as I mentioned and when I went to tuck him in for bed he went from needing 2 Liters to 5 Liters within 30 minutes and I still couldn’t get his saturations up. I ended up calling 911 around 9:30pm and my mom was already on her way over. He got scared and was really crying but I was trying to be calm as to not upset him more.

Within 8 minutes we had about 15 EMTs and first responders in our house checking on him. His oxygen was actually ok at that point so I was less concerned. But, we had to put him on a stretcher to get into the ambulance and they hooked him up to their oxygen and we couldn’t get his sats above 80% on 15 Liters. The whole way to Children’s we were lights and sirens and I was scared. The EMTs were great at answering all of my questions and reassuring me we did the right thing.

I just know, that at any moment, the worst could happen.

We got to the hospital and were in the ED for about 2 hours before they pretty quickly moved us up to 4th floor CV so they could help us more than what the ED is capable of.

Once we got up to Room 12 (about 1am) we got him on BiPap which seemed to help. I was able to sleep a couple hours and my mom just rocked him all night and he was very agitated and uncomfortable and coughed non-stop. He seemed to be doing better for a few hours but around 9:30am his sats started to drop. We tried to do a full face mask to see if that would help but it made him mad and then, his sats were in the 70’s and sometimes dipped into the 60’s and ended up kicking mom and I out and emergently intubating him a little after noon. I was a wreck.

Mom and I went back to the same little waiting room we have received so much trauma in. We waited for the all clear. The charge nurse, Jenna, stood in the door and did a play by play telling me he was ok about every 20 seconds which helped a lot. I am so scared of losing him.

The intubation actually went well and the Dr. came and told us when he was done. They right away put in a central line in his femoral vein (right leg) to easily “switch” him over to ECMO if the time came. They pretty quickly started talking to us about him going on ECMO. It seemed inevitable but they were doing everything we could to try and hold off.

We got to go and see him again around 2pm. He was satting in the 80s which was better but we needed him to keep doing better to get out of the ECMO shadow. Then, by 5:30pm he was at 95% and climbing. His blood gasses were climbing ever so slowly too. By, 7pm he was at 98% and all of his blood gasses were within acceptable range, mom and I cried. At this point, he is on the highest vent settings possible. The only option we had was for him to improve, otherwise they would have to put him on ECMO.

They kept him paralyzed until 9:15am on Friday. By paralyzing him, they keep control of the vent and he can’t “fight” it or resist it. After we shut that off, he is now periodically waking up. He is very tolerant of drugs so it is hard to keep him sedated. They turn him every 2 hours for comfort and do vibes to his chest every 4 hours to break up the gunk in his chest. Both of these two things wake him and make him very mad. He also periodically wakes up crying which is heartbreaking. I hope he isn’t scared. Mom and I make sure to be there right away and assure him he is safe and what is going on and where he is.

They are keeping him very still and calm as much as possible. We can tell he is getting stronger by how his numbers (Blood pressure, Oxygen Sats, Heart Rate) are when he does get mad. Yesterday he was very weak and we could barely move him, today he is staying much more stable during vibes and moving.

It is now Saturday night and for the first time, I am able to breathe a bit and get this written. Even though he is mostly sleeping, we are always on alert to make sure he isn’t moving or sad.

So the million dollar question is…. WHY.

When we first got to ED, they ran several tests and did an Xray. Within a few hours he tested positive for Rhinovirus, which for you and I, is a common cold. The team began to treat him for this by pumping steroids and fluids. Also due to his Xrays and knowing he had some type of pneumonia, they started him on a broad anti-biotic. Late on Thursday, someone ordered a throat swab for a strep test and it came back at 6PM as positive. We were surprised. The team was split as to the true cause of which caused what, but regardless, they started another anti-biotic for strep, Vancomycin. We then met with Infectious Disease (ID) and they did further testing and this afternoon (Sat) came to tell us that his ET (cultured from his lungs through the breathing tube) also tested positive for strep and cultured in the Strep Oralis family. Strep can take many forms and it hit Maxley like a ton of bricks. The ID Doctor is sure that the Strep caused all of this and that the Rhinovirus/ Enterovirus was not the core cause. One of the ICU doctors told us Strep cases have doubled this summer compared to normal.

It is relief to finally know what it is. They will continue to let the culture grow out and possibly be able to identify a specific strain that may react faster to a different anti-biotic.

It looks like we are on the right path to healing. We are still very cautious as even little things can trigger something else, but we are very optimistic now that he is healing now and we are past the worst of it. He is peeing well. Responding to his meds and everything. It will be a long road as his lungs are very sick and it could take a long time to get him healthy enough to breathe on his own let alone, eat and move all of his meds to his gtube and get off these sedation narcotics.

All your prayers are working. Please keep them coming.

No real update but my blog has been down for a while so glad it’s up and running.

Maxley and I have been sick but we are making it through!

It has been a whirlwind of a month even though clinically not much has changed.

He is doing amazing. He is still off of oxygen during the day and tolerating that well. We are down to 2 Liters of high flow oxygen at night and will continue to wean that down every 2 weeks until we can trial him off at night. Nervous about that step but I have every confidence in his pulmonologist to make that decision. PLUS, getting him off of oxygen will allow us to travel!! I have been eager to take him back to the beach since it is truly his happy place.

He is still 100% feeding tube dependent but is eating orally a little bit. I offer 3 meals a day and 2 snacks but doesn’t eat much since he is getting fed through his gtube 21 hours a day. He is BACK IN SCHOOL!!! So I shut the feeding tube off so he doesn’t need to wear that backpack to school and can just focus on having fun since it is only 2.5 hours.

School is going amazing and he is loving his teachers and his classmates. They have already noticed an improvement in certain skills which makes my mom heart so happy! He was re-intubated about 4 months ago, after yet another night I thought I might lose him. It is unreal really.

Maxley and I have some new evening help (Abby & Emily) and are loving having them on Team Maxley!! Emily works at his school so he loves seeing her at drop off and pickup and Abby has a dog named Phoebe, so of course she is automatically a favorite!

Ashley has been out for a couple weeks due to some personal stuff so I have been doing the TRUE single mom thing. Getting him up, doing meds and diaper and get him ready for school then doing school drop off and 2 hours later doing pickup then lunch and we attempt a nap and then just try and survive until bedtime where we do it all over again. Though, sleep is feeling non existent for me these days. His machines (food pump, high flow humidifier, pulse oximeter) take turns beeping all night LOOOOONG. When the machines aren’t beeping, he is waking up several times. I don’t know why since he is normally a really good sleeper but maybe night terrors? I don’t know. I am up 3-6 times every night which feels like a lot. Then, I have to get up with him and mom all day, alone. Maybe it has always been this bad but I have had Ashley in the morning so I could sleep in or nap if I am up all night. Ugh.

