Tuesday, June 24 2014
Jaxon spent his first 17 days of life in the NICU at the University of Iowa Children’s hospital. When we were discharged from the hospital, I had an entire bag full of papers and information regarding the medical procedures he endured in those first 17 days. When we got home, I was overwhelmed with all of this information and my brand new baby’s vision issues, so I dropped the bag full of papers in the corner of his nursery and left it there.
Over the next few months, I collected papers from his doctor and hospital visits, his first EUA (Exam under anesthesia) and new prescriptions. When the pile on my counter grew too big, I threw those papers in the bag in the corner of the nursery as well. I was a new mom, with a baby that had special medical needs. I was exhausted, stressed, and still pretty down in the dumps about the news regarding my son’s vision. Although organizing Jaxon’s medical information would have probably made me feel a lot better, it was the last thing I wanted to do at the time.
As time went on, I began to accept and understand that watching our baby be taken back to the OR for procedures and exams under anesthesia would be our new normal. Although that part never got easier, there was a way to help me feel better about the at home care required after his procedures. Before and after the exams, the doctors and nurses would ask us all kinds of questions. They would ask about his medical history, they would ask when he last had each medication, and then they would ask us if we had any questions for them. I found myself saying, “Uh… umm… I think it was yesterday at 6 pm?” or “I can’t think of any questions right now…” regardless of how many questions I had thought of the night before. All of the questions always popped back into my head the moment we left the hospital.
When Jaxon was four months old, he had a cornea transplant. We went home the next day with seven different eye drops. The number of times each drop was needed varied, and the grand total of drops per day ended up being 17. To make things even more interesting, Jaxon had to wear an eye shield over his transplant eye until all of his sutures were removed. We put duoderm tape on Jaxon’s skin around his entire eye and taped the shield on. Even with the duoderm there to protect his skin, peeling the tape off was never fun for either of us.
Luckily, I am able to stay at home with Jaxon so I was doing most of his drops. But even then, keeping track of what drop was due at what time wasn’t easy. When Tyler was home, he would also do drops so it took some major communication to know when drops needed to be done.
This made organization extremely necessary and thus, Mommy’s “Everything Jaxon” binder was born.
Mommy’s “Everything Jaxon” Binder
This binder is where I keep every piece of paper that contains information about anything related to Jaxon’s medical journey. Even if I don’t think I will ever need the paper, I three-hole punch it and put it in the binder, just in case.
I take it with me to the hospital for his exams and I have it at home if I ever need it. Even if it turns out to be useless in the future, I will consider it a journal about all of the things we went through when Jax was a baby.
Drug Information Sheets
I always keep the information sheets about Jaxon’s prescriptions. The hospital usually gives me one when he gets a new medication and one always comes with the drug from the pharmacy. I have referred to these more times than you would think.
With easy access to Google these days, you can probably just search for drug information on the Internet, but I feel more comfortable reading information that came directly from Jaxon’s doctors.
An example of a time I referred to these papers is when I was trying to solve the mystery of Jaxon’s dry mouth. I read through the information sheets of every medication he was on until I found the one with the side effect of dry mouth.
DuoDerm Extra Thin CGF Dressing
Although this dressing is made for wounds, we used it as a protective layer for Jaxon’s skin. It can be left on for up to 7 days straight and the adhesive reacts with moisture for easier removal.
When Jaxon had to wear the protective eye shield, we taped it to the duoderm instead of his skin. Because he needed drops multiple times a day, we didn’t want to have to peel tape off of his skin every time. This made it less painful for him (and easier on mom and dad) when removing tape. It can be purchased online.
Eye Drop Bag
This is an example of how I packaged each of Jaxon’s eye drops inside of his larger medicine bag. The outside of each little baggy has a label. On the label I wrote the name of the medication, the number of times he needed the medication, and which eye the drop went in. This was helpful for not only daddy and I, but also for babysitters.
For a larger view click here https://o.b5z.net/i/u/10029653/f/Eye_drops_chart_1.jpg
For a larger view click here https://o.b5z.net/i/u/10029653/f/eye_drops_Chart_2.jpg
Eye drops Charts
When you have more than one person giving drops, we discovered that it’s important to have a system to keep track of the times each drop was given. We kept these charts and a pen with Jaxon’s drops so every time someone gave him a drop, they could write down the time it was given to let the next person know what time he needed his next dose.
These charts are also helpful when you have a high number of drops per day. It’s not easy to keep track of whether or not a drop was given at a certain time without writing it down.
Our charts were also useful when Jaxon had exams under anesthesia. The nurses asked us approximately what time his last dose of each medication was. They seemed surprised when I gave them exact times like 9:27 p.m.
The second chart I created was a little more complicated to make, but it was a paper saver. I included the number of doses per day under the medication as an easy reference for daddy and I and for babysitters.
