Ventilated

Aaron continues to decline. He was intubated last night and put on a ventilator. The regular ventilator was not helping and they had to use an oscillator type to ventilate him. They are also talking about dialysis again.

Aaron is in good hands and hopefully is getting the rest his body needs. This is the third time he has been intubated and ventilated. I have learned it is a long slow process. There probably won't be much to update for awhile.

He is surrounded by his doggies and I have trains playing on the iPad. I read him books and hold his hand. My love.

Memory book please read

Aaron has been transferred to the ICU again. His breathing continues to decline. He has been put back on the high flow at a high setting with no success. His chest X-ray shows likely pneumonia. This is actually very good news. If Aaron has an infection, he has hope of recovering. If Aaron does not have an infection, there is very little left to help him. He is weak and tired but still fights the nurses. The doctor told him he couldn't drink anything and he let her have it. He is not going to back down and I am so proud of him. He finally got his way and is allowed to drink.

Aaron may have days, weeks, months or years left. I have had overwhelming support and prayers.  I want to ask a favor of anyone who feels Aaron has touched their lives. I want to put together a memory book. I would love you to write something about Aaron. Anything. I especially love how funny he is and the funny things he says. Feel free to write multiple things. Please include pictures  that moved you. I have pictures on

Facebook
Www.wolseyandrose.blogspot.com
Www.aaronwolsey.blogspot.com

I would like this book to be a positive book. Aaron has not and never will lose any "battles" with disease or illness. Aaron has won at life. He is happy. He knows God and he spends everyday doing what he is passionate about. He should not be pitied. He is an amazing child. If his life is short that is because he has fulfilled His purpose.

My sister and sister-in-law will be putting this together. When it is done, I would be happy to give you the information on how to order one. Please send all your memories to

Katie Rose
Kterose@aol.com
(520) 661-6697

Or

Gretchen Rosewolf
gretchenerose@aol.com
(509) 844-1213

Thank you!  And I appreciate each and every text, message, and phone call you have sent me in thought prayer and encouragement. I apologize that I rarely answer phone calls. It is too hard to talk about and each time I have to tell tell someone that Aaron is not well is like reopening a painful wound. I am better with text.

Please also pass this blog post on to anyone who may want to contribute.

Still struggling

Aaron has been out of the ICU for a week now. He has still been struggling with breathing and almost went back to the ICU. He is putting on weight at a scary rate. His weight gain has made it so he can hardly walk at all. He stands for about five minutes and goes into respiratory distress. Overall,  Aaron is not better and things are not good. His sores do not heal.

I try to focus on the good times. Aaron still has laughter and some happiness. My heart hurts for him, but nothing is better in this whole world than the sound of his laughter.

I feel like my hope in medicine has left me. I can only lean on faith.

“Trust in the Lord with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths.”
‭‭Proverbs‬ ‭3:5-6‬ ‭KJV‬‬

The downs and ups of the ICU

This picture sums up the past week. Aaron gets very nauseous and his oxygen sats drop. When he gets sick, I rub his back.  He likewise rubs Pupsters back. Aaron says "it's always nice to have a good friend by your side."

Neither of us are very excited to be in the ICU. Aaron misses his friends on the BMT unit (PT, OT, speech, music therapy, child life volunteers, and familiar nurses). He also misses hearing the little boy who was our neighbor. We nicknamed him "the cat" because when he cried he sounded like a cat. Aaron walked down the hall one day and peeked in his window. The two boys were waving to each other and saying hello. Aaron does not like the every two hour vitals in the ICU (BMT is every four hours). I don't like hearing the code blue alarm everyday and seeing the staff run by to try and bring another child back to life. This triggers PTSD.  I relate what we have been through as being in battle (I hope this does not offend anyone who has been in war). Everyday we see kids fighting for their lives. They have horrible wounds, horrible pain, and even worse is the anxiety because as they get older they start to understand.  Every day these kids go to bed (often not sleeping well) and wake up hoping a new day will bring a better day.  Often, the new day is not better. Aaron has been in battle for five years. But still we keep hoping. My inspiration this week is "let faith change the endless worry."

There has been a remarkable upside this week. Aaron is off the high flow machine and back to a regular nasal canula with 1.5-2 L oxygen.  This level is still much higher than we want, but Aaron is more stable. His chest is not heaving with each breath and his nostrils are no longer flaring. The team is even talking about Aaron moving back to the BMT unit today or tomorrow.  The ICU is phenomenal. The nurses are top-notch. When you press the call button, a nurse shows up within seconds.

