we have a date

Ethan has improved a bit this past week since he increased his inhaler! He has had three episodes since the increase, however they have been much milder than before thankfully!

I spoke back and forth with Dr. G (cardiology) about Ethan's upcoming cath. They wanted to schedule him as soon as possible, but with the new cath doc's schedule and the fact that she is going out of town we wouldn't be able to get in until the last week of June. The problem with that is our family is going out of town a couple days later. I really didn't want to have a problem in the hospital and have to miss the trip. And I also knew that even if things went perfectly in the hospital, Ethan would be too sore and still recovering to travel right after! I convinced them to let us do it when we return. They were able to get us on the schedule for July 8. Ethan is the first and only case of the day. They plan this deliberately since he is such a difficult case and they expect it to be a long procedure (as usual). They plan to go in and check out his stents and any suspect veins to make sure nothing is clotting off or narrowing. If they see a problem they will try to open it up with ballooning or stents. Since his groin access has been gone for years due to too many caths, they are expecting to use his neck access again. We pray this goes well. If not, then we will be looking at liver access. We have not done this yet, but we have been warned to have that as a possibility.

Please pray for Ethan's health and for a successful and smooth procedure, but also for his anxiety and peace about it. He is very scared and does not want to go through this again!

I saw that CHOP helped release a new Berenstain Bears book called Hospital Friends. Ethan absolutely loves Berenstain Bears, so once he reacted so negatively finding out about the cath I ordered it to cheer him up. He was very excited!

Last weekend we were able to celebrate the baby shower for my brother-in-law and his girlfriend! They are expecting a little boy soon and we are all very excited!

We had another exciting event happen this week (this one NOT good). Ethan and Callie were playing cops and Ethan's hands were cuffed behind his back. He stood up and fell forward. Since his hands were behind him, he wasn't able to brace himself and went face first into the floor. I instantly heard hysterical screams from both kids and raced into the room to find blood EVERYWHERE! Blood thinners make injuries so much worse! The kids were terrified from all the blood and it was a mess! I applied pressure for a while and finally got it to slow enough to calm down a bit after around 10 minutes. John came in to help hold pressure on his chin while I hunted down some steristrips. We were able to close his wound enough to where we felt comfortable that he would be okay. His chin and jaw by his ear hurt that first night, but then he felt better by the next morning so I was relieved. We definitely have a new rule in the house of only handcuffs in the front from now on!!

We have only 4 days left of school - and most of those are parties and field days! The kids are very excited to be at the end! :) I will make a post of their school achievements and end of year fun this week!

Finally an update!

I really can't believe it's been so long since my last post! This is going to be a recap of the past few months and photo dump. If you follow me on Facebook you've probably seen most of these pictures! :)

Things have been very calm and good up until the past couple of months. Ethan has been improving in school and is making friends! I'm very happy about that! His class had a field trip last week and I was able to go along as a chaperone. The kids had a great time and it was so good to watch Ethan interact with his friends.

He has been attending therapies every week. He has his anxiety counseling, speech therapy, physical therapy, and occupational therapy. He has been making improvements in all of his therapies, so that is a great thing to see his progression. He will be swapping some of his therapies this summer for special camps that are offered. We are looking to sign him up for a handwriting course and a social skills course that focuses on socialization, speech, sensory issues, and occupational therapy activities in a group setting. I think he can really benefit from these programs this summer!

John and I were able to go on a cruise with my parents and grandparents in February! It was so much fun and it felt amazing to be out of the cold and on the beach! :)

Another thing we participated in was attending Flying Horse Farms last month. It was so much fun and we all had a great time! This camp provides experiences for kids with special needs. They offer weekend family camps (which we attended)  as well as week long summer camps for different diseases (heart week, pulmonology week, cancer week, etc). Specialty doctors volunteer from various hospitals to stay at the camp to make sure the kids have exactly what they need to finally be able to experience camp! It's an amazing place and we are so happy to have discovered it!