I am exhausted, truly mentally exhausted but also very proud of myself. I did NOT think I could do this. I thought I would be crying everyday and praying for Ashley to come back (which, I am, don’t get me wrong) but I am doing well and really proud of that! My mom is in Florida for work so I am really alone but surviving.

Luckily (not luckily) I haven’t gone back to work yet. I have been on a medical leave since September. What started as needing time off to care for Maxley while we were in the hospital has morphed into me REALLY needing some mental health help for my PTSD and trauma that I have endured these last 5.5 years.

After I lost Scott, I instantly became a mom. I had no time to grieve and I know for a fact, I haven’t really. That night was very traumatic and I still have so many unanswered questions. Then, at only 7 months old I almost lost Maxley. After a few years of relative “normalcy” having everything happen this time around brought up some really ugly skeletons that I had buried deep down. I am in therapy and starting to see some improvements but I am completely hanging on the a thread as it is. I just don’t feel like I can add work back to my plate yet. I do love my job and I know when I am ready, it will be a really great structure for me.

I honestly sort of forget how much trauma I have been through until it rears its ugly head at the most inconvenient times. Or, like last night I was talking to Emily, our new evening gal, about what happened this hospital stay and it morphed into telling her the similarities between what happened to Maxley in August and how I lost Scott. She just stared at me like, WHAT? I don’t even have words. It feels like someone else’s life most of the time or a BAD Netflix show that I would shut off because it is too unrealistic and pathetic.

But, here I am. Alone with my best friend, Maxley. Getting through the days. As they say, the days are long and the years are short. MAN that is true these days.

He has started saying he will be 6 soon and I can’t believe it! He is registered for Kindergarten in the fall and he will be at the same school as my nephew so I am super excited about that. It was something Scott and I had talked about when my sister and I were both pregnant with boys at the same time. The boys are only 13 weeks apart. We wanted them at the same school and for Wyatt to be there to lookout for Maxley.

So, that is what is new from the Fergusons. We are healthy and blessed with this weird Minnesota winter that feels more like spring most days. We are looking forward to booking some trips soon and to less doctors appointments. Mostly, looking forward to Ashley coming back soon! 🙂

Today was a huge day. Today, after over 5 months of consistent need, he is able to be OFF OXYGEN while awake.

This is an incredible step and one I wasn’t sure would come. Still not sure he is ready but it’s going well.

He will get to go back to school in the next couple weeks without oxygen!! He is still on 4L of high flow at night/ nap (which is what we came home from the hospital on) but will start to wean this every 2 weeks as long as it is going well.

Also, tomorrow is 78 days since coming home, this is significant because we were in the hospital for 78 days this time. Crazy that we have been home as long as were were in.

The 78 days were some of the worst moments of my life and just such trauma I will never recover from. I am still not back to work. I’m trying to work on myself and move past the trauma.

I’m not sleeping well and have a lot of ongoing issues that I will live with for the rest of my life.

It is a hard thing to explain and to even admit.

Before Scott passed, I had a perfect life. I was 29, a newlywed, pregnant, dream job, new house, incredible friends and family. I had it all. I knew what I wanted in life and where I was headed. I love Scott more than anything and was excited to grow our family and our life together.

Now, fast forward 5.5 years and I don’t even recognize myself. I’m sad more than I like to admit, I’m angry all the time, I have a short fuse and zero patience. I know becoming a parent changes everything. I know that. But my life didn’t do a 180°, it did a 3,240° turn and then crashed into a ditch and then caught fire.

I struggle with daily tasks and I’m not who I want to be. I’m working on myself and I know can do this. I can do ANYTHING with Maxley by my side.

But, I have to move past the hours I spent thinking Maxley was dead and wondering how I could end it all because I wasn’t going to go home without him.

I have watched my life, our life flash before my eyes more times that I can count.

I’m hoping to go back to work soon but I’m working on figuring out when I’ll be ready and have a long way to go.

I should finish my ramblings by mentioning how grateful I am to be home and for our health and our chance at experiencing more of life. I love this tiny human and am in awe of him every day. He overcomes obstacles like they are nothing and he doesn’t even know it.

We have been home for 2 months. Not much has changed and it seems like everything is changed.

He is still on high flow of 4 Liters at night but down to 1 Liter of low flor during the day. That’s a huge change that has made EVERYTHING easier.

He has PT, OT or speech 4 days a week plus lots of other appointments to keep up with all his specialists.

He is walking and running everywhere. 2 months ago he wasn’t walking on his own yet.

He is still maybe 90% tube dependent and is eating very little by mouth. He is able to eat fat again which is very nice as far as what we are able to offer him. We are still doing fat free tube feeds but he can eat fat orally. He is still only able to drink thickened liquids but we are giving him little sips of water here and there and he is doing really great with that and no signs of aspiration.

He has been able to go down on a few of his medications but is still gaining a lot of weight so we had to go back on some diuretics until we can do more testing to see if the weight gain is fluid or fat.

He is still on most of his meds and will be for a very long time.

We had a wonderful Christmas and New Years and feel beyond blessed to have been able to stay home for 2 whole months.

Well, we have been home 11 days. It has been the longest 11 days. Feels like we just got home and also like we have been home for months. I know that doesn’t make any sense but its been a LOT.

I am so grateful to be home and I would do twice this amount of work just to stay home but it’s a lot.

We don’t have any other help except Ashley right now and another gal, Ellie, who comes a few hours a week. But it takes 2 of us to care for him and so I still can’t go back to work. Ashley is working 7-3 and then my mom comes after work around 4-5 usually. He still can’t move very well on his own and is doing a lot of furniture surfing to get around.

I feel like I could fall asleep sitting here and it is only 9pm. He is in bed and he has been sleeping well which is a blessing. My mom helps me put him down and then she goes home to sleep. I have to stay up until 11pm to do his last round of meds and then I fill his feeding bag and put a new ice pack on to keep his food cold overnight.

We had a follow up with Cardiology today and his x-ray looked even better than when we left so we were able to decrease some of his diuretics which is great. No other changes but glad to have them lay eyes on him and confirm he is doing so well.

We will go back to cardiology in 3 weeks and we see hematology and pulmonology that same week.

We are going to speech once a week and Occupational Therapy (OT) once a week. We got approved today during our PT evaluation to do twice a week physical therapy which is now his weakest point. That used to be his strongest and that is devastating. We had to start over in so many ways and it is so frustrating. I am trying hard not to dwell but its sad to watch him struggle to do the things that used to come so easy to him.

Grateful to be home for Thanksgiving this week and getting to see my whole American family (except Casie who moved to Arizona in October). I am having my whole family over to my house both Thursday and Friday. Looking forward to family and food!