Overall, Aaron is feeling better. He has been cooking for his dogs again. He even got a visit from music therapy. His old music therapist, Caitlyn, recently left the hospital. She told the other therapist that the patient who has touched her heart the most and she will miss the most is Aaron. We also love Beth. She has an app where Aaron drives a train through different scenes and picks up passengers. She plays the guitar and sings along to what Aaron is doing. Her voice is absolutely beautiful.

I had a much needed conversation with one of Aaron's doctors from day hospital.  He asked about Aaron and I told him.  I said that things have been bad and I fear I may lose him soon. I am willing to do what I can to save Aaron, but I also don't know when I am supposed to say "enough."  The doctor assured me in his experience that Aaron will let me know when it "is time."  Right now Aaron is mostly happy and definitely fighting. I hope the doctor is right. I also hope I am not faced with a time where I have to make such decisions.

One of Aaron's favorite songs is The Old Log Train by Hank Williams. The song sings about a man who hauled a log train until God called him to Heaven. Aaron cried as he was sad the man had to go. I have been telling Aaron that people are happy to go to Heaven. The man singing was not sad about his father in heaven, but excited that he will see him again. I am glad we are having talks of heaven, but Aaron has shown he is not ready to go anytime soon. He has a lot of struggles to overcome, but he is not done fighting.

He can eat!

Getting the okay to eat food is a really positive sign. Aaron has not been able to eat for two days. The doctors were afraid. If Aaron continued to get worse, he might be intubated. Intubating Aaron with food in his stomach could cause aspiration. The doctors must feel he is pretty stable to allow him to eat. They are going to try to wean his oxygen a tiny bit today.

The diuretics had to be stopped because they are affecting some of his labs. He has lost one pound of fluid so far which is great. He will also start photo treatment again today.

Thanks for the prayers.

Here is a video his nanny took a while back.

In the ICU

Aaron has been struggling to breathe the past week. He was transferred to the ICU yesterday. Every so often, he says "I feel weird".  No one knows exactly what this means but wonder if he feels light headed And nauseous.  He has been put in a high-flow nasal canula at a low setting. This setting has increased slightly over the past 24 hours.

He has retained a lot of fluid over the last two months. We hope that removing the fluid will help his breathing. Despite stopping iv fluids and having diuretics scheduled 3-4 times a day, he has not lost any fluids yet.

I am fortunate to have the absolute best sitters looking after Aaron. Claire and Lynn are sisters and two of the most amazing individuals in this universe.  I do not have any leave from work. I don't earn any until June. These girls love Aaron and allow me to work knowing he is being cared for.

My heart is in pieces as I face the possibility of losing him for the third time. I feel like my whole world is crashing down.

Bloody Baths

Aaron loves his iPad.  We call it his "precious iPad" because life would not be the same without it. Some days I want to throw it out the window because Aaron could be happy doing nothing but watching YouTube videos all day. I am grateful that he has something that he enjoys doing, so I resist the urge to do it harm. Aaron's tastes have not changed much over the past four years. Cooking shows and train videos. However, Aaron does not care for trains with faces much any more. He likes the real thing. Big, strong steam engines. He is waiting for the day that diesel fuel runs out so steam trains can make a comeback.  He can watch trains for hours and hours and hours. I show the above picture because I make him do other things. He fights me.  He only wants the iPad, but once he gets started on a fun new project, he loves it. He is soooo stubborn!

Treating Aaron's sores has been a lot of trial and error.   One thing that we do is apply these patches to cover the sores on his back and abdomen. They are made with silver which is antimicrobial. This helps to protect from infection while also protecting his fragile skin from friction. We have moved his baths to every three days. Peeling off the patches can also peel off his skin (not good). After three days they come off more easily. Usually Aaron bleeds from several spots once the patches come off. We have to apply pressure for a long time to stop the bleeding. Then he sits in a bath. The bath water turns a rosy color very quickly as blood mixes with the water. Not going to lie, bath time is tortuous. After today's bath, Aaron and I took a much needed nap. I woke up to find Aaron covered in blood. One of his sores kept flowing for three hours.   I haven't shown pictures of Aaron's sores because they are very graphic and sad.

I saved the best for last. Through the tantrums and attitude from the increased steroids and the tortuous bloody baths, Aaron's skin has finally shown noticeable improvements. I hope this trend continues.