When Life Meets Death
Granted it wasn't really a blog and being that it was done back in 2002, you get the idea. I would update this first thing when ever we got back home or left for the hospital.
I was making 2-3 round trip to Tacoma from DuPont daily and sometimes more. During the last event I was actually driving home to let our dogs our when Erin called with the terrible news. So needless to say it was the longest drive from home to the hospital. I remember like today, it was pouring down rain and I used the 119 exit and turned around and headed right back.
JAN 6TH, 2002
| 8:12 AM | Ryan Delivered via C-Section. He was taken to NICU the moment after delivery, just a quick glimpse of the baby is all we had. |
| 10:20 AM | We carted Erin over to NICU to see Ryan for just a short few minutes, then returned to her new room. |
| 3:00 PM | Ryan underwent his first of many surgeries |
| 4:20 PM | Ryan comes though surgery ok, and is put on a tiny little ventilator to help keep him sedated. |
| 11:00 PM | We spend about 30 minutes with him that night, he is snowed on pain killers |
JAN 7th, 2002
| 12:15 PM | Ryan is still sedated and many more tests are being performed all day |
| 4:30 PM | We spent time with ryan today and changed his diaper |
| 07:30 PM | Dr. Ghandi talked to us about the renal problems |
| 10:34 PM | I am going back to the hospital to be with mamma, tomorrows a new day |
JAN 8th, 2002
| 12:01 AM | Went down to see Ryan, changed the ventilator mask, one of the first time to see his face. |
| 5:30 AM | Called it a night. Ryan seems to be doing well and handling his own, still sedated. |
JAN 9th, 2002
| 09:00 AM | Orthopedics looked at him today and surveying the situation. |
| 4:00 PM | Ryan is supposed to come off the ventilator. |
| 4:45 PM | Ryan coded tonight after being brought off the ventilator. He is still to sedated to breath on his own |
| 4:50 PM | They put him back on the ventilator |
| 8:00 PM | Erin was able to hold Ryan for a few minutes while he is still on ventilator. |
JAN 10TH, 2002
| 11:30 AM | Ryan has successfully passed a stool, meaning the first surgery has shown success. |
| 5:00 PM | Erin will meet with the neuro-surgeon and genetics team tonight, while I start the Washington State Police Reserve Academy. |
| 8:30 PM | Ryan started on pedialyte, so he has a feeding tube now. |
| 10:00 PM | We tucked ryan in for the night, as we leave for the night. this is the hardest part for erin, and it's not any better this time around. |
JAN 11TH, 2002
| 6:00 AM | Because of all his tests, he had to be transfused this morning, he was low on blood. |
| 12:00 PM | Went up to see Ryan. He is still sedated and on the ventilator |
| 6:00 PM | He starts on milk tonight, so he is making progress. They hope to wean him off the vent in the next few days |
| 7:30 PM | Ryan is left sleeping, and slowly weaning off the vent though the night. |
JAN 12TH, 2002
| 12:00 PM | Ryan is doing well. He has stopped being weaned from the vent, they will try tonight after midnight. |
| 7:30 PM | Aunt Brandi came to see Ryan for the first time. |
| 9:00 PM | Ryan was weighed, 9lbs 10oz |
| 9:45 PM | Ryan started to finally awake from his drug induced state. He was very angry about the ventilator and just cried, but Erin calmed him. |
JAN 13TH, 2002
| 12:00 PM | Ryan doing about the same. His blood gas levels were lower. |
| 2:00 PM | Ryan dawned his new sunglasses for some photo therapy. I don't think he liked it too much. |
| 2:45 PM | Grandma Sherman and Uncle Mike came to see Ryan |
| 6:00 PM | Ryan's blood gas levels were checked again, and even better. He may come off the vent! |
| 9:00 PM | Ryan's blood gas levels shot very high, they have stopped weaning for tonight, so he remains on the vent. |
| 9:45 PM | We say goodnight, for the 7th time now. |
JAN 14TH, 2002
| 3:00 PM | They removed the vent from Ryan, or turned it off I should say. It failed again for the second time. |
| 1:30 PM | Ryan is doing ok, he is really awake and REALLY upset about the vent down his throat. He cries allot, but you can't hear it, you can only see it on the heart monitor. Erin seems to be near her wits end. She is really struggling now with seeing him try to move and cry. He's just a sick little boy. |
| 2:00 PM | He has a little wrist brace he wears now all the time, except for his 1/2 cares. It's only temp. |
| 3:00 PM | Ryan is having trouble with his blood gases. He is really upset, they put him back on morphine. They also tried to loosen secretions and were somewhat successful. The vent will stay for a few days. |
