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.