Settling in at Children’s. We were blessed with a private room because of Apollo’s sleeping issues.
My blog was recently found by a mom seeking information about her daughter’s rare congenital heart defect- a double aortic arch. I was so happy be able to share our experience with a mom going through the same thing. Della had her surgery about two weeks after Apollo. You can read about it here. Della is doing very well post-surgery. She and her parents sent this gift to Apollo in the hospital. It really brightened his day!
The hospital made a huge effort to supply food Apollo could and would eat. Most of the times he wouldn’t touch the food on his tray (um, unseasoned boiled potatoes? unseasoned ground chicken?) but they did hit the mark with scrambled eggs and greasy breakfast sausage.
Watching movies from his crib between tests.
Apollo needed to be hungry for his upper GI and he wanted to nurse (partially because he was scared) so Chuck ended up taking him while I waited in the room. When they returned Chuck described what he had seen in the images…
I wanted to cry as the reality hit me, but I couldn’t decide if I wanted to cry from happiness (they found the problem!) or because the fact that they found something means something is wrong. And then the GI doctor came in, looked me in the eye, and apologized. “I’m sorry to have to tell you this”. Are there words for having a specialist tell you they are truly sorry for the bad news they are giving you about your child? That there is nothing they can do to fix the problem. But you can hope, that years from now, when your son is much, much older, it may be better?
Apollo took this blanket and wrapped it around himself during the swallow study.
It was only a couple of hours later, that Apollo had his swallow study. If I ever questioned the wisdom of a g-tube, the necessity of it was shown clearly on the screen. I truly believe it would be cruel not to give one to Apollo and expect him to continue to force just enough nutrients down his damaged esophagus to maintain, but not to grow.
The report from his feeding evaluations several weeks ago says this: Throughout the session Apollo’s breathing was audible, significantly more so during the meal. The effort to breathe became significantly more demanding during the meal especially when required to bite and chew the food. assessory muscles of upper chest, neck, along with the jaw and head thrust were used to breathe while eating/chewing. He had difficulty coordinating the chewing and maintaining an airway….While running with sister in the hallway, for a short time, his breathing was taxed and very audible. He came back to mom and his coloring was paled, within 30 seconds his cheeks were flushed.
Yes, there is no doubt in my mind this is the right choice.
Are there words to describe what it is like to have a pulmonogist come in and tell you she has called the cardiologist because it looks like this is another errant vessel in his heart? When we went in for our post-surgery visit I specifically asked the cardiologist if his heart was considered “repaired”. And he said yes. Even then it seemed that Apollo’s heart surgery would be some footnote in his childhood…remember when Apollo had a double aortic arch and had it repaired? But it was made abundantly clear to us this time that doctors, hospitals and specialists will be major theme in Apollo’s childhood, if not his adulthood as well.
And I knew, when the cardiologist was the first one to talk to us about the results the CAT scan, that things were not good. How does it feel in that instant? Do you hope they can do open-heart surgery, and have your toddler suffer through that? Or do you hope it can’t be fixed so no surgery is required?
In some strange twist of irony, we recieved this news exactly seven weeks after his heart surgery.
We drank a lot of coffee…and were usually waiting for the in-hospital Starbucks to open at 6 am every morning.
Apollo’s last meal before the bronchoscopies and CAT scan…potato chips!
Trying to keep our parents and kids updated on the procedures and results..it was a wee bit stressful as you can see from Chuck’s eyes.
But there were lighter moments…like looking out the window to see port-a-potties being raised up to the roof every morning as they build an addition onto the hospital.
And then there were sober moments…like seeing this sign posted on Apollo’s crib after his bronchoscopies.
This is Apollo the morning after his bronchoscopies. He returned to the room about 8:30 pm and awoke without too much drama. He wanted to nurse (he hadn’t eaten in 12 hours). Around 10:30 the team of pulmonology residents checked him over and declared him recovering well. Literally five minutes after they left he began shaking and vomited. The nurse took his temperature and he had a fever. She waited ten minutes and it was a degree higher. Then his oxygen desaturated to 84 so she put him on blow-by oxygen and called the team back in. They evaluated Apollo and called in the head pulmonologist. After a couple of hours of drama (including three pulmonologists in our room simply watching Apollo and a swab for the viruses) his fever dropped and he drifted off to sleep.
If there’s anything we’ve learned about Apollo, it’s that he never does anything the “typical” way. In fact, it’s been recommended that he be kept overnight for observation anytime he undergoes a general anesthesia, due to his airway issues.
