History

Journal History

Monday, November 11, 2002 at 01:45 PM (CST)

March 3 to March 21: PICU to Home
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Here we were, March 3, 2002 sitting in the PICU looking at Logan, intubated, exhausted. We new this was an entire different ballgame now.

We spent countless hours talking and meeting with teams of doctors, discussing what Logan’s future had to hold for him. We talked a lot about comfort for Logan, which was my main concern. If Logan was going to pass, I at least wanted him to be as comfortable as possible. We decided to extubate Logan and see how he did. I was terrified but was so glad when Logan did so well. The look on his face when he realized the tube was gone and he was breathing on his own. It was priceless! But, quickly, he started to not do so well. We had made the decision to NOT re-intubate, we had signed a DNR order. Everything was in place.

I can’t explain what happened to me in the hospital that week. All this time, I had fought Logan’s death. But, one day, a calm just came that said it’s time, Logan will be okay, and you’ll be okay. From that moment on, I knew the time was close and I began to prepare.

We decided to take Logan home to pass. Bill was a little more apprehensive that I was so we stayed just one more night in the PICU. The PICU staff arranged a private room for us just in case he passed that night. I will ALWAYS remember the wonderful nurse we had – I call her Texas Audrey. I didn’t want to leave Logan’s side but she made me – she made me go shower and she made me get something to eat…bless her! Well, when I returned from those errands, she had moved Logan’s crib out of the room and moved in a large twin bed. She said “I want you to take a nap with your son.” Logan was lying in the bed. I crawled in next to him, my eyes directly across from his. He looked at me like, “mom, what are you doing in my bed???” Audrey snapped a picture in that moment. Honestly, this was one of the happiest moments in my life. I hadn’t really been able to be close to Logan during this 9-day stay in PICU. To have him lying next to me, looking at me, feeling him, and touching his beautiful little self, was what it was all about. I was so grateful he was there. That photo she snapped is my very favorite photo!

So, Logan made it through the night and we went home the next day. Was very strange saying goodbye to the wonderful PICU nursing staff. We knew we wouldn’t be back and they knew that, too. We appreciated them all so very much!

So, for the next week, we had a continuous stream of visitors, family and friends, coming to say their goodbyes to Logan. Grandma and Uncle Ken came from Idaho and helped us around the house for a few days. It was a sad but wonderful time.

Arrangements needed to be made for Logan’s service, etc. I wanted to have that done and out of the way. I knew that I would be too much of a mess to deal with it after Logan passed. So, I made arrangements with a funeral home to have him cremated and scheduled an appointment with a Minister from a local Unity Church to perform Logan’s service. My friend, Pam, offered to handle all calls and arrangements that needed to be handled after Logan’s death. I was, and still am, so very grateful. So, I made an appointment for Thursday, March 21 to have Pam and I meet with the minister at my house to discuss the service.

The Minister, Marshall, arrived at 1:00. Pam and I made the arrangements for the service. Marshall got to meet Logan. Logan was snoozing but I woke him up to meet this very important man. Logan looked and looked at him, his hair was crazy as always (my, how I miss that crazy hair!). I’m sure it took everything Marshall had not to just break down! Marshall left. Okay, everything was set, all details were wrapped up, Pam had her call list for when the event happened. I could “rest” now. Pam left the house at around 3:00.

Shortly thereafter, Logan began to have a very difficult time. He was having apnic periods and he hadn’t been keeping his feeds down very well. As the evening went on, the apnic spells got closer and closer together. I knew in my heart and tonight would be the night. It was weird. It was like Logan waited all week for everyone to come say their goodbyes and for me to have all the arrangements ready before he decided to go. Literally, within an hour or two after the minister left, Logan began slipping away. Logan was looking out for his mommy, I just know it! Thank you, Logan!

The night nurse arrived at 11:00 p.m. Thank goodness, my very favorite night nurse, Amanda. Logan just loved her! When she arrived, I told her that Logan’s episodes were getting very close together, about 20 minutes apart, and that his SATS were dropping very low. I explained that tonight would be the night and that I needed her to be “present.” If she felt she couldn’t handle it, she had the option to go home, no hard feelings. But she stayed by Logan’s side, and mine and I’m so thankful.

