Our Journey with Pectus Excavatum: An Unexpected Turn of Events

Hi everyone,

 I'm actually sitting here writing from my 5th day in a hospital room. It's not where we expected to be at nearly two months after his surgery. It is currently August 23, 2018.

.....................................................................................................................................

I never had a chance to finish that post. Things were chaotic, scary, and stressful. My son ended up with a very, VERY bad staff infection. (Which I later found out was the worst infection they have ever seen.) To be honest, I thought he was going to die. I asked every nurse and doctor if I was going to lose my son. Both sides of his rib cage were filled with infection. He was in so much pain that he didn't even know who I was. He would hallucinate, talk to people who weren't there. If I asked him who I was, he couldn't even tell me. It was the scariest thing I ever had to witness and all I wanted to do was take his place, take his pain. 

He had a total of five surgeries in the three weeks he was in the hospital. Over and over they would put him to sleep, drain the infection, and do everything they could to help him get better. He was on constant IV with antibiotics and other medications going through his body. He was on a lot of pain medication, muscle relaxers, medications to help with itching, medication to help him sleep. His precious body was dealing with so much. He was mean, moody, and sometimes hateful, but he never really complained. The nurses all told me that he wouldn't remember the "meanness". He was just in so much pain he didn't really know what he was saying. It was still very hard to see him that way. 

Every day I would see an improvement in him. He lost a lot of weight while there, but by the end of his stay he was regaining his appetite. He was in a much better mood. He'd laugh and joke around with the Dr's and nurses. He had a wound vac which was constantly draining infection and he actually ended up coming home with one. For a few weeks after his hospital stay a nurse would come every few days to change the wound vac and clean his wounds until he was healed enough to take him completely off of it. 

This infection never should have happened. Someone at the hospital messed up and of course they will never admit to that. Doctors from other departments that took care of my boy apologized several times to me that this happened. I can't say I was angry, but I was and still am in disbelief that they could let something like this happen. 

We are two years post surgery and post infection and Christian is doing great! He was on very strong oral antibiotics for over a year and I was taking him weekly to the city to make sure his infection was staying away. He is now off the antibiotics and doing well. Next June we'll be able to have his pectus bars removed! I can't tell you how ready we both are for that! 

Christian is my hero. He has went through so much and has never once complained about it. He never really mentions it. He just goes about life and doesn't look back at any of the bad. Sometimes he'll mention being in the hospital, but it's usually talking about a movie he and I watched, or a type of food he got from the cafeteria. lol It's never anything negative.

I did not write this post to scare anyone. If you, your son, or daughter are getting ready to have this surgery, go for it! Just make sure you express that  you want things done right! Maybe use our experience as a lesson and advocate for your child. 

xxoo,

Emily 

Our Journey with Pectus Excavatum: The Surgery

Hi everyone,

 Christian's surgery was over two weeks ago and I just haven't had time to update the blog about it. I almost feel like life has been a whirlwind since getting home from the hospital. lol

 His surgery was scheduled for 12:00pm and we had to be there at 10:30am to get him checked in so the nurses could start taking all of his vitals, get the IV hooked up, and all the things to prepare for the surgery. 

 We got there, got checked in and he was taken back to the "prep room" right away. They asked lots and lots of questions. He goofed off with the nurses and had everyone cracking up. Including his very nervous Mama. They asked him what he goes by and instead of telling them Christian he told them he'd like to be called OmniLord LOL. I seriously have no idea where he gets these things from.

 After meeting with several Doctors and Nurses and answering about a billion more questions they started his IV. He is terrified of needles and wasn't being very cooperative so they ended up blowing his vein. I wanted to get over to him badly because I knew if I was standing there with him he'd be fine. Finally they let me walk over beside him and he did great. They were able to start the IV and that's when things really started moving quickly. We had to suit up and was able to walk with him back to the surgery room. He made jokes the whole ride back telling the lady who was pushing his bed that he was going to count goats instead of sheep. I kissed him, told him I loved him and made my way back to the waiting room. I was able to hold it all together which surprised me!! I figured I would be a blubbering mess!! 

