Transition

Initially I started my blog to keep people up to date on what was happening with Alli.  It was a way for me to document her medical journey and occasionally mix in my thoughts and perspectives on our situation.  My intention is to continue to blog about our family, including Alli, as I'm sure that as we navigate through the grieving process she will continue to make herself present in our lives.

During the last few weeks of Alli's life I was planning how I would transition to being more involved with her care.  We had the assistance of wonderful nurses, but I was concerned about insurance cutting back our nursing hours and I felt that I wanted to take a little more active role in her care.  Once hospice was involved I figured that they would be able to give me an indication of when she was in a more active state of dying and then I would work to transition to caring for her in those final days/weeks/however long it lasted.  It was a privilege to care for her.  The only reason we didn't cut the nursing off sooner was because of the level of care that she required and the impact that it would have on Samantha and Joshua.  The indefinite nature of her illness and the even the remote potential for recovery made us feel as though we were better off having assistance with Alli to ensure we could keep balance in our home.

Alli's daily routine, without medical appointments or therapy visits, consisted of the following:

5:30 am - give a small amount of apple juice through her g-tube to help prevent her from spitting up her morning medicine.

6:00 am - give lasix and depakote

8:00 am - give prevacid, onfi, aldactone, culturelle, folic acid, calcitriol, multivitamin, and potassium chloride.  meds were spaced 5-10 minutes apart to avoid overloading her.  Once she woke up, we would take off her bipap, put on her nasal cannula, give her a breathing treatment and an inhaled steroid.

9:00 ish am - after receiving her meds and breathing treatments, we would give Alli a sponge bath in her bed.  I had an extra changing table mat that we would lay on her bed and either I or the nurses would bath her on it.  We had hoped to get a bath chair for her so that she could sit in the bath tub, but insurance didn't come through on that and we were in the process of working on medicaid.  I did concoct a plan one day to bathe her in the infant tub rigged with a Puj tub (the Puj tub is awesome - by the way.  i still occasionally use it to bathe Josh :)).  So, I filled our infant tub with water and placed it on the floor of her bedroom.  Then I used the Puj to extend the back of the tub so that she would have head and neck support.  I placed her in the tub and thought everything was great.  She appeared to be somewhat relaxed and soothed by the water…until the stopper came out of the bottom and water flowed out on to her carpet.  I was so disappointed.  We never stopped trying to figure out ways to make her as comfortable as possible.

10:00 am - levocarnitine

usually after her bath, we would get Alli out of bed on to the floor.  we would do passive range of motion exercises (Jane Fondas - according to nurse Carol), read books, listen to music, work with sensory toys, etc.

12:00 pm - synthroid

usually by now, Alli was ready for a nap, or already sleeping.  sometimes she slept on the floor with pillows and blankets around her.  other times she would nap in her bed.

2:00 pm - depakote and lasix

after her 2:00 meds on nice days we would try to take Alli out for a walk in her wheelchair.  if it wasn't nice weather then we would try to bring her downstairs to be with us or out on to the patio.  some days she stayed in her room and Samantha would go in and visit her there.

7:00 pm - start of the bedtime routine- usually changed in to pajamas

8:00 pm - prevacid, onfi, and potassium chloride followed by breathing treatments then we put the bipap on

10:00 pm - depakote, lasix, and levocarnitine

Throughout the day Alli would go back on her bipap machine.  She was supposed to be off for 3 hours than on for an hour, 3x per day.  Then she wore the bipap machine over night.  When she was awake on the bipap she would produce a tremendous amount of foamy secretions from her mouth.  We were constantly wiping her mouth to help keep it clear.  Usually by the morning her lips would be chapped and we would begin the process of moisturizing them.

We had to be very conscientious about giving her medication as there were many times when she would spit it up.  Therefore, we tried to make sure someone was always in the room with her and that we didn't jostle her around too much after receiving a medicine.

Alli was connected to her feeding pump for 20 hours each day.  She had a special formula of single calorie pediatric compleat mixed with pedialyte and lite table salt.  We chose compleat because it is a whole food based formula, as opposed to a chemical based formula like pediasure.  She tolerated the compleat better than the pediasure and it was a compromise for me when the whole food blended diet I attempted didn't work out and couldn't be maintained in the hospital.