What seemed like the longest night of my life just wasn’t long enough. Please read the next journal entry for the details of that incredible evening.

Monday, November 11, 2002 at 01:08 PM (CST)

Logan: Six months to March 2002
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The New Year came. 2002. Just didn’t seem as fun as it had in the past. Logan’s Grandma came to visit from Idaho and spent New Years with us. She was always such a big help and Logan just loved her!

January was a fairly stable month for Logan. We spent all of our time together just being and loving one another. But by this time, I was extremely exhausted so we finally got our insurance company to authorize home-nursing care. We had a night nurse four times a week, which gave me a much-needed break. At first it was hard to leave Logan with a “stranger” until I learned to relax and to trust the wonderful nurses we had.

Logan’s breathing became more labored and his secretions were requiring constant attention and suctioning. We consulted with an ENT doctor at Children’s Hospital to see if Logan was a good candidate for a trach. We decided against it, which in hindsight, I’m so very glad we did.

We proceeded with having a Bard Button placed on February 6th. I was extremely nervous about the surgery, as Logan hadn’t done too well with his first surgery. It took him quite a while to come out of anesthesia but he eventually did. I helped him get settled into his room for the night and ventured home to try and get some good rest. However, the phone rang and about 1:00 in the morning and we were informed that Logan had been moved to PICU as he was having a hard time breathing on his own. He was intubated. I was terrified that this was it. We spent the next four days in PICU. But Logan responded well and we got to come home. Yeah!

The rest of February Logan seemed to plateau in his illness. He was consistent. We went back to our daily routines and moved forward. We had a physical therapist that came to our home weekly and Logan seemed to be doing so well. He was moving his head and being very responsive. Although I had heard what the doctors had said, that Logan would die, it seemed impossible when I looked at him. Granted, all that was going on, it should have been clear to me. But I had so much HOPE that something would turn around, something would change. Remember, we still did not have a diagnosis so everything was speculative. I prayed continuously, there were prayer groups all over the country praying for Logan. People I didn’t even know! I was sure someone was on our side up there!

I slept with Logan every night – him on his Styrofoam wedge and me in my sleeping bag. But things were going so well. I wanted our life to be “normal”; I wanted to sleep in my bed with my husband, Logan in his crib, just like it should have been. So on March 2nd, I decided we would give that a whirl. I placed Logan on his wedge in his crib, brought all his equipment in his room, turned on the little glow bug nightlight, and put on some lullabies for him. I closed the door to his room and crawled into my bed. Ah, my bed. But I awoke to hear his oxcimeter alarming through the baby monitor. The oxcimeter alarmed a lot, even if his oxygen dropped just a little. I got out of bed, put my robe on, and went into his room. I wasn’t prepared for what I saw as I figured it would probably be another false alarm. I looked at the machine and it said his oxygen was at 60%. Couldn’t be. I turned on the light and turned Logan over (he had to sleep on his tummy). His face was bright red, turning a horrible shade of blue. He was looking at me with a horrified look, his mouth was in a frowny position and it was open. I looked back at the oxcimeter and it said 30%. I put Logan down and ran and got Bill, screaming “HELP ME!” Bill jumped out of bed, ran into Logan’s room, and put him on the floor. As Bill began CPR, I dialed 911. Bill couldn’t get a breath into so I tried. No luck. I turned Logan on him tummy across my arm to try to dislodge whatever was preventing us from getting a breath in. All of a sudden, he took a big breath and began to breathe on his own. At about that time, the fire department arrived. Logan was doing “alright”. We chose to transport him to Children’s Hospital via ambulance, just in case he had another episode. I sat in the back with him in the dark, laid out on a stretcher. I remember holding him so tight I was afraid I might hurt him. In the moment, it was such a reality of how unfair it all was. I was lying in the back of an ambulance with my eight-month old son whom I had just performed CPR on. The reality that he would die began to sink in. I hated life in that moment.