 We sat in the waiting room for a few minutes and decided to go down to the cafe for coffee and something to eat. Our nerves finally started to settle as we sat in the little courtyard and got a bit of fresh air before heading back upstairs to the waiting room. They told us the surgery would take about two hours but if he needed more bars it would be an additional hour per bar. After sitting there for nearly two hours the receptionist called us up with an update. They said he still had about another hour to go. I kinda thought then that he was getting a third bar. 

 The times seemed to tick by so slowly and finally they called us up one last time to tell us the Dr was going to meet with us in a private room to discuss how the surgery went. I was a nervous wreck!! I was sitting there waiting and waiting for the Dr. to come in and really had no idea what he was going to tell us. Finally he came in and told us the surgery went very well and he did in fact need to put in a third bar. He showed us before and after pictures that he was able to capture from the camera the put inside of him. It was so crazy to see how close my boys chest wall was to his heart and what a difference the bars made. I was almost speechless. All I could say was, "That is amazing. I can't believe it, it's amazing." LOL!! Dr. Garcia said Christian needed about a half hour to wake up fully and be a bit more stable before we could go see him. He told us to go back into the waiting room, enjoy the ambiance and the 100% Columbian Coffee. LOL He's so funny!! 

 After another half hour or so in the waiting room they finally told us we could go back and see him. When we got back there he was crying. He was having a hard time opening his eyes but when he found out I was there he looked right at me and he calmed down so much. That's when I lost it. Seeing my sweet boy lying there, knowing his body just went through something so extreme just broke my heart. I was trying to talk to him to let him know he was doing great, that the surgery was over, that he looked great but the words just couldn't come. Only silent sobs and tears. I rubbed his arm and his hair. He was mumbling something out of his head about Star Wars then he stopped and said, " I don't want to spoil it for you." God love his heart. He started to say, " I want my....." and before he could finish his sentence I asked him what he needed, he looked at me and said, "nevermind". I'm pretty sure he was going to say, "I want my Mommy", but I could be wrong. LOL ( Pretty sure I'm not though. 😛) 

  Dr. Garcia came in and opened up Christian's gown to show us his chest. It was amazing the difference!! I couldn't believe how "normal" he looked. I was just so happy and couldn't stop thanking him for all he did for my boy. Afterwards the transport team came and we walked up to his room. The room we'd be in for the next three days. The rest of the family was able to come in and see him then. He was still very out of it so I'm not sure he knew they were there. Shortly after everyone left and it was just Christian, the nurses, and me for the rest of the night. 

 I will be posting a blog about his recovery in the hospital here shortly so please stay tuned for that!! Thanks for reading!!

Emily

Here are a couple Before and After Pictures!!

Our Journey with Pectus Excavatum: The Family Education Class

Hey guys,

On June 5th we went to Cincinnati Children's Hospital for a Family Education Class to prepare us for the upcoming events. We learned about what will happen during the surgery as well as after the surgery and during his hospital stay. It's a lot y'all. It's a lot for this Mama's heart and mind to process. I don't like getting choked up in front of Christian. I want him to know that, although this is a major surgery, there is nothing to be scared of. I have complete faith in God and the Dr's and I know he will do great as well!! But, during the class they showed a video, which honestly I've watched several times over the last few months, that shows exactly how they do the procedure. I looked over at him and tears filled my eyes. Him, being the kind of boy he is, looked back and me and was laughing. I just can't help it. He's my baby and just the thought that he's going to go through that just tears me up inside!! Ugh....

A week before the surgery he has to start a stool softener. They said with all the pain medication he's going to be on as well as his lack of mobility for a few days he will need something to help him "go". He was thrilled with that news!! LOL He will also be on stool softeners and laxatives for a while afterwards. They also suggested using Zantac so the Advil doesn't mess up his stomach too much.