These are our only drops at the moment!
Atropine – Used as a long acting dilator. I put one drop in Jaxons left eye every 3 days. It can also be used to relieve pain caused by swelling and inflammation in the eye. We have used it after every procedure Jaxon has had done on his eye.
Jaxon has been on this drop since he was 4 months old. The only major side effect we have notice is dry mouth. It only lasts for a few hours and he has begun to tolerate it better from long-term use.
Phenylephrine- Used as a short acting dilator. Jaxon gets a drop 2-3 times per day to dilate his eye even further than the atropine can. This drop has no side effects for Jaxon.
Dorzolamide-Timolol (Cosopt)- This drop is used to control Jaxon’s glaucoma and lowers the pressure of his eye. I think he experiences some burning and itchiness with this drop as he sometimes rubs his eye a lot after getting it. It doesn’t last long.
This is what the eye shield looked like that we taped over Jaxon’s eye after his cornea transplant. It was hard to come by these tiny baby shields at the hospital. You can find places online to order them.
We had a hard time keeping these clean because of the residue left from the adhesive on the tape. They also scratched easily so we tried to keep a couple extra shields on hand (if we could find them) to swap out so Jaxon had a clear window to see through.
Individual drop bag and med bag contents
This is an example of what I keep inside of each individual drop baggy:
This is the bag that I keep all of the smaller med baggies in. It’s an easy way to keep track of where all of Jaxon’s meds are and it fits in his diaper bag so we can take it with us anywhere we go.
Thursday, June 12 2014
Jaxon's daddy posted this inspiring video on his personal Facebook page that was shared by the performer Diddy. I figured I should share it with all of you. As parents of a visually impaired child, we were worried about our son being blind because blindness was not "normal" to us. Everyday, our visually impaired son shows us that overcoming the obstacles associated with blindness is now our "normal" and everyday it gets easier to cope with.
Here is what Tyler wrote on his post:
"When the doctor told me at 3 days old (after weeks of uncertainties as to why my son was so tiny before we saw him) that he would be blind, I had to go to corners of the hospital to keep from crying in front of Alyssa. I remember calling my family and tearfully telling them that Jaxon would never see my face, or know what either of his parents look like. I cried in the hallway with Alyssa's mom after the first eye exam with the ophthomologist when Alyssa caught me after hiding it.
This little boy is an example of the unexpected and unrelenting strength that I hoped to impress upon Jaxon. I had never known a blind person, and didn't have the first clue as to how to teach a son that couldn't see how to grow up, but I was determined.
I post this because you might find yourself in what should be the most beautiful moment of your life turn into the most painful day that you'll never forget - either way you will grow, and your child will grow from your strength.
Jaxon now crawls around with limited vision out of one eye, and to us he is "normal". He throws things on the ground, he cries when things are taken from him, and he smiles at you as he glares out of the one good part of his eye to get a good view of you.
He is everything that makes me tear up out of joy just crawling and knowing where he's going. Occasionally he smacks his head on a door, but every placement of hand or knee is a learning moment, and not just for him. Enjoy every step of the way, every movement is a gift and privilege that might not always be there."
Check out the inspiring video here:
Tuesday, June 03 2014
I'm sorry if this photo grosses you out, but today, Jaxon's doctor showed me the picture on the left. That photo was taken when he was 3 days old. This is why we thought Jaxon would be blind. It is a picture of his left eye, his GOOD eye! The picture on the right side is his left eye today. As Jax is growing, the cloudiness is getting thinner and thinner and he is gaining more and more vision. I am absolutely blown away at how amazing this is. It truly is a miracle in our eyes (or Jaxon's eyes -- pun intended). Although it breaks my heart to see that first photo, it is a reminder of how far he has come. It's amazing how far faith, support, and positivity can get you. I wish I could have seen a photo like this when I first found out my son had these eye issues, it would have given me a lot of hope and comfort for his future.
Tuesday, June 03 2014
Jax had a pretty good appointment today. Not too eventful, and that's how we like it! His pressure is at 22, which is lower than it was before surgery, so that's good! It's been 6 weeks so we are done with our post-op eye drop regimen and are back to our normal 5 drops a day (for glaucoma and dilating). To check pressure, they have this little tool that they hold up to his eye for a few seconds, they do this 5 or 6 times. Jax just sat there and let them do it. I was in shock. He did so well! Jaxon's glasses prescription was lowered today too! That's always a good thing! We are going to buy some sunglasses for this summer so if anyone has any suggestions on brands, let us know! If you have followed Jaxon's story, you know we dilate his pupil in his left eye everyday. Today we were reminded of a procedure called a pupillopalsty. It's a surgical procedure to permanently dilate the pupil. Although it means no more drops/ side effects of those drops, there are other risks involved.