Have a safe and wonderful American Thanksgiving!!!

I completely spaced writing yesterday with all the excitement but I am thrilled to tell you all that…

WE ARE HOME!!!!!

We got home about 1:30 yesterday afternoon and it has been a whirlwind ever since! They told us yesterday morning at rounds that they were sending us home!! His x-ray was stable and they were ready.

It will take a long time for us to figure out our groove. He has so much equipment it is kind of crazy.

We are overwhelmed by all of the medical equipment and medical supplies. Ashley and I spent all day yesterday (after we got home) and all day today rearranging to make room for all of his medical supplies.

We are moving supplies we don’t currently need to the garage, stocking new stuff in his changing stations and making sure I have everything we need for the month from our supplier.

He is on 16 medications and he gets them 1, 2 or 3 times for a total of 34 doses of meds throughout the day including 2 injections.

He is on a continuous feeding pump. He has to be on his pulse oximeter 24 hours a day. He is on high flow oxygen but that alone includes the IV pole with the humidifier on it, an oxygen concentrator and an air compressor. It takes 2 of us just to carry the equipment up and down the stairs. But in order to do that we have to hook him up to our travel concentrator because he can’t go without oxygen while we do that. So, we have to unhook his oxygen, unhook his pulse ox, unhook his feeding tube and hook him up to the portable concentrator and then carry everything down the stairs and then come back and get him and then rehook him up to everything while we untangle the cords. Ugh.

Then, once we get him hooked back up, he has a 4ft radius that he can be because his cords are only so long. It is hard to entertain him and encourage him to walk and be active when there just isn’t much range.

I am sure we will get into a groove but it is overwhelming right now. I am GRATEFUL though. We are also tracking calories as we always have but also fat intake. He is on a “no fat” diet but technically he needs to be eating 9 grams of fat per day so we have to be careful with what we feed him but also make sure he eats SOME fat. And thickening apple juice for him all day lol

Woof. Beyond grateful to be home and mostly whole again. We are still missing and will always miss Scott. In the sweet moments of me rocking Maxley to sleep tonight while Mountie snored at my feet I am overcome with joy and sadness. Pure joy and elation for the pure fact that I got to take Maxley home. That he survived the most horrific thing and that he came out the other side intact. That that moment was what I had prayed for, for 78 days I just dreamed about taking him home and rocking him in his room.

But, in those moments, I think about Scott. I started crying and Maxley looked up at me and his green eyes looked just like Scott’s and I cried even more.

I just miss him so much. I know I will be ok because I have Maxley. Who knows, maybe that was God

showing me that. I often think that I was so overcome with grief after losing Scott that I couldn’t see this incredible gift I was given in front of my face. This beautiful child that should have made me feel fulfilled and so God has to keep showing me what my life would be like without him to show me that he is perfect in every way and that I need to be grateful for what I have and not just focus on what I lost. But man that is a BIG hole in my heart that Scott left.

There were so many families at the hospital and husbands holding their babies and it made me so sad. It always does. That is such a big piece of my life that is missing. I never got to see him be a dad. Anyone who knew him in life knew how BADLY he wanted to be a dad. It just isn’t fair.

But, today I will chose to be grateful for the sweetest boy that could have ever called me mom. We are home, we are safe and man do we feel loved.

We have been in a decent routine of PT, OT, speech, eating, naps, walks etc.

We have a good schedule going but I am more than ready to go home.

His x-ray was a little worse today so they went up on his oxygen to 4 Liters. He has been on 3 for a few days. It is a little disheartening but they had said that we could go home on 6 Liters so I know that isn’t keeping us here. Right now it is just his xray/ fluid balance. They want to make sure he is in a really good spot before sending us home.

He is talking a lot more and doing more full sentences. He is walking some short distances unassisted if he has his braces on.

He can eat hardly anything. There is such a limited diet with his fat free, gluten free diet and no thin liquids. So, he can’t have grapes even because they are too juicy. There are SO many things he can’t have.

If anyone has any fat free & Gluten Free suggestions I am ALL EARS!!!!!

His ins and outs are lot harder to track and adjust once we get home. We are just taking it day by day right now.

We have ordered all of the medical equipment and supplies we will need at home so we are ready when we get the green light. It is going to be a lot of work but hoping between me, Ashley and my mom, I am hoping we can handle it.

I have made up his med schedule and got it approved by his docs here. There is SO much to do in just thinking about going home.

He has been sleeping pretty good at night but did wake me up at 6am this morning so I am exhausted tonight. I guess I better get used to it. I am going to be up a lot with him when we get home!

I haven’t posted in a few days! Not much has been changing so I have been trying to post every other day but last night around 9pm we had to move rooms and by the time we got him down, I was EXHAUSTED and just went to bed.

We got moved upstairs 🙁

It is a good thing because it means that we are healthy enough to not need to be down on the ICU floor but the rooms up in the PICU are so much smaller and we don’t know anyone up here. The 5th floor is the pediatric ICU and the CV (cardiovascular) unit has about 7 rooms up here as overflow. I just love it downstairs. We know everyone and when you go out of your room on a walk or to get water, you see people you know and everyone says hi and it is so nice. Up here I don’t know anyone.

Today was our last dose of clonidine so he is officially off of his narcotics!! He has been on them for 74 days. That is a long time to be on drugs. We have been slowly weaning since getting off of ECMO and we really close but then he had to get reintubated so we started all over.

He is also down to 4 Liters of oxygen which is a big step that he hasn’t noticed at all. We are taking lots of wagon walks and he has PT and OT twice a day (except on weekends, just once each). He doesn’t want to walk, just wants to ride in the wagon. He is sillier and crabbier, depending on the moment.

We have been going to both gyms and the sibling play area some too!

He is eating a lot but having a lot of trouble keeping anything down. He is vomiting a ton (just not used to food going into his stomach since his Jejunum is what has been getting fed since August) or it is coming out the hole in his stomach. We got approved to have thickened liquids like honey consistency. So, we take clear liquids like water or apple juice and add a thickening powder to it and let it sit for 10 minutes. It truly looks like honey and then he can drink it with a straw or just through the cup.

We are starting to talk about going home which is amazing to hear. BUT, we are in need of help at home.

If anyone knows of anyone looking for some part time work and loves kids, please have them email me!
HoneyedHeart.Kelsey@gmail.com

We are located in Prior Lake and looking for consistent long term help a few evenings a week!

Yesterday we celebrated a milestone of sorts. 300 days in hospital. We have spent a cumulative 300 days here, in this hospital in Maxley’s lifetime. That is 15% of his life. That is equivalent to 2 months a year since he was born. Almost a whole year we have spent here.

It is unbelievable to me.

