catching up

Things are going well. I know it's been a little while since my last post. Here's basically what we've been up to lately.

Ethan has his wet cough again. It's been back for about a month and a half, but it seems to be getting worse this past week. :( His sats are still basically where he is normally - that's in the 60s when resting and dropping to the 40s or 50s when moving. He is still able to pop back up to the 60s once he rests though, so the lower numbers aren't TOO terribly concerning.

Last Thursday (a week ago) Callie had her first basketball practice of the season. About 15 minutes before practice began Ethan started complaining about a stomach ache. He was perfectly fine all day before that, so we packed up and went to practice anyway. After about 5 minutes there he started with his shivering lip, shaking all over, and ended up spiking a super high fever (almost 104 F)! I left Callie at practice and rushed Ethan home. Once we walked in the door he raced to the bathroom and started vomiting. He puked everything up for about 2 hours! Oh he was so miserable! His sats were in the 40s then so he went back on oxygen for the night. He really doesn't handle being sick well at all with his oxygen sats. He was finally able to keep some Tylenol down and thankfully that brought down his fever. He fell asleep and slept peacefully all night long. No more fevers! He woke in the morning feeling good, ate a little bit and kept it down, and finally weaned off oxygen around lunchtime. Thankfully he's been feeling good (well except for the cough/congestion) ever since!

Ethan was miserable  :(

We were able to decorate the house for Christmas! I love having all the decorations out and lights up everywhere. :) The kids had a lot of fun decorating the tree, caroling at a nursing home, and making lots of Christmas treats!

Decorating the tree

Decorating cheesecake squares

All finished!

Moose wanted some snacks too!

We also took a trip downtown to see all the Christmas lights, the decorations at the Horseshoe Casino, and looking at the "Christmas Story" house. On our trip we made a pit stop to see the river at night, walk around a little by the docks, and stopped to take a picture by a train crossing sign for Ethan. He was too nervous to stand by himself by the sign, but he happily went for it with Callie and me.

Terrible picture, but he was excited :)

We're doing the whole "on again off again" thing with physical therapy. Callie had her initial 8 weeks approved by insurance. Then for re-approval we ended up waiting a full month of fighting to get insurance to accept it. They said they'll provide 4 more visits then attempt again. *sigh* Ethan finished his initial round as well (5 I think) and now we've been waiting 2.5 weeks so far to get his insurance to approve more. Who knows when that will be, but hopefully it's soon! I know they start losing out on a lot of the benefits of the therapy during this time off, so it's so frustrating! The therapists are all still amazed at how tight Callie's muscles are. They've been working on stretches, spine alignments, pulling techniques, and muscle building but she still has major back muscle spasms (thankfully not terribly painful for her) and the tightness is crazy. Hopefully insurance will get on track and we can keep trying to make improvements with the kids!

Ethan also had an eye doctor appointment this past week. His vision has apparently gotten worse so a new prescription for glasses was written up. We're planning on ordering those (along with the rest of the family) this next week. Maybe this will help out in his paying attention in school and improving his school work. :)

We also had a little malfunction with my car recently. The kids and I were on our way to therapy when a weird noise starting happening and smoke started coming out of the hood. Needless to say we ended up calling a tow truck. Ethan was thrilled! Thankfully it seems to be just an issue with the emissions (maybe a clogged catalytic converter) so the car is working.

He was so excited to watch the tow truck!

Ethan had his last ever preschool Christmas concert! This year he did so great and actually participated up on stage! He was so excited all week looking forward to this!

Ethan's in the front row with the white shirt on. This was during one of the first songs with bells to jingle :)

This video is one of the songs they sang. It's the only one I could upload since they're all on my phone and too big to get off. :( Brilliant me brought the nice camera and even extra batteries so I didn't miss anything. Apparently making sure the memory card would've been a great idea before leaving the house. GRRR!

