Sorry to leave you all hanging, and thank you for your prayers and kind comments. Things just got too hectic, trying to keep a toddler happy and safe in the hospital for a week. We have our answers…some good and some bad. I think I’ll break this off into two posts, one with mainly the information about his health, and the other with lots of photos and narrative.
Apollo had many, many happy moments between tests.
I believe I left off talking about the results of the upper GI and swallow study. Both showed very clearly an indentation in his esophagus. When Apollo eats, food slows down and gets stuck in the esophagus. When the GI doctor came in to talk to us, I asked (quite naturally, I thought) what he could do to fix it. He stared for a moment, and then said, “Nothing. We can’t do anything to fix this. Now, we can hope, that over time, as he gets bigger, the esophagus will straighten itself out now that it is free of the double aortic arch. But this is going to take years”.
{Here is a link talking about compression of the esophagus from a double aortic arch…these are of course not images of Apollo’s esophagus, but should give you an idea of what we are talking about.}
And even worse, the pulmonologist suspected that the indentation was caused by another misplaced vessel from the heart.
Wednesday, Apollo had a rigid bronchoscopy done by an ENT, a flexible bronchoscopy performed by a pumonologist and a CAT scan, all while under a general anesthetic.
The rigid bronchoscopy found the following:
* a “multi-layer airway obstruction”
* an abnormal trachea where the double aortic arch was.
* a portion of his trachea is oblong shaped instead of round (think of stepping on a slinky). These will always be shaped like this, but as he grows, his trachea will grow and he should see some improvement in breathing.
* he has laryngomalacia (floppy larynx or voice box). The ENT said as soon as he had Apollo sedated and lying down, he made the exact same noise that I had recorded.
After sitting and listening to all the things wrong with his airway, we were a bit apprehensive about what we were about to learn from the pulmonologist…thankfully all she had to add was slight tracheamalacia where the double aortic arch was. She agreed with everything the ENT found, but below the level of his double aortic arch, everything looks fine.
* As far as the CAT scan, it is indeed vessel from his funky aorta pushing against the esophagus. Surgery to correct this is occasionally done on adults, but it is very risky and in Apollo’s case, the vessel would have to be moved to a less-than-ideal spot, which could lead it to kink. In short, there is nothing that can be done about it. The cardiologist said there are NO long-term studies on kids with these. With this misplaced vessel, Apollo just took his very rare heart defect, and made it ever more rare. The cardiologist did find one study, which showed most patients with this are doing very well at one year post-diagnosis.
So where does this leave us? Basically, he has a narrow, compromised airway, which cannot be repaired surgically. He has a narrowing in his esophagus, which also cannot be corrected. The consensus of the ENT, pulmonologist and cardiologist are that the only thing that will help Apollo is to get bigger physically. Of course, lack of growth is what sent us to the doctors in the first place. He simply can’t pass enough calories down his damaged esophagus to grow adequately. Which means he can’t improve.
It was the recommendation of the doctors and speech therapists that Apollo get a g-tube to help him take in enough calories to grow. And so that is what we have decided to do. We will head back down to Seattle in the next week or two to have the tube surgically placed. Apollo will continue to eat just like he is now, but we will finally be able to get enough calories in him to hopefully help him grow and heal.
To be continued…
Wow, Renee, what a week you must have had. How do you feel now? Are you mostly relieved that you know what is wrong? I will keep praying for Apollo and I am sure it will get better as he grows, I have seen it in other cases where there was a problem with the trachea or the oesophagus. Please, if there is anything we as blog readers can do for you to help do shout out. Julia
Renee! Praise God! You have found out what is causing all this. You have a solution for how to get calories into Apollo, and therefor how to get him as big as possible, to hopefully solve the situation.
You have an action plan.
This all sounds like good news to me. You can help your baby grow. What a blessing these doctors will be to your family.
Renee, et al;
I just wanted to recognize and honor what a wonderful advocate you have been for Apollo, doing such diligence and and having doggedness to make sure that his needs were met, that answers were found and that the medical system did not fail him. This is no small feat! I honor all that you have done to get him the best care possible.
