When Staying at the Hospital with Your Child

Hospital trips are never fun even when they are planned. If you ever find yourself with a planned hospital trip with your child, young or old here are a few ideas for you to take along.

1. Handheld games such as video games of all sorts – Dillon owns a PSP, but any hand held will do. Toys R Us and Wal-Mart also sell those $10 hand held type games for all ages.

2. A favorite animal or blanket. While Dillon is too old for a stuffed animal or security blanket, he does have a throw that my mother made him several years ago. Hospital blankets are actually very thin and the room can be cold. Having that extra throw helped keep him warm and did provide a sense of normalcy and home.

3. Art supplies. Younger children can be kept entertained with a coloring book and crayons. Dillon (my artist in the family) has his own sketch book and charcoal pencils. This did an excellent job keeping him occupied and giving him something productive to focus on rather than the wires glued to his head. It also provided a bonding opportunity between he and the medical staff – giving them something tangible to talk about other than his medical condition.

4. Books are always a favorite, unless you are 15. Most children’s hospitals have an excellent selection of books for your child to read while they are there.

5. Snacks – The hospital only serves three meals a day and let’s face it while the food is nutritious , tasty it isn’t. I could not get Dillon to really eat any of the meals they served even if they were “kid friendly.” We brought with us things like trail mix, fruit snacks, Jello/fruit cups, string cheese and slim jims. The floor had a family kitchen with a refrigerator. Be sure check with the nurse or doctor before allowing your child to eat them. Dillon was placed on a special diet our second day there (no sugar) and he could not have most of what I brought for that one day. They did however allow sunflower seeds.

6. Toiletries for both you and your child. Children‘s rooms are usually private, they also supply little bitty towels and baby shampoo. Thankfully I brought our own. While Dillon could not take a shower until the last day due to the EEG, he was much appreciative of having some personal comforts from home such as adult shampoo. If you do forget something from home, such as a toothbrush, you can find them in the gift shop at the hospital.

7. Do not forget money for meals for you. Dillon’s food was covered on our three day stay, mine were not. The hospital cafeteria has changed over the years offering a wide variety of excellent meals, but plan on spending no less that $7 per meal.

8. Some rooms come equipped with DVD/VCR players (at least in the kids ward.) so we brought different videos from home to keep entertained during the daytime. The hospital also had a child resource center that allowed us to check out movies and even a Wii Video game player with Wii Sports.

9. Cell phones and laptops if you have them. – Dillon and I both brought our cell phones with us. Since we have unlimited texting, he was able to keep in touch with his classmates during the stay. This was very comforting for him and it helped me stay in touch with my husband when phone calls just were not feasible. I brought a lap top just in case we had Wi-Fi access. The floor did indeed allow wi-fi, but most pages were banned from their server. Still I was able to access blogger as well as yahoo mail. This enabled us to keep in touch with friends and family who wanted updates during our stay. It also came in handy when I wanted to research medication suggestions or tests they were running.

10. A folder and a notebook. Being in the hospital means being inundated with facts, figures, information, and what not. There was absolutely no way I could keep all of the information in my head. Write down what they tell you so that you can look it over, and mark any questions you have for when they come back. I had a notebook folder that I was able to put all of the fact sheets and whatnot the doctors and nurses gave us while we were there.

I don’t suggest bringing unrealistic expectations, such as you and your child are going to get along wonderfully, that they are happy and compliant to be there or that you as a parent will handle every situation perfectly. Hospitals are a scary place and children will communicate that fear in many different ways. A normally talkative and enjoyable child can suddenly start acting out and withdrawing emotionally. Don’t force a kid to be happy to be there. Give them honest and age appropriate answer to their questions. Be there with them, love them, and keep your boundaries. Sometimes a child will test to see “How sick am I?“ by seeing how much they get away with. The more a child suddenly gets away with, the more sick they will believe they are. Remembering that will help a lot. And remembering to take breaks will help you a lot as well. Parents can be scared too, but we try not to show it because we don’t want to scare our kids. Be patient and understanding of yourself as well.

I brought Dillon’s homework with him thinking he would be able to work on it while we were there. This child was so sleep deprived, because of the type of testing we were doing, that he wasn’t able to work on it. And that’s okay. Work with the school and teachers for an extension on missed assignments if need be.

And don’t forget to take care of yourself. Most of the people on the ward were locals and had multiple families members there to help them. That isn’t always the case, and sometimes you’ll find yourself the primary caretaker while your child is in the hospital. Don’t be afraid to take walks from time to time (just check with the nurse first) or to eat downstairs. Mom’s and Dad’s need quiet moments too. What parents are offered to sleep on might not be the best accommodations (I had a hard mat-like couch thing) but do try to sleep or rest. I know it’s hard, I spent more time laying awake listening for Dillon than I did sleeping, but do try.

And take advantage of the things the hospital does offer. The child care people offered to come in and play games with Dillon to give me a break – but I didn’t take advantage of that. Hospitals also have chaplains available to talk too.. Just to talk to if you need a spiritual pick me up.

