Tag Archives: congential heart defect

Toddlers and TV

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011113_9170 blog

First he played nicely with his toys…apollo toys

His little animals chatting about light sabers and coffee…011113_9176 blogThen he got busy moving each and every toy off the shelf…011113_9178 bw blogUntil he realized his ultimate goal: conquering the shelf itself.

I received an interesting question from a blog reader a while back. She asked if Apollo, because he’s  the youngest of fourteen, watches more TV and movies than the other children did at this age. The question (while innocent enough) made me chuckle. The truth is, the other kids watch more movies because of Apollo. Let me explain.

Back when Apollo had his first heart surgery he was 20 months old. Recovery was rough. We were sent home on day three with just a baby-sized dose Vicoden…and he was in pain all the time. We borrowed a Winnie the Pooh movie from a friend, and that was more or less Apollo’s introduction to movies. He watched that movie two or three times a day in the first weeks post surgery. Chuck or I or one of the older children would sit and rock him in our glider for hours…and during the day I often had to have the younger children watching with me (rather than running around unsupervised upstairs). They didn’t watch every day, but more frequently than I liked.

After the surgery Apollo still couldn’t eat well, he was in pain and barely sleeping. Six weeks later he was back in the hospital and one week after that he had his g-tube placed. In the beginning it took an hour per feeding four times a day. He was in constant pain for three weeks after that surgery (and still recovering from the heart surgery). After a few weeks with the g-tube Chuck and I bought a portable DVD player for Apollo so he could watch movies on the couch (in our main living area) while he was fed.  We were horrified by our own actions. It went so against our parenting style. But we had a sick child with a heart defect and he was recovering from major surgery and had to sit still for an hour four times a day. We were just surviving.

Summer came and his health was declining…he had very little stamina and would just sit…we limited movies to feeding time but if we went for a walk or to a park or swimming, he would be wiped out for the rest of the day and just lie on the couch. He just didn’t have enough energy to be active. This is when I began questioning his cardiologist and trying to get to the bottom of his continued health issues.

Apollo had his second  heart surgery in Houston Texas October 30, 2012. Recovery involved, naturally, plenty of movies. We had gotten his feeding time down to approximately 15 minutes prior to this (imagine a toddler drinking sippy cup or bottle of formula). After his surgery he developed chylothorax and couldn’t  tolerate the special milk based formula. When we were discharged from the hospital we were back to hour-long feedings, this time with stomach cramping and vomiting. His ability to sit and watch a movie was a real blessing.

As soon as we were home (with permission from his doctor and under the direction of a dietician) we began blending food adding in the fats and oil he could tolerate along with vitamins, brewer’s yeast and probiotics. We put this through his tube instead of the special chylothorax formula and his vomiting stopped immediately.  Six weeks after surgery we began the process of adding normal fats back in. Apollo is now taking his soy based formula through his g-tube 2-3 times per day (down from four!) and it is back to only taking about 15 minutes per feeding. Once he started getting high fat formula again we noticed him perking up and feeling better. Now that he getting a large percentage of his calories though his high fat formula he is feeling better than he ever has. I think the soy formula has  much more staying power that the foods we were blending.

Now, two and a half months after his second heart surgery, he often goes days without asking to watch a movie. All on his own he has lost interest. He is feeling so good that he would rather be active and play then parked on the couch. And this change thrills me! I hated his daily movie watching. I do believe it is detrimental to a toddler’s brain development. But his heart defect was detrimental to his overall physical develpment. Nothing was ideal.

So there you have it. My children logged far more hours watching movies in 2012 than I would care to admit. But Apollo is now healthier than he’s ever been and he is becoming a much more typical active two-year old. I expect this trend to continue as long as his heath holds out. And I pray it holds out forever…

 

 

Two Bronchoscopies, a CAT Scan and More {Seattle Children’s Hospital}

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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…

Six Weeks Post-Vascular Ring Repair

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Photo from Instagram. Apollo was trying to hide under the pillows with Enoch’s Kindle.

Yes, it truly has been six weeks since Apollo’s heart was repaired.

