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.

update

Ethan is stable right now. They are putting in a second stent in the conduit. The first stent became too short when they opened it up. This will give them the length that they need in that area. He had a couple arrhythmias throughout the cath, but they were all able to be stopped by manipulating the catheter. He has needed no medication to stop them this time! Thankfully things seem to be going well and he seems to be tolerating things so far. Please continue to pray that they get the placement that they need and that everything continues to go well! Thanks and I'll update again once I hear something. :)

Ethan's in the cath lab

Ethan is currently in the cath lab. He did so well in pre-op this morning so that was a huge relief! He was calm and happy with his Versed instead of the "angry drunk" that he was in June. Child Life came in and played with him for a while. She colored pictures and drew ambulances with him. Also they dressed up his stuffed puppy into a doctor's outfit complete with a nametag that Ethan filled out. :) He resisted a little bit when he was getting the gas in the OR, but overall had no problems. They just upped the gas until he passed out.

                                           John and Ethan waiting to go back to pre-op :)

                                      Ethan and "Dr. Puppy" after he took his Versed :)

Dr. Golden is planning the procedure to clear out his left pulmonary artery ( the areas that keep clotting). He's also going to scope around and make sure everything looks clear in the other collaterals. Then he'll put the stent in the conduit. That's the tough part, but he'll have two other interventionists in there for the procedure.

I'll keep you posted as the updates come in from the OR. They said to plan for all day as usual. Please keep Ethan in your prayers today that everything goes well and his recovery is easy. They're using a catheter two sizes larger than they are used to in order to accomodate the stent. Thanks for all your prayers and support - I'll keep you updated!

I just got an update and Ethan is doing well so far. No problems and no arrhythmias. He's sleeping comfortably and they're taking pictures and getting pressures. Then they will start doing some intervention - ballooning and cleaning things out. I'll get another update in about an hour.

Congenital Heart Walk 2012

The Congenital Heart Walk is coming up October 6th! Last year we participated and raised a lot of money for research to find a cure for kids like Ethan! We did the short walk and enjoy all the activities afterwards. This year is expected to be even bigger and lots of fun! Please join us and support this much needed research! The walk is happening at Wade Oval Park in Cleveland, Ohio.

If you can't make it but still want to donate, please go to our fundraising website, click join our team, and make a donation! Or you can send me a check/money and we can have that amount doubled through my father's company!

Here's the link to our team's webpage:
http://congenitalheartwalk.kintera.org/faf/login/teamPageEdit.asp?ievent=1027473&lis=0&kntae1027473=F6748DF89D224089BDE7BFB9706A7472&page=view

We are having team shirts made again this year. We are selling them for $15 each for youth sizes through XL. Each additional "X" after that is an extra $1. Please let me know if you'd like a shirt and what size you need! I'm going to place the order soon so we can get these shirts made and available before the walk. You can also order a shirt even if you can't make it to the walk! :)

Front of shirt design (on gray shirt):

Back of shirt design (on gray shirt):

 

Please contact me about any donations or shirt orders you'd like. You can either leave a comment at the end of this blog, comment on carepages, or email me at jkbradley44@gmail.com. Thank you so much for supporting this! :)

Healthwise Ethan's been pretty good. We're still doing breathing treatments trying to make his lungs as clear as possible. I think he's improving lung-wise so that's definitely good news! Unfortunately he's still very blue and his energy level is decreasing. It's been especially apparent lately that any activity he does just leaves him really out of breath and blue. He needs to take a lot of rests and winds up being carried around everywhere. We'll be resuming his Lovenox injections this weekend and stopping his Coumadin since next Monday is his heart cath. Please continue to keep us in your prayers as this will be an extremely difficult and risky cath. I'm nervous about it, but I know God is watching out for us! We have amazing doctors and I trust that everything will go smoothly. :) Your prayers though are VERY appreciated though!

We also are restarting his occupational and physical therapies. His first OT evaluation is Thursday. He seems to just be behind with some things like climbing, stairs, and some basic things you notice other kids his age doing on the playground but he can't yet. He also needs help on some more occupational areas like dressing. Hopefully these therapies will help bring him up to speed. :) Callie also started physical therapy this week for her back and leg muscles. She had injured her back years ago on the stairs, then tightened up her muscles to avoid it hurting and ended up so tight she can't even bend over and touch her toes. *sigh* Now she'll be going to PT to help loosen her up again.

I hope to hear from you about the heart walk! Thanks everyone!