Sunday, July 10, 2011

A very scary morning.~Dad Reports

1.

I'm booking a hotel. I can't place; for a second, where I am, but I'm here at this hotel. I'm upset. The room is not reserved. In the distance I hear a fire alarm going off. Everyone starts to panic. People are running everywhere. The alarm gets louder. I hear my wife in the distance. I panic and try to follow my wife's voice. She is calling out the baby's name "Leah, Leah, come on baby". Again, I try to follow her voice. I am concerned, even frightened that I may not get to them in time to save them even though I do not smell any smoke or see a fire. The hallways seem to get longer. "Where the F*!K are they!", I think. I can hear Frani's voice even louder. But I STILL can't seem to find them, in what has turned into a maze of hallways and rooms. Then all of a sudden, total darkness.
My eyes begin to open. Wait,I was dreaming? But I can STILL hear the fire alarm. By now, I've realized that it's baby Leah's monitoring alarm going off. My wife is trying to remain calm, but I see her worried face as I try to wake my self up.
The baby isn't moving. I look at the monitor and she is "de-sating". Her oxygen level is going lower and lower. It is below 94%. That isn't a good thing. My wife begins to shake the baby harder. She is now at 88%. By now, all my "lights" are on and I realize the gravity of the situation. I try not to panic. My wife is calling the baby's name louder. The nurse seems to be taking forever to come into the room. But that is just an illusion; the effect of the adrenalin and my panic mode. Things are not happening fast enough, except for her numbers. They are going lower faster and faster. Finally, the nurse arrives. We explain what is happening to Leah. She begins to calmly but effectively go through her motions. "She needs to hurry", I think to myself. Again, it's all in slow motion. The baby is now as low as 80%...not good.
She pumps up the oxygen level. It's not working. A few minutes later, the doctors arrive. Two and three year residents and a fellow (Doctors),circle around the bed. They look, they observe, while the nurse does most of the work. They confer with each other and think out loud. The nurse realizes the oxygen is not working. Just then, a Respiratory therapist tries to come in, but it's a full-house. From the doorway of our room I see her investigating all the connections and she says, "It's not connected...the trache collar tube is not connected". She looks around the bed and follows the top that is connected to the baby's trache, down and around until she reaches a break in the connection. The baby is not responding because at one point of the night; or morning, the tube was mistakenly disconnected! Some in the room breathe a sigh of relief,while others think it's funny and chuckle. I am not laughing. I am furious, but I manage to keep quiet as not to add to the situation. I want answers. Why is my baby not breathing at 100%? Why is she so lethargic?

For the past 3 days Princess Leah has not been able to sleep. Her movements shake her enough to wake her up from any slumber she attempts. Yesterday,mid-day she finally fell asleep. She slept and slept. I began to think that maybe it wasn't just that she was tired from so many days without sleep. Was she giving up? I worried. I talked to the nurse casually, holding in a bit of panic. She assured me that Leah was simply tired. I believed her and went on.

2.

We had to go shopping for another apartment. We have a one bedroom and according to the Hospitals Case Manager, we needed another room for Leah and her massive amount of devices and equipment since there was talk of discharging her. We had a week to look for a new place and plan a move.
Yesterday, we looked and found a few reasonably priced apartments. If it wasn't for the financial support we have been receiving from our friends in the Star Wars community and those that have fallen in love with our little Princess Leah, we would not have the funds(at this point) to move to a new place so quickly. We had been putting our lives and work on hold, to be by her side vigilantly. I have never ever regretted that decision EVER.
We headed back to the hospital. I couldn't wait to see Leah again. I am anxious. When we arrived. I found her; once again, extremely lethargic. Our friends Alana and Anabel (from her support group "Leah's Angels") had come to visit Leah. They came to distract us from all the anxiety we'd been feeling for the past 60 plus days. It was much needed and their hugs are always appreciated. Throughout their visit, I would check on the baby. She still looked out of it. In my head, I began to worry. Hours went by and our friends left. I asked my wife if she thought the baby was okay. She felt that maybe the baby was just tired. I worried. Something didn't seem right to me.

3.

