Cardiology, etc

We had a decent week with just a few hiccups along the way.

Ethan is doing well with his schooling. He loves working with his teacher at home and seems to be doing well so far! Today he was able to go in to his school and participate in picture day. He was very excited to meet his teacher and class! He was happy to see some of his friends and his new teacher seems very nice. Hopefully Ethan will do well in his class this year!

We had a good Labor Day weekend. After we were discharged from the hospital we were able to enjoy the rest of the weekend. John and I finally made it back for an Indian's game. Then on Sunday we went out on the jet ski to watch the air show. We had a great time and it was so nice getting out to have some fun!

Unfortunately when we returned to my parents' house (for dinner and they had the kids) we found out that my Grannie was sent by helicopter to the hospital for heart issues. She had a pacemaker put in. She is doing better now and is being discharged from the hospital, but prayers for her are very much appreciated!

Yesterday we had a cardiology appointment downtown. It was a very long day. We started off the day with Ethan in a great mood, and I was very excited that the docs/nurses were finally going to see him in a good mood! Unfortunately once we went through the doors to the cardiology floor Ethan's mood changed completely and he went right back to whining and being in a terrible mood. :(

They could tell that Ethan is not feeling good. We did a chest x-ray to check on his lungs, and we found that his collapse has opened up more but now he has fluid built up on both sides! We had to restart his Lasix to try and remove this fluid. We had thought that his wonderful weight gain has been because of his tube feeding providing good nutrition as well as eating a bit more real food in addition. Apparently that is not the case. Upon weighing him this morning he has already lost 4 pounds. Now we have to make sure we remove his excess fluid without drying him out too much and messing with his electrolytes causing his heart rhythm to mess up again. It is a delicate balancing act.

 

We also took blood work to check all of his levels and his INR. Hopefully the results are good, but I have not heard yet.

The doc said there are likely a few main factors that are causing all these setbacks with his recovery. These are his lungs still being horrible, his esophagus still hasn't been addressed and could be causing issues, and he appears to be developing an infection around his incision. It started getting red two days ago. The docs called in an antibiotic prescription for him, but it still got a little worse the next day. It is still red and irritated, but so far he has not had a fever or any kind of drainage from it. We took a swab of it at the doctor's office so I hope to have the results of that soon. Hopefully the antibiotics work well and his incision improves quickly. There was talk of placing a PICC line for IV antibiotics, but we are not doing that now. Hopefully the oral ones do the trick and we don't have to resort to that!

day 1

We are still waiting for our GI, psych, and counseling appointments that will begin next week. Hopefully we get a lot of these emotional, behavioral, and GI issues addressed quickly! He still is struggling with his intake, but at least is improving each day so that is really great! Hopefully his progress will continue and we will be finished with the NG tube before too long! He definitely needs his esophagus checked out, potentially a scope and to check for possible ulcers (doc suggested he may have stress ulcers), and making sure his diaphragm is okay (it looked changed on his x-ray). He complains still of "I can't breathe" spells a lot. We don't know if it is mental or if there is some physical problem that is causing this, but it is definitely one of the top things to be addressed in the next few appointments. Also addressed was his hunchback. Ever since surgery he has been hunched over and I wanted to see when we should start addressing this before it gets to be too late. The doc thinks we should have neurology make sure there is no neurological reason for weakness. If he is cleared with that, then it will probably just be address with physical therapy.

He still unfortunately refuses to sleep well. That is a huge issue that will be discussed with psych. He is not allowing us to sleep more than very short spurts at a time before he wakes up screaming, and actually getting work done is becoming extremely difficult. Hopefully we can get this fixed quickly!

Please keep us in your prayers that Ethan starts to improve with his lung function, his eating, and his infection control. Also please pray that he starts sleeping well at night and that his pain improves. Also please pray for a couple of our heart friends who are currently in the hospital, and one is really struggling tremendously. Please pray specifically for his family as they are going through such a horrific time.

Eventful week

We had a great few days at home with Ethan making progress and starting to feel a little better each day.

Ethan started his home schooling this week! He loves his teacher and works so much better for her than he did for me! :) His new class all made cards for him and he was so happy to read them all.