Maintaining the above schedule for her, without the extra hands, seemed impossible on a long term basis without neglecting Jason, Samantha, and Joshua.  I had hoped to be able to do it for a period of time, but perhaps it was better that we maintained the balance through the end.  I know that I cherished and took advantage of every opportunity that I had to personally care for her when we didn't have nursing available and I am so grateful for those days and nights.  I viewed them then and still now as a gift.

On the days the nurses were here, often there were errands to be run, prescriptions to pick up, the medicaid application to be filed, calls to the doctor, appointments to be made, etc.  There was never a shortage of things to do and there was always something to do throughout the day for Alli, even if I wasn't in the room with her helping with her meds and playing on the floor.  I am so grateful that we had such wonderful nurses to engage with her during the day while I was taking care of those other responsibilities.

So, now we transition to quieter days.  I find myself a little less distracted and better able to focus on activities with Joshua and Samantha.  Samantha still asks me if Sylvia and Carol, Alli's nurses, will be coming back.  I explain to her that they were here to care for Alli and that we might see them occasionally, but not every day.

We took Samantha to the cemetery on Tuesday to place the temporary headstone on Alli's grave.  She does not know that Alli's body is buried there.  For now we told her that our piece of land there is a special place where we can go to remember Alli.  When we pulled in, Samantha asked from the back of the car "is this heaven?"  I told her no, that it was a special garden where people came to remember people they loved who had died.  Some other questions that have come up - when is Alli coming back?  Does Alli have her machines in heaven?  I cringe every time I have to tell her that Alli is not coming back.  I tell her that we carry her in our hearts and that she is with us everywhere we go, but her body is not coming back to us.  The conversation about machines in heaven was a good one.  It was more comforting to explain to her that when a person goes to heaven they don't need machines, that there body becomes like new and there is no more pain and suffering.  There is great relief for me in that explanation.  Below is a photo of the headstone…

On a personal level I have had to get comfortable to the change in our house and our day to day lives.  In some ways I am thankful for the time we had to transition from being a family of 5 to a family of 4 +1 angel.  We had been out without Alli a few times and had taken photos of the 4 of us together.  To me it always seemed incomplete without her, but I knew we needed to move forward for everyone's sake.  I feel like I have been grieving her death for 8 months already, since the night in February that I had to call Jason to come back to Egleston because they had intubated Alli and placed the central line.  Though she ultimately survived that hospitalization, to me it was clear from that night on that her life was in serious jeopardy.  Her care had evolved to such an acute level that any type of complete recovery would have been miraculous.  For that night and the months that followed I had to get used to other people caring for her around the clock.  I lost the ability to hold her on a whim without any devices attached to her.  Getting her out of the bed was a production and it was difficult to make her comfortable with that tube down her throat or the full bipap mask on her face.  I missed then and I miss now the feeling of holding her and her sinking in to my chest and lap.  It was an indescribable feeling of peace.  I will never forget holding her the day before I delivered Joshua.  Wondering if that was the last time I would hold her, not knowing what the future held for her given how sick she was.  I was envious of the nurses who spoke so freely with her as they went about their work caring for her.  They never made it seem like work.  I never knew what to say to her while she was lying there.  I know that it is part of their job to talk with the patient.  I just often times found myself speechless and I would just sit there with her.  Even now, knowing she is in heaven, I can't find the words.

Ok - let's end on a good note.  Joshua is almost crawling.  He is getting on all fours and rocking back and forth and I swear he inched himself forward today.  He slides himself backward on the hardwood floors.  He's like a human swiffer.  We also had a fun impromptu visit to the park on Wednesday.  It was nice to be able to go on a whim.  Josh didn't have a coat or socks (yikes!  bad mom!), but I did have a warm snuggly blanket to wrap him in.  Below are pictures of him and Samantha on the swings.

Slideshow

Below is the youtube link to the slideshow I made for the funeral weekend.  It had music, which was deleted upon upload due to copyright issues.  So, pretend to hear Here Comes the Sun, Somewhere over the Rainbow, and Angel, while you're watching it.  Enjoy!

http://www.youtube.com/watch?v=UMLjl9H_fJ0&feature=youtu.be

Donation Information

We have received many requests regarding donation information.