By the end of the songs though he was getting pretty winded. The second to last song involved some spinning in circles and jumping up and down. He made it through the first round of the song, but by the second round he was coughing and had to stop and rest. He just leaned back against the stage and let the rest of the kids finish up the song. The last song he was still resting for so he mainly observed again. He started singing at the last verse when I think he caught his breath enough. After the songs the kids were released to their parents, so he came to sit with me and rest some more. He was very blue at that point, but after a little sitting and some snacks he was feeling better. :)

snack time

Last but not least, we finally took our family Christmas pictures! Now I have a VERY impatient family when it comes to pictures. Callie and I will sit and do pictures for as long as it takes to get a good one. The boys in the family want "one and done", without even caring what it looks like! This year I was able to get three pictures before everyone quit...so even though it's not perfect at least we got something! The kids also posed for a picture. Here's a preview of how that went...

And yes, Ethan wasn't pleased with the fact we didn't have a train to set up around the tree.
He fixed that by setting up his own track around it :)



LOL - Callie wanted nothing to do with Ethan kisses!



 

We have had a great holiday season so far, and we plan to continue with a lot of fun Christmas activities in the next few weeks! Please continue to keep us in your prayers that we all stay healthy (we're all fighting congestion and Callie has been complaining of a sore throat the past 3 days). I plan on taking her to the Minute Clinic today after school. *sigh* But please keep us in your prayers that we can get healthy and stay home (no hospitals!) this Christmas season! Last Christmas Day was spent with me getting IVs in the ER due to my stomach flu and Ethan getting checked out for swelling in his chest that same day. Not a great Christmas with Callie being the only one not sick! We pray that this year will make up for that! ;) We hope and pray that you all have an amazing Christmas as well - and I'll post again if there's anything exciting before Christmas!

 

 



Falltime and audiology

It's been a while since I've posted, so here's a little update of what we've been up to.

Ethan was very into Halloween this year - at least leading up to the actual trick-or-treating! He was so excited to be a "heart doctor" this year! Halloween was delayed a few days for us due to Hurricane Sandy. We had it the Sunday after Halloween - and still ran into some houses without power! The weather was SO cold though that Ethan only made it through one street before quitting and passing out candy instead! Callie had her eye on the prize though and lasted the entire evening LOL! She got more than enough candy for everyone to share!

 

We were able to go to Boo at the Zoo with our heart support group - Mended Little Hearts! We had a lot of fun and the weather actually held up that night! There were a lot of activities for the kids to enjoy and we all had a great time. :)

Every year his preschool does a Halloween parade and trick-or-treating through the halls. The kids all love it and the parents are able to come and watch! Ethan had so much fun dressing up with all his friends, eating donuts, and showing me his classroom. :)

He showed me some drawings each kid in class made. They were supposed to draw something that described them. Most kids drew things like "my favorite food is strawberries", "I love to play with trucks", or "I have a dog". Ethan's picture is in the top left. It's "My hospital bed". :/ I didn't even know what to say when he showed me that! It was sad to see that that's what he thinks when he is trying to describe himself, but he seemed pleased with his picture so maybe it wasn't altogether a bad thing?! *sigh*

Ethan also brought home his school picture! He was so proud of it :) He walked in the door saying "Mommy's going to be SO excited!" Lol

 

We've also been able to enjoy lots of time outside playing in the leaves and enjoying the weather - well before this last storm that is! He loved the leaf pile this year!

We've also been busy finishing up Callie's fall soccer league. Her team had a pretty rough season this year after we lost our top three scorers from the past few seasons. Definitely an adjustment year! Callie played a lot more offense this year than strictly goalie, so she enjoyed having another aspect of the game. I think she likes offense even more than goalie! Thankfully with the terrible weather by the end of the season they moved her tournament indoors! YAY! The kids did well and had fun. I know she's already looking forward to next season - but of course we have basketball starting up in 2 weeks first!

Callie's in blue in the middle of the field. Terrible picture, but I've been really bad about taking pictures this season!