Six weeks later and he is still struggling to breathe (we were prepared for this to take time to improve), still struggling to eat and is sleeping worse than ever. He is taking anti-anxiety medicine. We have now quadrupled the original dose. Every time we increase it, he sleeps good for two nights (from 9-4 when he first started, then 9-2 when we increased both times) and by night three he is waking every 1-2 hours again. He is taking so much now, he is tired and groggy most of the morning and wants to nap by 10 am…which means he is ready for a second nap by 3 or 4. And I don’t dare put him down then or he will be up until 10 or 11 at night. I will say, the medicine has cut down on his screaming in the night- a behavior which only appeared post-surgery.

We are giving him an anti-histamine to increase his appetite. Making him hungry, even though he has so much difficulty eating.

Back when we first suspected Apollo had a double aortic arch, it all seemed so straightforward. It’s a rare heart defect, but what we could find to read was very encouraging. The Seattle Children’s Hospital website says this repair is “not a very invasive surgery”. And in the big picture it really isn’t. At that time we were blissfully dreaming a minor surgery and son who was fixed.  Fixed, as in cured. Then on February 7, we learned for the first time that he would never have a normal airway. That’s a hard pill to swallow, my friends.

But at least his eating issue would resolve itself…right? Or not.

{And by the way, while typing this I received a call from Children’s Pulmonary department, and they still haven’t received the report from the feeding evaluation. Are you serious? On one hand, they (feeding evaluation team) freak out and act like he’s going to die if we don’t do something NOW, and yet a week later, they still haven’t faxed the report over?!}

I am in contact with a few mom’s with children who have a double aortic arch…and none of them have feeding issues to the extent that Apollo does. Several have had trouble with choking, but not with gaining weight. I am beginning to suspect that he still has something else going on with his esophogus…either another issue or one caused by the vascular ring. But when I bring it up, I keep getting brushed off because nothing was found in the bronchoscopy. Oh yes, my friends, the doctors actually have the nerve to tell me if it wasn’t found in the bronchoscopy, it’s not there…You know, the bronchoscopy where the double aortic arch was missed entirely? You would think we could all agree that the bronchoscopy was a joke and toss out the findings…right? Apparently not.

And he’s coughing again at night. Coughing which leads to choking which means even if he’s in his own bed I have to stay awake listening to make sure it resolves itself.

And so here we are, six week post-surgery. Still looking for answers.

{You probably noticed Apollo’s new button. Chuck wondered why I still had a button up that said, “awaiting heart surgery for a double aortic arch” :) So there it is. I have been keeping his page updated. The new button should lead directly to his page if you click on it….could someone let me know if that works? I can’t do it from here. Thanks. Oh, and as always, feel free to grab the new button if you’re so inclined :) }

 

 

One Month Post Double Aortic Arch Repair

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This was sweet Apollo, four weeks ago.

So how are things, one month post-surgery?

*sigh*

Physically, Apollo’s wound has healed well. We can now lift him under the arms again. Surgery is a memory…a 2 3/4 inch scar on Apollo’s back will always remind us of his journey. His journey that we are still clearly in the middle of.

His breathing is still as bad as ever (patience, I know).

He has had one major choking incident and a handful of smaller ones. Much, much better than before.

His anxiety around bedtime has lessened…but he often isn’t falling asleep until 10 o’clock…which means I have no Apollo-free time (hence the lack of blogging). He has to be rocked to sleep at night and at naptimes. Prior to surgery we could simply put him in his crib at 8 o’clock with the other kids. He was up numerous times in the night, but at least I could count on some down time every evening.

We have tried: Valarian, melatonin, Bach’s Rescue Remedy, essential oils and a couple of other “calming” remedies. We’ve seen our family doctor, our naturopath and a sleep specialist. He has been taking anti-anxiety medicine for three nights now…it seems to help him wake up screaming less…but certainly isn’t helping him fall asleep.