I would gladly live here the rest of my life if it meant that I get to still have Maxley. BUT I also hate it here. We have lost 2 more kids this week, just that I know of. It is so depressing and humbling. I am thankful that we are seemingly on the other side of the horrible stuff (for now). But it is a constant reminder that there is no cure for a heart defect. He will never not have a heart defect. We will forever (God willing) be in and out of this place.

Life is not promised and it is so precious. I am living proof that tomorrow is not promised.

Onto updates…

The one big update from today is that we had a swallow study! He sits in a chair and eats and drinks and they take hundreds of x-rays of his profile, so it basically looks like a movie of him eating and drinking. Everything has barium in it so it shows up on the film and they can see if he aspirates on the food and liquid. Obviously aspiration is a huge concern for us because we don’t know what caused our massive setback last month. There is a chance he could have aspirated and so we are doing the swallow study to get cleared for food and water.

He hasn’t been able to have even a sponge of water or ANYTHING ever since getting re-intubated. I feel SO bad for him. He just wants a sip of water and we just had to say no. But, now that he is back on high flow, they would typically clear you to eat and drink like they did for him last month. But because we just don’t know why… we wanted to get this done.

So, he did get cleared to eat again and have applesauce consistency but nothing liquid. Like, he can’t even have grapes because they are too juicy. He can’t have water, or apple juice or anything. But, at least he can eat!!

He is getting all of his calories via his j-tube so eating is just a bonus although we will calorie count in case we can go down on j-tube feeds. The down side is, we are still treating him as if he had a chyle leak so he is on a fat free diet. He is also gluten free as a side note. But EVERYTHING has some fat in it!

So for dinner, he had a turkey sand which with no sauce on gluten free bread and fat free shredded cheese on it with a side of plain rice. I mean he was just happy to be eating but that won’t last long.

He also got to eat yogurt and apple sauce too.

We are not even taking baby steps with his oxygen, more like ant steps. We went from 30% FiO2 to 25%. lol Otherwise, they haven’t touched anything. Everyone is too hesitant to make big moves. So, he is on 5 Liters of O2.

He has 1 intermittent IV med which we need to move enteral before we can talk about going home. Hoping that happens early next week and then we can give that a week or 2 to make sure his fluid balance is at a good place and then get the frick HOME before Thanksgiving!!!!

Happy Halloween!!

We had a fun Halloween here (as fun as you can have in a hospital)! We walked/ rode in our wagon a lot today and even got to leave the unit for the first time.

He dressed up like an old man!! He is using a walker right now so it is just too fitting.

The other exciting thing for today is that we moved (back) to IMC!!! This is one step closer to going home!!!

He is on 6 Liters of high flow oxygen and we need to wean down to 2 L to be able to go home.

We are also still on 1 intermittent IV med that we will need to move to enteral to be able to go home. It will still be a few weeks but I can see a light at the end of the tunnel!

Still loving our mail and cards and everything people are sending. Thank you so much for making our dark days a little brighter. I can’t believe it will be November in a few hours and we are still here. It was still summer when we got here and now there is snow on the ground. This is the 3rd month we have welcomed and we are still here.

So grateful to be as healthy as we are. Walking the unit puts SO much into perspective and there are so many kids that are so so so very sick and we are so incredibly lucky to have made it through the other side of that. I am praying that the families up there get here someday soon. It is such a hard life and I ache for them.

Praying for the other heart families who’s babies are sleeping in the hospital again tonight and are fighting to wake up tomorrow and fight another day.

Today was eventful!

He slept until 6:50 which is a record I think! We rocked and played for a bit and then around 8:30 they came for his echo. That took about 30 minutes and then we got our braces on and went for a walk around the unit in our wagon.

Then, at 9:30 we went down to radiology to do a diaphragm study to see if his diaphragm is still paralyzed. Guess what? It isn’t!!! This is amazing news and means we can avoid surgery for sure.

Then, after that we had OT then after that we had PT and went for the longest walk yet! He walked 300 ft away and turned around and came back to our room. He wasn’t happy about it but he did it.

After that he took a nap and then got PT & OT again and they took him up to the gym. We had NO idea he had a gym here and of all of the time we have spent here, we had no idea this was an option. This was a tough sell. He was initially very excited but then did not want to do the work. It is really hard to learn to walk again and to be so exhausted by all of this work. I feel so bad for him.

After that he got a long bath in the tub and then we played the rest of the day.

He is on high flow and that is going really well.

Otherwise, we are spending our days trying to entertain him. Nothing lasts longer than 3 minutes. It is exhausting but the mail is the absolute highlight of our day!!

He will be so confused when we go home and he isn’t getting mail and cards and presents everyday from his loving Team Maxley! Ha!

Moral of the storay… I really really wanna go home. I am over it. That is all.

Maxley woke up at 4am again. I don’t know why this is the new 7am but he is WIDE awake at 4. We tried his Tonie Box this morning which helped some but then he gets bored.

I ran home today to get a few things and grabbed our Hatch which turns red when he is should be sleeping and turns green when it is “ok to wake.” We will see if that helps.

My mom came up from Ronald McDonald around 7 and saw into one of the rooms that they were giving CPR to one of the little babies. She went to get a coffee and told me who it was and I just started praying and crying. I don’t think the parents/ family were here and I just imagine getting that call and the trauma that we went through. We found out later in the day that she passed away. I am just sick about it and hate it here.

There is so much trauma and loss and it just isn’t fair. I went home for an hour today and almost cried when I left. I miss my dog. I miss my house. I miss normal life. I am SO sick of it here.

I am so grateful we are even in a place where I can start thinking about going home because many of these kids are not. Many of these kids have been here much longer than we have and are still very sick.

I hate this for them. I hate this life for these kids who don’t know anything outside of these walls. Who don’t get to go apple picking or back to school shopping. They don’t get to trick or treat or wake up in their own bed. Ugh. Just sucks.

On a happier note, we got to get onto HIGH FLOW today!!! WOOP WOOP.

This is huge. We will keep him on CPAP at night for a little more support and to keep his lungs inflated but during the day he is so VERY active that they don’t think that he needs so much support. This is huge. Easier for us to move him around. We also gave his last dose of IV antibiotics so we are IV pole free too! Big things!!!

I also got a HUGE laughing giggle tonight. I was blowing bubbles and they kept popping in my face!

I forgot to write about this yesterday but Maxley’s school (one of the teachers from his school… shout out Jenna) reached out to me and said they had done a bake sale and raffle to raise money for Maxley and I. I am in shock… still!! I can’t believe it. They have done so much for us. They held a prayer circle, have sent us notes and kind messages and now this. I am so grateful for our school community!! Maxley can’t wait to come back to school.

