Tag Archives: special needs

Swapping Out a G-Tube

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{A special thank you to Tilly for taking photos of the actual g-tube swap! Oh, and she was using my fisheye, because it’s a wide angle lens so expect a bit of distortion.}

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Having a g-tube, it seems, is a process. Apollo had his g-tube surgically placed May 4th, 2012. He had the original PEG tube replaced with a mic-key September 17th, 2012. And yesterday Apollo had an appointment so I could learn to swap out his g-tube, something that will be done every three months from now on.121712_8433-3 blog

 Do you have any idea how much time we have spent by this sign, between the pulmonary and GI clinics? A lot.

Apollo was hi-lar-ious yesterday.

While we were waiting to see the doctor, Tilly was showing Apollo pictures out of The Diary of a Wimpy Kid Movie Diary. When the doctor walked in, Apollo ran over to him and yelled, “Look, it’s a naked guy!” and showed him a picture (of a man laying in a swimsuit on a lawn chair). Needless to say, the doctor and nurse laughed and Apollo shrieked with delight. That pretty much set the tone for the rest of the visit. It was so nice to have a pleasant doctor’s visit. 121712_8440 blog

Here Dr. F is pulling out the package with the new g-tube and explaining the process to me. Thankfully, I had watched several YouTube videos (with Apollo) so I was confident I would have no trouble. Apollo was, of course, a little nervous.

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Dr. F is getting ready to lay Apollo down on his back. 

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Apollo is reaching out for Enoch to hold his hand. 

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 I love how Apollo is eyeing the doctor so skeptically here.

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And it’s all done!121712_8456 blog

Giving Enoch a knuckle punch after we were all done.

“It didn’t even hurt!” he said.

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And afterward we took the time go to the hospital play room and hang out for a bit.

I swapped out Apollo’s g-tube.

Cause I rock like that.

 

Toddlers, Surgery and Trauma

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Did you know Tilly is my newborn assistant? She’s been helping me for the last three years or so. She’s awesome and knows exactly what I need and when. This shot was taken when I was testing the light at our last shoot.

Thank you all so much for your thoughts on nightmares. I read every single comment. I had not heard about a connection between melatonin and bad dreams. We decided to give dropping it a trial run. Apollo hasn’t taken it for four days. He had nightmares the first two nights and none the last two. I’m not getting excited yet, because he only has nightmares 3 or 4 times a week, so we need to give it some time and see. I am sure he is having nightmares and not night terrors because he remembers them and talks about them (by definition that discounts them as night terrors). He is also now afraid of the dark. Some of that I’m sure is age appropriate and he’s experienced so much trauma in his two years…

We had an interesting conversation at bedtime last night…Apollo asked something about the surgery and I told him the doctors had to do it to fix his throat so he could eat. We looked at some pictures of him in the hospital and he asked, “Did the doctors cut me with a knife?”

“Yes, a special knife called a scalpel.”

“Was is sharp” he asked. “Did they do this?”

He then made cutting motions on his arm.

I said yes.

He reached back and touched his left shoulder and said, “But it hurt when they did that to me!”

I then showed him pictures of Chuck holding his hand in the hospital while he slept. I reminded him that I slept in bed with him every night in the hospital. I am hoping that as his verbal skills grow talking through it will help. If the nightmares continue I will definitely ask for some type of referral for him.

In other news, I have this whole week with no appointments for Apollo! A rare week indeed. The 17th he sees his GI doctor and I will learn to put a new mic-key button in. The next day I meet with his dietician again.

His chest x-ray was clear last week, so this week we get to double his fat intake, now adding in 4 teaspoons per day. Chylothorax with a two-year-old is something of a nightmare. Tomorrow will be six weeks post-surgery and we are still not even close to a normal diet.

 

 

Double Aortic Arch Re-Operation

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October 29, 2012- the night before Apollo’s second double aortic arch repair. 28 months and weighing in at 26 pounds.

March 6, 2012- the night before Apollo’s first double aortic arch repair. 20 months and weighing in at 21 pounds.