He is taking an antihistamine to increase appetite. Eating and getting him to eat is still a struggle. That means, my oral-aversion one year old is taking medicine SIX times a day. Six times a day I force medicine in his mouth (reflux meds 2x, antihistimine 2x, melatonin and anti-anxiety)…I feel like it’s counter-productive most days :(

Remember my post about Licensed characters? Well, prior to surgery I borrowed some DVD’s from a friend, assuming they would come in handy the first days post-surgery. Among them was Winnie the Pooh. The first week or so when we were supposed to keep Apollo from running around too much, we let him watch it. Every day. Sometimes more than once. Well, now he is positively obsessed with Pooh and all the other characters. He will pretend to be Piglet and point to me and say Christopher Robin. There is one point in the movie where Pooh is hallucinating about honey and there is a song with the words, “honey, honey” over and over. Apollo will come up to me and say, “Nurse, honey, honey?” It’s hilarious (exept the whole my one year old watching a move sixteen zillion times). He also likes to yell, “Anybody up here?” and various other lines from the movie. Someone please tell me it’s normal for him to be quoting movie lines…

Apollo has also, interestingly, become obsessed with what he calls space-a-rockets. Too cute!

Two weeks post-surgery we began taking him out for the first time since fall…and he promptly got a cold. So he’s back in isolation.

He is as active as ever, though I can’t tell you how sad it makes me to here him completely out of breath as he plays. While his heart is considered “fixed” it is quite clear his medical issues are not.

Recovering from Heart Surgery {At Home}

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Things are going fairly well here. I don’t have any new photos (no time) but I thought I’d pop in here and try to answer some questions and update all of you. Next I’ll answer the questions that have come up in the comments. Be sure and check them if you asked a question there.

The positives: 

* Pain seems completely under control. Apollo is just taking Tylenol now. He only took it once yesterday, though I wish I would have forced some on him before bed because he was very restless.

* Apollo is no longer thrashing around in his sleep and hyperextending his neck. This is HUGE! It gives me hope for some future sleep for both of us. He breathing also seems calm and regular when he sleeps.

* Apollo has only choked on food twice since surgery. This is another huge answer to prayer. Prior to surgery he was choking at every meal. You probably remember me mentioning when he choked back in December and we had to call 911…

* My in-laws are here and are helping me get things back in order around here. Thank you Jean and Sandy!

The negatives:

* Apollo has so much anxiety now. It’s almost like having a different child. He has had to be rocked to sleep at nap time since his MRI in January…now he has to be held the entire time. Yesterday was the first time I was able to put him down during a nap. Bedtime is a nightmare. He starts getting upset as soon as he sees the other kids getting on jammies, brushing their teeth, etc. He is not fighting sleep, per se, but is scared of bedtime. He will not settle down or go to sleep until both Chuck and I are in bed  with him.

* Apollo has been getting very out of breath when playing or crying. I’d say that part is as bad as it’s ever been. A few times he’s gotten so out of breath he’s breathing in with a little “gasp” at the beginning of each breath. He has had several nights of retracting when we go to bed. The nurse from the hospital said it may be that it is painful to take a deep breath, so he’s gasping to compensate.  I know it is too soon for the stridor to be gone, but I wish he weren’t still getting so out of breath. He goes to see our family doctor tomorrow for a post-hospital follow-up.

* Apollo is now refusing to take any medicine….not good when he’s in pain and takes reflux meds twice a day. He is obviously reacting to the trauma…I’m wondering of they have “toddler therapy” for kids like him…

* Apollo still has very little interest in food. He ate so well that first meal at the hospital (he must have been starving) but has not been eating much at home. For instance, today he’s eaten half a rice cake with peanut butter…

The interesting:

* Apollo’s voice is different…more high pitched. I am  guess that we are hearing his “real” voice for the first time. We know he has damage to his voice box from the reflux and his body has formed nodules on them. I think the difference we are hearing now is because it is no longer being compressed.

The future:

* Apollo has three follow-up visits in Seattle on March 20. He sees the pulmonologist, the cardiologist and a dietician. I am very interested to hear what the pulmonologist thinks of his airway now…if he things the obstruction is gone or there is less narrowing in his airway.

* I don’t think there will be much in the way of the cardiologist in years to come. I believe they consider his heart repaired now. It is fully functional (thank God). I think he will probably have annual visits, but I don’t anticipate more than that.

* I do think a pulmonologist will be a part of his life for many years to come…or at least until his airway is declared “normal”…which it may never be.