| 6:00 PM | Ryan is finally sleeping again, it's been a rough 2 days for him. Grandma Boyles came to see Ryan. |
| 8:45 PM | Ryan is finally sleeping again, it's been a rough 2 days for him. Grandma Boyles came to see Ryan. |
| 10:45 PM | Erin made one of her nightly calls to the NICU. Ryan is still resting comfortably. |
JAN 15TH, 2002
| 12:16 AM | Erin calls for blood gas results to see if he is getting better. They have cutback the morphine and the vent is back down to a low setting. Awaiting the blood gas results. |
| 12:45 AM | Erin calls for the blood gas results. |
| 11:15 AM | Ryan started developing an irregular heartbeat. They had to bump up the morphine because of the pain. We heading down now to meet with the doctors. |
| 2:30 PM | Ryan has started Congestive Heart Failure. His lungs are so saturated that he can't breath on his own. He is taking meds for his heart now. They really don't have a straight answer about surgery, or what the next step is. |
| 3:30 PM | The Doctor let us know this was a long road ahead, and the outcome isn't always a happy ending. Erin is holding her own barely, it seems every 20 minutes there is a new tear on her face. |
| 5:00 PM | Took a break from the Hospital. Heading back at 11PM. Just to be by his side, he is getting little everyday. Grandma Sherman came to visit Ryan again, and same with Grandma Boyles. We have the best moms you could ask for. |
| 11:30 PM | We leave to see our little king. |
JAN 16TH, 2002
| 3:45 AM | Ryan is resting. His numbers for his Kidney came back, and the results are not good. He is retaining alot of fluid. We are heading home for the morning. He also seems to have an ear infection now as well. |
| 11:48 AM | We woke up about 45 mins ago, and heading back to the hospital. We will try to meet with the cardiologist in determing Ryans outcome. They are worried he is still too small for a successful surgery. |
| 6:30 PM | We met with Dr. Wolf from Cardiology. Ryan's heart defect is severe. We are told we will have to make the decision based on the anomalies if we should put him though that. I think as I write this, we are going to be faced with the most difficult decision in our life. Who am I to determine someones life???? |
| 10:10 PM | We came home to more wonderful emails and guestbook entries. They continue to help us though this time. Everyone has been so understanding and helpful to us. I just wish we could be as helpful to Ryan. |
JAN 17TH, 2002
| 12:30 PM | Dr. Trippel met with us today. They are going to perform a heart cath on Ryan tomorrow afternoon. They suspect Lung Disease, and some other issues, and want to check out his plumbing. They will determine if surgery is even plausible. This has to be the hardest day so far, knowing Ryan's outcome is very poor. |
| 2:30 PM | Grandpa Boyles came to visit today. Grandma Sherman came as well. |
| 5:00 PM | Aunt Brandi and Uncle Jereme came to visit today as well. |
| 8:00 PM | Dr. Wolf came by again, to see how we were doing. We find out his chest cavity is smaller than normal and his lungs would have a hard time functioning on their own. This was enough news that we could take in a day. The hospital is putting us up in a room tomorrow, since his heart cath test is tomorrow. This is a great gift, the rooms are first come first serve and are paid for by donations from the community. |
JAN 18th, 2002
| 10:30 AM | We arrive early to make sure Ryan is ok before the surgery. |
| 12:30 PM | They come to pick up Ryan and transport him upstairs to the Cath Clinic. |
| 3:45 PM | Ryan returns pretty well sedated, he went though the procedure just fine. |
| 4:00 PM | Dr. Trippel informs us of some concerns but wants Dr. Hall the Surgeon to look at them and decide. |
| 5:00 PM | Dr. Hall meets with Erin, and breaks the news to her they won't do the surgery, it will be too much pain for such little results. |
| 7:00 PM | Dr. Knudson talks to us about our choices. |
| 7:30 PM | Erin and I take turns holding him in the NICU. |
| 8:55 PM | Ryan has left us in this world, and we hope he will remember us for the short time he was here on Earth. |
| 11:21 PM | My final note into the log, my son lost his battle, but I don't want to discourage others from battling on with this terrible syndrome. Remember to Fight, Fight, Fight, and Ryan fought till the end. |
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WE LOVE YOU RYAN Mom and Dad |
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