Below is a link to an online donation form for Children's Healthcare of Atlanta.  Alli received care in the following departments:  Cardiac Services, Palliative Care, Cardiac Intensive Care Unit, Pediatric Intensive Care Unit, and Rehabilitation.  If you wish to direct your contribution to a specific area in the hospital, those were the areas that made the greatest impact on her care, particularly the cardiac units and the palliative care team.

https://giving.choa.org/sslpage.aspx?pid=298

Below is the link to an online donation form for Hospice Atlanta.  We request that if you donate to Hospice Atlanta (Visiting Nurse Health System) that you direct your contribution to the pediatric hospice program.  The pediatric hospice program is funded by donations and ensures that families enrolled in pediatric hospice care do not have to pay for any portion of the services provided that are not covered by private insurance or medicaid.

https://vnhs.thankyou4caring.org/DonateNow

We thank you for your generous support of these organizations that made such a tremendous impact on Alli and our family.

The missing post...

It has been a week since Alli passed away.  In some ways it seems like an eternity and at the same time it feels like it was just yesterday.  So, what happened…

Last Wednesday morning began like many others.  My mom had traveled back to Detroit the day before and we were having a slow start.  Jason left early to drop off his car at the dealership and head downtown for a full day of meetings with a client from out of town.  I quickly got Samantha dressed for school, fed her breakfast, and put her and Josh in the car.  I remember her asking to run upstairs to tell Carol and Alli goodbye before she left for school.  I don't remember if I left her go or not.  Not important.  

After I dropped Samantha off at school I called the pharmacy to have one of Alli's prescriptions refilled.  Then I called Carol to let her know that I had a couple of errands to run, including the trip to the pharmacy, which was about 25 minutes from the house and to call me if she needed me to come home.  She assured me all was well at home and that she was about to give Alli her bath and breathing treatment.  I then proceeded to drop off the dry cleaning and take a box of clothes for Millie to the post office.  As I was leaving the post office I received the call from Carol telling me to come straight home, that Alli was requiring 3L of oxygen.  The drive home, which on a good day is approximately 12 minutes, felt like an eternity.  On my way I called Jason downtown to let him know what was going on and to keep his phone available in case I needed him.  I then called Carol back.  It seemed like forever before I arrived back home.

When I finally arrived back home around 9:30 it was clear that Alli was deteriorating quickly.  I called our hospice nurse who advised me to give Alli a small dose of morphine and that she would be at our house within the hour.  I called Jason back at the office to give him the update and let him know that he should come home.  I climbed in to bed with Alli and held her as we put her bipap mask back on and began the process of turning up the oxygen to try to get her oxygen sats back up.  The chaplain prayed with me and helped me put some of our Lourdes water on Alli's lips.  By the time Jason came home, she was sitting on 5L of oxygen through the back of the bipap.  Eventually we turned it up to 10L - so much oxygen that it was pouring out of the back of the machine.

In the meantime, we called our parents to let them know what was going on and found Samantha a ride home from school.  When it became clear that the oxygen and the bipap wasn't helping, as Alli's sats dropped lower and lower, we made the decision to turn off the bipap machine.  Jason, Joshua, and I sat with Alli until Samantha arrived home from school.  Jason and I each had time holding her.  Once Samantha arrived home I went downstairs to meet her and explain what was going on.  She joined us in Alli's bedroom.  We turned on Alli's mobile, which she often listened to throughout the day, and I read her what had become our favorite book Wherever You Are my love will find you by Nancy Tillman.  After Alli had been quiet for a little while I asked Jason if I could hold her and had him get the stethoscope.  When I put it to her back there was silence.  It was an indescribable feeling.  We laid her on her bed and called the hospice nurse to come back in to her room.  She pronounced her dead at 1:15 pm.

The funeral home came later that evening to meet with us and take Alli in to their care.  They carried her out of our house wrapped in blankets in a Moses basket.  The medical supply company came to pick up her equipment.  The only way I can describe it is like the feeling you have after you take down the set from a play.  Her room looked so bare and the silence was deafening.  I would never hear Samantha say again, "Mommy, can I go peek in?"  That is what she would say every morning and every day after school when she wanted to visit Alli and her nurse.  Alli's room was her refuge during the day.  She would sit and play with the nurse's nook, lay in Alli's bed and look at books and listen to music, help the nurse put lotion on her.  She loved being in that room.

Over the course of the following days we planned and had the mass and burial.  The eulogy I delivered at the mass is included below.  I'll never know how I managed to get through it.  I am the person that can't pull it together at the funeral of a stranger.

