The Next Stage of the Journey...Part 2

And so we begin the next stage of our "David Wants to Will Walk," journey.........

I finally got the call that Davids next surgery has been scheduled. In case you haven't been reading along and since I can't remember what I have told you and what I haven't.....here is a bit of a recap.

We went back to Shriners in October and saw a different ortho doctor. Our original doctor is no longer working at Shriners. The new one is the head of Shriners orthopedic department. Along with seeing the new doc we also got a new team working with us....including a new physical therapist (PT). It was the consensus of everyone present upon checking Davids legs, mobility and flexibility....along with looking at his x-rays that another surgery was necessary. Not the take the plates out and plate the other hip surgery that I had been thinking was coming, but his last surgery all over again.

Davids hips that originally were very turned in.....after surgery spread way out. In fact they have spread out so far that his feet now cross at the ankles making it impossible for him to stand properly. They are going to have to go back in and take out all the plates, pull his hips back in and then replate. They are talking about another 6-8 hour surgery. If you followed along with his last surgery, then you can only imagine how quickly my heart went into my throat on hearing this. Momentary flashes of almost losing David almost overpowered me. And I had to ask the really hard question. "Will David walk after this?" The doc told me that Davids legs and hips will now be centered so that his feet will be straight and flat so he can stand. The walking would then be up to David. I breathed a sigh of relief. If they do that much, I have no doubt David will do the rest. He wants to walk NOW and tries all the time but because of his hips and feet he currently has way too much difficulty. With this surgery, it should cut the difficulty to the point where David can take control.

This time I will be more prepared for the before, during and after of the surgery. I will know what to expect and how to plan. I already have a wheelchair for after surgery lined out and I am working on getting a hospital bed. I am a bit nervous about his post op recovery because of last time, but this time the surgery will not be done at Shriners, instead it will be at St. Louis Childrens where David ended up last time. They do not want to take any chances with his health or speedy recovery this time. I'll admit I was relieved.

A little side note here: Shriners in St. Louis is actually getting ready to relocate. They are building on to or around St. Louis Children's Hospital and hope to be at their new location in 2015. I think this is an amazing move for all involved as they will be able to more easily take kids like David who could have complications that Shriners currently is not equipped to handle. It will be a win for everyone. 

How this is all going to work financially before, during and after is a little daunting as somethings I know are covered because of Shriners but I have been told other things might not be covered. It has me a little on edge....but then again what doesn't these days. I am just going to have to have faith that it will all work out.

Davids surgery has been scheduled for January 14th and he will be the first surgery of the day as his will be a lengthy one. The week before we have to make another one of our mad dashes down and back as he has to see the doc and have an anesthesia consult. We will be starting the new year out with a bang and hopefully be back on the path to getting David walking.

His surgery will be followed by a 6-8 week recovery and I am sure frequent visits to St. Louis. His recovery will then be followed by extensive PT. Again...not sure how much PT will be covered by insurance. By this time next year....God willing.....they should be looking to take plates out and he should be up and walking....at least with his walker.

Someone asked me if I was going to start the Cheesecakes for David again to help offset expenses. I hesitate to do this because of the holidays and I know everyone is strapped for cash this year. I think I will just put this all in God's hands and have faith that it will all work out. What I will do though is ask that you all send out good thoughts and a little prayer every now and then that this surgery does the trick and that this time next year......David will walk!

Frequent Hospital Flyers

It has occurred to me, that I belong to a very elite group of parents that I will call the Frequent Hospital Flyers! To belong to this group you have to have a chronically or sometimes critically ill child who spends copious amounts of time causing your heart to stop and needing to be either rushed to the ER or admitted to the hospital. Sometimes both. Trust me....if you aren't in this group....thank your lucky stars and send up a little prayer every now and then for those of us who are.

Of late I have seen more and more parents becoming a part of the FHF club. I know several parents with kids like David who have Cerebral Palsy and all the not so fun things that go with that such as lowered immune system and seizure disorders. They and their kids know the inside of a hospital just as well as we do. Then there are the parents (and anymore there are many of them) whose kids are dealing with cancer. I can barely type the word....yet this is their reality. Their is a continuous hell of hospitals that I can't even imagine. I watch facebook as they are in for treatment, then their stay continues because the numbers don't bounce back and then when they finally get to go home for a week or two, often they are rushed right back when a fever spikes. It is a vicious cycle of ER, hospital and then hospital, ER! It is a rough life. 

