Life at home

We were discharged from the hospital on Friday!

Grandma and Ethan in the playroom

Finally going home!

The first couple days were a little rough at home with a lot of moaning and just sitting around not moving. However it was better than he was in the hospital, so that was a huge relief! Sunday and today Ethan showed a huge improvement! He asked to walk around the house and in the backyard a little. Yesterday he went to visit his grandparents where he took a wagon ride down the street and then rode his scooter down the driveway. Today he sat at the kitchen table and did some schoolwork and coloring. We also went to the grocery store - he rode in the stroller, but at least he was out and about a little. He complained he was super bored today just stuck at the house.

Trying bites of popcorn!

We are working on oral intake still. He is drinking throughout the day and we finally have him swallowing his pills again - even though he has to do it in rounds and rest in between. He still is barely eating real food - only small bites here and there. He definitely likes having the tube, but I am afraid he is going to be too reliant on it since he is afraid to eat because he gets sick so easily. Thankfully his nausea has been very well controlled since we got home, but he also is not pushing it at all. It helped tremendously that we were able to cut his feeds down from 320cc to 120cc per feed.

Breakfast

Callie started 8th grade today! Ethan wasn't able to start 3rd grade since he is just not physically ready yet. He did think it was great this morning when Callie had to leave and he was able to stay home with the new kittens! He will have a teacher come to the house starting tomorrow. He will receive a few hours a week of in home tutoring until he is ready to start integrating back to school. Ethan loves his teacher so he should be very happy with this plan. :)

Off to 8th grade!

He managed to do a couple pages in his school book

Ethan has to get bloodwork done this Wednesday to check his INR, potassium levels, and other labs. He also has a neurology appointment this Friday. He then has a cardiology appointment next Wednesday. He will do a Holter monitor to check how his arrhythmias have been doing now that he has been back on his meds and receiving adequate nutrition. Hopefully it will show that his heart rhythm has stabilized and he is doing much better! He also needs to see GI and psych, but I don't have the appointments scheduled for those yet.

He is still receiving cards and packages in the mail, so thank you to all who have been sending him things! We also want to thank everyone for all of the prayers and support we have received! We learned a special Mass was said for Ethan today, so thank you Mary and Emil! We know that many churches and people are praying hard for Ethan's recovery and we are so grateful! Please continue to pray for him. Please keep praying that his pain eases, he is able to tolerate food, and that he starts to sleep at night! Hospital life has completely messed up his sleep schedule and he wakes constantly throughout the night. I will update again soon with how he is progressing.

Day 15

We are still here in the hospital but are now in the step down unit. Unfortunately we have roommates again. :( *sob* They barely speak any English, they have like 40 family members all hanging out in our teeny room (might be a mild exaggeration), and they are definitely not trying to speak quietly even though it is Ethan's bedtime. Hopefully Ethan won't drive them insane with his moaning all night long. In fact they just called their nurse because our monitor alarm was going off and it was bothering them. *sigh* Hopefully we will be out of here tomorrow so we only have to deal with it for one night - at least that is MY plan!

Ethan's day yesterday went okay. We were in PICU and everything was uneventful throughout the day. He is extraordinarily clingy to me, depressed, and acting like a baby. This started up the minute we were readmitted. :( He refused to get out of bed or even sit up in bed all day long. John finally arrived around 8:30 last night so I snuck out of the room to shower. While I was down there Ethan completely flipped out. He threw a massive fit and got so worked up that he became tachycardic again and went back into A-Fib. I couldn't believe it. All we had to do was have a perfect day/night and we would have been able to go home today. Nope. Ethan had different plans. His heart rate was up and down all night long and he had arrhythmias throughout.

This morning during rounds the docs decided to increase his Nadolol dose. He also was given Digoxin again since his last night's dose was held after finding out his levels were too high from the morning blood draw. After those meds were administered his heart rate was perfect and we were moved to step down. We were able to take multiple rides in the wheelchair today to roam the hospital and go to the playroom. He didn't feel like playing with anything, but this evening he did attempt to play the iPad. He even sat up straight for about two minutes before giving up - that is a big record for him!

