Tuesday, November 23, 2010

Planning For the Unknown!!

Well, Sam's hip surgery is coming up on December 7th. We will arrive at Children's Hospital at 6:00 a.m. and his surgery is scheduled for 7:30 a.m. The surgery will take approximately 6 to 8 hours. Sam will be admitted to the ICU so they they can monitor his respiratory system and how he is coming out of anesthesia. We don't know the length of the hospital stay because of course Sam will determine that. How well he comes out of anesthesia, how well he clears his respiratory system, how well he adapts to the body brace, how well he adapts to the bedpan/urinal, how long it takes him to become stable... The hope is to get him out of the hospital as soon as possible to limit his exposure to any illnesses.

On November 30th Jeff and I will meet with the anesthesiologist to discuss Sam's respiratory issues, our concerns on how he comes out of anesthesia and his anatomy anomaly. Sam has suffered from upper respiratory issues since birth which have often caused him to go into respiratory distress. Sam normally comes out of anesthesia manic, kicking and swinging and unaware of anything around him which would not be a good idea after you have had your hip rebuilt. Sam also has 3 bronchial passages instead of 2, one is a dead end but the doctors need to know that his anatomy is different.

After that appointment we head over to Hanger Orthopedics so Sam can be fitted with his Newport Jr. Ortho Hip System, aka body brace. That should be a fun appointment....NOT!

That's the plan....now comes the planning. So many questions????

How do I explain everything to Sam?? That's a hard one, I know Sam understands more than he can express, so we talk about the surgery reassuring him that we will be with him every step of the way and we love him. I have ordered a Bummer Bear, please check out their website at http://www.bummerbears.com/. Here is the open heart surgery bear...he's adorable.This company is working on a special bear for Sam that will have his surgery scars and will be wearing a foam representation of his brace. I hope to use the bear as a visual to help explain things to Sam about the brace, care of his surgical sites, the bedpan/urinal, bathing...and whatever else comes up.

How do we transport Sam? How do we get Sam home and how does he go to a post op appointment in a full body brace? Sam will be 10 years old and he weighs over 90 lbs. and has very low tone. He will be in a semi-reclined position and will have a special wheel chair he can sit in for short periods of time. The only safe option is transport by ambulance. Which means we will need to contract an ambulance to bring him home as well as take him to any post op. doctor appointments. I have contacted our local Ohana (http://www.ohanaambulance.com/) ambulance and wheel chair transport service to assist us with this process.

What happens if Sam gets sick at home and goes into respiratory distress? Sam is prone to croup and normally we are able to throw him in the shower to let the steam open up his upper airway...not an option in a body brace. I have ordered a facial steamer and will try to use this with a tent idea over his bed and of course we have the nebulizer but if it looks like a bad attack we are going to have to call 911 to transport. This is one of my greatest fears and I feel like I have to address this and hope we never see it happen. I contacted our chief of police and EMT service to discuss the situation with Sam. They were very helpful and worked with me. I wanted people to come in informed and with some prior knowledge and a plan for the situation. I provided them with a written introduction of Sam, his emergency medical information sheet and a letter from his pulmonologist regarding medications to avoid and those that assist....and I hope I will never have to call them.

What will we need at home to care for Sam? We were so fortunate that a local family from our church had a hospital bed that we could use for the time Sam will be going through this and we have moved that into our parlor which is right off the master bedroom. I ordered a hospital table that adjusts and tilts to help with eating, school work and activities. I ordered an inflatable system to help shampoo his hair and brought in an extra supply of his extra gentle shampoo, body wash and lotion, my absolute favorite for children with delicate skin is California Baby, http://www.californiababy.com/. I bought a case of natural baby wipes (kinda thought I was done with those, but working with Sam and a bedpan I think I'm going to need a case). I stocked up on my essential oils from Heritage Essential Oils (http://www.heritageessentialoils.com/) to diffuse into the air, rub on Sam's feet and disinfect. I stocked up on antibacterial wipes and gel to keep Sam's environment germ free. I purchased some adult size bids since Sam will be eating in a semi-reclined position and I'm anticipating some food droppage. Our LWML ladies from our church altered adult small pajama pants to a 23" inseam for Sam, stretchy enough to clear the brace, warm, soft and comfortable to recuperate in. Thank you again LWML!!! I have ordered Sam's John Deere bedding just because it's his favorite.

Sam has been using his Vitamin D light (http://www.amazon.com/Sperti-UV-Vitamin-Supplement-Lamp/dp/B001JGHYXA), he looks pretty adorable in his mirrored sunglasses as he gets his treatment. I finally realize the challenge of children with Down syndrome that need to wear glasses, they really do need to be made to fit their facial shape and their tiny nose. Sam is always pushing these back into place. But if you need a pair that fits check out www.specs4us.com they feature glasses made especially for our children.

