Everly Update January 9, 2015

Saturday, January 10, 2015

Sister love!! I know I haven't touched base here since shortly after Christmas. Busy, busy. So, to get caught up with our current status, here's a quick update. Everly was finally discharged on Friday, January 2. We were able to discharge with the necessary cpap after two successful nights using it in the hospital.

Unfortunately, our stay at home just wasn't to be. We ended back in the hospital as of this past Monday afternoon. Here's why:

Friday through Sunday evening, Everly was quite congested but jovial at times and pretty laid back. However, Sunday night when she went to sleep, she began a several hour stretch of almost non-stop sneezing and coughing. It was so bad, so intense that we eventually turned off the cpap machine because the nasal prongs were blocking the secretions. The concerning part for us was that her oxygen needs slowly began to creep up. 1 liter, then 2, then 3, then 4. It was an easy decision to call the pediatrician Monday morning to see what was going on.

Side note about pediatrician: As of that Monday, we actually had not confirmed a pediatrician yet. I had called this particular one on Friday but had not heard back if she would take Everly on as a patient or not. So, that morning when I phoned, I wasn't even sure we had a pediatrician anywhere to go to! Luckily, the office welcomed us and allowed us to bring her in right away and let us head straight back to a room, bypassing the waiting area. Once there, the doctor ran a couple swab tests and an RSV screening. The RSV screening was negative. However, the doctor was able to extract gobs of secretions and the thickness and color made her suspicious so she ran a viral/bacterial panel. While we wouldn't get the results showing a new bacterial infection until the following night once we were already in the hospital, she was concerned at this point.

She advised us that we should head into the hospital right away with Everly because she was worried her respiratory needs would progress throughout the night. I really DID NOT want to go anywhere near the hospital AGAIN so I asked her about just treating her at home. She said we could be she was concerned and didn't advise it at all. So, in keeping with my not wanting to go to the hospital, we headed home to try to ride this out. Well, I guess our pediatrician is THAT good because she called it. Everly's respiratory needs quickly became too much for us to be able to support at home. Our machines literally could not provide her the oxygen her body desperately needed. So, we knew the only decision we could make was to head to the ER which we did. **Her bacterial infection affected her respiratory function. It's common in most of us but for Everly, NOTHING is easy.)

Everly seemed "okay" in the ER and even up in PICU for the first few hours on the high amount of O2 she was on. However, as the night wore on, she most definitely was feeling the way her SAT's were looking. Mom was with me at this time and we knew how serious her situation was becoming. The room quickly became a hotbed of activity and the doctor was intense and then the next thing I knew we were having serious conversations about our wishes.

I will skip all the details at this point because I would rather not relive the gut-wrenching angst and emotion that came with the night and the following day. There was no one moment of life-saving techniques but rather a continued worry that she was nearing her end, like her body was giving out. Because of her Trisomy 18 and all that goes with it, it is impossible to know how she will respond to various situations. The various doctors that saw her weren't necessarily bubbling with excitement at her prognosis at this point either. The situation was nothing short of terrifying. That 36 hour period of time is one I'm just happier to leave behind. For good.

We are so blessed and God is so good...all the time! Even in the midst of this night that I would rather not have experienced, God orchestrated a team to be in place to best care for Everly AND US. So much of what happened was a blur. But one thing I do know is that we were supported not only by God but by those dedicated professionals in our room. One of my all-time favorite nurses, Joey, just appeared out of nowhere with an arm around my shoulder, a hug, words of encouragement. He was not even our nurse that night, though he has been so many nights before, but he made it a point to be there for us...not to deliver medicine, not to check vitals...but to solely stand in support of Everly and us. Others, including Kelly, the PA, offered those reassuring smiles, glances and hugs to let us know that we were all a team working for Everly. Kelly had the whole floor to be concerned about but she was there as often as she could, answering our questions and even offering info when we couldn't think to ask. Dr. Chapados, the intensivist on call, jumped in feet first with the hard conversations for us and then even went for an IV line herself when others couldn't get one. She worked arduously to stabilize Everly and assist her within the guidelines of our wishes. She never gave up on her and continue to move forward. This team included many others as well who, though I have not specified here, were instrumental in our life that night. We thank each of you for your part.

Fast forward from Monday night to Wednesday morning. She looked a smidge better clinically, though physically she was in need of a nice bath and fresh clothes. She had been in the same sleeper, same bloodied (from IV) sheets, same everything since Monday due to the seriousness of the situation. But it was time. Our sweet dayshift nurse Lauren, assisted by a PICU nurse in training Maylin, stepped up and offered to bath and change Everly, change the linens and just start the day fresh, erasing all reminders of the night before. I am so thankful for that because I didn't even know where to begin and was just at a loss. Wires, cords, beeping machines, a fragile baby tethered to poles on opposing sides of the bed...not a clue. It changed the whole mood of the room and of our spirits. Thank you ladies! I'm so glad you know when to just take the bull by the horns! lol

It was obvious that this admit was different than before however. The doctors did not sound hopeful that she would/will make a full recovery. They wanted her to, of course, but given all that she's gone through for the past two months, they just weren't/aren't sure. This time it was a culmination of all this time, energy spent working hard, changes in her PH balance, the changes to her body working...any one of these things could cause her more problems now. But we remained/remain hopeful.

On Thursday morning, the topic of discharge was discussed. The doctors, we think, were encouraging discharge because if it were her time still, they would rather us spend it together at home. I brought up discharge because for me it was important to keep her away from as many of those yuck germs as possible. And the best place for that is at home!

Our beloved Nurse Joey! Always happy and fun to be around!

In the midst of all this, our angel doctor, Dr. Niebauer visited us again and was such a ray of light for us at a time when we needed it the most. She was not downtrodden but rather hopeful, like us, that this was just the case of a baby trying hard to overcome a lingering cold and a new bacterial infection. With proper medicine, rest and the hands of God to bring her through, we felt that her recovery was/is just around the corner. We thank you, Dr. Niebaur, for being there and for believing in Everly! May blessings be always upon you and your family!

The doctors were agreeable and working towards that goal as well. Knowing she had picked up this new bacterial infection while inpatient was all the more reason we needed to be at home. This time going home was not about me being sick of the hospital but of keeping Everly in the safest place possible. So, by mid-day, we had our walking papers and were heading home!

So, as of today, 1/10, we are home and she is doing SO much better. I would not dare to say great but getting there. She can go short periods awake without 02 but sleeping is still on 02. At night, she uses the bipap (doctors changed the setting to this rather than cpap) at night now. She's resting well and has several awake, alert and happy smiles throughout the day. She still requires much suctioning and her nose runs more than a marathoner but drainage is a good thing! She is on continuous feeds (meaning small feed running 24 hours a day) to keep her body from having to work too hard to digest a larger amount in a shortened amount of time.

We love you, Lauren!

It is at these times that I am reminded of the poem "Footprints in the Sand" when the man, who only sees one set of footprints in the sand asks why The Lord is not with him during his times of trials. The Lord responds that is the time when He has carried you. I have read and seen this poem my whole life but never before has it been given personal meaning...until now. I know that in these past ten and a half months, The Lord has no doubt carried us. We as humans alone can't do this life by ourselves. I'm so uplifted to know that He is there to carry us through. He provides for us on earth...people, opportunities, knowledge...in ways that only He can.

With love and appreciation,


P.S. Do you know that Everly is turning ONE NEXT month?? I am in awe of her superhero strength and so with that in mind, that will be our theme for her party: superheroes! If you are interested in attending, the date is February 21 from 3-5 p.m. in Westchase. More details later.

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