by robinsteele1@gmail.com | May 10, 2015 | Choices, hospital
On Mother’s Day, I (Erica) woke up with a heavy heart. Honestly, I have had a heavy heart for the last three days.
Thursday, we went to a pre-op visit for Kennady. It is usually pretty routine.
You register, get blood work done, get the run down of all the really bad stuff, and head home.
This visit threw a boulder into my little calm pond. The reality of the risks.
Are we making the right decision? Are we doing what is best for her? Is this how God would have us care for her?
A nice neon sign would be great right about then.
I felt the weight, once again, of this journey. The weight of making decisions that can affect the outcome and quality of our child’s life. It’s a big thing, this making decisions on behalf of someone else.
I feel worried when they say, “maximally invasive”, and “she will likely need a blood transfusion”. Those things feel big.
It strips us of the control we think we somehow have.
It puts a glaring light on the “what if”, and makes you keenly aware of how little control you have.
Kennady had a surgery that went south, a year and a half ago. The surgery was difficult and six weeks later we had to have the mechanism removed, due to infection.
Those experiences begin to shape us, reminding us again, that you can be the 1%.
The truth that I keep having to repeat to myself, even if I don’t have it embedded in my heart, is the truth that God is still good, no matter the outcome. He has a plan for every step, and when I lay that all before him, I can trust that he is enough.
Here is an actual pic of Kennady’s spine. It is on a 74 degree angle.
The surgery Monday is to correct her scoliosis. It is a complete spinal fusion.
We will wake up at 5 a.m. and make some coffee, get our girl ready, and head to the hospital.
The surgery is scheduled to take up to 8 hours. She will be in the hospital for a minimum of 5 days.
We would appreciate your prayers for as smooth a surgery and recovery as possible.
We will post updates here on the blog!
We love and appreciate all of you.
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by robinsteele1@gmail.com | Oct 27, 2014 | Choices, hospital, How to deal with pain
What friend is there for you? Who are you there for?
This is an unpolished/honest post about our feelings.
Ok, here you go… We struggle telling people about Kennady’s condition. We don’t want to burden them with difficult news. We don’t want to sound weak.
There is a problem with both of those statements.
People ask us, “How is Kennady doing?” We are so thankful that people care! We are so thankful that they ask!
When we haven’t seen people in years, they ask wondering if she has progressed in ability. Can she walk now? Can she talk now? Is she more developed? Just the other day, a lady asked how Kennady was doing. We said, “She is doing good. She is healthy and strong.” The lady then asked, “Can she say anything?” We replied, “Nah, she really can’t say anything.” Then the lady added, “She can’t even say hello or hi?” We said, “No, she can’t even say hello.” TRUE STORY. That happened about 2 months ago.
When Kennady has medical procedures, people want to know how they are going. The difficulty is when things don’t go well. The procedure didn’t work. The surgery has to be redone. People of faith want answers that are positive. We believe that God is able and we eagerly wait for the answer to be positive after prayer.
What we continue to find in our journey with Kennady is that the answer is RARELY what we think it will be. It is a good answer. Because God is good. It is just different than we expected and it has some difficulty attached to it.
Here we are with another major surgery coming on Thursday.
Before, I (Robin), post something on the blog or Facebook about another challenge or surgery, I wonder: Do people really want to hear this again? Are they tired of hearing our problems? At some point, will people check out because they are tired? How many people are in for the long haul?
I guess we have to discover these answers through the process. Who is in? Who is all in? Who are the friends?
Isn’t that true for anyone or any circumstance? Some people are out and some people are in. Our true friends rise to the occasion. They are not conditional. Their relationship is not based on what they get out of it, but what they can give.
Then, all of the sudden our thinking gets turned on its proverbial ear. Who have I abandoned because their situation didn’t line up with my liking? Their path was not beneficial to me. Their pace was wearing me out. #conviction
I pray that I can be a friend in the thick and thin. I pray God surrounds us with just enough friends to carry us in the difficult times. We trust that he will.
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by robinsteele1@gmail.com | Sep 15, 2014 | Children, Choices, hospital
UPDATE: Oct 27th, 2014 – Kennady is going in on Thursday, Oct 30 for a third try on this surgery. The surgeon failed to complete the second try because Kennady’s back was too curved for the procedure. The third will involve more technology and tactics. Read details below on why this is happening.