If you are the praying type, please pray for that sweet babies family. Pray she is healed in heaven and that her family can find peace somehow.

I got so many questions when I didn’t post last night!! I am SORRY! 🙂

I slept down at Ronald McDonald and I had a horrible headache and just went to bed and forgot all about it until I was laying in bed and thought… oh well.

There haven’t been many changes as of late. We are just doing our best at trying to keep him busy and Ashley has been a god-send (always is). I am lucky to be able to pay her while we are here thanks to incredible donations from you guys so she is here more than full time which has been incredible.

Today we got off of milrinone which was his last continuous IV medication. He has an IV antibiotic that runs for an hour 4 times a day but that will be done tomorrow and we will be OFF of our IVs!!! We got to this stage before, and need to be here to move on to IMC so this feels good to be back here.

We are keeping his food pump on the IV pole so we might keep it in the room to make it easier to take him on walks or we might get out our handy dandy food pump backpack and do that so he has more flexibility to move within the room.

We are sorting out the final details of his Halloween Costume and are hoping to get to walk in the halls and “trick or treat” on Tuesday.

We are still getting all of the therapies and are LOVING our mailbox. It is absolutely his favorite part of the day and asks 100 times if there is more mail! Thank you to everyone who has sent cards, letters, etc.

I wish I could send a thank you note to everyone but that isn’t feasible so please accept my heartfelt thank you for making our life a little better.

Big-ish news… we moved!!!

We got moved all the way to room 24!! There are only 25 rooms in the unit and then they have a bunch of rooms upstairs for the step down cardiac unit. That will be our next step and means we are that much closer to going home.

We got off 1 of his continuous IVs today- bumex, one of his diuretics. We have 1 continuous IV left!! We didn’t make any steps on the vent today but we did make a baby step yesterday so there is that.

We are also off 1 of 2 of our narcotics which is huge!! We made the final wean today down to 0 and we are pumped!!!

2 Months today he has been on it. Phew!

He also took a little walk into the hall. They are usually not able to do that unless you are on high flow (that is how we could go for walks in the halls before). BUT the doctor made an exception and let us go for a walk with PT this morning for about 5 minutes where HE got to walk with his walker. It was so good to see.

We did lots of painting and coloring and swinging today. He also got a tubby today too which he has been begging for. It is just SO much work but… Ashley came back today and she enjoys giving baths so we let her do that for us. Ashley has been off since Friday so MAN have we missed her.

My mom actually went home for the day and Ashley was giving Maxley a legit bath when the charge nurse came in and said we were moving and we had a significant time crunch. We had to pack everything up onto carts and move rooms in a hurry. We have WAY too much stuff to move anything in a hurry.

The weird part about moving today is we were in our last room the exact same number of days. So we were in Room 7 31 days and then we got moved to room 17 and we were there 31 days too. How crazy is that? I am PRAYING we are home in less than 31 days. Who knows though.

I got some good giggles too!

I am getting very very stir crazy and just really really want to go home. We still have a long way to go with his vent support but I am OVER it. At least today. Grateful to still be here fighting but just wishing we could be home.

2 Months. We have been here two whole months.

I still can’t believe that. My life has been put on hold and today, I was miserable. I don’t know if I am feeling the weight of the time we have spent here or if I am just tired from the weekend or mentally exhausted but I was very crabby today. My poor mom.

It was one of those days that everything goes “wrong” and I kept screwing up. Stubbing my toe, dropping things, tripping over everything, you know what I mean. One of those days where the NEXT thing will mean tears. Most women will understand. Hormones? I don’t know but today was that day for me.

Tomorrow will be better. My mom went home tonight to do laundry and has some stuff she has to do at home all day tomorrow. Ashley is sick too so she is home taking care of herself.

We got some AMAZING letters and packages today too… wow!! I am in awe of the thoughtfulness of people and it is the highlight of Maxley’s day!!! He asked me at 5am this morning to get the mail. Ha.

I have to remind him that the mailman doesn’t come that early. We ration out the mail throughout the day so that he gets more joy. It has been such a joy.

Otherwise we are making little baby steps. Went down on some meds and his breathing has been really good. All the doctors say he looks good which is great.

He is just SOOOO busy. He wants to get up and walk and then sit on the mat and then do play-doh and then rocky and then he wants the mat and then he wants toys but the toys last 37 seconds and then he wants to color but then starts throwing the crayons. UGH.

This all happened before 6am!!! I was already out of ideas 1 hour into our very early morning. I just want to sit and drink coffee but he is READY to go!

Praying I have more patience and creativity tomorrow to outlast this child. May my patience be stronger than my kid.

I had the most amazing weekend at my friend’s wedding. It was right here in Minneapolis so that was nice but I stayed in a hotel Friday & Saturday night which was LOVELY!!

The wedding was beautiful and they both looked absolutely incredible.

It was my first time officiating a wedding and it was SO much fun!! I loved being a part of the wedding and felt so special and honored to be asked to marry two people I love so much. Maxley was asked to be the ring bearer but was obviously not able to come. I got really sad a few times really wishing he could have been there. It was likely our one opportunity to be in a wedding together and that was taken from me.

I feel robbed of so many things and it’s really upsetting. I know in the big picture he is ok and I should just be grateful but it is hard when we looked forward to this for a year and a half and he was SO excited to be a ring bearer for the 3rd time!

UGHGHHHGHGHGHGHHHHHHHHHHHHH

Maxley and my mom had a good weekend and he has been good! They moved to CPAP – one step below the BiPAP vent settings he has been on. We are moving in the right direction again, thank god. BUT I am still so scared that one little mis step and we are back to square one again.

We have been here for 60 days. SIXTY. That is so crazy. We thought we might be here for 10-14 days and here we are. I can’t even really think about the possibility of going home because it seems so far away. I guess I will be pleasantly surprised when we are in a place closer to start talking about it.

So blessed to have a mom who was able to stay here with him and take amazing care of him while I was out being more than a medical mom. Felt so good to just go and have fun and be me. I am more than a widow, more than a mom, more than a hospital dweller.

Thank you everyone who has been sending drawings and thoughtful cards and things. I am feeling showered with love and support and it is an incredible thing.

Not much to post today. He had a good day and not much changed.

I wanted to post a quick update though because I won’t be posting on my blog for the weekend because I am going to be away from the hospital ALL weekend. I am in a wedding on Saturday!

Head over to my Instagram to see what I’m up to this weekend and wish me luck as I officiate my first wedding!! Eeek!

Last night sucked. He slept 1 hour. ONE HOUR. Ugh.

Then, at 5:00am he pulled his NAVA catheter out of his nose.

I tried rocking with him. No.

I tried wheeling my pull out over to lay with him. No.

My mom ended up coming up from Ronald McDonald (we got that again this week) and I put my bed back and laid down for a couple hours.

