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.

Steroids, headaches, and double dark chocolate cake

Aaron's sores are not healing despite all our efforts so far. We tried photophoresis five days a week for several weeks. This did not help. It did, however, contribute to fluid overload and increased blood pressures.  Dr. Davies decided to stop the photophoresis for a week.  Unfortunately, this did not help his blood pressure much.  Friday she decided to double Aaron's steroid dose for two weeks to see if this might help the sores heal.  Too soon to tell if the sores are getting better, but not too soon to notice the change in mood.  Watch out!  Steroid Aaron is back in full effect.  Screaming, tantrums, increased appetite, and Mom gone crazy. 

I have been having really bad headaches this past week.  The headaches may be from my horrible Monster energy drink habit.  They might be from episodes of crying when I see my kiddo suffering.  They are probably from dehydration.  Whatever the cause, steroid Aaron has not helped. 

The increasing steroid has given me a new hope, but I am having a hard time being overly optimistic.  GVHD is supposed to "burn out" in five years (if you survive to that point).  We are well into the fourth year post-transplant and I don't see much improvement since he first got GVHD three weeks post-transplant.  My prayers have changed.  I still pray Aaron has a full recovery (of course), but I pray that he is happy and we can all be at peace.  I will be comforted with peace and happiness right now. 

I try to get Aaron out of the hospital on my days off.  He can get passes for four hours out of the hospital.  Saturday evening I took him to Buca di Beppo.  Aaraon's requirement for a restaurant is that they serve spaghetti and garlic bread.  He ate two bites of spaghetti and one bite of garlic bread.  Then he asked for cake.  He ate a good portion of his gigantic double dark chocolate cake. 

Aaron wanted a spider for Christmas that he could hang from the ceiling. Neither Santa or I could find one. I did find this super cool remote control spider at Trader's World (flea market). Aaron thinks it is a little too big. I told him he should turn it on whenever the doctors and nurses come in and scare them away. So far he tried it on one nurse, but she still managed to stick around and get a blood pressure. We need to perfect our scheme. We are thinking of having it hide under the bed until the doctor walks in. Will keep you posted...

Meet Drummer

Two weeks ago Aaron met Drummer, one of two therapy dogs at the hospital. Aaron was thrilled. He was anxious at first, but warmed up to Drummer quickly. Drummer was the sweetest dog. No matter what Aaron did to him, he would just lie there calmly.  Drummer and Aaron have one thing in common for sure. They both love Pupster!  Drummer laid down the whole time until he caught one look at Aaron's favorite dog Pupster.  Drummer grabbed Pupster in his mouth and took off running. We all got a good laugh.

Aaron is not well. His sores at not healing and his oxygen requirements continue to increase. X-rays have shown fluid on his lungs.  His energy levels have decreased a bit.

Broken down and lifted up

Aaron's little body is very broken. He has had sores for months now that do not heal. The doctors believe it is gvhd. We tried a new drug (a last hope) and so far it does not seem to be helping. We decreased Aaron's steroid recently because he needs to get off of it. His sores started getting worse again. Now he is back on the same dose he has been on for probably a year. The steroids have caused his cataracts, do not allow him to grow, have made his muscles and bones very weak, and caused his skin to be incredibly thin. They have saved his life so far and for that I am grateful.  Aaron's oxygen requirements have also doubled this past month.

What has not broken is Aaron's spirit. He is funny, smart, feisty, stubborn, and extremely particular. When he does not want to do something, he does not want to compromise. However, when he decides he is going to do something, watch out. Nothing is going to stop him. He likes being in the hospital and everyone knows and loves him here.  He finds great comfort in his dogs and his iPad. He enjoys learning. He loves his sitters. When a sitter has not come for a few days, he asks about them. Today a child life volunteer came in. He asked (demanded really) that she sit and watch his iPad with him. She was super sweet and watched train videos with Aaron. Aaron enjoys company.  Unfortunately, the hospital has a strict visitor policy and we have to limit who can visit.

Aaron playing with Drummer

Two weeks ago I think I hit my lowest point.  Aaron had been in the hospital nearly a month.  He is not getting better and the doctors have no other options.  He may get better and he may not.  I feel like I am facing another point where I might have to say goodbye to the love of my life.  Over the last year and a half, I have had to sell my home and leave Florida to start a new life in Ohio.  Start a new job.  I have been lied to and cheated on for years.  I am still the third wife of a man I am longing to be divorced from. The divorce has been a nightmare with having to prove things like I was actually "married" since 2010. The final straw that broke me was finding out I am being secretly recorded while caring for Aaron in the hospital.  I have a son in the hospital who may or may not be with me for much longer.  I have prayed and prayed and he is not healed.  I was mad!!  And I was mad at God!  I was driving in my car and I screamed louder than I knew I could.  I yelled at God and told Him that He must absolutely hate me.  I even told Him I was ready to turn my back on Him.  He did not care about me so why should I care about Him.  I said He must show me a sign or I am done praying.  I wanted to be done proclaiming the good He has done.  I was done!

Then I felt super guilty.  Of course I did not mean the things I said.  But I was angry!  Why does the suffering not end?  Why can't I have some peace for just a little while?  Then I screamed some more.  Then I felt guilty again.  So I turned on the Christian radio station hoping that I could redeem myself.  The first song that came on the radio was "Tell Your Heart to Beat Again" and I knew what I always knew.  God is with me.

https://youtu.be/azYK8I2uoog

I know that I am not someone to be pitied, but envied.  I have been given one of the most beautiful children on Earth.  God has chosen me and trusted me to care for him.  We laugh every day and love life together.  Aaron inspires people and brings people together in prayer and joy.  God has used Aaron in ways that I cannot believe.  I am truly blessed in life.  I am still scared of losing Aaron, but I also have a sense of peace knowing that everything is going to be okay.  No matter what the future holds.  I am embracing the new chapter of my life going forward and I continue to pray that God will allow Aaron to be a part of that chapter. 

Thank you for all the prayers.  Please keep them coming.  They keep us going.  They lift us up.

Everyone look at my new shirt

After his bath, Aaron decided to wear his new shirt. He also decided EVERYONE in the hospital should see his new shirt.  And that is exactly what he did.  He walked up and down the unit stopping all the nurses and PCAs to show them his shirt.  Since it was evening, there weren't many people so he wanted to leave the unit.  We walked all around the fifth floor of the hospital stopping everyone (most parents who were coming and going). Still not enough people saw his new shirt.  He heads straight for the elevator and insisted we go down. I didn't have my badge so we couldn't go. He was sad, but decided it was a good time to stop and rest his legs. Then we walked back.

Everyone told them they liked his shirt. A few asked about his puppy (Pupster). Most said he must like trucks. He said no every time. The truth is he doesn't like trucks at all. He only likes trains. The whole thing was awesome.