We learned he will have two bars placed but depending on depth, his height, and what the Dr. sees when he gets inside it will determine if he will need more than two. For each additional bar they place the surgery will take an extra hour. Really hoping he will not need more than two bars. When they remove the bars it will be outpatient procedure. They will cut open the incision, straighten the bars, and pull them out. He will go home from recovery. That's pretty amazing!! He will also be allowed to keep the bars!!

This wasn't part of the "Dr's orders" but I bought some Dial Antibacterial soap for him to start using in the shower every day just to help keep germs down a bit. He also has to use Hibicleanse the night before and morning of his surgery. That will help keep him from getting Staph or other types of skin infections there is a slight risk for. Oh and on a side note, after the class we had to take him to the lab for a Staph swab. Thankfully it came back negative so they will not need to take extra measures to keep him from getting Staph or MRSA. Yay!!

There are a lot of restrictions he will be under as well. He can not bend or twist. He can't lift his arms above 90 degrees. He can't lay on his back or sides to sleep and will need to sleep in the recliner. He also can't lift, push, or pull anything over 5lbs. Even a gallon of milk he is not allowed to lift. All of those restrictions (plus more I can't think of off the top of my head) are for 12 weeks!! That seems like such a long time. But, I think he'll manage and get used to it pretty quickly. There will be a physical therapist as well as an occupational therapist come to his room during his stay to help him do things like sit in chair, walk down the hallway, walk up stairs. He will have to learn how to shower and get himself dressed. So many things we take advantage of every day he will have to learn to do in a whole new way as his body heals.

I know I'm probably forgetting to mention a million things, but like I said, there is a lot of information to process. His surgery is just over a week (June 26, 2018) away. I've already starting writing lists of things I need to pack for him and I during our hospital stay as well as for his two little brothers who will be staying with my parents during that time. If anyone is reading this and has any questions don't hesitate to ask. I will answer as best as I can. Also, if anyone is reading this who has been on this journey I'd love to hear your story, tips, advice, whatever you've got!! Please feel free to email me!! mommyof3boys82@gmail.com

Thanks for reading!!

Emily

Our Journey with Pectus Excavatum: The Date is Set!!

Hi everyone,

   Christian's surgery was approved through our insurance so yesterday I was able to talk with the scheduling lady and set a date for his surgery. It was sort of a crazy thing because I was actually right in the middle of shopping at Hobby Lobby when I got the call. I guess I should have went back out to the car so I could talk to her more freely but she was just giving me the date and time so there really wasn't anything more than that that we needed to discuss. 

   The surgery has been scheduled for June 26,2018. I was hoping to get it a bit earlier, but I wanted the boys to be finished with school first. That was the earliest they could do it for summer time. It also gives us a little more time to prepare and get things together that we may need. I'm going to be calling the Chest Wall Center today and scheduling a Family Education Session. I'm guessing that's where we will go to learn about the surgery and get information about the things that will be going on before, during, and after the procedure. 

   Please continue to pray for my boy. I think he's feeling a bit nervous at times about it. But, he doesn't let on like he is. I talked to him about it the other day and was asking him how he was feeling. He told me he doesn't feel nervous or scared but he's not mad that he has to have surgery. I think he really wants to get his chest fixed. I think it bothers him a lot. Not physically but just knowing his chest looks so different from other people's. I can't wait until this is all over and he can start healing and getting back to normal!! 


Thanks for reading,
Emily

Our Journey with Pectus Excavatum: The Second Tests and Update

Hey guys,

  I'm terrible with this blogging thing. I'm so sorry I haven't updated sooner. If you read the blog post before this you will see that Christian went for his EKG, PFT's, and Allergy Patch Test. Three days later we returned to Children's Hospital for his Cardiac MRI and to have the Allergy Patch Test read. He did great with the MRI. He had to lay very, very still for about 45 minutes. He was able to watch a movie during that time which was so cool. I had no idea how that worked, but he told me he wore a pair of goggles and that is where he could see the movie. But, because he couldn't wear his glasses he said it was blurry. lol I think he was watching Green Lantern and he obviously didn't get to watch the whole thing so we will probably rent it at some point. Unless of course it's on Netflix.... 😛

  After the MRI was finished we went to have the allergy patch read. They were all negative which is awesome!! So, that cleared him for surgery if he in fact needs it. 