The doctors are still hovering over the baby. They try to calm us, but it isn't working. My wife is upset and angry. They try again, to explain to us that despite her "de-sating" she is back up at a 100% now thanks to the reconnected trache collar. Still, they think she is too lethargic. "Really? You think?" I sarcastically thought in my head. But they assure me that all her vitals are fine and that she is probably a bit too sedated. Is it the new drug, tegritol? Is it all the Clonopin, Clonodine all these drugs in her system? They turned her feeds temporarily off. I want answers. It's hard to get them. She really is a mystery to many at this hospital. Genetics, the super sleuths of the medical field are trying their hardest to find genetic clues. Neurology, is trying very hard as well. In fact, they have become so protective, that they have asked all medical teams to report to them first with any clues, before approaching us so that we do not mis-interpret or panic with any of anyone's findings. They almost feel like family now that we've been here for so long. I know they feel for our situation. They have even giving us a few hugs in the process of all this craziness. It has been so appreciated.
But today, I'm angry. I'm angry that I have to correct the newer doctors as to what she had and when she had it. By now, I know all the medications, and what they do and how long acting they are. I'm angry that I'm not a doctor. I'm angry we still don't know what she has. I'm angry that I cannot cure her.I'm angry I don't know how long my baby will live. I'm angry that my baby isn't home in her crib. I'm angry that I'm angry.

4.

Several hours have passed. By this time, we have already changed Leah's diapers and bathed the baby ourselves in an attempt to try and wake her. Frani gently massages her little body while using her "happy" voice. Leah responds. She stretches with a yawn or two. She is still not able to completely open her eyes and when she does, they don't open all the way. I am somewhat happy about this, but I cannot stop worrying.
My friends, the Neurology team come in. They've been told what has transpired.I see their faces and they are not happy either. They have been with us through all the ups and downs of this emotional roller-coaster ride. I feel connected to them in some ways. I wonder and hope they feel the same.
They explain to me that the newest drug we have tried should not sedate Leah in such a way. They approach the conversation; as they usually do with us,from a very layman perspective. I understand them. I'm convinced it is not the tegritol. I've learned to trust this team. I joke that now that we are on the "regular floor" I miss the P.I.C.U.'s quick response. I miss the doctors in that unit. Although, I do not miss the cold floor and the cries of pain from the children at night, or knowing that one of Leah's neighbors has died. I DO miss the crew that made me laugh, when they felt I was feeling down. I have to give credit to the nurses; they became my therapists at times. I never want to go back to the P.I.C.U. with Leah again...ever.

The Neurology doctors continue to discuss plans for Leah. They want her out of the hospital. While I worry about leaving, they explain that the hospital environment is not healthy since it is a breeding ground for bacteria and infection. They want her home, away from all that. Their theory is that Leah possibly got some sort of infection that is causing her to feel this way. It can also be the Clonopin (a sedative). Tests will be done later in the day.
The attending Pediatric Neurologist feels my anxiety and says that he will talk to the floor team. I know what he means, and it is appreciated. We've been through so much. He knows this.

5.

I have been taking a nap with the baby for most of two hours. Frani has gone out with her mom to have some mother daughter time. Frani is lucky. Her mother lives nearby and is able to comfort her and lend her ear and shoulder. She makes the time to help us out, when we need a break from the hospital, even if it's for a few minutes to catch our breath and decompress a bit.I am touched by how close they have become...even more than before. Life has not been easy for them, but they have survived. It makes me happy to see the relationship reach a higher level.
I have also grown to understand and get closer to Frani's mom as well. I am thankful that I have her. I see her own desperation for answers and even anger at times. But I remind her, that Doctors are humans and not gods. She jokes "Well, they should be!"

One of the floor resident Doctors gently opens the door to Leah's room. I like this doctor. While the others were nervously laughing about Leah's trache collar tube not being connected, her face was more one of embarrassment and concern. As I assumed, she apologized for the mistake and assured me that would never happen. I explained my disdain over that. She absorbed my anger. As I was told by Neurology, she said tests would be done and that her team thinks it is not the tegratol either. They are holding the Clonopin, and hoping she does well as they ween her off of the semi-addictive drug. The dosage is a small one, but none-the-less she has been on it since she was in the P.I.C.U.. She also informs us that they will not be operating on Leah for her G-tube on Monday. I am not surprised by this; given the morning episode we had. In fact, I told her that I would NOT sign anything in regards to that, unless I felt it was completely safe and I had enough evidence to convince me she was ready for it. She understood.

4:15 pm. Leah lays in her bed, still a dazed with limited movements. We wait for her levels and tests to come back. I talk to her. Somewhere in-between here and there, she manages to tighten her grip. I hope it's her way of telling me she can hear me. I can't stop staring at her. I examine each inch of her tiny body. I close my eyes; at times, to feel the soft skin of her hand gently caress my cheek. I talk to her. I tell her how much we love her and how much we need her. I tell her that I am proud to be the father of such a strong little girl. If she doesn't understand me, I hope she can feel my words. I tell her how much the world loves her, and of all the hundreds of emails, messages, letters and posts from all over the globe, have learned to appreciate their lives again, to Love again,to have Faith again, to be human again. That I have received emails from parents that have told me that reading her story, or seeing her in the news, has changed them and brought them closer to their own children. That I have connected with others in similar situations to ours. That we have been contacted by attorneys that want to help other families like ours by starting a foundation in her name.
My beautiful baby Leah,my Princess, you have been on this Earth for less than 5 months and already you have touched so many of us.