 

 

He has been extremely tired these past six months, but overall his health has been good. He has been doing weekly INR blood tests for the past few months since his levels keep dropping. We are in a steady range right now though, so we don't have to return for 3 more weeks!
Then Ethan started having these weird episodes of hard breathing and fatigue. We haven't been able to figure out what triggers these episodes or what these actually are. He will just suddenly out of the blue start breathing really hard and it's basically like he's completely out of breath from just having run a race (even though he's been just sitting around and not exercising or anything). His sats drop to the 40s or 50s and he becomes even more tired than usual. It's extremely concerning to us obviously and we first assumed it was his heart having problems. We contacted our cardiologist and rushed in to have an appointment. He did not have an episode at the appointment and everything looked good, so we kind of were back at square one but feeling a bit better that his heart didn't show more problems. He continued to have these episodes but would recover within around 5 minutes each time, so we just continued on with our normal activities.
Last Friday he had one of these episodes at school and scared the staff! They said he was sitting in class and just started doing his hard breathing, then put his head down on his desk and went to sleep. That evening his sats ranged from 46-53%, so he was put on oxygen. He said he felt better on the oxygen, so he requested to keep it on. Saturday morning his sats were back in the low-mid 50s without oxygen, so back on it went. Saturday afternoon/evening he was doing well without the oxygen and was back up in the 70s. Then Sunday evening his sats dropped again and he wanted oxygen back on. It is weird that he wants it, because he has fought oxygen throughout his entire life! It's very strange to hear him ask for it throughout the day! I guess it really shows how crummy he feels without it, but I'm very glad he realizes that it does make him feel better to have it on!
Because he had such a rough weekend we went to the pediatrician yesterday to see if maybe he had something going on with his lungs. Surprisingly his lungs were still clear! The doctor was not sure what is causing these episodes, but she does have a couple possibilities. The first and best one would be allergies triggering minor asthma attacks. That is what we are going to test out first. We increased the dosage on one of his inhalers and we will see if that helps decrease the episodes this week.
I let Ethan's cardiologist know that things haven't improved, and I also told him what we were doing with the pediatrician. He let me know that he will discuss things with our other cardiologist, but it looks like we need to move forward with the heart catheterization to check out his pulmonary arteries. At our appointment last month (when we rushed in because of these episodes) we weren't able to see his pulmonary artery. We don't know if it's because of the location (it's very hard to see this in him because of his anatomy and the location of it) or if it's completely blocked off and has no blood flow again. The heart cath will check things out and see if we can figure out what's going on in there. This is a very nerve-wracking thing because this will be the first cath ever that will be done by someone other than Dr. G. He has been the only cath doc since Ethan was born, but stopped doing caths this past year unfortunately. I'm definitely nervous about this, but I know Dr. G wouldn't let someone he didn't feel totally comfortable with work on Ethan!
So basically, we're just waiting to see if Ethan's med changes help him out and decrease the frequency of these episodes. We should also hear back from cardiology soon to find out when they want to move forward with the cath.

 

 

Other than this stuff, we've been keeping busy with the end of school activities and spring sports! Callie is constantly at either softball, band, soccer, or church group. She had her Honor Choir concert last month and just had her final spring band concert last night. Field day at school for both kids happens in the next two weeks. Then school is over! I can't believe it's already time for summer vacation!! AAHHH!!! The kids are thrilled to say the least! :)

 

 

Please keep us in your prayers as we try to get to the bottom of Ethan's breathing issues. Hopefully it's nothing serious and he can start feeling better. Please also pray that his overall oxygen sats improve along with his fatigue. It's hard to watch him go out to play and only be able to do a minor activity for a couple minutes before having to stop and rest. We certainly don't want to become completely dependent on his oxygen, so hopefully he'll start feeling better with his breathing very soon! I'll post again once we get a plan figured out with cardiology and as well as seeing if his med change helps things. Thanks!