Friends…Apollo’s doll, the giraffe (which he insists is a zebra) from Della, the crab as a souvenir of his upper GI and the dog he got after his swallow study. He’s going to need a whole bedroom just for the stuffed animals he’s collected from his various medical ventures.
I am still adjusting my mind to the fact I have a very sick little boy. A boy who is put at risk from any respiratory infection. I spent over a year of pushing for tests, insisting something was wrong, and was continually told he was okay, he had allergies, all of his problems were caused by reflux. And now this, being told he will never have a normal airway or esophagus. Being told that we can hope he improves as he gets older. We just don’t know what the future holds, and unfortunately, neither do the doctors.
What a hard reality to have to face. We will continue to keep Apollo, and your entire family in our prayers. I don’t know what it would be like to be in your shoes. But if I ever am, I hope I have the strength and endurance to fight for my child the way you have!
I don’t often comment here, but I have been reading since you announced your pregnancy with Apollo. Just felt that I should post this evening to say that I’m holding you all in my thoughts still x
I have held off replying for a few posts not out of being uncompasionate or too busy but out of lack of words. I so wish I could say something to make you both feel better or put a positive spin on these results but I know as a mum at the moment you feel anything but positive. You both need to digest this latest information and focus your energy towards your beautiful family and getting Apollo stronger. This will take time, nuture your body and spirit.The future may seem daunting but please know that not only is your loyal readers following your journey but so is the lord. There are many people that hold Apollo and your family in their prayers and please dont feel you need to apologise for keeping us all waiting for your next entry as I am sure it would be hard enough getting your head around everything let along putting it to words. I also wish I wasnt on the other side of the globe so i could help out is some way! Take care and god bless xo
such a handsome boy…and he looks perfect in everyother way. it is a heart breaking story. he does have the best parents…that is why God gave him for you to care for!
I am so sorry, but believe it or not there are people who know just what this feels like and know it doesn’t feel like anything good. It’s like you have entered a different dimension and somehow know one else has noticed. It is a different path than you ever wanted but the lord does love you and your family you will be guided through this and even be able to see good in it. Maybe not today. prayers are with you.
I’m so sorry this is your reality now. Sorry to hear medicine has nothing to offer.
I’ve been following your journey with Apollo and eagerly await your posts. I am so sorry that you are dealing with such impossible news. Will be praying for all of you. I pray you all have wisdom for the right decisions at the right time.
Praying for Apollo and your family as you move forward with the G tube and the day to day realization of his situation.
I am so sorry that you’re facing this. 🙁 Poor Apollo. My son wraps his blanket around himself the same way. Such a small, bittersweet attempt to shield himself from what he has to go through.
This little boy is blessed with amazing parents. There’s a reason you’re his mother.
I don’t know what to say except that you are not alone. We are here and we are believing that Apollo’s future is bright. Prayers and encouragements will be steady and forthcoming. With love-
My thoughts and prayers are still with you all. Thankful you have some answers and a new direction, but so sad that you are losing your expectations that things will be better quickly, and simply.
I bet you’re going to see amazing catch-up growth once that G-tube is in. Kids with feeding problems have this incredibly pent-up potential to grow once they’re getting enough nutrition in. Hope that puts a smile on your serious boy’s face!
The giraffe/zebra thing cracks me up every time. Everything in our house was “doggie” for a long time… but ZEBRA?? 🙂
hmm. sigh. praying for you.
My heart aches for you and Apollo. I remember going through a similar realization 21 years ago with my oldest son. It is a realization that I am still working through now and again~ that fact that he will never be normal and completely healed. However, there is a life in between all of the doctors, procedures and hospitals. They do not have to define your son’s childhood. He and you will find a new normal. I am so sorry. We will being praying.
Thanks so much for keeping us updated on Apollo! I have learned so much from you and from your experience – I really appreciate you sharing your difficult journey. As a future doctor, it is really helpful to me to hear (1) stories of times when doctors are just WRONG (“it’s just allergies” – seriously?) and (2) stories about what your doctors did that was helpful or unhelpful. I will be a better healer having read your stories – thank you.
You and Apollo and your whole family are in my thoughts and prayers!
Thank you Mali, I trust that you will always remember Apollo when you are a doctor and treating patients. I’m sure you’ve heard the saying, “When you hear hoofbeats, look for horses, not zebras” well, in Apollo’s case it’s always zebras, and as a result he keeps getting overlooked. Just because a heart defect is really rare, doesn’t mean it doesn’t exist and doesn’t mean the patient isn’t suffering from it.