It doesn’t matter if you are dealing with a new diagnosis or a long term issue, every step, every test, every something new brings it own challenges, fears and / or joys. Have a support group of friends and family to talk to and lean on. Don’t be super Mom (or Dad) and think you have to do it all by yourself. You don’t. Don’t be afraid to ask for help.

A Mother’s Guilt and God’s Grace for Parents.

There is nothing that shows the truth about relationships like being under video surveillance for 48 hours – with a teenager to humble you – or me rather. What on earth made me think I could handle that trip alone is beyond me… That was mistake – and a good experience all at once. It didn’t matter what I did – I felt guilty. I hated making him be there, but knew we had to be. I hated leaving my oldest behind – but knew he could handle it. And I hated watching my baby go through things a mom doesn’t want to happen. I felt guilty when I stayed, when I corrected unacceptable behavior and I felt guilty when I left the room for walks, or coffee or whatever. I only left him alone maybe three or four times a day. I needed those quiet times to pray or find other parents who were also someplace they didn’t want to be, looking for answers and healing as well. But I still felt guilty. False shame hits the best of all of us some days.

Dillon and I spent three days in a Fort Worth hospital, trying to find answers for his epilepsy. Neither of us wanted to be there really. Who would? I wanted answers and was willing to stay to find them. Dillon just wanted out of there, and definitely did not like the sticks (5 in all) , the wires, the food, or the camera. Or sharing a room with MOM of all people for three days straight. Not only did the staff get to see his seizures and eeg activity – they got to see the honesty of how a Mom and teenage son relate during three stressful days of constant activity, boredom, and no sleep. Oh yes, we gave them a great stress study. Mom’s and sons can get snippy with each other. 😉 Even snippy, they still love each other. Though I will agree that special needs nurses do not necessarily have a sense of humor. There were jokes that we shared that he thought were funny, but no one else did.

They don’t have many teenagers in that ward. Mostly they deal with young children – thankfully there were staff who had teenagers, and they understood the looks, the sighs and the breaks.

I can think of 100 things I could have done differently – but really, I’m just trying to change the reality of his being mad about being there. He had the right to be mad, and I kept the line of being mad is okay, taking it out on others is not. The rules at home still apply. I needed to let go of making it all okay – because it really wasn’t. Not for him anyway. There was no way Dillon was going to talk to me about what was going on in his thoughts and emotions while the camera was rolling. Conversation was not what he wanted. He had my company though – he knew I was there for him and with him. I did succeed in getting him to play with the Wii – I was so bad at the pool game he just had to help. Score one for mom. Mostly though, he drew – or watched a sports game or played on my laptop – he found a games web page. He wanted to speak to no one..

What they didn’t see – was the ride home. About halfway home tensions released and our relationship showed the other side – the best parts of honesty, communication and love. A child who will allow me to touch him and tell him I love him – but only when no one is looking. I would try to touch him in the hospital and he’d pull away in anger and teenage disgust. And yet riding home, listening to a metal station for part of the ride and comparing it to the rock music of my day – we find a middle road and grace in a changing relationship. Riding home, away from the cameras – he could find his voice and feel my touch.

Raising boys, is harder than I ever imagined it would be and yet God’s grace is sufficient and never ending. And his love – like a mother’s – knows no end.

No Pictures MOM!

We arrived at the Cook’s Children’s Hospital in Fort Worth at about 11:15 yesterday morning. It’s a 5 1/2 hour drive from Broken Arrow.

I am presently sleep deprived so I apologize now for all typos and grammatical errors. 😉

I wanted to document this trip a bit, but Dillon won’t allow pictures. I don’t blame him really. He thinks the fewer people who know we are here, the better. I, however believe in the power of prayer. And we have friends who genuinly care and want to stay updated.

There was a time when Dillon would laugh and joke about epilepsy. “What does a seizure look like? Well, ever catch a fish and watch it bounce on the deck? Kinda like that.” but at 15, after years of hoping, wishing, and praying this would go away, his sense of humor is gone. He’s turning bitter over this, and I’m presently at a loss as to how to teach him to find the humor and joy in the midst of it all. But we keep trying.

I did discover last night that they do have wi-fi afterall. Facebook and myspace are blocked, but blogger is open. So I’ll post my updates here. Facebook feeds from here so I’m hoping this works.

Yesterday was a normal day as far as registration and such went on. Cooks is much larger than Saint Francis and finding our way through the castled walls (Yes, it looks like a castle for the most part) took some time. But we found our way with a little help from our friends on staff.

The staff here is excellent. Our first person to meet was Donnie our paramedic. He plays soccer just like Dillon does. That helped bond them a bit while Donnie took his stats. Our Day nurse Jenn, is a young gal, full of energy and has a small stud on her nose. Dillon liked her pretty fast. I’m feeling my age. I look at these “kids” on the floor who aren’t much older than Charlie and remember they’ve already been through college and know far more that I ever could about medicine.

I forgot the name of his eeg tech, but she will be back today. She is about 47 and has – SIX kids of her own. Born and raised in the Fort Worth area. The fact that I try to hold conversations with everyone I met yesterday – drove him insane. By the end of the day, he was ready to disown me. Conversing was not what he wanted with anyone including me.