We would love your prayers this week as Kennady is going in for a major surgery on Tuesday. She had this same surgery last year and it was unsuccessful. Actually, the surgery was very successful and the treatment was going quite well, but she developed staph infection in her spine and 6 weeks later the procedure had to be reversed.
For the last several years, Kennady’s muscles have gotten really tight. So much so, that they are contracting her arms and legs completely and creating scoliosis in her back (curvature of the spine). This causes a lot of pain and difficulty in bathing, getting her in and out of her chair, and basically all movemnent. We have given her medicine (baclofen) in hopes of reducing this tightness. It has worked some but it has a lot of negative side effects with little success.
After a lot of prayer and stored up energy, we are retrying a surgery that will insert a medicine pump in her abdomen, with a catheter into her spine, that will automatically put the medicine directly in contact with her nervous system and muscles. This will allow the medicine to skip the ‘blood brain barrier’ and not cause the side effects. It will also allow us to use lower doses with a greater reward.
It will take around 4-5 days for the complete recovery to happen and we can go home.
We appreciate any prayer you can lift up for us. If you want to visit, it would be best to visit after Wednesday. We will be at Dell Children’s Hospital in Austin, TX.
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by robinsteele1@gmail.com | Jul 21, 2014 | Choices, hospital, How to deal with pain, Video
One night when Kennady was in the hospital, Kennady’s home health nurse came up and sat with her so I (Erica) could go out get some dinner and feel the sun on my skin. On my way out, I decided to step in to the gift shop because they had these big shiny red balloons that said “SALE”, which is an instant magnet for most women.
I proceeded to call my husband and tell him that this store had a very cute necklace and that it was thirty percent off, which made it only a mere thirteen dollars, and that seeing as we are in such a stressful time I should really do some sympathy shopping and buy this for myself.
Alas, this ploy did not work and I made myself leave the store empty-handed, content that I could use my money to buy myself food to put in my belly instead.
On my way out the door, there stood sweet Jesse. Jesse gave birth to her precious baby boy Wyatt, and her second child with Cystic Fibrosis, just a little over two weeks ago. She was on her way in to see Wyatt in the NICU and I was on my way out to get something to eat.
We stopped and chatted for a while and began to discuss our children and their special needs and how living a life with a special needs child shapes you in so many ways you never realized it would or could.
One of the ways that this life is shaping us, is through us shaping our children and the next generation.
Robin and I feel strongly that the challenges we and our children face in this life will build our character and make us stronger, if we allow it.
Character: 1 one of the attributes or features that make up and distinguish the individual 2 the detectable expression of the action of a gene or group of genes 3 the complex of mental and ethical traits marking and often individualizing a person, group, or nation
Wheew! That is a lot of things to cover, but we will focus on just one point this time around. Character: One of the attributes or features that make up and distinguish the individual.
Character traits can be good or bad, strong or weak, life-giving for life-taking.
Our boys both have a sister with multiple special needs, food allergies and last but not least, they are preacher kids (holla back atcha if you know what I mean).
Talk about opportunities to build your character.
(more…)
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by ericasteele | Aug 20, 2013 | hospital, random life
Robin and I haven’t posted since Kennady got home from the hospital during her last stay because the pace of life right now, feels similar to the pace of an avalanche at your back while skiing straight down a hill.
Kennady made it home and recovered great after her baclofen pump was implanted.
Approximately 1 month out from the surgery, she got an infection in her site which ultimately resolved on it’s own.
10 days ago (2 weeks after the last infection healed up) Kennady’s incision on her back, developed a red raised spot on it. This grew over the week and then the redness spread to the front of her belly and incisions.
I took her in to the E.R. on Saturday knowing that we were most likely not leaving until we got some antibiotics, at a minimum.
Low and behold, she was admitted.
The doctor came in the following morning (from vacation) to operate on her wounds.
The goal was to clean the infection out and then make a plan.
Unfortunately, when the doctor went in, the infection was concerning enough, combined with a positive culture for Staph, that she had to have her entire baclofen pump and catheter removed.
We are extremely disappointed. Disappointed doesn’t even seem to fit.
There really aren’t words right now. It feels like such a long journey to end up in this place.
Today she had a picc line placed so that she could get antibiotics for the next 2+ weeks, as she is healing.
The doctor told us that Kennady will need to heal from this surgery and infection and that in a few months we could possibly put the pump back in.