Then, he wouldn’t nap today. He ended up sleeping like 30 min this afternoon but I am guessing he is exhausted! I know I am.

He got PT and OT twice today and he even walked several times holding my hands. I am in AWE of him.

This has been his schedule as of late.

Wake up (whenever)
8:00am Meds, Neb & Respiratory Treatments
8:30am Play/ Rock/ Swing/ TV
11:30am PT & OT
12:00pm Bath, Weight, G-Tube Cares, Get Dressed (yes this takes an entire hour – hour and a half)
1:00pm Nap
3:00pm PT & OT
3:30pm Play/ Rock/ Swing/ TV the rest of the night
8:00pm Meds, Neb & Respiratory Treatments
He gets meds in his GJ tube or IV every hour to 2 hours. They also get a blood pressure every 2 hours and a temperature, etc.
We typically change his diapers and do all the rest of his cares to help the nurses and he just likes when we do it. He gets Respiratory Treatments every 4 hours too.

He gave a few kisses today and hugs and said miss you. He is goofier today and more himself.

We went up on some meds, got off of some others. Boring stuff. Otherwise not many changes.

His morning x-ray looked better today than it has in over a week so they were happy about that. Hoping it looks good again tomorrow and we can start making some progress on his vent. Hoping and praying we don’t have any more big setbacks like we did the last few weeks.

He was very sleepy today. I think he is still a little more sedated then he needs to be. He was up for playing on the mat but nothing lasted long. Then, he just wanted to cuddle.

My favorite part of the ENTIRE day was when Piper, the puppy came to see him and we got his first genuine smile. I cried. It was straight up tears of joy to see him happy!!!

I am just so frickin proud of his kid. Second after second, day after day, he continues to be so brave!

He got his PICC redressed today and just sits with his mask on so nicely. He sits so good for his 2 injections he gets everyday and he is just so brave.

His blood pressure is still high so we started amlodipine to help with that. With the heart surgery he just had (Ross-Konno), they are really careful with where his blood pressure is.

He is up to 35 ml/ hr on his feeds with the goal of 55 ml/ hr. We are going up by 5 every 4 hours so we will be at goal tomorrow.

I also woke up at 6am to them putting his NAVA catheter back in. He coughed so hard it came out his mouth. So, they have to pull the catheter out and place a new one. I feel so bad for him. It is so much. He is being pinned down and they shove a tube down his nose into his stomach. Its horrible to listen to.

Day 55.

This is just where we live now.

He is extubated! We got the tube pulled at 11:15am! He had a great night and they said in rounds we could pull it!!

As soon as we pulled it I noticed that his top front tooth is wobbly from the ET tube. It is really pushed up and sticking out a bit. I am hoping it isn’t ready to fall out but will kinda stop moving without the tube in. We will see. Maybe the tooth fairy will come to the hospital!?

He has been really content since the tube came out. We have done OT, had an (almost) real bath, swang, played on the floor a bunch and rocked even more!

It was so weird to pick him up under his arms like a real boy! HA

He also got a BUNCH of mail in his mailbox from you guys!

If you didn’t see the post…

Want to send Maxley some love? We have a new mailbox and can receive letters right to our room. I would love to get some beautiful drawings or pictures from little ones to hang up around our room and brighten Maxley’s day!

Children’s Hospital Minneapolis
Cardiac Intensive Care Unit – 4th Floor
Attn: Maxley Ferguson
2525 Chicago Ave
Minneapolis, MN 55404

It honestly made our day and mom and I both teared up. He was so excited to get to open all of the mail and drawings!

We still don’t know what caused this little (big) blip. We are just working on getting him stronger so that his lungs are ready to fight the next “thing” that comes his way. He is immunocompromised so we knew infections would come, especially with his lung injury. So, we are getting Infectious Disease involved and immunology too. We are going to try to dig into everything we can to see if we can help prevent this from happening again. As of now, it seems like this could keep happening again and again.

Praying this was just a large speed bump. Maybe things were going too well. HA. Not possible.

I was excited to get to dress him today again. We could have dressed him when he was intubated but it is really hard since you don’t want to move him too much. The risk of the tube coming out when you don’t want it to could damage the vocal cords and other risks too. We also got to get his crib back too. It is the little things when you live here. We LIVE for the little things!

I was able to get out of the hospital for a few hours today to watch Wyatt’s flag football game!

My mom stayed here with him and entertained him all afternoon.

He is still very gaggy but we are close to getting the tube out and I can’t wait!

I also forgot to mention yesterday that it has been 6 weeks since he got his chest closed so he is officially off of sternal precautions. We can lift him under his arms and he can have a bath.

I mean he can’t do any of that yet but he would be allowed to if he could.

Another day… no big updates. He is still intubated.

He gagged and gagged and GAGGED all night long. He is very uncomfortable with the tube down his throat and he isn’t overly sedated so he definitely knows it is there. He still just want constant massages.

Mom and I both got to hold him for a while today so that helped. He sleeps pretty good when he is rocking with us.

We weaned his NAVA rate down to 2.3, they want him 2 or lower before even thinking about extubating.

We stopped his diuretics, TPN and cefepime and started oxacillin for the staph that cultured back from his ET tube.

He also got an echo. He hasn’t had one in a while and the last one didn’t look very good but they thought it was due to his fluid levels and today they are back in the normal range which is AMAZING!!!!

Every Saturday, the new Dr. for the week starts, so they take a while to get comfortable with each kiddo again. They don’t usually make a lot of changed on Saturdays so I wasn’t very hopeful we would make big moves today anyway. When the Dr. rounded today she said she just wasn’t sure what caused all of this so they are hesitant to talk about extubating. There is several things going on at once and it seems like they want to “solve” those things before taking the tube out. They always want to be sure that they won’t have to put it right back in.

Just a blah boring day. We have to stay quiet so he can sleep and so my mom and I took turns rocking him, watching netflix and napping. Just a weird life we have here.

So grateful for all of the prayers being sent our way. Praying for some answers and a smooth recovery.

Today was very calm and quiet. He was awake on and off. When he was awake he just wanted a massage. He points to the lotion at the foot of his bed and then we say, “you want a massage?” Then he nods. It is very sweet.

He is sedated but will wake easy with cares, or movement. He falls back asleep pretty quickly though. He has had 15 bumps of versed in the last 24 hours. We give them for his dressing change, bath, etc. We want him to be comfortable and he does have a tube going down his throat too. It is a fine balance of wanting him comfortable and not drugging him too much because then we have to wean him again.

We put him back on the NAVA today. It has a catheter down his nose into his stomach and senses when he goes to take a breath and gives him a breath to help support. Versus a regular vent just gives rhythmic breaths but doesn’t match his breathing so this machine is a little more comfortable. We actually got the last NAVA vent in the hospital. This is the vent that helped us extubate last time so we are hopeful it will work wonders again this time!