Sharon
Wow. You all must be on a roller-coaster of emotions about all of this. Well-done for battling to get all this information. May this new plan be the beginning of a new chapter of growth and healing for this darling, brave little boy. With love, The Smartts
Oh Renee..i am almost speechless…I know it must be a VERY hard decision to get a G tube inserted into a 22 month old…I look at Noah who is about the same size ( but in excellent health)It is so hard to look at him and know that Apollo being so small may be keeping him from getting better …where in my house I relish in a smaller child as I can carry him easier..he can’t reach as much(although he likes to climb)….I had a terrible gut feeling a long time ago and think I said it that this would probably be a LONG journey…..these medical complicated things usually are not so cut and dry.
I do pray that beefing Apollo up with some liquid nutrition will hopefully cause a growth spurt and thus his organs will all grow. Including his trachea and esophagus.
Wow….to think if you didn’t do anything…you wouldn’t know all this. I know you have heard it a million times but he is Blessed to have you and Chuck.
I can’t imagine how the rest of the family is doing. I hope well. I know the fact my husband is going back after paternity leave of 2 months has my sp needs son in turmoil. I can’t imagine soemthing like Apollo’s situation in our home. Most can’t imagine our days filled with rage from an ADHD/ODD child…wow…so much to say..I pray for you and everyone in your family. I really do!
Oh, Renee! I can’t imagine how emotionally difficult this has all been. I’m a medical student and a mother and I have been praying fervently for Apollo. I’m so terribly sorry there’s no way to “fix” these anatomical variations that are making Apollo’s life so challenging, but I’m glad you’ve advocated for him, pushed the doctors so hard, and found a way to get him the nutrition he needs to grow. You guys are in my prayers and I can’t wait to hear about Apollo’s amazing growth and improvement over the next few years. Much love!
I’m so so glad for answers for you all, but so so sorry for the complications inside Apollo’s little body.
So thankful you have answers. Praying for the upcoming gtube.
Does any reason exist for them not doing a supraglottoplasty for the laryngomalacia?
So relieved to hear that you got answers and that he will finally be getting the nutrition he needs!
For a g-tube many people buy things like http://mybuttonbuddies.com/ to help with irritation and also http://www.tummytunnels.com/ for access during night-time feedings. They work great but you can easily make them yourself. The sites can give you a good visual reference though.
I am sure a g-tube is hard for you to have to have put in but maybe it will help him grow. I am sure it will. He will surely feel better then! thanks for the update, praying for you guys!
Praying for God’s complete healing, praying for your whole family to be lifted up to God for comfort, peace and wisdom as you deal with Apollo.
I am praying for you all. How are the rest of the kids doing? A gtube will be a blessing I believe. There are different kinds, and or daughter had several are favorite was flush against her belly and could be removed and replaced easily, a must in our case because she had low immune system and easily develop infections. You will be amazed at how easily you will become accustomed to what you need to do. Sometimes the Lord stretches us in ways we don’t want to go. I know this is so hard but you guys are doing great. I know it may not feel like great . So many prayers and thoughts for you and your family. Thank you for allowing us to pray for you and for sharing. I am sorry it is so hard but even answers you don’t want are better than no answer at all.
oh WOW, WOW, WOW!!! while i am so disappointed for you guys that there is a prolonged issue with Apollo, i am thrilled for you guys that there is a solution that will help him grow & get stronger. We will continue to pray.
Wendy
I don’t understand how they can put a stent in a tiny artery to open it up, but not a similar thing in a trachea to open it up. I know, I am no anatomist, but you would think it was fixable. Poor poppet. I’m glad you have answers, and vindication. Deep down you must feel a wee bit like going back to several drs and saying “See??!!! I told you so!”
Oh, what a journey you’ve been on — I can only imagine how exhausted you all must be! Like the other commenters, I’m glad you’ve finally received more thorough answers on what Apollo is dealing with, and that there is a solution that can be applied right now to help him start improving. You all will continue to be in my prayers.
That is wonderful that you finally have answers…real answers…and a plan of action. I am sorry that it has to be a wait and see approach but at least it’s not the guessing game that was going on before. I am also glad to hear that this didn’t seem to be as traumatic for Apollo. I will continue to keep you all in my prayers for the road ahead.
I’m so, so, so, so glad you finally have answers! I know it’s not a good diagnosis but I will be praying with you that as Apollo gets more calories and grows that he will become more and more healthy!
Man…it stinks to have the baby with the unheard of condition. I’m so glad we can trust in the name of the Lord Maker of Heaven and earth. Bless you as you minister to “the least of these” in the name of Jesus! I can only imagine the relief you will have to not have to fight him to eat any more. That is just exhausting.