Ethan's therapy has been going well and he seems to enjoy it. We do have to take a ton of breaks throughout his session because his oxygen levels keep dropping. We are trying to keep it in the 60s, but with each activity he drops to the 50s or 40s. Then we have to take a break, lay down and rest, and wait for his numbers to go back up. He still prefers the stop and rest over just wearing his oxygen for therapy though.

Speech is also going well at school. Speech day is his favorite day of the week! He loves going and doing the activities with his teacher (probably because they use the iPads). He even loves doing his speech homework! :) Hopefully he continues to improve in that area! The regular days of school are another issue though. Usually he's pretty good, but still would rather stay home and play instead of actually going to school. Today I got a call from his teacher after school talking about how he's not wanting to participate and doesn't feel the need to listen to his teachers. Lovely. When the teacher told Ethan that she's writing a note home to me about how he was behaving badly today, he replied "Oh I don't care." She was shocked since he usually goes with the flow at school. :( Needless to say we had a nice talk when he got home. He's in the mindset that all his life needs to be about is playing with his toys and drawing his pictures. He doesn't feel he should be bothered doing things he doesn't want to do if he doesn't feel like it. Well, that's not the way life works. He also knows that we have a conference after school tomorrow, so he had better be on his best behavior tomorrow! Here's his form sent home today - usually he's circled "happy" or "tired". This is his first ever (and hopefully last ever) "mad". I've never had to dread conferences with Callie before. These two kids are SO different from each other! Callie's conferences go like "Oh she has no problems." "I wish I had a whole class of Callies." "She's such a good girl and always does great work" yada yada yada. Not quite the ones I get with Ethan though... That better change! *sigh*

 

We are still working on maintaining his lower INR (thinness of his blood). Right now we are testing weekly - and unfortunately still having to do a full lab draw. We ran out of home test strips a few weeks ago. I found a website that allowed me to buy new strips at about half the cost of the pharmacy (they charge $38 per test strip), so that is a huge relief! I ordered his next box but they are taking a while to show up. We have another test due now, so hopefully the strips will come in today or tomorrow before we have to head back to the lab for another full draw. These past two blood tests have been VERY difficult -- needing to do MANY pokes and wiggles around in his arm to get his vein. It's awful for him. :(

We also had his audiology appointment this past week. It went really well! Ethan failed his hearing test at school in the beginning of the year. We were told to get a follow-up check at his audiologist. This check showed his hearing to be fine - same range as our last check there! YAY! That's a big relief! :)

Other than that we have no news. I'm still waiting to hear what's going to happen cardiology-wise. The last I heard from Dr. G was his plan to have another cath in a couple months. That was almost two months ago. I'm probably going to send him an email and see when we're coming back in - but hopefully it can wait until after all the holidays are done! The docs are usually really good about letting us wait until January or February for another procedure. They know we don't want to miss another Thanksgiving or Christmas being stuck in the hospital!

His burns are also slowly getting better. His butt burn doesn't seem to hurt at all anymore, but there is still a dark scar all across. That is getting a bit smaller, so hopefully it'll continue to improve and eventually go away?! I hope so! His head is starting to show a little bit of hair growth again (basically only visible through a dermatology magnifier). We started a steroid cream this week and will check again in a week to see if it's stimulating the hair growth. Hopefully we can get that growing so he doesn't have a big bald patch on the back of his head forever! :)

We are doing well and all getting over some nasty cold/respiratory bug these past couple weeks. Ethan is back to needing his breathing treatments thanks to this lovely bug. :( He's handling it well and hopefully we'll all continue to improve and he can get his lungs all cleared out completely.

I'll let you know when I hear some cardiology news, but otherwise things are going really well. Thanks for all your continued prayers and support!

Pulmonology appt

Last week was Ethan's pulmonology appointment. It went really well! We started off the appointment doing spirometry tests. These showed how well he was breathing, how much air he can get in and out of his lungs, and tests his lung power. Last time he did terribly for these tests. His percentages were REALLY low and wasn't able to complete a single one even on easy settings. This time however...he totally did amazing! His percentages were so much higher (70%-80% as opposed to 30s) and he was able to complete each test successfully! I was so proud!