Ethan did throw up around lunch time. Once again he threw up an entire pill - one that he had taken hours before and should not have been intact and in his stomach still. I don't know if it is getting stuck in his throat on those "ridge" things we saw in the swallow study, or if there is an issue with his stomach. We are going to have to do a stomach emptying study on him. That might be a big part of why Ethan is never hungry and always feeling sick now.

Occupational therapy came and saw us this afternoon. She made Ethan get up and take a short walk to the phone in the hallway. He argued and moaned the entire time, but at least he did it. He has not been friendly to anybody today. He is arguing, yelling, and refusing to talk to doctors/nurses/therapists. It has gotten a touch better as the evening has gone on, but this afternoon was horrible! I hope he will be more cooperative and nice tomorrow!

We still don't know the true reason that Ethan's heart is arrhythmic. We were unable to do his breathing treatments because they are afraid the shaking of the vest will cause rhythm issues. Also after his Xopenex treatment today he spiked up and had a bunch of issues, so that is not going to continue for the foreseeable future. We are weaning off his oxygen though! We were able to take it off around lunchtime and only had to put it back on for a couple of hours earlier this evening. It is now back off and he has sats in the upper 70s to low 80s. We still definitely expect to see improvement with that as his lungs heal.

Dr. Z stopped by earlier this evening and was a bit disturbed at what he saw. Ethan moaned the entire time. He didn't seem pleased either - Ethan is just acting completely wrong. He is miserable. I think being in the hospital is making it a lot worse on his psyche and I think he really needs to get home to kind of mentally recover from everything. Dr. Z was wondering if he is having some kind of psychosis issue. He could be dealing with some kind of PTSD or issues as a result of medication/sedation. We just don't know yet, but he definitely needs help. :(

I unfortunately missed Callie's school open house this evening which I was really looking forward to. Ethan's is tomorrow night, and I don't see us making that unfortunately. :( Ethan does have a meeting at school tomorrow morning to go over his plans for the year. I spoke with them on the phone today and they said his teacher this year is wonderful, and they are offering home school/tutoring for him! They are so supportive and are working to help make Ethan's time off and transition back as smooth as possible. :)

Please keep us in your prayers - we are so appreciative of them! Please pray that Ethan remains stable and his new med doses are exactly what he needs to keep his heart happy and in sinus rhythm. Please pray that we get a good night sleep and that Ethan and our roommates are quiet and good. Please also pray that Ethan is happier, more cooperative, and nicer tomorrow to everyone. Also we need prayers for his eating. He is absolutely refusing to touch a bite of food during this admission. I don't know if his nausea is that horrible or if it is also emotional. We thank you for your prayers and support, and please keep them coming. I hope and pray that we will get out of here tomorrow!

We're back...

So our first full day at home yesterday was eventful. It was so wonderful to be home, but Ethan definitely kept us on our toes.

Ethan had diarrhea from morning through late afternoon. I am not sure what caused it, but my suspicion is all the laxatives over the past weeks kicking in and finally being comfortable at home to go to the bathroom easily. The diarrhea apparently messed with his electrolytes and his potassium dropped once again. He seems to be very sensitive to potassium drops as this caused his arrhythmias the previous week in ICU. His heart rate started spiking randomly to 180s-190s and then dropping back down to his baseline around 100. This went on for a few hours and his nausea worsened causing him to vomit a couple of times with his feeds.

Ethan took two baths during the day because he was really gross from not having a bath for two weeks, was covered in adhesive residue from all the tape, bandages, and monitors that he had all over him, and he said it just felt really good to be in the tub (but of course we didn't submerge his incisions).

