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!

extubation!

Well the doctor came in this afternoon and changed up that whole "rest through the night" plan. :) They stopped his sedation medicine around 2:30pm. He finally woke up enough around 4:30pm to take out the breathing tube! It was successful and there was no bleeding! Thank you Lord! So far he has been stable. He's needed oxygen through a nasal cannula. He's still very tired, but he's been up for a couple hours snacking on his precious ice chips and eating popsicles. He has had a small fever (around 101F) throughout the evening so they're about to give him another round of Tylenol. Hopefully that'll take care of the fever and make him comfortable enough to get a good night's sleep. His catheter is bothering him a lot, but they can't take it out yet. He keeps complaining "my weenie hurts". :( He's getting a dose of lasix now which will help him pee. He needed this because he's a bit swollen and retaining fluid. One dose should do the trick though so hopefully they can get that catheter out in the morning. I know he'll be very happy about that! He also has a pressure sore on his butt. It probably was from how long he was in the cath lab yesterday. We're treating that now with keeping him on his side and lots of cream. Hopefully it heals up quickly! Other than that he's doing well. He's got a very sore throat, but he seems to be handling it pretty well. Hopefully he can get a good sleep tonight and tomorrow start moving around and eating/drinking. Once he's able to eat/drink and move around without bleeding or any complications we'll be able to talk about going home!

He finally gave me a smile this evening! It made me so happy :) Haven't seen a smile since yesterday morning. He was asking for another round of popsicles. I told him we should wait so his belly doesn't get upset. He tilted his head and said "My belly says 'I want some food.'" :) Then he smiled and gave me a little chuckle. Made my night :) Hopefully plenty more smiles will come tomorrow as he starts feeling better!

Have I mentioned how much we love our cardiologist? Dr. Z bakes us homemade cookies for our appointments and hospitalizations. He said he was too stressed out at the cath to stay till the end, so he went home and baked cookies while watching the cath on his computer. :) He brought these in for us today - and they are SOOO good! M&Ms, Rolo, double chocolate chunk, and chocolate chip - YUM! Love that man!

                                              Ethan sleeping before being extubated.

                                           Breathing tube is finally out!! YAY!

                                Still sleepy from all the drugs, but he's loving his popsicles :)

                                                              Yum yum yum :)

PICU

Last night Ethan was finally settled in PICU around 11:30pm. He had a decent night and was stable with no bleeding issues. He was sedated all night but kept waking up moving and gagging on his breathing tube about every half hour. Apparently he's so used to all the drugs that the normal amounts of sedation and paralytics just don't keep him down. :/ He's restrained, sedated, and paralyzed now with lots of morphine to keep him calm and pain-free. Hopefully that'll do the trick.

                                          Ethan after he got all cleaned up from bleeding.

                                                                Sleeping again.

This morning we started weaning down on the sedatives. The hope was to get him to wake up, pull the breathing tube, and get him on the path to going home tonight. Unfortunately with a little bit of moving this morning he started bleeding everywhere! It didn't last long but he ended up soaking half his bed with blood from his neck site. The docs got it to stop completely within 15 minutes. They then put new pressure bandages on, cleaned him up a bit, and re-sedated and paralyzed him. Rounds just happened and it sounds like Ethan will be sedated through the day and night again. We'll attempt Propofol and extubation in the morning. Of course this might change if things go perfectly this morning/afternoon. They might consider extubation tonight, but it's not likely.

Dr. Stewart came by when the bleeding stopped and was happy that it seemed to be under control. He doesn't feel that great about doing the cut-down procedure (cutting around his neck and stitching the vein). He's just too concerned that we'll end up losing our only access site for future caths. If we lose this neck site his only other access point is trans-hepatic. That means we'll have to go through his liver for all his future caths! This would be much harder on him than the groin and neck that we do now. Please pray that they can keep the blood stopped and we don't have to resort to anything else!

He's breathing really fast right now. That seems to be due to the fact that he's being so resistant to the sedatives. Once we get back to the level of drugs that he needs hopefully his breathing will slow and he'll stay calm. They think he's most likely anxious and that's causing the fast breathing. Other than that he is doing well. He's stable, his sats are in the low 80s, and he's pinker than I've seen in a LONG time (even though he's on the ventilator). Please pray that he can rest and recover today with no more bleeding issues. I'll keep you all updated as I get info. Thanks so much for the prayers and support! :)

still in the OR

Ethan's cath ended a couple hours ago, but he's still back in the OR. The docs are not able to get his blood to clot at his incision site on his neck. They had to use such a large catheter that it seems to be just too much for him to stop bleeding right now. We pray that they can get it to stop quickly, but if it's not done by 10pm they will have to go back to surgery. Dr. Stewart (his surgeon) will end up making a small cut on his neck to expose his vein, then he will suture it to stop the bleeding. Please keep him in your prayers that the bleeding stops quickly! I know he's stable right now and so that's good. His heart is still leaking slightly around the stents, but we pray that that will stop soon too. It's not concerning at this point. We'll definitely keep monitoring it with chest x-rays and echos to see if the bleeding is pooling anywhere or increasing though. He's going to stay intubated for the night and we'll stay here in PICU. Hopefully we'll still be able to go home tomorrow as planned, but we'll jsut wait and see how the night/day progresses. Please pray that his bleeding stops and we can get to our room. Thank you so much for all your prayers and support today! We appreciate it more than you know! I'll post again once we hear something -- and hopefully I'll have some pictures of us in our room soon!

cath news

We just got some "not so good" news from the cath lab. The conduit cracked around the first stent so there is some bleeding. They've been watching it for the past 45 minutes and even though it's mild it has increased a bit. They are going to try and place a special stent that's wrapped to stop the bleeding. Please pray that this works. If it doesn't work we'll potentially have to deal with open heart surgery after all. :( Please please please pray for Ethan right now that they can stop this bleeding and get everything under control. He said other than that Ethan is doing okay. His pressures and rhythm and everything seem to be under control right now. I'll update when we hear something new.