On some occasions like a scheduled treatment or surgery, there is time to prepare and pack a bag so that the parent who is staying with the child is at least semi comfortable. However, in many cases when the emergency happens such as a seizure or a temperature spike, there really isn't a lot of time to pack what you need in case the ER visit turns into a hospital stay. And even if there was time to pack, chances are your mind is on your kid and not what is going to make you comfortable. It is also hard after the fact when you are there and you try to tell someone else what you might need. I learned this lesson well on my last visit to the ER and hospital stay with David. His seizure happened and there was no time to prepare before heading to the hospital so I was left to the mercy of my 17 year old son. Bless his heart he tried, but I ended up with 4 pair of socks, 2 bras, underwear and a pair of sleep shorts that are so short I won't even wear them around my kids. Sigh!

Today I decided that I would give a little heads up to you new parents that have joined this little club of ours and maybe even give a tip or two some veterans. Now before I go further, what I know and what I do are often two different things. That is why I ended up with underwear, booty shorts and no real clothes this time. It will not happen again. 

Keep a bag packed and keep it somewhere close so if you find yourself on the way to the ER you can toss it in the car. If the ER visit turns into a hospital stay.....then you are good to go. In that bag should be yes....underwear, but also a change of clothes and something comfortable to sleep in (preferably not booty shorts), toothbrush, toothpaste and a hair brush and hair ties. Maybe a little make up too. IMPORTANT: Don't forget any medications you take!!!! I also like to pack a couple of bottles of water and maybe a couple 100 calorie snack packs. Vending machine fair gets old and expensive.

Things you might not know about hospitals:
Most hospitals encourage parents to stay overnight with their children. Because of this, arrangements are made for parents. At our usual hospital, there is a parents galley stocked with coffee, tea, cheese, crackers, peanut butter, jelly and cup a soup. In the morning the kitchen brings up muffins for the parents and for lunch and dinner cold sandwiches. The hospital also has a Ronald McDonald room where you can do laundry, watch tv (parents and family) and snacks are provided. They also have a shower room for parents of kids in PICU along with sleep rooms as there is no comfortable place to sleep in PICU. The laundry facility makes it easy to have only a couple of changes of clothes.

Other hospitals we have stayed at give parents meal trays for free and some have huge laundry rooms for family laundry instead of just a single washer and dryer. It just depends on the hospital.

Even in the best hospitals though, sleeping is not always easy. Not because your aren't exhausted, but because there is nothing comfortable to sleep on. Most rooms are equipped with a reclining chair. Careful though because the minute you move it tries to fold you up in it. You can request a cot but remember.....a thousand other people of varying sizes and weights have slept on that cot. Prepare to either sink between the springs or feel each spring in your back because your mattress is only 2" thick. Some rooms provide an extra hospital bed for the parent but no one has ever slept well on a hospital bed. If you don't mind sleeping in another room from your child, some hospitals have sleeping rooms for parents but I was never comfortable with that. Basically what I am saying is.....don't plan on sleeping much during your stay!

If you are on a budget, avoid the cafeteria as much as possible. Hospital cafeterias are notoriously expensive and seldom is the food as good as you think it will be. Also....avoid the gift shop too. Again....over priced and not worth it. Granted though....as a parent with a child in the hospital, the hours can be tediously long and you as an adult can watch only so much Spongebob. You have to think about your mental state too. It is always good if you think about it to grab a lap top or iPad from home if you can. If not....your trusty smart phone will do in a pinch (but of course you must remember the charger). Hospitals usually have an easy hookup to their Wifi and this at least puts you in touch with the world outside your sanitized hospital walls. It is amazing how things like facebook and Candy Crush can become your best friend during a hospital stay. I also downloaded Kindle on both my phone and iPad. Reading is an amazing distraction to drown out dinging monitors. When your child is sick, it is hard not to focus entirely on them...... and your needs will fall through the cracks. This is why planning ahead is so beneficial.

Yes, I belong to an elite club. A club where any day could end us up in the ER and any ER visit could turn into a hospital stay. Its not fun but you adjust and you learn to make it as comfortable as you can for all involved. Maybe not booty short sleep short comfortable....but comfortable none the less.