And now, after the mass, after the burial, after the visitors have come and gone and our parents have started to go home, I find myself searching for Alli.  When I prepared myself for her death over the course of months leading up to this, I comforted myself knowing that she will be with us no matter what.  But I don't feel her right now and I can't find her.  I know that she is in Heaven, but it is as if she has been pulled aside in to some remote corner.  My hope is that she is cradled somewhere, being comforted, and told what a wonderful job she did.  She endured tremendous suffering.  I know that she will come back to me.  I don't know when that will be, but I find myself yearning for the feeling that she is with me.

Samantha is doing reasonably well.  We had been prepared in advance about what to expect from her - that she wouldn't necessarily experience continuous sadness, but that she would maybe be sad for a time and then ask to go out and play.  So, we meet her where she is at the moment and don't place many expectations or judgments on her.  She told Jason and me that there were angels in the room with us when Alli was dying.  She repeated that to my dad in a separate and independent conversation.  One quick story about her and then I will conclude for now - One of our neighborhood friends came over on Sunday afternoon and told Samantha, "I'm sorry for your loss."  To which Samantha replied, "Alli is not lost.  She was just visiting us on her way to Heaven."

Eulogy:

Trish Phillips writes, “The butterfly symbolizes transformation and joy. Its dance reflects the need for movement from where we are to our next phase of being.  Butterflies appear to dance as they flitter among the flowers. They remind us not to take things so seriously within our lives. They awaken a sense of lightness and joy. They remind us to get up and move, for if you do not move, you cannot dance.”

From the very beginning we strongly aligned Alli’s life with that of a butterfly.  We knew before she was born that she herself would physically endure many transformations, but that there would be great joy interspersed among them, and that once she emerged she would thrive.  Truthfully, or maybe selfishly, we assumed that the butterfly symbolized her existence, without realizing that the true transformation would really occur within us.

While Alli was in utero, we learned that she would likely have down syndrome and that she had a series of complicated heart defects.  We accepted that her life, as well as ours, would take a different course and made preparations for her arrival.  

When Alli arrived on July 1, 2011, we were encouraged by her strength and we ourselves were strengthened by her very presence and grace.  All of my anxiety and fear about what Alli’s future held subsided the first time I held her in my arms after she was born.  Her early weeks of life were strikingly similar to that of the typical newborn.  Full of diaper changes, nursing, tummy time, long naps, play time on her activity mat, and lots of cuddles.  Just holding her in those early days and weeks brought indescribable peace.

Alli’s onset of infantile spasms at around 4 months old set forth a chain of medical events that would profoundly change the course of her life, as well as ours.  From that time forward we found ourselves aggressively trying to chase down cures for one ailment after another, at each step hoping that once we cleared the hurdle in front of us she and we would return to the path on which our journey together had begun.

Many people assisted us in caring for Alli during this time.  She saw a variety of pediatric physicians, nurses, and therapists who shared a common goal of trying to give her the best life possible.  She bravely endured countless surgeries, tests, labs, and treatments in the hopes of curing her ailments.  Her home nurses cared for her as if she was their own child and gave Jason and me the ability to divide our time between each other and each of our children.  They allowed us to have some sense of balance in our life.  Along the way we met new friends and were humbled by their generosity and graciousness.  We had a faithful network of prayer warriors lifting Alli and our family up in constant prayer.  I believe it is their prayer that gave us the strength to face the challenges set before us each day.  They reassured us that Alli was surrounded by angels at all times.  Our co-workers at Deloitte supported us through the coordination and preparation of meals, many of which were home made and hand delivered.  They graciously allowed Jason the flexibility to work from the hospital or home and encouraged him to meet the immediate needs of Alli and our family when necessary. All the while we were supported by our family and friends.  Our parents spent countless days and weeks in our home helping with household chores, running errands, and caring for Samantha and Joshua.  Our siblings and extended family sent constant words of support and expressions of love from a distance.  We had visits from family and friends when we were unable to travel to see them.  When we were able to travel, we took Alli to meet her family and friends in Detroit, Chicago, and Raleigh.  She met nearly every living relative she has and is deeply loved by each of them.  Each of these people has told us that their life, in some way, has been transformed by Alli.  

In the last weeks of Alli’s life we are so grateful that she was able to be home with us.  We enjoyed taking walks with her on nice days, reading to her, Samantha, and Joshua in her bed, sitting with her on our back patio, and including her in family meals and gatherings when she was able.  We tried to make her time at home with us as comfortable for her as possible.

