Cerebral Palsy Community
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477608 tn?1238527958

Advice, vent, help

Just wanted to say Hi and let you all know a little about me, my history and what I can do.

My son was a terrific pregnancy and easy birth. He soon developed problems. At 2 months, he was diagnosed with dextro-transposition of the great arteries, ASD, VSD and pulmonary stenosis. He was inpatient at the time being treated for RSV.
Two weeks later, he underwent a cardiac catheterization. It was found that his left ventricle was too weak to perform an arterial switch at the time and a pulmonary artery banding would be necessary to prep his heart. That surgery was performed the following day. 13 hours later, my son went into full cardio-respiratory arrest. It would then be discovered that he suffered a stroke. He also suffered extensive "IV burns" to both ankles from the medications he was receiving at the time of his arrest.
He would be kept in a medically induced coma for 9 days.
To make a really long story tolerable here...
Ultimately my son underwent 18 surgeries:
~3 heart surgeries
~GI surgery (fundoplication/g-tube)
~Muscle biopsy
~3 surgeries for ankle repair
~Triple pelvic osteotomy
~Intrathecal Baclofen Pump placement with 2 immediate revisions; 2 additional revisions following fusion and later battery/pump replacement with 2 further revisions
~Complete anterior/posterior spine fusion

His diagnosis:
Spastic-Quadraparesis; CVA @ 2 months of age; central apnea; developmental delay; seizure disorder; dTGA S/P arterial switch; pulmonary stenosis; aortic valve insufficiency; ITB pump; scoliosis S/P A/P fusion; chronic aspiration; "Pallor, Lethargy, vomiting episodes w/lactic acidosis"-undiagnosed  

I cared for him at home (with the exception of 8 days when I had surgery myself) for nearly 18 years. I had our home modified to easier take care of him. I also had a medical malpractice suit (settled out of court) and have gone through losing him 8/29/05, as well as settling his estate (formed by the lawsuit).

In addition, he also had limited kidney function, used a communication system, required suctioning, various forms of feeding, urinary catheterization, PICC line use at home, illieus, bounced between school and home school.

We went on numerous vactions and travels, both air and land travel. I also have 4 other children. One with ADHD, 3 with asthma, one with amblyopia, one with migraines

If you think I can help you with anything, please contact me....
9 Responses
298824 tn?1349955177
Justed wanted to say Hi back.....and so say WOW and god bless you....if I can ask how did you travel with your  son on the plane and how was that?... We do travel with our daughter but it always the car.....thanks
477608 tn?1238527958
The first "rule of thumb" for traveling with your handicapped child is to ask yourself: "how much room does she need for her legs, arms, etc.?"  My son was VERY spastic (until the ITB) and we ALWAYS flew in the bulkhead. It was never about getting him through the plane, just that he would kick constantly!

With that in mind, book early if possible and select bulkhead seats....if they are not available, select the ones right behind them...when you get to the gate, ask the desk to call up the traveler in the bulkhead, then ask them if they would like to switch with you, or if they don't mind being kicked the entire flight. This seems to work rather well!!! :)

Next, airlines will allow exceptions for medical necessities, medications, etc. So I was able to take MULTIPLE bags carry-on.

If your daughter requires special equipment (feeding pump, oxygen, suction, etc.) I recommend consulting with your provider and having them hook you up with a provider in the area you are traveling to. Apria is wonderful and just about nationwide, so they had all my son's info already. If you can set this up, I found the necessary equipment was already in our reserved hotel room or at the front desk waiting for us.

If your daughter needs therapeutic oxygen, check with the airline first. There is usually a fee for this. Southwest does NOT offer this service, so always check.

As for getting through the airport, onto the plane, etc.:
Ask security for a private screening if they will need to have her out of her chair. Also, make sure you let them know you are traveling with medical equipment/medications/etc. if you are. A note from the doctor is usually not necessary, but doesn't hurt. Make sure you attach the doc's business card to any info.
Special needs are called to board first and you will usually get help from the airline folks.
If your daughter has her own wheelchair, you can take her in that to the gate and "gate check" her wheelchair. This will allow you to get to the door of the plane in her own chair. From there you will need an "aisle chair" if your seat is too far back to carry her. This needs to be arranged at time of booking or at the gate. If you have gate checked her wheelchair, you will have to wait with her until it is unloaded and they will bring it to the door of the plane. American was always very good with my son. Stopping traffic to get my son out.
Wheelchair Getaways is one handicapped accessible rental car company I would use when flying and needed to be able to transport my son as needed at my arrival area. If that is not an option, make sure to find an airport transfer service with handicapped shuttles.
While at the airport, if you need to toilet your daughter, search out a family bathroom. This is especially helpful as they get older and bigger :)
Make sure you pack a long, thin blanket for those toileting/resting needs to lay your daughter on. In fact we needed to change my son WHILE ON THE PLANE in the air. Being seated in the bulkhead, we laid a blanket on the floor and had the flight attendants hold up travel blankets around the area for privacy. It wasn't easy, but at least he ended up clean and dry.
Also....if your daughter is a kicker like my son, invest in some knee/shin pads or small pillows you can place on her legs. My first time flying with my son, his shins ended up purple and bruised from kicking the wall dividing first and coach.

I also found that a handicapped room at the hotel was usually not necessary and others may need those accomodations. We simply needed a bit larger room if we were there for a while.

Hope this helps! Feel free to contact me if you need anything else!!!
298824 tn?1349955177
Very helpful thank you....you transferred your son from his chair to a regular chair or car seat?...my daughters feet are strapped in....did you stay inside the US when you flew?...we do the Florida thing every year....
298824 tn?1349955177
the thing that always makes me back away...is that my daughter would have to go in car seat...she can not support herself......and her crazy legs have to be strapped...but as she gets older she getting calmer....
477608 tn?1238527958
I transferred my son from his wheelchair to a standard plane seat. By the time I figured out how to fly with him, he was too big for a car seat. However, if your daughter is in a car seat, bring that as well and you can transfer her into that from her wheelchair.
Where in FL do you go? We went multiple places in FL...maybe I can help you find somewhere to stay/something to do. How old is your daughter? Other children?

I have taken my first 2 posts and copied them into journals on my profile. I will try to add additional sources of info in future journal entries so be sure and watch there!!!
298824 tn?1349955177
We have been going to Florida for the past 11years....We got a timeshare there....so we will do the Disney and Universal thing...and anything under the sun for the children....they are 13,10,and 4...not much of life other then the children....lol....thanks for all that info its very helpful...you can see pictures of my children under my profile...
477608 tn?1238527958
We had a timeshare in Sanibel.
I can say I HIGHLY recommend Discovery Cove for special needs. Swimming with the dolphins is wonderful thereapy and a life changing experience!

By the way......my son was not able to support himself either. Couldn't sit, crawl, walk, roll over, talk (to speak of), feed himself, well....anything really. The plane seat worked fine. I used the tray table to help support him. And Adam dangled/kicked his feet all the time, which as I mentioned in my earlier post, was only a problem the first time. Then we found a solution.

Flying was certainly a better option for us. We lived in the Chicago area, so land travel to FL was a loooooooong trip!
373137 tn?1208096683
Your story is very similar to mine, scaringly similar.
My biggest fear is to go into his room one morning, and he had stopped breathing.  My question to you is...how did you deal with his death?
477608 tn?1238527958
Well.....the truth is I don't deal with it well. He is in my thoughts every minute.

I didn't wake up to Adam gone, but it was very sudden and he was not ill at the time. In fact, he had just come back from visitation with his dad.

If I can help you in any way.....

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