I am very sorry to read this. As a person with Asthma I have a small idea on how he feels. When I was a child I went to The National Jewish Center ( They are number one in breathing research). If anyone in the states would be able to help in any way it is them. Here is their site: http://www.nationaljewish.org/
Good luck and we’ll keep praying.
What a journey. I’m glad you finally have answers, even if they are both good and bad. At least now you KNOW, and you have a plan of action.
From the sounds of it, a g-tube is the ticket for helping him to grow and thrive without the stress of trying to get food down his compressed and damaged esophagus. Once you feel like you have a handle on managing the g-tube itself, I strongly recommend looking into a blended food diet. Essentially, instead of feeding Apollo the commercialized formula that is used for children (and adults) with g-tubes, you blend up real food and put that through the tube instead. While the commercialized formula is nutritionally balanced, a blended food diet will give him more variety and better nutrition. Some doctors are leery about this (mostly because it is unusual), but I know of several parents online who use a full or partly blended food diet with their g-tube fed children and their doctors are on board.
You can feel free to e-mail me if you want more info and I’ll try to answer questions or point you to someone who can.
Stacy- we will definitely be putting him on a blended food diet. We will start with formula, until we are comfortable with the tube feedings, then we will move on to real, organic food.
We have been using a blenderized diet with my son who is solely g-tube fed. I highly recommend this book (http://www.mealtimenotions.com/HomemadeBlendedFormulaHandbook.htm). It is pricey, but worth every penny with advice on how to start implementing a real food diet, how to get a Vitamix blender at a discount, and examples of other families who use the blenderized diet amongst other useful information. We had a difficult time finding a medical person/dietician who was familiar with a blenderized diet, so this book has been a tremendous help to me. Please feel free to contact me with any questions as your embarking on this journey.
Also, as a side note, my husband and I resisted a g-tube for our son for a long time and I spent hours feeding him every day because we wanted him to eat as normally as possible. However, once the g-tube was in place we have found that everybody is happier, less stressed, and able to have a more normal routine/life. Our son is blossoming in ways we never anticipated and I am very thankful we went through the surgery. We are praying for Apollo and your family.
I’m glad you have a clear direction to head in, without any room for second guessing. But I’m sorry this is the direction.
Renee, I am so sorry to read this update. I truly can’t imagine what you are going through. I will be praying for your family, and specifically for communication between you and Chuck.
My heart aches for you- the unknown is always the hardest! We will continue to lift your family in prayer…for strength, rest, peace and answers!
Oh my goodness, so what are the plans in place for Apollo? A g-tube so he can eat well? Any reconstructive surgery for anything? Or is it all about the wait and see game now (I know its not a game per say)
Praying for all of you guys as you keep enduring this season.
Pss, you can tell your girls its because of THEM I ended up reading the Hunger games triligey (sp) I loved them and they were fantastic reads I even went and saw the movie with my son. Looking forward to the next movie, or who know’s another hunger games book!! I think it would be cool if your kids started their own book clubs for kids their ages my kids are also readers…
The idea is to supplement him with tube feedings. He will continue to eat. They can’t correct his esophagus surgically, possibly because what is pushing it out of place is a major artery in his heart.
I am praying for Apollo and your whole family. God bless.
I am so very sorry for the news about Apollo. Thank you for your transparency in sharing his story and ministering to other families. Only God understands your heart and its ache but He holds you in His hands today.
Just a reader who never comments but has been following your family. I just wanted to say I’m sorry for all this and that I care.
Many, many hugs 😉
Have you ever read Patrice Williams’ blog? She has some great insights and recipes for the g-tube. She’s is the mom of Jonah, who has EB. It’s http://www.patriceandmattwilliams.blogspot.com
Praying for strength and wisdom for you.
Nancy, I’ve been there a few times, but didn’t realize Jonah was tube fed. Thank you!
My heart just broke reading this. I’m so sorry…I can’t even imagine. I’ll continue keeping Apollo and your family in my prayers.
My heart is with you. I had one thought after reading your post. …But God!!!! The doctors are unsure of our boys future…but God has a plan! And he’s holding them every step of the way. Tis so sweet to trust in Jesus! I type with tears in my eyes. Speaking just as much to myself and clinging to the peace that passes all understanding.