On the day she died, Alli was surrounded by Jason, me, Samantha, and Joshua.  Jason, ever her protector, cradled her in his arms as she took her last breaths.  We know now that she is living a life free from the encumbrance of medical devices and physiological limitations and that she is able to dance freely in the company of her creator and the many loved ones that went before her.  

I leave you this afternoon with the words from Alli’s birth announcement.  “The butterfly is a symbol of change, joy, and transformation...our lives have been forever transformed by the life of Allison Claire Hakerem.”  With love, Jason, Megan, Samantha, and Joshua.

Funeral Arrangements

Saturday, November 9, 2013

Visitation and Funeral Mass at Our Lady of the Assumption Catholic Church

12:00 pm Visitation

1:00 pm  Mass of the Resurrection

Our Lady of the Assumption Catholic Church
1350 Hearst Drive NE
Atlanta, GA  30319

Burial will follow at Arlington Memorial Park
201 Mt. Vernon Hwy NW
Atlanta, GA  30328

Sunday, November 10, 2013

The family will receive visitors in their home after 2:00 pm

Monday, November 11, 2013

The family will receive visitors in their home after 4:00 pm

In lieu of flowers, donations can be made to Children's Healthcare of Atlanta or Hospice Atlanta.  Information will follow regarding how to make donations.

Halloween and All Saints Day

It finally feels like there is a break in the action.  Samantha's birthday plus Halloween in the same week is exhausting.  Since I already wrote about Samantha's birthday, we'll skip to Halloween.

We started with pumpkin carving on Sunday afternoon.  We took Samantha and Josh to the local church parking lot to pick out a pumpkin and then went out for ice cream at the Frosty Caboose (Samantha's favorite!).  We sat out on the back patio with Alli and carved our first family pumpkin.  I would love to say it was something right out of a Norman Rockwell painting, but it was full of me asking Samantha to get off my back as I wielded the butcher knife.  In the end, we were left with this…

Everyone survived and we got a nice family photo out of the deal :)

We had joked about dressing up the entire family for Halloween this year.  We celebrate with wonderful friends who dress up as a family and so we thought maybe we would get in to the fun.  As time went by I figured we had given up on the idea and I let it go.  I'm not a huge fan of Halloween anyway.  But then, on Tuesday, my costume from Jason arrived in the mail.  So, I had no choice but to muster up my accountant level artistic skills to create Jason's costume.  In the end, this is what happened…

Not too shabby…  I didn't think it would be kind to dress up Alli (although I realized later that I had a cookie monster shirt for her), but she did have her own special holiday outfit and I managed to catch her in this moment with Samantha…

Samantha has been spending a lot of time in Alli's room.  I wish I could capture every moment they are together.  Alli's special holiday outfit…

We enjoyed visiting with friends and trick or treating around the block.  Samantha landed a healthy stash of treats to share with the family and now we are on to Thanksgiving!  

For those of you who aren't Catholic, November 1 is All Saints Day.  It is followed on November 2 by All Souls Day.  All Saints Day is the time that we honor and celebrate our Catholic role models.  It is a holy day of obligation and so I went to mass last evening.  One of the rare times I have been able to go to mass on my own.  I arrived early and had some time to clear my thoughts.  I haven't written much about how Alli is doing the past few weeks, as I struggled with how to deliver this message.  She has been resting comfortably at home since her last admission, however, since she has been home, we have started the process of working with hospice.  Alli is in respiratory failure, which will likely be a terminal condition.  Her breathing is currently supported with the bi pap machine at night and during short intervals during the day.  Hospice has been wonderful and I will gladly discuss that process with anyone who wants more information.  The point is that we have come to understand that Alli's life with our family will be shorter than we had hoped and we have had to confront her eventual mortality in a very real way.  So, as this has been going on, I found myself in tears (yet again!) during mass last night.  Not the whole mass.  Just certain parts.  It is so hard sometimes to sit there and sing "Glory to God in the highest" (literally) with all of this going on.  As I sang last night I could feel my very breath being sucked out of my chest.  But, I continue to sing, because in all that we do to care for Alli and each other during this process, we are giving Glory to God.  We may not be singing the words as we go along, but I have to believe that He is pleased with our efforts.  As the priest explained last night, All Saints Day is about ordinary people who lived extraordinary lives.  It isn't limited to just the canonized saints.  We all do extraordinary things during the course of our life that please God.  So we honor and celebrate our role models and endeavor to emulate their extraordinary efforts in some facet of our life.