All cleaned up after his bath :)

When he went to bed for the night his heart rate was up around 190 and not dropping. He felt horrible and asked if he was going to die. Poor baby. We told him that we had to go to the ER because obviously he needed some help getting his heart rate stable. He burst into tears saying "I'm going to miss my comfy bed." Trust me buddy, I will too. :'( We arrived at the ER around 1am and they immediately got to work. Labs were drawn, EKGs were done, an echo was performed, shock stickers were applied, and two IVs were placed (the first one blew with our first attempt at an infusion). His poor veins are just completely shot after all these pokes these past few weeks. We were on FaceTime with our electrophysiologist who determined that he was in A-Fib. His potassium had dropped and his electrolytes were messed up from the diarrhea and vomiting through the day. He also had been taken off his beta blocker (Nadolol) during his blood pressure crisis a week earlier. Having the potassium drop and no Nadolol to protect him just made it very easy to slip into another arrhythmia.

Bonding time with the bucket in the ER waiting

Definitely not feeling that great :(

In the ER we did an infusion of Digoxin and took a full dose of Nadolol. He almost immediately had his heart rate stabilize and drop to mid 80s. Thank the Lord! At this point he was completely drenched in sweat - so much so that he sweated off his leads and even his IV taping which is extremely sticky! We transferred up to PICU around 5am and settled back into our old room.

Heart rate 177 at this point

Around 6:30 surgeons rounded and he was doing well. Docs rounded again at 8:30. We discussed how Ethan definitely cannot be taken off his Digoxin or Nadolol as he is way too prone to arrhythmias. I voiced my surprise before discharge that he was taken off originally considering his past rhythm issues, and one of the doctors actually said "Well, you were right."

Since then we have been doing respiratory therapy, tube feeds, taking meds (and vomiting some back up), and trying to rest a little bit. We are both exhausted but it's almost impossible to sleep here, especially when all the different specialties keep wanting to come check in. We are hoping and praying that everything goes perfectly from here on out and we can be discharged tomorrow. If not tomorrow it should be Thursday. Ethan is already slipping back to his super whiny depressed hospital state, refusing to even attempt eating food, and doesn't seem to want to even sit up in bed much less get out of bed. We should be seeing behavioral health during this stay since he struggled so much last time and it seems he is right back in that mentality now. :( Hopefully this will be a very quick stay and he can snap out of it quickly.

Tomorrow and Thursday nights are open houses for the kids' schools. I really wanted to be out of here to go to them! I spoke with Ethan's school nurse on the phone this morning and we have to coordinate a meeting when we get home so we can discuss all that needs to be done as far as returning to school. Our original plan was for Ethan to start school on Monday with everyone else, but only attend part-time (just come for a few hours in the mornings so he doesn't get too far behind the rest of the class). Now with this setback I'm thinking that is unfortunately doubtful. We have to see what alternatives can be done - having tutoring at home or the library, sending home work for us to work on at home, etc. I really don't want him to start even farther behind everyone else on top of having to adjust to his new class after everyone else has already been acclimating to the start of the year. It is frustrating, but hopefully it will all work out well.

Thank you so much for all the prayers from my Facebook post. We are so thankful that you all are so supportive and praying for us to get over this new hurdle and get back home soon!

Day 11 Post Op

This morning started off like all the rest. Ethan was grumpy and in pain. It took a bit more effort to convince him to get out of bed today, but thankfully he did get up to go for a wheelchair ride.

Someone came and talked to us this morning about our plans to leave today. She let us know that because it was the weekend, the home health center would not be able to deliver our feeding pump. Because of that she said we had to stay another day. Um...I said no. We proved that Ethan could tolerate the gravity feed last night and we are fine doing that until Monday when the pump arrives. Thankfully when rounds happened, the doctors all agreed that we would be able to handle Ethan's care. Dr. Najm (our surgeon) also told me that he wants to do another 3D model of Ethan's heart. He would love to have before and after models and I think that is amazing! I would love to see the difference between the two - and to see how his heart really looks now! I definitely hope that we are able to have this happen!

Transport came and took us down to the basement for the final chest x-ray. Ethan did well and the scan showed that his lung looked better than it did on Friday! We are making a little bit of progress each time, so hopefully these therapies will help open everything up soon! His lower lobe is going to be the big test - the upper responds better but the lower lobe has been very problematic in the past. Only time will tell with this!