I am still exhausted from a couple nights ago. I napped but can barely hold my eyes open and it is 8:30pm. We lost our room at Ronald McDonald today so mom and I will be sleeping in the room. She usually sleeps on the air mattress and I will sleep on the pull out but sometimes we will trade. We don’t get great sleep in here with both of us and ALL the beeping and noises but grateful we can make it work!

He is in a big bed right now since he is intubated so we had to rearrange the room a bit to make room for our air mattress.

We upped his feeds a little bit today and will up it by 5ml an hour every 6 hours. We also got off both IV drips of diuretics. The culture from his ET tube is growing Staph (again) so they started him on the correct antibiotic. They also started him on an antifungal too.

Grateful to be heading in the right direction, at least it seems like we are!

Another really really bad one.

Last night before bed he wasn’t really maintaining his oxygen saturations and he was pretty maxed out on his vent settings. There weren’t a lot of options to do before needing to intubate again. He also spiked a little fever too which was new.

The nurse woke me up at 1am to tell me he was desatting and they were going to put in the NAVA catheter again to see if that would capture him better. They inserted the catheter and then did an x-ray to make sure it was in place. While trying to put that into his stomach (through his nose) they accidentally got it into his lung. They took it out quickly and reinserted it but he couldn’t stop coughing and was not able to get his oxygen back up even on the NAVA.

They waited a bit but ultimately, they made the choice to reintubate him. Then for the next hour or more, he still wasn’t able to get his heart rate below 170s and couldn’t get his O2 above 80s. It was very very scary to watch and I am sure for him to live through. I couldn’t stop sobbing. My whole body was vibrating and shaking. I just feel so bad for him. He must have been so scared. I just hate this. I hate this life for him but I need him here so badly. I know he wants to be here. He is fighting so hard to be here for the both of us. He is my hero, hands down.

After a little over an hour and a LOT of sedation, his numbers finally came up to a normal level. My mom and I sat in the room and stared at his monitor to watch his vitals for a long time before I finally fell asleep in the chair and my mom on the pull out.

Today, he is stable. He is very sedated and comfortable. His vitals are good and his fever is gone.

I am really anxious because we don’t know what is causing this. We don’t know why he is getting worse and not better. We sent blood cultures and ET tube cultures to see if anything grows. The preliminary results are growing something but it will be a few days before we know for sure. His inflammatory markers are high so we think he has something brewing but don’t know what.

So, the goal for now is to figure out what the hell is going on but keeping him sedated and comfortable.

I am so so sad. Today is day 50 and we are back to square 1. We have been here over 7 weeks and have basically nothing to show for it. It is very defeating. I miss him. I am scared for him. I am sad for him. I can see the fear in his eyes when he wakes up and looks at me. I just want to scream and cry and punch everyone and everything.

I am just sick about it all and have spent a lot of time crying.

We are back on 10+ meds and had to put in 2 more IVs just to gain access to his bloodstream. We were almost done with weaning him off sedation and here we are. I am just sick about all of this and feel like I am in a nightmare. I feel like I must be making all of this up because nobody’s life sucks this bad… but ours does.

Please pray for answers. We need to know why his lungs are failing him again. We need patience to get through this terrible time and strength to know he can get through this.

Want to send Maxley some love? We have a new mailbox and can receive letters right to our room. I would love to get some beautiful drawings or pictures from little ones to hang up around our room and brighten Maxley’s day!

Children’s Hospital Minneapolis
Cardiac Intensive Care Unit – 4th Floor
Attn: Maxley Ferguson
2525 Chicago Ave
Minneapolis, MN 55404

Hopefully soon he will be able to make his way to the hallway himself to check the mailbox!

Today was pretty good. He was up for doing more things and he took a 2 hour nap. I am seeing more and more of his personality. He is asking for hugs and kisses which is normal. He said “miss you” when I left during his PT & OT. He is saying thank you to people when they do things for him. Ugh. I missed him so much.

He also got his new leg braces today too! He is trying so hard to walk but is just SO tight, it is really hard for him.

He got to paint with Ashley and everyone is commenting on how bright eyed and chatty he is. I was laying in bed the last few nights and I can hear him trying to say things to the nurses and he is really sounding words out so they can understand him. Which is really hard with all of the oxygen support he is on.

Pic above- I asked him to take a picture with his painting and he did this and then immediately stopped smiling. It was SO cute. I didn’t even ask him to smile. I just wanted him to hold it up!

Speaking of… He is back on BiPAP. Overnight he developed a terrible cough and a little low grade fever. Right now he is pretty much maxed out on the amount of support he is getting from this vent and still barely hitting 90% oxygen sats. There are a couple minor things they could do before they would have to intubate him again. I am scared. That feels like such a major step backwards. I am so scared. I am anxious to go to bed because I am terrified of them waking me up with the news they have to reintubate. UGH. We are working on getting him more dry today but it wasn’t enough to make it better yet.

We have taken so many steps backwards and I just want to be home. I cried so much after I went to bed last night because I am just so exhausted and I want to go home. It isn’t fair. I want to put him to bed in his own room. I want to go back to my own life. I am sick of being worried about his blood pressure (which in fact we are concerned about), worried about his reparatory rate, worried he won’t tolerate his meds, or GET TANGLED IN THE DAMN CORDS. Ugh, I am so fricken sick of the cords.

They did a nose swab for any viral things and it came back negative so we are good there. The Dr. believes it is just because he is so fluid overloaded. We needed him to be overloaded because he was in renal failure but now that we are much better in that department, this is the new fear. They knew this would happen and it was something we had to do to get his kidneys working better. Now, we need to get him dry so that his blood pressures come down and he can breathe more comfortably.

Prayers we can get through this lung edema without intubation and we are only moving forward.

Much love, K & M

Wow. Last night was rough. He has roid rage times 1 thousand. He hasn’t slept now in 2.5 days. He didn’t sleep more than maybe 3 hours last night and wouldn’t nap again today.

He is beyond wired and I am hanging on by a thread. The second you start to calm him down an IV beeps off or his pulse ox beeps because it isn’t picking up. It’s SO bad. I am slowly losing it.

It’s so much beeping and so much fighting with him I just can’t take it anymore.

I am crabby and exhausted and I just want to be done here. He is miserable and I am miserable.

We moved back onto CPAP today which is a big step in the right direction but we have SO far to go. I am disheartened and exhausted.

Today was rough. Maybe tomorrow will be better. Maybe not.

Happy Canadian Thanksgiving to my Canadian friends and family!