Mrs. Wright and Ethan

Cards from his new classmates

Playing legos

Callie ended up with a cast and crutches for her broken ankle. Every two weeks she will have it replaced and we will see if her bone chip that broke off will reattach. If not we will need to consider surgery to repair it, but hopefully the cast will do the trick!

Friday morning Ethan woke up not feeling well. He complained of being hot yet his body felt ice cold. I took his temperature and he was 95.3 degrees. He was lethargic, nauseous and vomited up a drink he tried, and had a heart rate in the 160s. He had a neurology appointment downtown anyway, so I emailed his cardiologist to let him know we would be at the hospital and would stop by for him to check him out.

Too tired and had to rest walking from the bathroom to the living room

 

Scars are healing up well

 

Waiting in cardiology

EKG time

Neurology wasn't able to do too much because of how he was feeling. We discussed how once he is all healed up from his surgery and heart issues we will have to look into a med change for his ADHD. Right now is not the time to address it though.

We went over to cardiology and had him looked at. Unfortunately it was confirmed that he was back in SVT and would have to be admitted. We were sent over to PICU where we attempted Adenosine [sp] medication to get him out of SVT. It worked for a second but then he reverted right back to 162bpm and continued to hold steady there. Since the meds didn't fix the problem he needed to be shocked. The little PICU room was packed with docs during all of this and had all the equipment just in case things didn't go according to plan. Ethan was sedated and shocked, and thankfully his heart rate went to the mid-80s and stayed there! Seeing him get shocked is definitely not something that I ever want to experience again, but I am so grateful that it did the trick without any complications. For the rest of our hospital stay his heart rate was wonderful. We did double his Nadolol dose to hopefully keep his heart from going into SVT again.

Admitted to PICU

Shock pad on his chest and another on his back

 

 

The docs said that his heart could very easily become tachycardic again and it would not surprise them. They said "when", but I will say "if" he becomes tachycardic again we will have to add on a much stronger medication to control his rhythm. This will require a multiple day admission for monitoring. If that drug does not do the trick then we will have to look at a cardiac ablation to try and ablate the cause for the arrhythmias and everything going on with him. A pacemaker will be his final option, but they don't think it will come to that.

Ethan tolerated this stay better than the previous one, but still was definitely NOT happy to be in there. We were so relieved to be released today and able to get back home. He is tired and very sore (the cardioversion - heart shocking - made his chest even more tender than before).

Bloodwork was another huge issue while we were inpatient. He had so many sticks for labs and IV attempts, but his veins kept blowing. He got stuck over 25 times during our admission! His INR (blood thinner level) was way too high at 9! He is supposed to be 2.0-2.5. He also had diminished heart function and renal function at admission, but that was due to the heart beating so fast. A bunch of his labs (potassium, magnesium, etc) were elevated, but they all were corrected before discharge. His liver levels are elevated now, but hopefully as he heals more they will decrease. We were sent home with a Holter monitor to watch his heart for 48 hours. We will turn it in on Wednesday when we go back for our cardiology appointment.

Going home!

Holter monitor

He didn't eat while in the hospital but once we got home he requested pizza, so that is what we did. He ate multiple pieces of cheesy bread and a bite of a piece of pizza! Hopefully we can turn a corner with this food intake issue and he will start eating orally again! We still are waiting for our GI and psych appointments so that will also help with this. At home we sat by a fire for a while before going to bed. Ethan has already woken up many times. I pray that he will relax and start being able to sleep at night. I don't know how long it will take to recover from the hospitalizations (another doc mentioned the ICU psychosis), but it is exhausting so hopefully it is soon!

Finally eating!

Hanging out by the fire

Please pray for healing and that Ethan's heart stays in sinus rhythm and not too fast! Please pray that we get some sleep - he needs it as much as we do! Also please pray for his heart buddies. For some reason everyone seemed to be sick this weekend! Micah and Kolsen are now admitted downtown as well. Please pray for healing for these boys (and a few others heart kids who I didn't mention) and for rest!

Hopefully the rest of the weekend goes much smoother and we can enjoy the holiday!

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!