Preston's League

Updates

Update 5-19-12

Posted by Celeste Winslow on May 19, 2012 at 12:35 AM

Preston is hanging in there. He sleeps most of the day. He has been pretty uncomfortable regarding facial pain. Yesterday, the ENT surgeon came and injected a nerve block into the nerve right below his eye. It seemed to have helped but we are unsure of how long it will last. They said it could be hours or maybe a few days so we will have to wait and see. If it is effective enough, we will have to talk about how often they would be able to come and do this. You would think that as you watch a number of these procedures, you would start to become a little more comfortable but NO. I have learned one thing, ENT’s love to use scary instruments. They put cream under his eye, let it sit there a few minutes and then pulled out this needle that was probably 3 inches long. I immediately had to look away because I was getting sick already. Preston laid there like always, held my hand, and sat there while they inserted this needle right below his eye, kept turning and twisting it, and then injected the fluid to numb his face up. At one point when I looked up to see if they were almost done, you could only see maybe an inch of the needle. The good news is that it made him a lot more comfortable and lasted for about a day. This is great news for Preston although he doesn’t really like the numbness feeling and it is good news for James and me. We have been so exhausted the past few days. Preston had been so uncomfortable that he has not been sleeping well at night. James and I have been having to put our finger over his lip to apply pressure so that he would feel better. As you would fall asleep, he would moan again and you would try so hard to sleep and keep your finger there but really the end result was everyone getting bad sleep. Tomorrow he will be getting another nerve block done.

The next few days, I pray that he remains stable. James is leaving for Kentucky on Tuesday for part 3 of the board exams. Horrible timing. His test is Wednesday morning and he will fly back right after it is over. They only offer this test once a year and it is always in Kentucky and it is oral boards so he can’t take them somewhere else. If he needs to miss the test he will, but he will have to wait until next year to take it again.

We told Abby last week about Preston. We talked with Father Larry from our church to let her ask a few questions. Of course her questions are the same ones we have, why us? Why our family? She said she knew of a hundred kids she could pick instead. I wish it was someone else’s kid, I really do. She asked why Preston and Father Larry told her it was one question he couldn’t answer. Of course Abby, who has never really been told I don’t know about something, has to comment back that we could look on the internet, we have always looked on the internet when we have had questions we didn’t know before. Leaving the hospital that night, Abby said that she thought that God needed Preston because she had a special mission for him to do. We had talked about earlier that we were so lucky to get more time with Preston, over 2 years and she wanted to know why we got more time. Out of no where she asked if I believed Santa was real and I told her yes, but Santa needs helpers so we see a lot of helpers around (as we talked about during the holidays). She then said that she thinks Preston’s special mission was to help Santa and maybe that was Aidan’s mission too and that is why Preston got 2 more years. It made me smile. Two days ago while getting her allergy shots, the nurse practioner there asked me how Preston was doing. I told her not well and Abby said he is not happy. I asked her why she thought that and she said because he was going to go to heaven. I told her that he would be happy. There would be no more cancer, no more medicine, bandage changes, infections, etc…. I told her that Preston would always be able to look down us, that we were the ones that were going to be sad but we would be ok. I said that Preston would be happy because he will get to play all the time. She said to me so seriously, “he is going to be so sad when you are not there to kiss his knees when he falls and scrapes it”. I said that you don’t get scrapes or cuts in Heaven and she said “how do you know, you have never been to heaven, you don’t know what heaven is like until you get to go there and you can’t look it up on the internet”. My heart hurt for her. She comes to us with questions and this is the one time I wish we could give her the answers she is looking for. This case is the one time in her life since she has been able to ask questions that we will have to hope she will be ok with I don’t have the answers to these questions. We have always been the type of parents that have never told their child “I don’t know”. We may say we will have to look it up later, but we always make the best effort possible. That night we told her that we have to put all our faith and trust in God taking care of Preston and that Heaven will be even more than anything we could ever expect it to be. James and I also said that we need to be careful with talking about certain things like Santa. We don’t ever want her to doubt her religion and doubt that her brother will be in a better place, even if it is way too early for him to be taken from us.

For the past week we have been able to take Preston home on 4 hour passes. We are not sure how many more days we will get to do this for and even though he sleeps almost the whole time while we are home, he says he enjoys being home and just listening to everyone there and being home. He has been able to get up and play for a few minutes here and there each day. It is great to see him play with some of the things that he loved and some new things as well. It has been good for everyone I think. Right now, the most important thing for us is to just enjoy the time we have left with Preston.

Thanks to everyone for all your support, prayers, cards, donations, gifts, flowers, and messages.  It is comforting to know we have so many people there for Preston and our family. 

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8 Comments

Reply Angelica Rangel
3:03 AM on May 19, 2012 
Celeste,I can not say or do anything that can take your pain away. I can tell you I am sorry you are going through this and pleae know that I can tell you I am praying for all of you everyday all day. You are all in my thoughts and prayers and I do ask GOD to please comfort all of you and put his arms around you to hold,comfort, and protect you. God bless each and every one of you always.

Angelica Rangel
Reply Bernadette
8:33 AM on May 19, 2012 
I feel like I don't have a right to offer help since I am not in your shoes but maybe this would help your daughter...my kids are about the same age and they ask questions about Heaven vs. earthly pleasures....I tell them about the countless saints who were able to see the Blessed Mother while on earth and they have said, once you see Her, you don't want for anything on this earth again (no chuck e cheese, etc)...so I reiterate that these people only saw on the Blessed Mother and they don't want anything else, can you imagine how you feel when you actually see God...maybe that answer will help Abby. My prayers continue to be with all of you.
Reply karen Bernhardt
10:35 AM on May 19, 2012 
I LOVE YOU
Reply Donnalyn Trapani
11:41 AM on May 19, 2012 
GOD BLESS PRESTON. My prayers will always be with you guys.
Reply Tracy Hill
11:50 AM on May 19, 2012 
I know a lot of people who do heroic things every day in their line of work, but hands down you all have more courage than I can even fathom. It can't be easy to give these updates and we are grateful that you continue to share with us. Peace be with you, and please know that we love you all very much.
Reply Laura Konwinski
12:05 PM on May 19, 2012 
Been keeping Preston and his family in my thoughts and prayers. Preston is such a brave little boy and I pray that he is comfortable and at peace. God Bless Preston and his family.
Reply Deanne Parker
1:19 PM on May 19, 2012 
Just wanted to say I love you and am praying for you and your family. Deanne
Reply Peggy Pearce
9:30 AM on May 20, 2012 
There are no words that will bring you and your family comfort. Live with faith, in the moment. I am praying and will continue to pray for Preston, you and your family.