There is so much to process right now, we are just being here with Kennady and spending time with our boys.
I will be leaving to go take my final exams on Wednesday evening, and will return on Saturday. This leaves Robin alone with the boys and a girl in the hospital.
Fortunately, we have lots of wonderful friends and family on standby to help.
We are in the process of trying to get back home with our home health care company. This way, we can avoid the extended stay at the hospital and be in the comfort of our home
We don’t have a solid plan yet, but please pray that it will be clear each step that we take.
Thank you for all of your love, prayers and support!
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Waiting in the E.R. to be admitted. I was studying and Kenna was laughing at the T.V.
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This is how Robin passes time at the hospital. He love animals soooo much that he has to go walk the balloon animals to decompress. 😉
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by ericasteele | Jun 26, 2013 | Children, hospital
Can’t wait to see her up in her chair and laughing again!
Kennady had her second surgery Tuesday morning.
Robin and I (Erica) were both shocked when they were about to take her back and told us it would be 4 hours. For some reason, we thought this surgery would be shorter than the last.
They took her back and we headed out to the coffee shop upstairs for some breakfast.
The waiting for someone in surgery can be many things
1.) Nerve wracking
2.) Boring
3.) Sleep inducing
4.) A good time to catch up on random stuff
5.) A good time to talk to your spouse, uninterrupted
Seeing as Robin and I had done a lot of catching up the past several days, and I really don’t like sitting and staring at the walls, I decided to go shopping around the corner.
This is where my martyr level started to drop. I knew I shouldn’t leave because immediately, this gives my husband the lead, but..I decided to let him keep the lead temporarily so that I could possibly get some new clothes.
It is a little strange leaving the building while your child is in surgery, but it sure did help the time pass a little faster.
We finally got the page to come back to talk to the doctor 6 hours after we left her with them. Then, we got back to the waiting room and waited a loooonnnggg 35 minutes before the doctor came in.
She came in and said something along the lines of, no part of this is easy with your daughter.
Basically, they had to redo the initial part of the surgery during this second part.
They had to remove the catheter in her spine that was placed initially, and put in a new one, then they were able to place the pump and hook the catheter up to it.
So the plan was that she would not have to lay on her stomach again after the second surgery, but because of the incident with the faulty catheter, she is back on her stomach for 3 days.
This is extending our time here by a day or two. We are hoping to be out by Friday or Saturday.
Robin left to go back to San Marcos to teach a class tonight and sleep in our bed at home. He is officially losing his Martyr status. I however, will be staying up her tonight and smothering our girl with hugs and kisses, and sleeping on the hard couch.
Ok, ROBIN breaking into the blog now! I have officially lost my martyrdom status to my lovely wife and will completely enjoy spending the night at home tonight!
Oh, the fun we have. Thankfully, God’s grace includes a package of humor and joy. We don’t just get through by plugging along. God gives us space to pick at each other and enjoy the difficulty.
A couple of nights ago, we had to go eat dinner and we missed the surgeon’s check up visit. When we returned to the hospital, the nurse said, “the surgeon wants you to call her on her cell phone so you can talk about Kennady’s status.” Erica quickly responded, “Robin, you talk to her.” I was SHOCKED. I couldn’t believe that she was actually going to let me talk to the doctor. Erica always takes the communication role because she spends so much more personal time with Kennady and knows so much more about her.
Later, I said, “Erica, I almost fainted when you said that I could be the official spokesperson of the family and talk to the surgeon on the phone.” She softly stated, “I was just trying to submit to my husband.” I burst out into hysterical laughter! I was worried that the rest of the hospital floor would be disturbed, but we both laughed so hard about her sarcasm and then we laughed about the fact that we were laughing so hard about her submitting to her husband. Anyway, for those that don’t know us, please see this as a sign that we have a completely healthy relationship. We love each other dearly and are so thankful that God’s grace fulfills us with joy no matter the ‘life climate.’
Then our mouth was filled with laughter, and our tongue with shouts of joy; then they said among the nations, “The Lord has done great things for them. Psalm 126:2
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Robin showing me the outcome of who will be the greatest martyr for staying over night at the hospital. Here, I am gaining the lead for staying tonight.
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This is the pump that was placed in her abdomen
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On Mother’s Day, I (Erica) woke up with a heavy heart. Honestly, I have had a heavy heart for the last three days.
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