Ethan did really well until he got his Albuterol treatment. We had stopped doing these and switched to Xopenex because it makes him absolutely crazy! Well they gave him some and sure enough his behavior was TERRIBLE for the rest of the appointment! Grrrr. At least we were able to do all the tests and get a good report from the doctor anyway. His lungs are sounding MUCH better than before! He needs to continue treatments of Xopenex, his salt water solution, and Tobramycin to continue to keep his lungs healthy. His lungs sound great with only a little crackling. This is a huge improvement to where they were just a month ago! :) Even with all this improvement his oxygen saturations are still only in the 60s. He is mostly in the upper 60s since the cath, but we were definitely hoping for better than that.

Other than that things are going really well. Ethan is doing well in school and improving with his speech therapy. His physical therapy is also going well. He met with them last week for the first time and they said he definitely needs it! We'll go once a week along with Callie and hopefully improve with his motor skills. I'm also considering signing up for an additional speech therapy for him. His apraxia is still pretty rough and unless you know him it's still pretty difficult to understand him when he's talking to you. His words get all jumbled up and in the wrong order when he starts talking. Last year in school he received 2 hours of speech whereas this year he's only getting 1/2 hour a week. I'm still just considering this since I'm not sure how much time we have in our schedules, but we'll see. :)

Ethan LOVES getting packages in the mail - but they always end up being either breathing treatments or Lovenox injections LOL. At least he can enjoy the box for them! :)

 

And apparently you're never too old for the kid carts at Giant Eagle :)

 

 

Ethan's INR was up to 3.0 at today's blood test. The doctors just emailed back adn our new goal is 2-2.5. Now we will decrease his dose to 4.5 mg daily and recheck his blood in a week. :)

 

Thank you for all the prayers, cards, and support we've received once again! You all are so amazing! Please continue to pray for us that Ethan continues to heal and improve. Also please throw in a little prayer for me. I had my wisdom tooth pulled today and so far I'm doing well. I just pray that the pain is kept at a minimum and it heals quickly!

 

Also for those who have not received their heart shirts yet, they are coming soon! I'm sorry for the delay!

 

And Ethan will see dermatology soon for his burns. His head seems to have healed up well but I'm not sure if his hair will regrow. Also his butt is slightly improving but is still tender. Please continue to pray that that heals up quickly. Hopefully the wound care/dermatology can get the scarring to be minimal and the pain to go away! I'll keep you all posted! 

heart walk and some other stuff

Saturday we had the 2012 Congenital Heart Walk! It was a great time and thank you to all who supported us - by either coming to walk with us and/or donating money! We were able to donate a whopping $1015 to fund research to find a cure for congenital heart defects!! The weather held out thankfully and we all really enjoyed ourselves.

                                                        Ethan before the walk started

                                                       Team Ethan's Entourage

                                               John and Ethan showing off their shirt backs

                                                       Elmo and Dora came to visit

       Don't know who this was - Scooby? But Ethan loves dogs anyway :) Apparently John does too...

We had a great time and saw a lot of great friends! We were able to meet up with our favorite nurses, NPs, doctors, and surgeon! We also were able to meet up with some of our great heart buddies, their families, and even met some new ones! It was a great place to connect with new moms and heart kids and invite them to join our Mended Little Hearts (our heart support group) and hopefully connect more with them in the future! :) I wish we were able to spend more time there and actually take pictures with all these people, but unfortunately we had to rush out to Callie's soccer game. Oh well, next year we'll make sure to stay for the entire time!

Later that night we went to haunted houses. We took Callie to her very first ones! I absolutely thought she'd be terrified and not sleep, but amazingly she did great! She wasn't scared and had no problems afterwards! :) Yay! We'll be hitting more this month!

