Waiting while trembling in Doctors offices and operating rooms.

Fear Fighting by Kelly Balarie. is a book that I am on part of a book launch team. I have really enjoyed reading a book I can relate to.  I deiced to edit a blog post I had all ready had up and wanted to add a few touches too since reading this book. There is a chapter that really hit home for me and reminded me of this blog post I wrote. The chapter is called waiting well. You can find the book here“Fear Fighting.” Link back to www.fearfightingbook.com and www.purposefulfaith.com

One of the most fearful moments in life is getting a medical diagnoses you don't fully understand how it will effect you or a love one.

Most of my life I would pray to God for patience and in praying God given me many lessons in patience. Like waiting in line at the coffee shops, banks and the most difficult wait was waiting for my my immigration papers I will blog about that at a later date. I found a moment that we can almost all relate to which is waiting in a hospital waiting area. There is a room where we wait. A room where a lot of people pray and ask for others to pray with them.

Thisweek is no different Friday I will be waiting for Bella to come out of dental surgery. I will wait for her and pray for her once more and hope all goes smoothly. I will wait it out once again and be tested on my faith and my patience level as my husband and I have to get up at 4 am and get her to the hospital at 6 am for a 7 am surgery.

 

. The surgery was 3 hours long. Bella had two teeth pulled. . Bella has a few fillings and a crown on her teeth. Bella had a rough time getting the sedation medication out of her system but we pulled through it. I won't lie it was not easy. Last night she was up all night from 2 am until 5 am asking for ok more like screaming and demanding to watch Netflix. She needed her sleep she was hungry and then she got off the sedation medication and had a meltdown after the meds were wearing out. It was a rough night for us. Truth serum is in that sedation I swear it was so hard to hear all of her struggles and be powerless to help other than what we were already doing. No parent likes to see their kid in pain. We had lots of tears and sobs but we worked it out. She is eating soft foods and does not like things blended up one bit. She should be able to eat back to normal in a day or so. Just gotta make it through tomorrow. Monday she goes back to school and she should be good to go she did not like missing school Friday at all because the kids had a snow day the day before. Hopeful that tomorrow will be a fresh start and we can go back to normal routines.

 

I know a lot of you want to know how this was all covered insurance stuff was covered under her medicade and children special health. Adam has a fsa card from where he works so that paid for the deposit on the room at the hospital. We had issues with Bella's prescribed floried toothpaste getting covered but we are working on trying to get that covered. The dental work and the paper work was easy.  Bella saw her regular doctor before we went to the hospital to clear her for surgery. Bella has a small heart murmer but it is the kind not to be concerned about.

Here is Bella pictures from dental surgery she has such a pretty perfect smile so if you wanna bat a eye at me and judge me for saying no to your lollipops and sugary stuff go a head I dare you! I have spent so much time effot and money on making sure she has great teeth. Teeth is one of those issues that is common amonth children wtih 22q. I was born with to many teeth in my mouth and have issues now as a adult with my teeth that is not something I have to let me daugheter go though.  I don't feel bad for offending anyone who offers her hard candy or sticky sugary stuff and saying no thank you. There are so many sugar free healthy options we have found that she loves instead any how and perfers.

. Has your kid or kids had to have major dental work where they had to be on the sedation medications? Comment below if you want to share about your personal experiences with dental stuff.

I really should start giving guided tours or have my own room with a name plate or something by now. I have been in and out of hospitals so often I know the ins and outs, from filling out forms, talking to hospital social workers to knowing the medical terminology like a dr to get the insurance to do the billing correctly. Only I don't have a phd. I have had to be resourceful and mindful though it all. I also have had to find my own way with faith and as I think about this Friday and how simple of a task this time around is with dental surgery I remember it wasn't always so simple and planned out. I have a routine for hospital trips, busy bags and the works. I can teach seminars to parents about what to do and not do while waiting for the dr to call your name and see your child in the recovery room.

There was a point in time when I didn't wait well at hospital visits. I want to share a post I wrote a while back about the first time my outlook changed towards these multiple trips and visits to different hospitals and doctors.

 

 

The day my perspective change on mine and my daughter's genetic disorder called 22q11.2 deletion syndrome.

 

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One day sitting on a hospital bed next to my daughter as she was hooked up to wires for her video eeg for the fifth or sixth time to discover the cause of her seizures. I found myself in the poor me, whose is me self-pity stage.The why me lord was a question I asked often I was full of anger and didn't like this disorder but then I figured that anger was the stage before acceptance. Anger has a place and while waiting for the anger to fade into hopefulness I learned that acceptance is the stage after moving out of hopelessness into hopeful days for the future.

Waiting well is not always easy.

My daughter scheduled for another overnight video eeg.

The study prior to this video eeg the doctors had her sleep deprived for 24 hours. This time sleep deprivation was 48 hours although my husband told me go ahead rest my guilt of passing on the disorder ate away at my internal core.

I was sleep deprived for a week and finally started to feel the effects.. Why me? Why us? I felt like I couldn’t handle it much longer watching my daughter cooped up in a hospital room during the day with wires her head and body covered her every moved watched. In hopes she has a seizure which of course never happens during controlled environments at a hospital.

Sitting in the hospital bed I wept while Bella was finally able to sleep.

I had child life come in to relieve me so I could refuel on more caffeine.

My husband was working at the time and I had walked down the hall to compose myself…

As I walked to the family lounge in the pediatric ward I met another mother who had a child in the cancer ward.

The children cancer ward a place I was grateful my daughter was not in.

It could be worst it will get better I now tell myself. My moment of hopelessness washed away.

Sitting in that room with pity for myself while this mom is going back to her child who is also hooked up to wires but her child is fighting for life and hooked up breathing tubes. Her child was in a ward that is isolated.

I went to thank the mom but I couldn’t get past the doors to the cancer ward.

The locked doors separated the video eeg unit because the cancer wards are locked off meaning I could not get back there unless I was family.

I looked inside the ward and saw tiny children with bald heads rolling down the hallways in wheelchairs. The children I saw were younger then my daughter who was four at the time and the hopeless went to hopeful after I cried tears of thankfulness. I went from hopeless to hopeful in that moment.

It could be worst and it will get better is what I learned from my daughter video eeg that day. My situation didn’t change but my perspective has.

Have you ever been in a situation similar to mine where things seem easier with a different outlook on it? I would love to hear about your personal experience in the comments below.

Thank you for reading. #Fearfighting.

For more of my stories and writing of what life is like living with a rare disorder 22q11 check out www.mommiesquietplace.com