We weaned his oxygen down to only 1L and he is still doing well with it! He is mid to upper 80s, and we expect it to increase once his lung is healthy. :) It is beyond amazing seeing his beautiful pink lips, pink fingers and toes, and no blue nose/dark circles around his eyes!

We went outside on one of our walks today and sat in the sunshine. The weather was beautiful and Ethan was able to watch a police car blocking traffic from an accident. He was happy about that! Unfortunately a woman came out who was cursing up a storm and lit up a cigarette while sitting in our little seating area, so Ethan and I left to go back to his room. :(

He enjoyed getting some fresh air

Watching the cop car

Ethan had his stitches removed from his chest tubes and thankfully he handled that pretty well. We also spent time packing up the room because...WE WERE DISCHARGED TODAY!!! John and Callie came to pick us up this afternoon. He had to take a cart to take our ridiculous amount of bags to the truck!

Seriously first real smile all day! He was so happy!

So happy to get home! And thanks again to Mended Little Hearts - the seatbelt pillow is amazing to keep his chest wounds safe and comfy!

Needless to say we were so thrilled to get home! Ethan was/is still in pain and complaining, but hopefully he will get better faster at home. He said he was starving when he got home and ended up eating two bowls of chips and all the toppings off a piece of meat lovers pizza (I haven't had a chance to go grocery shopping yet!) That is probably more than he has eaten by mouth all week! We are continuing with the new med routine, gravity feeds until our pump arrives tomorrow, daily weight checks to ensure he continues gaining, and hopefully getting him stronger so he can be moving around more. He definitely doesn't have the option to refuse walks and just sit in a wheelchair here at home! :) I also met with nutrition who provided some high calorie recipes to try and put some weight back on Ethan.

Our new meds with the exception of four that we are still waiting on from the pharmacy

Please pray that Ethan's pain is controlled well and he starts being able to move around more easily. Also please pray that these tube feedings help him get back to his pre-surgery weight and gain back strength/energy. We have a lot of things going on this week like school open houses, I need to meet with Ethan's school and new teacher to discuss his transition to school, getting back to therapy appointments, and cardiology appointment on Wednesday. Ethan has had an extremely difficult time emotionally over this hospitalization, so I will be calling his psychologist to set up an appointment quickly. Hopefully we will get good news and have a wonderful healthy week! Ethan wants to go grocery shopping with me (he basically just doesn't want me to leave his side) so that should be interesting. Thank you so much for all the prayers and please keep them up! We are so grateful to be home and doing well, but we definitely have a lot of progress that needs to be made still!

Day 10 Post Op

Today was a pretty good day!

Ethan woke up in a grouchy mood and wasn't exactly friendly with the doctors - big surprise. He was having a lot of pain in his chest so that definitely made things worse. He has stopped the Lidocaine patches on his chest and he very rarely takes Tylenol so his pain is higher than necessary.

We met with GI this morning. They want to see Ethan for an upper GI study, but that should be able to be done outpatient at a later date. They were throwing around different ideas about what his swallowing issues could be from, but one they are suspecting is EoE (Eosinophilic Esophagitis). It is an allergic/immune condition that causes swelling of the esophagus. Testing will be able to give us a much better idea of what the problem is.

Big discussion today during rounds was prepping to go home! WAHOO! Our stipulations were to have Ethan's morning chest x-ray look the same or better than Friday's. He also had to tolerate a gravity tube feed without vomiting. Thankfully the feeding went well so one less thing on our list! :)

Today I was given Ethan's discharge paperwork packet, went over all the machines/supplies we need at home, and received a bag filled with almost all of the meds he will need when we get home. We will have a new feeding pump, formula, and supplies delivered Monday, we need our Smart Vest company to send a larger vest, we need to find our nebulizer or buy a new one, and fill our remaining prescriptions that they didn't have available here.

Ethan took four rides in the wheelchair around the hospital today. We went to the rooftop again and visited the playroom twice (even though he was hurting too much to play). Ethan was feeling bad enough to turn down Starbucks, so you know how rough that is!