The Cardiac-Vascular Intensive Care Unit (CVICU) was full the day of Apollo’s double aortic arch re-operation. The surgeon, Dr. M, elected to do the surgery anyway and send Apollo to the Pediatric ICU instead. We were so thankful he chose not to postpone the surgery. In this photo you can see the central line in Apollo’s neck. It was huge and held in with three stitches. After they were taken out he looked like he’d been bitten by a vampire.

So many medicines to try to tackle his pain. This poor boy is hard to manage.

A little boy in a big bed.  Still in the PICU.

Taking a rest after snacking on Cheerios and popsicles. The nurses learned an important lesson with Apollo: never give a cardiac patient a blue popsicle. The first one they gave him left a faint blue tinge around his lips and mouth. It was scaring every nurse and doctor who walked into his room!

Apollo’s first feeding after his surgery. He only had one or two feedings of his soy formula before they noticed the chyle in his chest fluid and switched him to  Enfaport…which he promptly began vomiting up… and hasn’t quite stopped yet.

Apollo had some physical therapists come in and help him sit up for the first time. Not fun after a thoracotomy. He cried and said no, no…it was so hard to make him fight through the pain to sit up and “play”. Initially he needed help and support from pillows.

 Here you can see that even though he’s “playing” with toys, he isn’t having much fun.

After two nights in the PICU we got moved to our own room on the 15th floor! I loved this about Texas Children’s hospital. The 15th floor is reserved for patients recovering from heart surgery, all of the nurses are cardiac nurses and the rooms are all private. Finally I had a bed to sleep in! Or so I thought. Apollo would have nothing to do with me sleeping in a bed two feet away from him. As a result, we shared this bed every night. After Chuck left Tilly slept on the sleeper couch in our room.

Oh, and I can’t even begin to tell you how awkward it is to wake up at 5 am with a doctor leaning over you and examining your child. Then trying to have a semi-intelligent discussion with said doctor as you lie there in your pajamas…

This was the first time Apollo left his room on the 15th floor. Yes, he looks happy…he was also completely drugged up on morphine…

And Elmo came to visit. Apollo’s expression says it all.

The new scar. As you can see, it’s almost  twice the size of the original one. They start out the same, then the new one veers off and up as Dr. M decided to go through the fourth interspace in the ribs instead of the fifth that Dr. K went through. The thicker, lower part of the scar is where the original incision was. Below is a photo of Apollo after his surgery in March.

Here you can see Apollo only has an IV left in his wrist. At this point he was only kept in the hospital because of his chest fluid.

And this is pretty much what Apollo thinks about having his vitals taken every four hours.

Texas vs. Seattle {Five Days Post-Surgery}

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{I am blogging from Tilly’s laptop right now. While I love the iPad for surfing the internet, it is nearly impossible to type a full-length blog post on it. And I really can’t go back and edit (not sure why). I was hoping that with a real computer in front of me I would be coherent. But as I read this over, I realize I’m not. Sorry, it was a long night with too making wakings and too much pain.}

We are on day six in the hospital. After Apollo’s first double aortic arch division, we went home on day three! It did seem a bit early to us at the time, but wow, nobody is even talking releasing us right now.

Chuck left yesterday, and is now home with the other kids. I knew I would be staying in Texas longer than Chuck, but never dreamed we would still be in the hospital when he left.

Anyway, it’s nearly impossible to have virtually the same surgery done at two different hospitals without comparing the two. There are things I love about Seattle Children’s Hospital and things I love about Texas Children’s Hospital, but the experiences have been quite different.

My biggest complaint about Texas is that they are very reluctant to include the family in morning rounds. Seattle Children’s promotes itself as very “family friendly” and talks about always listening to the parents and including them in the “team”. This frustrated me for a while, basically because we got the run-around for the first eight months he was seeing doctors down there and it seemed like it was all talk. I felt that no one was listening or taking my concerns seriously enough. He was constantly seeing doctors and then we would be told to wait, wait, wait…we never felt like they were aggressive enough in trying to find out what was wrong. My son is in the hospital for his second heart surgery in 8 months. We were not making up his health issues, for Heaven’s sake! Each time he’s been admitted, however, we have felt like he’s gotten excellent care. In Seattle every morning as they do their rounds, they come and ask if you would like to be included. Chuck and I always said yes, and we’d have ten or so doctors, residents and students in Apollo’s room. We heard every word they said and could add our input or clarify things.