Bill met Logan and I at the ER and we discussed many end of life topics with the doctors there. Logan’s numbers were stable while we were there, his chest x-ray looked as good as could be expected, so we had the decision on whether or not to admit him for observation. We opted to take him home. We thought maybe he had just had a ball of phlegm or something that prevented him from breathing earlier. So, we went home.

We got all settled, and I desperately needed a nap. The adrenaline in my body from the earlier events of the day had taken their toll on me. So, I went to bed. Not long after, I heard Bill screaming from the living room for help. I ran to the living room to find my husband pulling Logan out of his swing, completely blue and not breathing. Logan had the most horrible, terrified, pain-filled look on his face. It’s one of the images that still haunts us today. Bill began CPR, I dialed 911. The fire department was there in less than a minute, I swear. They came in and took over for Bill. Bill crawled to a corner and cried uncontrollably. It was almost like I was outside of it all watching in. Firefighters everywhere, one giving CPR to my son, my husband in the corner, crying hysterically, filled with more fear that he had ever known. I couldn’t move. It was all too much.

So, another ambulance ride to Children’s Hospital, the second in one day. This time Logan was admitted to the PICU unit. This would be his last hospital stay at Children’s. This would be the time for Bill and I to make some hard decisions.

Tuesday, August 27, 2002 at 12:44 AM (CDT)

Logan’s First Six Months

Logan came home from the hospital and life was great! He was breastfeeding well, gaining lots of weight, and having great progress in his milestones. At one week of age, he could almost roll himself over completely. His neck strength was exceptional, too. We enjoyed our new life together!

But then at around three weeks of age, Logan started to projectile vomit after every feeding. His pediatrician thought it might be something in my diet so I altered my diet, removing all dairy and wheat. But his vomiting did not stop. We also noticed him clenching his fists all the time, with his thumb tucked in. We just thought it was cute, not knowing that it was a sign of things to come. Then at around six weeks of age, Logan began to cry non-stop, 24 hours per day. And not sleep. I would estimate that Logan would sleep five hours collectively in a 24-hour period. We also noticed he was not meeting milestones for his age. We began to realize that something was wrong and it wasn’t my diet!

One day I noticed Logan had a golf ball sized lump near his penis. So, another doctor’s visit was in order. We then discovered he had an umbilical hernia and an ilingual hernia. We thought MAYBE this is what was causing Logan to cry so much so we opted for hernia surgery.

SURGERY #1
Logan had his hernia surgery in mid-September, 2001, when he was only two and a half months old. We were so hopeful that this would help him out; however, it ended up doing just the opposite. Keep in mind, at that time, we did not have a diagnosis for Logan, short of colic. After the surgery, Logan was never able to eat on his own again. Also, we would never see him smile again. We figure now that the anesthesia sped up the Krabbes process, as anesthesia often does with diseases. After five days in the hospital for Logan’s failure to thrive after the surgery, we went home. He continued to not eat and the crying just got worse.

HOSPITALIZATION #2
Two weeks later we were hospitalized again for failure to thrive. At this point, I had been feeding Logan with a medicine dropper, which as you can imagine, was not effective at all. Logan had an NG (nasal gastro) tube placed at that time so we could at least get food into him. By the time I left that hospital, we had seen THIRTEEN doctors total, and ALL diagnosed Logan with colic. No testing was recommended to check for any sort of neurological problem. My frustration was extremely high and I left the local hospital to take Logan to Children’s Hospital in Seattle. Finally, we were on the road to some sort of clarity!

HOSPITALIZATION #3
Upon arriving at Children’s Hospital in Seattle, Logan was admitted for failure to thrive. We immediately were assigned several teams of physicians representing different specialties: genetics, infectious disease, neurology, etc. After several looks at Logan and review of his history, a CT scan was ordered. What they found upon review of the scan were calcification in the basal ganglia and thalamus portion of the brain and surrounding “dead” brain tissue. Still no diagnosis, but we knew there was something wrong. At that point, we were told that Logan would probably be mentally retarded so my husband and I began to process and plan for that. We also discovered that Logan was having seizure activity so we started him on Phenobarbital, a common seizure medication. We stayed at Children’s for about ten days before we went home. Still no diagnosis but many tests were being run and we were optimistic.