Mondays are always super busy because we see every single specialist that we have. They all come in to chat and give their thoughts on everything going on with his kidneys and why we have been going backwards.

It is exhausting but helpful to hear the different perspectives.

He got PT and OT 2 times today and they fitted him for new braces which will help him sit to stand and eventually get back to walking. He is so weak and his muscles just shake with any movement. It is so sad watching him try to do things he used to do and get frustrated. He doesn’t understand. He can hardly sit up on his own or roll or move at all. It is so hard.

He also got an ultrasound of his neck and arms to see if we need to continue on his twice a day lovanox injections for the clot in his left IJ. I am sure they will say to continue another 6 weeks but they like to check to make sure.

We are more and more exhausted with all of the work it takes to move him around the room and constantly entertain him and say over and over and OVER again, “no you can’t eat. no you can’t have water or milk or the other hundred things you are asking for.” He asks for water every 3 seconds and just cries when we say no. It is probably the cutest thing ever because he says in his little meek voice, “one little snack please” or “one sip” and clasps his hands together and I swear he can make his eyes into the eyes from puss n boots and plead with me. It is terrible, I just want to cry.

We are all miserable. We are tired and crabby and stir crazy. Mom and I mutually forgot tonight a whole conversation we had with our nurse. Neither of us remembered. It is embarrassing.

It is good to see more and more personality and his happy-adjacent personality.

I miss him. I miss home.

Today was just a good day. I can’t go so far as to say he was happy but he wasn’t as crabby. He just had more of a twinkle in his eye and looked like he would maybe be close to smiling.

My mom was gone most of the day so it was just Maxley and I. We took a nap together and played. He sat and played on his iPad and it just seemed more normal, that was nice.

He peed a ton today. We went through several outfits and onesies. That part is exhausting but we are so happy about the pee that I don’t mind. His blood pressures have been good today and his lungs sound much better too. Not sure he got any of that steroid from last night because his glucose was the same. We were expecting it to go up quite a bit with the steroid. So, today was probably his first official dose.

Seems more comfortable today overall. Thank you for the kidney prayers, we would love for continued prayers for his kidneys!

Another really shitty day.

He slept good but we realized early that the night nurse forgot to run labs so we had to do that and then wait for the results. Then, his BUN was super high so a couple hours later we ran it again and it was even higher. The doctor is very concerned with how high it is and how quickly it went up. It has been going up rapidly over the last week. We have tried to diarese him while not damaging the kidneys, but according to the labs, his kidneys are not functioning well.

He went several hours today without peeing at all. Throughout the day they ran several more tests and talked to multiple specialists to determine the best next step. There could be several reasons that his kidneys are not functioning. Some related to his heart function, or his vascular system could be dry, too low of blood pressure, and some other ancillary factors that do affect kidneys such as the contrast from the CT Scan he had 2 days ago.

We looped in Nephrology to get their thoughts on everything going on. They will start following him now. They ordered a urinalysis, which requires us to tape a bag to him in his diaper to catch urine. The first attempt the bag came un-taped so had to be thrown. The second attempt was covered in poop after a big blowout, so finally the 3rd time worked and we were able to get the sample.

Besides several labs, they did an ultrasound of his kidneys, bladder, liver and stomach. They also did another abdominal xray to rule out other things. The good news is that everything looked good and no concerns such as blockages or anything.

They added back Milrinone which helps relax the heart and they think that will help his blood pressure. They stopped Enalapril, which lowers blood pressure. He was on the BP med because last week his pressures were way to high. They want to continue with diuretics but some of those doses changed.

They also started a 3 day steroid burst to help dry his lungs. They aren’t sure what the fluid in the lungs is from, and in the past with his interstitial lung disease, using these steroids helped. We are so fortunate to have most of the same doctors from his first surgery and with all the complications he had, they all know him so well and know what has worked in the past.

They are all so damn smart too. They remember everything, even from 5 years ago. They are like, oh yeah, we did a 5 day coarse of blabity blah and that worked… WOW!

They are very closely watching his blood pressure. It has to be high enough to kick in the kidneys, but not too high which is hard on the heart. They are trying to be very protective of his recent repair. His hemoglobin has been dropping and they did transfuse him earlier this week, but it is still low, so they are transfusing more tonight. A higher HG could really also help his BP and how he feels.

Ther are SO many moving parts. Adding in a certain med can cause something else to go up which isn’t good but taking away this med is bad for something else and it is balancing 467 glass balls in the air while standing on a thumb tack while someone puts pepper under your nose, just hoping you don’t sneeze and lose it all.

The night Dr did say that she feels like his kidneys are just really fragile from when they were injured weeks ago when he was on ECMO. It might have been one small thing that made the kidneys say NO THANK YOU and so now we have to take a bunch of steps backward and figure out the right course.

It was such a hectic day with so many changes and tests and not knowing what was going on that by about 5:30 we both had headaches and were exhausted. My mom was rocking with him and went to put him into bed to change his diaper and when she sat Maxley sat up, his whole back was full of blood. SO, yes, there was blood on his shirt, onesie, Elmo pillow and my mom. The pillow under her arm was also wet with some type of clear liquid. I jumped up and got a nurse in here and after quite a bit of tracing lines, they determined that an IV line broke and caused him to bleed out of his PICC line. The nurse had just hung a bag of blood for a transfusion, so we all assumed it was that blood that was leaking, but the worse news was that is was HIS blood that was dripping out. So 4 nurses came in and they got it all figured out and redid all the lines. Because the line broke going into the PICC, he also had meds that leaked all over so we aren’t sure what he would have gotten. They had to evaluate what he would have gotten with what may have spilled and weigh whether or not it is worth redosing him. Ultimately they decided not to give any of his meds again and just watch him closely.

He continued to get puffy today and looked worse than yesterday, but he seemed more himself at times today. He actually played a bit and told a few people good bye when they left today. He has been so crabby and hates everyone here, so it was nice to see him warming up a bit. He also got to talk to Mountie through our video camera at our house. In his little soft whisper of a voice, he said “hi Mountie” and our dog looked up. Maxley got very excited and wanted to do it over and over. I felt bad for Mountie, but it made Maxley so happy to do it, so I let him.

By 7:30, all was cleaned up and everything settled back to (our) normal.

What a day. I am really really hoping that all of the changes will help and we can have a quiet day tomorrow.

It is really really scary to watch him decline and knowing his body is just so fragile. I just feel so much trauma that I feel like any minute he could just spontaneously combust. I am just so so scared. I feel like we turned a corner where I knew for sure I would get to take my baby home with me and the second you feel a tiny bit of hope, you are smacked in the face with the realization that he is still really really sick. We have a long road ahead.

Please pray for Maxley’s kidneys. Praying they recover and the rest of his body can keep up with his recovering body.