  I didn't hear anything from his Dr for about a month afterwards. That was a mistake on my part. I got out the papers they gave me and it said that I needed to call them to find out the results.... Whoops!! So, I called yesterday and got in contact with the Dr's assistant, aka the sweetest lady on earth!! She went over each of his tests and y'all, his numbers are scary!! Now, I'm not exactly sure what all of these numbers mean so please bear with me. She was reading off the MRI results and told me that a normal range is 2.2-2.5 (again, I'm not sure what unit of measurement that is.....) If it's greater than 3.3 that's when they consider it significant enough for surgery.... Christian is at 5.7. Another measurement they took is normal at less than .2, Christian is at .6. They looked at how much they will need to lift his chest. Anything over 10% needs surgery. Christian is at 30%. His sternal torsion is deeper on the right side. The MRI didn't show any compression on his heart but the assistant told me she thinks there is some due to the other tests he had which I will get into soon. His aorta looks normal but his ejection is low. The ejection is how much blood his heart is pumping through his body. Normal is 60-65%. Christian is slightly low at 59%. His z-score was -1.46. She said they do not want it to go below -.7. 😟

  Now for his PFT's. The regular breathing exercises he did all came back normal. But, the exercise test showed low oxygen saturation which could be cardiac compression. His heart isn't able to pump as much oxygen through his veins as it's supposed to which is why the assistant believes there is some cardiac compression. His EKG was normal.

  As of right now they are sending it through the insurance and we should hear something within 1-6 weeks. He may be having surgery within a few months from now. It really is such a worry on this Mama's heart, but I do know God has got this. I trust Him and know He will get my boy through all of this. I'd really appreciate any prayers and words of encouragement for my boy. I'll update more as I can!! Thanks for stopping by and reading!! 

xxoo,
Emily

Our Journey with Pectus Excavatum: The First Tests

Hi everyone,

 It's been a while since I've posted anything about Christian's Pectus. There really hasn't been anything to talk about until this week. Tuesday he went to Cincinnati Children's Hospital to start all of his tests. Y'all, let me first start off by telling you how amazing these people are who work at this hospital. They have so much love and patience for my child. My very talkative, goofy, nervous child. I've noticed that when he's nervous he won't admit it, but he will talk non stop about the most random, weird things. The nurses are so sweet and usually just laugh at him. But, he does have a tendency to talk a little too much during times that he needs to be still. We're still working on that part.

 So, back to Tuesday. We first started out with an EKG. It didn't take long to do and it was a pretty quick appointment. Next we were off to the Pulmonary Function Test. This was by far the hardest thing he had to do that day. He had to do a series of breathing tests. Both standing and sitting inside of a box. It almost looked like a phone booth. Remember those things? lol He did an amazing job!! After those tests were complete they told us to wait in the waiting room and to give him a snack while they got the exercise room ready. After about 15 minutes they came to get us. I was in there with him along with three nurses. The nurse who did his breathing exercises, the exercise nurse, and another nurse who was monitoring his blood pressure. Please forgive me for not remembering the technical terms of these sweet ladies. As you can imagine my brain was going a mile a minute at this point.