Here in Texas, rounds are done out in the hall, often  without me even knowing they are happening. Not only do *I* not know what’s going on, but the doctors and students sometimes don’t even see him. I think this is bad for Apollo and bad for the doctors. Instead of being Apollo, a little boy, he’s a “28 month old  male post-double aortic arch division.” Those are two very different things, in my opinion, when it comes to patient care. And I don’t like it. I feel completely out of the loop. When I ask questions (which I do) I am constantly trying to play catch-up.

We have been thrilled with the surgeon who did Apollo’s re-operation. I have no doubt we made the right decision in coming here. We saw Apollo’s first surgeon (in Seattle)  three times. Once the day before his surgery, next the morning of his surgery when she marked which side she would operate on, and lastly, when she came out to tell us how the surgery went. Well, four times if you count the time I ran into her in the hallway on my way to grab some coffee.

Apollo’s surgeon here, checked on him about four times in the ICU.

In Seattle, Apollo’s pain was not under control. Chuck and I both determined that we would let them know that this time around. It was still a struggle this time, but he had his own pain management team, that checked on him throughout the day. Even though it was a struggle (his epidural didn’t work well) and took over five hours after we first saw him to give him some relief, they didn’t rest until they found the right combination of drugs. And they continue to check on him.

Current issues:

* Apollo is still draining too much chest fluid. He is now on diuretics to try to “dry him up”. He is on a non-fat diet (because the fat leaks into the lymphatic system). Oh the irony! He’s been on a high-fat diet since he was a year old. Too bad the few foods he eats (potato chips, french fries) contain fat. *sigh* He is currently eating almost nothing by mouth.

* Apollo is still not tolerating full feeds. He is being fed a high-calorie (non-fat) milk based formula every three hours (for an hour at a time) around the clock.

* Apollo still has not pooped. He is on stool softeners and had suppositories, but still no luck. Unfortunately, surgery and pain killers tend to do that.

Thank you for all of your prayers and comments. I have not had a chance to respond to them all but have enjoyed reading them.

 

Medical Me {Apollo’s G-tube Doll}

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Can you tell poor Apollo was sick in these photos? His eyes look so dull and listless…

While browsing etsy one day looking for g-tube supplies I stumbled upon CPMentor. She’s the mom of a cute little guy who also has chronic medical needs. She took a Haba doll and inserted a g-tube to help explain the procedure to her son. Now she is selling them on Etsy.

When Apollo saw this doll (who he’s since named, Eragon) he got this shy little smile on his face. It’s an expression he uses when he is shy and excited at the same time. 

Apollo spent a long time examining every inch of the doll (including the heart surgery scar CPMentor drew on his back). Then he wanted to “feed his tummy”.

We, of course, grabbed some supplies and let him go at it. He carefully hooked him up and “fed” him.

I can personally vouch for CPMentor’s amazing customer service. She bent over backward getting Eragon ready, even when she ran into problem after problem. Then she overnighted the package to me, so that he would be sure to be here before we left for Texas.

CPMentor doesn’t just limit herself to g-tubes, by the way. The little doll she made for her son has glasses to match. She works hard to make her Medical Me doll as much like the child she is designing it for as possible. Together we selected Haba’s “Michel” doll, deciding it looked most like Apollo with the blonde curls, huge brown eyes and pensive expression.

By the way, Apollo was quite amused by Eragon’s hair. He kept scrunching up his nose and laughing saying, “His hair is so funny!” Only he pronounced “funny” as “sunny”.

Looks like Eragon may need to go see his chiropractor…

I can truly say that Apollo loves Eragon. He’s been playing with him all around the house and is looking forward to taking him to Texas. Personally, I like the smaller size. You may remember the cute red-headed doll Apollo has taken to the hospital in the past. While I really like that one, Eragon’s compact size sure makes him easier to stuff in a bag.

Dolls have been used for years to help children express their emotions, and these Medical Me dolls are no different. Sometimes it helps to have someone “just like you”.