The next three months would be very difficult for Logan, and us. We continued to feed via NG, but the vomiting continued. Logan got thinner, very lethargic, and sleepy. In mid-October, Logan just quit crying. Just stopped. He also began to sleep through the night, which was something he had never done before. It was so strange – kind of like a switch was flicked to the “off” position. He would never cry again. How we missed his crying after that!

HOSPITALIZATION #4
In December, Logan landed back in the hospital with aspiration pneumonia. We spent fourteen days in the hospital. During this stay, we learned that Logan had severe vision loss and moderate hearing loss. We then understood why he was not able to track objects at all. After learning about Logan’s vision and hearing problems, we did a lot of touch games, books I could have him feel with his hand, baby massage, and some loud baby tunes for Logan. We came home the day before Christmas Eve. We were so ecstatic! Was a great gift for us. But this time, Logan came home with lots of equipment: oxygen, oxcimeter, nebulizer, a suction machine, and lots of new medications.

The doctors began to treat Logan for a disease called mitochondrial myopathy, a genetic disorder of the function of the mitochondria found in each cell of our bodies. If any of you know whom Mattie Stepanek the young poet is, he has mitochondrial myopathy. At any rate, we had no official diagnosis but he presented a lot of symptoms so we began to treat for it. We were told that Cerebral Palsy was a diagnosis that could come up so we also processed that.

The holidays came and went and Logan continued to struggle. The courage he had was phenomenal. Logan showed his love very clearly to us and we loved him so. Our mission was to give him all the love we had and to make his life as completely comfortable as possible. The New Year would bring a new set of challenges and decisions to make for Logan. Please read the next journal entry to hear about the final stages of Logan’s life.

Wednesday, August 07, 2002 at 01:19 AM (CDT)

LOGAN?S BIRTH

Logan Dane Windley was born July 7, 2001, just three days before his due date.

Around 4:00 a.m. that morning, I woke up in labor. We headed out to Puget Sound Birthing Center to meet the midwife and by the time we arrived, I was already dilated to a six. Things were going smoothly and we anticipated the baby to arrive by noon. Well hours passed, I was completely dilated and pushing, but still no baby. By 5:00 p.m., we realized the baby was very stuck so I had to be transported to the hospital.

The transport to the hospital was very Three-Stooge-like and quite hilarious. ?A Funny Thing Happened on the Way to the Hospital? would be a good movie title! My stepdad transported me in my car, following the midwife in her car as she led the way. Behind us was my best friend, Pam, and mother and behind her my other great friend, Kim. On the way out, Kim rear-ended Pam. Okay?deal with that later! But then, Kim got rear-ended by a police officer. No damage ? he sent her on her way. Then, the midwife led us to the wrong hospital. That was straightened out and she got us to the correct hospital; however, the last two cars in the convoy didn?t get that information and were walking around the wrong hospital! In the end, we all ended up together and in the right place!

There the doctors tried to turn the baby over, as he was ?sunny-side up? but they could not get him to budge. So, it was decided at around 7:00 p.m. to take the baby via C-section. Finally, at 7:51 p.m., Logan was born. We did not know the sex of the baby, but we were delighted to find out we had been given a son! He was absolutely beautiful! Lots of hair, healthy lungs, and a perfect 8.0 pounds.

We stayed in the hospital for three days. He was very healthy and took to breastfeeding immediately. No problems! The doctors did notice some shaking in his limbs that they thought might be beyond the normal newborn ?twitching? but testing could not find any reason for it.

Home we went. Beautiful Logan in the world and a mom COMPLETELY in love with him!

Tuesday, July 23, 2002 at 01:34 AM (CDT)

Hello to all~
I am currently working on Logan's story to place on his website. Thanks for your patience while we're "under construction!" Please feel free to look at Logan's pictures, though, and please return soon!
Blessings,
Sandy
Angel Logan's Mom

Wednesday, July 17, 2002 at 12:24 AM (CDT)

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