I LOVE YOU LEAH.

9 comments:

  1. You guys inspire me. I have been meaning to write you an e-mail for some time now. My little girl too has an undiagnosed problem, she tremors upon waking up, and sleeps for 14-17 hours straight, way more than a 2 year old should, and will still take a 3-4 hour nap on top of that. She's sleeping more than she's awake. We have had every test done- eeg's, mri, xrays, every lab even possible-, seen a team of neurologist's, endocrine, and a sleep study specialist. Her "episodes" as we call the shaking spells, didn't start until she turned 18 months, which has left the doctors dumbfounded. I wish we could help financially, but we too have devoted our lives to our daughter, and if my fiance is at work, I'm ususally home and vice-versa, just in case something were to happen. Know that I am praying for leah, and also for you both. I know how hard it is, and although we haven't had as many long stays, we've been overnight/admitted at least 5 times too. We actually asked that people bring toys to donate to CHW (Children's hospital of wisconsin) for Melina's 2nd birthday party. They have given so much to us, and we were there for Christmas Eve this past year, and it was magical. I truly hope they figure this out with Leah, and if you ever make it to Wisconsin, I would love to have you visit! You have inspired me to not give up hope, for that I am thankful. -Brittany (PS: I heard about Leah on our local news, she's really made it far!)
    (bkielpikowski@yahoo.com if you ever wanna talk!)

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  2. I wish I had the words to comfort or I had the answers.. but I can pray for Leah and your family...loving thoughts and prayers from eastern North Carolina.

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  3. I was introduced to Leah through social media a few weeks ago and been spreading the word in hopes of finding a cure. I have not had the time to read everything...but if I remember correctly, this all happened shortly after her first vaccinations and I'm sure this has been thought of...but I had to make sure. Everytime I look at my phones friends stream and see these updates I get angry and cry myself because I like you feel that no child should have to endure this...I want to make sure that this agency has been contacted. Here is the clip from the website including 800 number and website. "You or your doctor should then report the symptoms to VAERS, (the Vaccine Adverse Event Reporting System). Collection and evaluation of such information by VAERS and other agencies may help reduce future risks. For more information about VAERS, call 800.822.7967 or go online.(
    http://vaers.hhs.gov/index) I hope this helps, because everyday I feel your pain and am praying and sending as much positive energy to the 3 of you to stay strong and we'll all find a cure soon, Best wishes, Phil

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  4. I have been trying to keep up with your story - It is like reading deja vue! My daughter's name is Leah as well, We were in the Hospital for 14 months out of 17 months when she died. Today's post is almost exactly how we felt and what we went through - With the only exception - a support system! Now that my only daughter is in heaven, I started a ministry as a tribute to my Princess Leah - www.leahshope.us - I have your story on my page and am working on putting some items together for you guys. Can you please visit my site and let me know what you could use.

    Best Wishes ...
    Shelly Adams

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  5. If thoughts and prayers mean anything then know that you and your beautiful baby girl Leah have captured the minds and hearts of so many people everywhere. Stay strong and somehow you will pull through this. We are there with you in spirit as well as in admiration for your "fight" to find the cure for Leah.

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  6. Leah is so blessed to have such wonderful parents. You are all deeply in my thoughts during this very difficult time.

    May the Force be with Leah... always.

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  7. Have you tried contacting Mayo Hospital in Rochester, Minniesota? They have some great research people. I have been there- I too have a rare disease.

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  8. I just heard about this blog through a Star Wars fan group I have been a part of for years. I wish I knew exactly what to say to help you out but know that your word is spreading. I hope you are taking advantage of online groups like Marissa's Bunny (marissasbunny.com) and others where parents are struggling with children that have serious illnesses. Particularly nerdy parents!!

    May the Force be with you ALL. And I will hope and pray for healing for Princess Leah.

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  9. I'm friends with Debbie & Scott. I read this religiously and cry sitting at my computer screen because I feel so fortunate to have two healthy kids...and it pains me to know that your family is in so much turmoil. I pray for Leah and am continually thinking of you all.

    Dee

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