What do I do with Sam for 2+ months? This is where we had to get creative. 2 months is a long time to be stuck in a bed. First and foremost we will make sure he is as comfortable as possible and feeling okay. We have moved in a flat screen TV and connected the Wii and a DVD player, that way Sam can watch TV or get movies from Netflicks through the Wii, play the Wii games or watch an old favorite movie on the DVD player. But I don't want Sam to be glued to a TV screen so I purchased a puzzle board that will work well with his tilting hospital table (http://www.puzzleorganizer.com/JigsawBOARDS/) so Sam can continue to work on his 60 to 100 piece puzzles. I brought in playdough and playdough stuff to help work on the fine motor skills. I have made a sand box that he can play with his matchbox construction trucks in. I know what you're thinking....sand in a bed....Yuck!!! That's where the adult bibs and towel come into play to catch any falling sand. To assist with Sam's respiratory health we have brought in the whistles, and I picked up a few items at the Learning Shop (http://www.learningshop.com/), one of my favorite stores. I bought one of those tubes you blow in and then the ping pong ball floats above it and a boat that you blow up the balloon and it moves across the water, yep you guessed it I have a water box for him too. Blowing up balloons and keeping the ball up in the air will encourage Sam to take deeper breaths. We have magnetic everything including mazes, construction kits, coins, clocks, letters, objects, tanagrams... We have a car that drives on the wall or ceiling (I can't wait to try that one out), the Ipad, books, a laptop and computer games/programs and a computer camera so Sam can skye into his music class a few times with his classmates. We will mount laminated targets so Sam can practice his aim with his nerf suction cup gun. Ben is building a pivoting rod off of the bookcase so we can attach different size balls for Sam to hit and work on his visual tracking and play balloon badminton which will help keep his upper body strong. Ben is also building a stand for a basketball hoop that has a net which will return the balls to Sam after he shoots, unless he's way off and then mom will have to assist. Sam has always done chores around the house and don't think that just because he's stuck in a bed that stops. Sam will be folding clothes with the Flip n Fold (http://www.flipfold.com/) this is a great little device that helps you fold shirts, pants and towels into perfect little squares and the great part is that Sam loves doing it, he is also my expert sock sorter/matcher, one of the chores that I hate but he loves. We are putting up bird feeders near the windows of Sam's room and Jeff has installed a new pellet burner insert for the fireplace to keep the room warm and toasty on those cold winter days. I want to keep Sam engaged, talking, playing and learning...he's just more of a captive audience now. We will continue his education through his NACD program and the school will send a teacher in to work with Sam at home as he is able.

We are bringing both sides of the family together for a Thanksgiving/Birthday party for Sam tomorrow. He loves birthdays so it will be a great day and it will be fun to watch him sing Happy Birthday to himself and relight the candles at least 3 times so we can truly enjoy the moment and his singing. Sam's birthday is the day before his surgery and we want to celebrate it early since he will have to have limited contact with people prior to the surgery in order to keep him healthy.

So as we come upon this Thanksgiving season I wish all of you a very Happy Thanksgiving. Sam has taught us to count our blessings each and every day and I hope this Thanksgiving you acknowledge all your blessings and you enjoy a fabulous meal with those you love. Most importantly please keep Sam in your thoughts and prayers!

Thou hast given so much to me,
Give one thing more, - a grateful heart;
Not thankful when it pleaseth me,
As if Thy blessings had spare days,
But such a heart whose pulse may be Thy praise.~George Herbert


  1. Wow Sue!
    Sounds like Sam just may enjoy his recuperation with all the amazing preparation you're doing. He is very blessed to have such a loving and resourceful Mom! Best wishes for the upcoming months.
    Andi (Jett's mom)

  2. Sue I hope everything goes well for Sam. Sam is so blessed to have you as his mom. You have thought of everything. I hope you have a Happy Thanksgiving and Happy Birthday Sammy Early. We will keep you all in our prayers and don't forget if you need anything call!!! HUGS MY DEAR FRIEND!!!

  3. Sue,

    I am amazed at all you have done to be prepared for Sam's surgery! You are a great mom! Happy birthday to Sam! and I'll be praying for a wonderful outcome.

    Could you post here - or on Einstein list - an address where we can send mail to Sam while he is recuperating?

    Anne Calzone, mom to Lydia, 11, DS

  4. Wow - you have really thought of everything! I know it won't be easy, but with all your preparation, I'm sure it will go as smoothly as possible under the circumstances.

  5. Wow, Sue, don't you think you should plan for this a little more? LOL, just kidding.

    Have a great Thanksgiving, and try to relax, sleep, and eat well over the next week. You'll need to sleep more now so you can get your strength up. I'm sure you planned that too, it's just you kind of forgot to mention it. :)

    I plan to pray for you. Be thankful! In many countries, Sam wouldn't be able to get the medical care he will here.

  6. Hi Sue, I came to your blog from Communicating Partners and I'm really impressed by your motherly commitment. My son Christopher is 5 and not yet walking (but soon!!!). So I know all about the heartache of comparing your child to others with Down Syndrome! I'd like you to know we will be praying that you, Sam and your whole family get through the 2 months post-op really well, and that the hip surgery and the healing process go well too. You and Sam deserve it!
    Best wishes and blessings, Anja in Germany

  7. Hi Sue, I hope you had a fabulous Thanksgiving/Birthday celebration!
    I know that this is the time where you should be resting, gathering your strength, etc. However, I also know that your mind is running 100 mph and then some!
    Please remember that "You are the Most Amazing Mother to Sam" He is so blessed to have you as you are just as blessed to have him! He will prevail and you will survive! (((hugs))) Deep breath, and know that you truly have done Everything for your little man.
    Lots and lots of prayers from the Barbey family.

  8. Sue,

    Is Sam up for Skype communication? Do you do I-chat yet? Sam Lugibihl would like to wish him a Happy Birthday in Face Time and, of course, would like to talk/encourage him while he is recovering. Just let me know. Lynn Lugibihl