                                                                Callie

                                         Callie and John before the Crazy Clown 3D house

Last week Ethan had a cardiology appointment, echo, blood draws, and supposedly a meeting with wound care. We had blood work in the middle of the week and it was VERY rough. They had to poke around in his arm 7 times to get the blood to come out! He never cries (he just whines and gets anxious) during his blood work anymore, but this time he was in tears and crying begging them to stop hurting him. I was almost in tears trying to convince him that it's okay and it's almost over. :'( That lab work came back showing that his INR (the thinness of his blood) was way too high - I think it was 9 something. His normal range was 3.0 to 3.5. The docs called and I let them know we were heading in anyway due to his appointments. They said "Don't get in a car accident, but get down here" LOL. We showed up and did another round of blood work (this one went much better!). The results for this test showed his INR at only 4.0! Big relief. That's still high, but much better than 9! We held his coumadin for the weekend and did another check on Sunday. That showed 1.2 (now too low) so we restarted the coumadin and will check at the end of the week. :/ Hopefully this gets under control and we are in a comfortable range quickly!

                           The lab gave Ethan lots of goodies after having such a rough blood draw

Back to the cardiology appointment. His oxygen saturations were still normal for him. He was at 68% in the office. We were hoping for better after his last cath, but it seems to be still around where we were before. Maybe it can improve as he continues to heal though.

His echo looked great - the artery is still open and clear with plenty of bloodflow! :) Dr. Golden (our cath doc) brought up some things he has been thinking about since the cath. He thinks that by putting in a covered stent (like the one that we used in this last cath) down in the pulmonary artery that keeps clotting off, the artery won't be able to close in on itself anymore! He thinks that if it works as he plans this could potentially significantly cut back on the number of caths that we need! We can really push the time between caths out - which would be nice since we're doing every couple months right now! He needs to discuss it with Dr. Zahka (our other cardiologist) before planning much more, but he said "Don't kill me, but I'd like to do this in the next couple months." *gulp* Really?!

                                             Actually cheerful for his echo! :)

                               Couldn't pry his eyes off the TV long enough to take a picture :)

And lastly we addressed the burns. Wound care didn't show up, but Dr. Golden and Dr. Stewart (our surgeon) checked out his butt burn to see how it was healing. Dr. G mentioned that if it doesn't start healing up better we should see dermatology and plastic surgery to get it taken care of. He said he has some dermatologists who owe him so we can get in right away. I also have a dermatologist we can get into right away, so we'll see how things go. :) Right mom? His butt still looks pretty much the same (maybe a little better) but is starting to get less tender. It still hurts him when touched but it's not nearly as bad as before! We also got his hair cut. When we did that we found that the clump of blood that was in his hair at the hospital (the one we thought was dried blood from his bleeding incident) was really a burn. :( Yes another one. He now has a bald patch on the back of his head. We're going to get this checked out and hopefully we can get hair to grow back there! His ear burn on the other hand has healed pretty well. :) Thankfully that doesn't seem to have scarred and doesn't hurt him anymore.

                                                             Bald patch from the side

                                                    Bald patch from the back

Lastly, the kids started physical therapy and are doing well. Hopefully this can get Ethan up to where he should be and he loves it so far! :) And the therapists confirmed that he is a lefty kicker, batter, and golfer but a mixed thrower and a righty writer! He just can't make up his mind LOL!

I'll keep you all posted when I get more info on the cath and his next INR results. Please keep us in your prayers for continued healing and everything! We have a pulmonology appointment tomorrow, so hopefully that will go well!

WE ARE HOME!!

I'm so excited to say this - we're home! We got discharged right after dinner today and I couldn't be happier! I just want to recap all that went on today.

We had a very long night last night. Ethan never sleeps in the hospital, so he was up about every 20 minutes crying, trying to get comfortable, and expressing how scared he was. Unfortunately the little ledge that they have where the parent "sleeps" is behind the patient bed. Because of this layout he wasn't able to see me. I kept having to sit next to his bed until he fell asleep, then sneak over to my "bed" to sleep until he woke up and noticed I was gone. This usually lasted about 15-20 minutes at a time. :( This morning he was exhausted and cranky. He was done with the hospital by this point and in quite a bit of pain. We battled small fevers yesterday and today, but Tylenol seemed to take care of these each time they popped up.