 He was hooked up to a machine which monitored his heart. Then they put a mask on him. He was making jokes about looking like Hannibal Lecter ( He really knows nothing about the movie...... LOL). He was also saying it felt like he was beginning the first stages of becoming a super hero. lol I'll post a picture below. After they had everything hooked up and made sure the computers were reading things correctly he got onto an exercise bike. He had to pedal the bike for as long as he could. Until he physically could not do it any more. It started off easy and as time went by the resistance on the pedals would increase as if he were pedaling up a steep hill. They wanted his heart rate to be at 170bpm before he stopped. Several times he would have to take in a deep breath and let it out. (The mask was hooked up to a machine as well to monitor his breathing through the exercise.) They would also check his blood pressure every few minutes. Just as his heart rate hit 170 he said he couldn't pedal any more. He was done. He did amazing!! I was so proud of my boy. Afterwards was the cool off stage. The resistance was gone from the pedals but he had to slowly pedal so his legs wouldn't cramp up. After two minutes of doing that they removed his mask and let him sit in a chair. They monitored his blood pressure until it was back to normal and he had a glass of water.

 After the tests was finished they removed the ace bandages they wrapped around him to keep all the wires in place. The nurse told me they throw them away and asked if I'd have any use for them. I said I didn't think so and Christian spoke up and said he would. LOL Seriously, I think this kid is a hoarder. I'm worried!!!! LOL He asked them to put it in a bio hazard bag. He's such a goober.

 We were finished with the PFT's so next we went to the allergy nurse. Thankfully it was right down the hallway. Actually, it was a shared waiting room so we didn't have to find our way through the hospital again. That's a huge relief. The allergy patches were pretty easy to apply. They put them on his forearm and told me he has to wear them for 48 hours. I will be removing that today at 2:30. I'll try to include a picture if I can remember to take one. 😉 Friday we go back to have the allergy test read as well as a Cardiac MRI. I'm not sure exactly what will happen with that, but I will be sure to update as soon as I can.

 Thank you to everyone who has read this blog post. I really hope that at some point I'll be able to offer advice and support for other families going through this journey. If you have any advice or tips for me please let me know!! I'd love to hear them. xxoo


                                                 Hooked up for Pulmonary Function Test!!

Allergy Patches

Our Journey with Pectus Excavatum

Hello Everyone,

   I know this blog is mainly about food and products I'm reviewing, but I've decided to change things up a bit. At least some of the time. I hope this will help someone as well as help me and my family through this new, unexpected journey. 

  My oldest son, Christian, was recently diagnosed with Pectus Excavatum. Basically what that means is his chest caves in. I took him to the Dr. for another issue and ended up with a referral to Cincinnati Children's Hospital to see a pediatric surgeon. You can imagine the shock we all went through learning this news. I always knew his chest was concave but I never really thought about it being a serious issue. I also didn't know how bad it had gotten. He's very shy about not having a shirt on in front of others so I never really see his chest. He went through a major growth spurt over the summer and stands nearly 6ft tall at just 13 years old! I believe that could be what has caused his pectus to get worse.

  I'm still very new to this. I really don't know much about what all is going to be taking place over the next several months with him. I don't know how they will correct this issue. I don't know if this is affecting his organs. So many " I don't knows" at the moment and it's making this Mama a little anxious. That's why I decided to start blogging about this. Hoping it will help ease our fears, help others who may be going through the same thing, and maybe introduce my family to others who have experienced this as well. Please feel free to reach out to me. I'll do the best I can to help you or if you wish to offer us some help that would be awesome!! 

  In February (2018) Christian will be going back to Children's Hospital for a Cardiac MRI, EKG, Pulmonary Function Test, and an Allergy Test. They are wanting to make sure all of his organs are growing and developing the way they should and aren't being pushed out of the way by his breast bone. They also want to make sure his lungs aren't being compressed. The allergy test is to make sure he's not sensitive to anything they may need to give him during surgery. It's amazing how brave this boy is. I know deep down he's probably nervous, but I talk to him about it often and he tells me he's not afraid. He just really hopes they knock him out if he has to have surgery!! hahahaha God love him. I assured him they would and he would be ok.

  Please check back often for more updates on my boy. I will be posting soon introducing you all to him. He's a pretty amazing kid!! Thanks to everyone who has read this. We would really appreciate the prayers 

Emily