Thursday, May 15, 2014

Prayers, Heartache and Hospitals

There are days we might be a pain...too many facebook posts, too many phone calls, too many letters and emails. We are advocating, educating, begging for the right person to listen, but behind the scenes we are praying, crying and lifting each other up through difficult times the best we can. We have met these faces...many of them too tiny to be facing these difficult situations. We have heard them laugh, seen their loved ones cry, we have become a family. Behind the scenes we are feeling helpless as the waiting continues.... Should we have pushed harder? Could we have made one more phone call? Changed one more mind? The answer to these questions is YES! With a renewed urgency, we will continue to fight on. Today it is with extra passion for these beautiful faces...we pray it will not be too late!

Allie had a thirty minute grand mal seizure on May 6th, requiring her to go to Children's Hospital of Pittsburgh's emergency department. The doctors could not find a source for her fever so they kept her overnight for observation. After she woke from a nap, about ten hours later, she was cuddling with her mother when within a few minutes she spiked a fever and started to seize in her mother's arms before the nurse could get her Tylenol. That seizure was forty-five minutes long and required intubation (a breathing tube). During the intubation Allie vomited and aspirated on it. She is now in ICU with aspiration pneumonia, metapneumavirus, and two other viruses while in a medically induced coma since the seizure. She was in her coma for Mother's Day, which was also her 7 year old sister's birthday. Her sister had her birthday party in the ICU waiting room with a few aunts and uncles, mom, dad, and older sister but couldn't have her little sister there. The two older girls are so worried about their little sister, but they must stay with other family members during the week so they can go go school. Allie has made some small improvements, but honestly if she were to have another seizure while so weak it could be the one that takes her life. There is no estimate of when she will be able to come out of this coma and no idea of the skills and strength that she may lose due to it. ~Amanda

Zoey was admitted to Johns Hopkins Hospital in Baltimore, MD on Monday, May 5th for respiratory issues. Shortly after being admitted, she was rushed to the PICU because she needed to be on high flow oxygen.

Zoe had been battling a bout w/ Pneumonia, and was seeming to get better. She was moved to the regular pediatric floor out of the PICU, until this past Monday when had an uptick in seizure activity. Her typical seizure activity is roughly 1-3 seizures a day, sometimes more. Tuesday she had 8 seizures. Wednesday she had a whopping 56 seizures, occurring anywhere from 5-10 minutes apart at times. Last night Zoey was rushed back to the PICU as they were unable to break the cycle of seizures and she needed to be put on high flow oxygen to assist her breathing due to the side effects of the emergency medications they pumped into her system to break this vicious cycle. We are currently awaiting results from an EEG performed this morning. ~Jody

Hannah was admitted to ICU for status seizures on Wednesday May 7th and discharged on Saturday May 10th. Hannah was gaining her strength back on Sunday and Monday. We were able to enjoy a beautiful Mother's Day together at home. Tuesday morning, May 13th, Hannah awoke pleasant and was ready to get on the bus for school when she slammed into a wall and onto the floor with a seizure. Ten more of these seizures followed within 20 minutes. Emergency medication was given, which gave Hannah temporary relief. Seizures happened throughout that day.  

Tuesday evening Hannah was bathed and was ready to curl up in bed when tonic clonic clusters of seizures began at 9p.m. After 3 doses of emergency medications at home without successful seizure control we had to result to call 911 at 2a.m.  Off to the emergency room again. Hannah arrived at the emergency room just in time as she started seizing as the EMT'S were walking her in. Thirty very violent and strong tonic clonics later, Hannah landed herself back in the ICU. 

I cannot begin to explain the emotions that are running through my head. Watching my precious little girl suffer is heart wrenching and leaves me feeling helpless. But this moment of helplessness only lasts for a few hours when my 'Momma Bear' instincts kick back into action and my mind is taken off of the reality of my daughters situation temporarily and I put on my white coat and play doctor again. 

Hannah continued to seize all throughout the day on Wednesday despite emergency medications in extremely large doses. The only option is to adjust seizure medications that have already failed her.  Discussions with neurologists throughout the day are tiresome and  emotionally draining as at this point it seems we are playing Russian Roulette with my daughter's life.

In between discussions with the doctors, I research the information discussed and consult with the 'real life' experts on this matter and I come up with a plan so that I am ready to let the doctors know what I want Hannah's plan of treatment to be. After researching one of the 2 medications Hannah was introduced to, I discovered it can increase her seizures. This may be the culprit for this ICU stay?!  I suggested the immediate discontinuation of this medication and will discuss my decision with neurology.

I'm tired of researching new seizure medication suggestions...20 seizure medications tried and failed.  Seizure meds with terrible life threatening side effects. I want to scream! Why not treat Hannah with what is proven to help that has no harmful side effects???

So many things to juggle in your mind when you are fighting to save your daughter's life. Throughout the day I have a feeling that my little girl is slipping away from me. I'm an emotional disaster on the inside in fear that I never know which seizure is going to take her from me.  ~Heather

It was so sad yet so comforting at the same time to walk down the halls of ICU at Children's Hospital with Heather; so many nurses and doctors knew Heather and Hannah. When I saw Hannah, I was surprised that she only had an IV and the EEG cords. She had great color and just looked like she was sleeping.  When she started to have seizures, I was shocked that her whole body reacted and that each seizure lasted so long. Although Heather and the nurses were able to count the seizures,  it appeared to me as though it was one 20 minute long event.  I realized at one point that I was holding my breathe just silently praying for them to be over.  When that last series of seizures ended it was time for Hannah to get doses of medicine. To ensure that she swallowed all of the medicine, a type of NG tube was needed. Heather stepped out of the room, so I held Hannah's hand. She had been producing phlegm, but wasn't able to swallow or get it to her mouth to be suctioned. As the tube passed her upper throat, Hannah started to choke on the phlegm. The nurses and I expected the choking to pass. As Hannah's oxygen level dropped, her lips started to turn blue and the rising tension was palpable. Finally with the tube out and Hannah breathing normally, I realized that every moment we get to spend with her is a blessing. Although Hannah recovered from that round of seizures and difficulty breathing, we need to remember to hold her hand, tell her we love her and not take any single moment with her for granted. As I left the hospital, I took a long measured breathe and said a prayer for the children and families who live this life everyday. ~Michelle, cousin

Our hearts and prayers are with each of these families
as they continue to fight from hospitals instead of their homes.

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