Thank you so much for all of your prayers! We have been so blessed to have everyone's love and support! Please keep up the prayers for continued healing and that we can go home tomorrow! We had one lady up on the rooftop today chant healing prayers, sing songs, and dance around for Ethan. It was pretty unusual, but nice of the woman (she was an older lady who recently had heart surgery too) and she definitely made us smile. :) Hopefully I will have wonderful news to report tomorrow about going home!

Day 9 Post Op

Last night was pretty awful as far as sleep goes. Ethan is crying, yelling out, and talking in his sleep all night long. Our roommates were not very pleased about that. I kept trying to keep Ethan relaxed, but I could still hear them complaining to each other (teen and his parents) because they couldn't sleep. I felt horrible and exhausted. They must not have been too mad though because when they were discharged at dinnertime today they left an enormous stormtrooper balloon for Ethan! He had received it as a gift and figured Ethan would like it better. I thought that was so nice!

Yeah, this giant stormtrooper will most likely give me nightmares hovering over my bed/chair!

Even though we had a rough night today was really good! Ethan was able to be out of bed from breakfast until around 3pm! That is amazing considering he usually only lasts short periods of time before begging to get back into bed. We started off the day with an echo. It went well but I have to wait for the full results until morning rounds.

After that pulmonology came in to do his lung therapy. Ethan was not happy about his treatments so he told the therapist that he wouldn't talk to her today. (He ended up being nicer later in the afternoon for the rest of his treatments thankfully.)

We then had another chest x-ray and a barium swallow study. The chest xray actually showed a little improvement in his left lung! A small part of the top section has opened up, so we will continue with his current lung therapy but actually increase the intensity. We also added Xopenex treatment to try and ensure that everything stays as open as possible. The barium swallow study went well. Ethan was really nervous about getting it done because he was afraid it would taste disgusting and make him puke more. Thankfully he tolerated it all very well and only got nauseaus at the very end - I think it was just more than he was used to consuming so he was way too full. The scan showed that he has two small sections of his throat where foods/liquids are getting caught. It is not significant though and it is not causing aspiration thankfully. We just need to make sure that Ethan takes drinks after every couple of bites so nothing accumulates in his throat and causes him to choke/gag like he has been doing.

We discussed in rounds the fact that Ethan has been on most of his treatments at home, so we are definitely trying for discharge on Sunday! We have oxygen for him, his smart vest lung treatments, nebulizer, and we have done a feeding tube in the past with him. He has to show positive weight gain through the weekend, and if that happens as well as no other problems we should be able to get out of here! We are still working on good pain control - mainly stomach. I don't know exactly what's going on with his belly, but it is definitely not happy. We are still doing tube feeds. They were continuous slow feed up until this evening. At 7pm he had his first bolus feed. He complained of stomach pain, but of course he had been gagging before even starting the feed. He is taking Zofran as needed, Pepcid, gas drops, as well as multiple laxatives/stool softeners. Hopefully his belly will continue to tolerate the feeds and his oral intake increases without belly pain.

We were able to spend a lot of time roaming the hospital today since Ethan felt good enough to be up in his wheelchair. We took a trip to the rooftop pavilion and it was really nice to be outside again!

We are hoping and praying that Ethan's energy levels improve even more tomorrow. He was able to take his longest walk yet since surgery! He complains that it hurts his legs - because his muscles are so deteriorated and it tires him out.

Please continue to pray for his belly pain to ease. Also please pray that his lung improves. We need his INR to decrease to his normal range (it is currently too high at 3.5). We are aiming for 2-2.5 so now we are messing with his Coumadin dose. It is most likely due to the huge change in his nutrition, and all the blood products and fluids he received over the past ten days. Please pray that we have continued improvement overall, great pain control, and ability to tolerate food. Thank you so much for all of your prayers, love and support! It is so appreciated!