We had a few visitors come in to see us. It was so great to see everyone during this trip, so thanks so much to those who were able to come and visit, come and pray, and just stop by to take my mind off things! It was also great to see our old docs and nurses that we haven't seen in a while. We don't end up in PICU every time, so we tend to go spans of time between seeing some of our buddies. I even was able to meet up with one of Callie's school friend's mom who works there in PICU. And Dr. Zahka brought in another batch of cookies for us today. :) He had hives and just took some Benadryl so he didn't stay too long, but it was still really great to see him.

Ethan finally got out of bed late this morning. We made a very slow and unsteady walk to the fish tank at the end of the hall. There we saw Dr. Golden (our amazing cath doctor) and stopped for a photo and chat. :) He was surprised and not that pleased with how "out of it" Ethan still was. He had a lot of meds and apparently it was still in his system. He seemed dizzy and extremely unsteady. He basically just wobbled, and tilted, and had to be helped to walk slowly and not fall over. By the end of our first walk he improved a little bit so that gave me hope that he would continue to get stronger through the day with practice.

                                            First trip out of bed - went to see fishies

                                              Ethan and Dr. Golden by the fish tank

After that trip we decided to head down to the playroom. Once Ethan realized he was allowed out of bed, the last place he wanted to be was back in his room! We headed downstairs (in a wheelchair this time) to visit with the security guards, check out the fishtanks, and play in the playroom. By the end of his playroom visit he was definitely improving with his stability (even though he was still pretty crazy unsteady).

                                               By the big fish tank downstairs

                                                 So happy he made it to the playroom!

We had to head back to the room since PICU didn't want us gone long away from their monitoring. Since he wasn't happy with that I surprised him with a Lego kit we picked up for his surgery. Thankfully it did the trick for a while, cheered him up, and kept him occupied for a while. :)

    Ethan did not feel like eating. at all. He didn't eat since Sunday evening, but thankfully ate immediately when he walked in the door of our house. :)

                                                    He was so excited for his legos!

                                                 Got the dump truck all put together :)

We waited on wound care since morning. We needed them to come and inspect the sore on his butt. When they checked him out they realized it was actually a chemical burn - not a pressure wound. They think this was caused by the betadyne or whatever antiseptic solution they used during surgery pooling underneath him on the cath table. He lays on a heated air pad, so the heat under him basically cooked the solution and caused a chemical burn on him. :( He also has one on his ear, but that doesn't seem to bother him that much. The burn on his butt is causing him a lot of pain though! It seems to be the only thing that is hurting him. We're just going to have to keep putting an aloe cream on it twice a day to get it to heal. We'll see wound care again during our cardiology appointment next week.

He'll probably kill me someday for posting his butt on the internet, but here you can see the burn he has. It is so tender, but hopefully with enough cream he'll be feeling better soon.

We got news that we would be moved to the regular floor (one step closer to going home). We had to wait for a room to open up which took a few hours, but finally made our way over to the other room. Once we got there and settled into bed we were sent downstairs to radiology for an ultrasound of his neck. They wanted to make sure there was no bleeding that we couldn't just see by looking at him. Thankfully the preliminary results came back showing no bleeding, so we were told we could leave! YAY!

                                                          In the car almost home! :)

We had to resume Lovenox injections (much to our dismay) tonight. He'll do this twice a day again until Saturday. Saturday he'll have a blood draw at the lab to check his INR. If his INR shows a high enough level then we can stop and only continue on his aspirin and coumadin. If it's not high enough by then, we'll have to continue the shots on top of the other 2 meds until we get a good lab test. :( Hopefully Saturday's tests will let us stop the shots!

We're having to keep an extremely close eye on him since he's still very unsteady and we need to make sure there are no more bleeding issues. They're concerned about that obviously, and we need to make sure there's absolutely nothing causing his neck to bleed again. Please continue to pray for his healing and safety. Thank you all so much for all of your support and prayers. It means so much to us and we appreciate it so much!