After meeing Doctor Malik and his nurse practioner Esther (I love that name!), I felt a little more confident in this trip. Dr Malik has ordered not only the video EEG, but also an MRI, Cat Scan and PET scan. The pet scan sounds the coolest. Modern technology is great. They will put Dillon on a no caffine and no sugar diet for Wednesday thus depriving his brain of sugar. Then on Thursday they will inject a dye that mimics sugar to the brain. The parts of the brain that are not effected by the seizures will soak up the sugar/die. The parts effected by the seizures will not. Is that not cool or what? For the first time in eight years, we will be able to find what parts of the brain are effected. Normally they guess at it, buy the seizure types and what part of the body is impacted. It’s a mirror. If the left side of the body is what is moving, then the seizure is usually in the right side of the brain. Now we have a shot at getting more information.

his night nurse is Kim – another Mom like me. Closer to my age, maybe a little older. Very warm and very kind. And very nurturing. Telling me to make sure that I also take care of myself and that they will take care of both of us while we are here, not just Dillon.

They took Dillon off his meds yesterday, and true to form he did have a seizure at about 6 am. They caught the whole thing on tape and on the EEG. I’m thrilled. The staff came in and the nurse spoke to the camera about the stuff the camera couldn’t see. normal stuff really. The only thing that caught me was “His lips are gray. He’s not breathing well.” It was over almost as soon as it started, and he came to looking for me.

I do get to sleep in the same room. They have a couch/bed thing with a hard foam mattress. Sleep is not really the right word – it’s more like lay down, close your eyes and listen all night. That and jump five feet when they come in to take his stats. But I think I got a couple of hours, so we’re good.

Not much more to write at this moment. I’ll post more as the day or week progresses. God bless.

My Tower, His Power and Strength

When was the last time you ran to Christ? Was this morning in prayer? Last night? Last week? Last year? When was the last time you felt his strength, love, or peace? Is the Name of the Lord Your strong tower?

There was a time, when I felt so lost and so alone, that I would run the mile and half from my house to my church and climb to the top of the slide tower at night. Breathless I would sit and be still in the only thing that gave me peace. The presence of God.

The parking lot was dark and the church was locked. I wanted God and this was as close as I knew how to come at the time. From my retreat tower I could see both my church and my pastor’s house. They lived in the parsonage next door back then. I always stayed in the tower and never knocked on either door.

If people knew what I was doing on those lonely and scary nights, they never let on. Which is a good thing I think. Because back then, if people had known exactly how scared and how out-of-place I truly felt, I don’t know how I would have reacted. I might have been too embarrassed to come back.

My first year in church as an adult was a year of uncertainty, hidden-ness and change. I was afraid of people, afraid of my self, and mostly afraid of God. I still thought God could only be found in the concrete and stone structure sitting at the end of that parking lot. I certainly didn’t feel him anywhere else and on days where I longed to be near him, I literally ran to him – or to at least the place I felt him last, my church.

It all sounds kind of silly now – running to a playground slide tower in the dark of night hoping to find God. But is it really? The Spirit knows what the mind cannot comprehend. Out of absolute broken need, I was led to a physical tower, nurtured and comforted there by God, until I learned what Scripture says in Proverbs 18:10. “The name of the LORD is a strong tower; the righteous run to it and are safe.”

Honestly, I didn’t know that passages then. I only knew that I was weary and heavy of heart. I needed safety, I needed rest. So, I came, I ran, I drew as near as I possibly could under the cover of darkness. Out of breath, hurting, and needing more than I even knew, I sought Him with everything I had and I didn’t realize the symbolism behind my actions. Somewhere in the stillness of the night, in my playground tower, his banner of love covered me in all my sadness, fears, insecurities and sins and gave me peace. He became my refuge, my strong tower against the foe. (Psalm 61:3) I ran to Him, and I was safe.

As I’ve grown in Him, I seem to have developed a me do it kind of attitude. Ever been there? I’ll take care of it God. Thanks anyway. I wonder what he thinks about that? In some ways today, in all of my knowledge and growth in Christ, I think I’ve forgotten how to be that young desperate women, hungry for God – literally running to HIM, to his tower, for strength and safety. I can’t help but wonder if he doesn’t miss her like I do. I no longer live a mile from my church, and besides the swing set with the tower is long gone. But that doesn’t mean I can’t run to him. He isn’t in the brick and mortar – or in the wind and waves of life. He is in you and in me through the indwelling of the Holy Spirit. We need only to call out his name – and know that we are safe.

Father God – Thank you for that young women, lost confused, and alone – who desperately sought you out in the only tower she knew to find. Thank you Lord for meeting me there. Forgive me for those times I’ve traded that tower for ones of my own making, and forget to run to you when darkness falls. Your name is a strong tower, the righteous run to it and are safe. You are my strength and my refuge – and you Lord know my name. Amen.

Written by Deana O’Hara, 2008 For Redemption’s Heart.