The kids find this toilet funny because the seat is enormous! We are finding humor in the little things at this point LOL

Day 8 Post Op

This morning Ethan has had a very rough stomach. He has vomited multiple times - even right after trying to take medicine. Because of this, the fact that he hasn't really eaten since surgery, lost ten pounds, and now cannot keep anything down we decided to place an NG tube. This will help us get medicine in Ethan and supplement him with high protein/high calorie feeds to help put some weight back on him. We are starting with a continuous feed today to ease his stomach back into tolerating food. Then tomorrow we will switch to bolus feeds to see how he does with larger amounts in a single sitting. Hopefully this will help his stomach feel better as well as be able to give him his meds and proper nutrition.

We also did not have as much lung improvement as we had hoped for. We are going to increase his respiratory therapy to try and help him out. We will do smart vest therapy again (same things we did at home) to shake and try to break up the gunk in his lungs. We also are going to use some sort of "cough assist" to try and help him expel his secretions. Part of PCD (primary ciliary dyskinesia) is that he has a much harder time getting the gunk out of his lungs and actually cough it up. Hopefully this will help him out.

We took a nice long wheelchair ride down to Subway so I could eat lunch, and then hit the playroom. He decided to play Just Dance, but by the time they set the game console up he was pretty tired and wanted to take a break. We returned to his room with a movie so he could rest up. He is very weak still and only tolerates being up and about for short periods of time. I think a lot of it now is the fact that he hasn't been able to eat for so long that he is just really weak from that too! Hopefully now that he will be getting some nutrition in him with the tube will help us be able to build up his strength.

Ethan was so happy again at mail time! He received an emoji pillow with some lego mini figs, a Target gift card, money and a handful of cards! He was thrilled and we are finally able to decorate the walls with all of our cards - so thank you so much!

Ethan did really well today! He did respiratory therapy with the smart vest and the cough assist machine. He of course didn't like it, but did it anyway. The cough assist start out with a mask for his face...but of course he completely panicked with that since he is terrified of masks (thinks he is being put to sleep for a procedure). The respiratory therapist then tracked down a mouthpiece that he could just put into his mouth and he handled that much better. He did not like the sensation at all, but at least he stuck it out.

After that respiratory session he earned another walk...and the nurses finally agreed to him getting Starbucks! He has been asking for a week so he was thrilled! Granted his belly only allowed him to have 1/3 of a mini frappuccino, but it was the most he ate in a long time so I was happy. That should help add a little weight to him too! :)

We ended up getting a roommate after all. *SOB* They seem nice, but I feel so horrible trying to keep Ethan quiet all the time so he doesn't bother them. Of course Ethan is moaning and whining that his belly doesn't feel good so I only hope he is peaceful tonight so the other family isn't upset. I also just hate trying to keep Ethan quiet when he is hurting...I know the last thing I am sure he wants to focus on is being quiet when he is in pain or scared. :( Hospitals really need to have private rooms for everyone!

After John finished up work for the day he was able to come out to visit, so we all (Callie and Grandma were visiting as well) were able to go for another nice walk around the hospital. We even went outside for a couple of minutes to feel the fresh air - I have only been outside for no more than 30 minutes in the past ten days - and Ethan hasn't been out at all. It felt wonderful. Tomorrow I hope to take him to the rooftop pavilion. I never have been there, but I think Ethan will really enjoy being outside again. We have a lot of pushing to do with keeping Ethan up and moving tomorrow. He definitely needs to be moving more, feeling better, tolerating food, and have his lung look better before we are allowed to come home. :'( I am really hoping that his energy will be so much better after this formula he has been receiving all day and all night, and that he will be able to get up and around even more tomorrow. I know we have dealt with his lung collapse for years in the past, so I am not terribly concerned about that. We can continue doing his smart vest therapy, oxygen, and everything for that at home. He just needs to get out of the hospital! His school posted class lists today and I hate missing out on all of this stuff! I am hoping that John or someone can swing by and take a picture of his class list for me so he knows who his teacher and classmates will be this year. And we definitely need to be home and doing well so we can attend all the school open houses next week!

Please continue to keep us in your prayers! We are making baby steps, but moving in the right direction thankfully. Please please pray for a peaceful night. He is very restless, whining and talking in his sleep, so our roommates are going to be pretty irritated soon. :(