The fragile human

On Sunday evening I noticed that Jude wasn't really acting like himself. As the week progressed he worsened with a bad cough, a fever, and was lethargic. On Thursday I decided that Jude needed to go into the ER to be seen but to us it wasn't an immediate emergency. We go through the ER because the doctors prefer that since Jude's case is complicated. So I spent a half day at work and reached out to Jude's doctors to advise them we were coming in. When I got home nurse Charlotte had Jude bathed and ready to go. All his medications were packed, overnight clothes, diapers, and more. It's a lengthy process getting Jude out the door. Jude and I left first and Charlotte followed in her van. Jude did very well on the trip to the hospital. He coughed but it wasn't overly productive so I didn't have to stop to suction him except once. He was smiling but very pale. Once we got to the hospital I unloaded his wheelchair and carefully put Jude inside of it. Suddenly Jude began retching, cough, and vomiting so I suctioned him while in the parking lot. Once I thought Jude was done I rolled him inside the ER. I was met by the triage nurse who was very kind. He asked me what was wrong and I explained that I thought Jude was either developing aspiration pneumonia or maybe had the flu (even though he had the flu shot). Just then Jude vomited loud and violently! Then again! I grabbed the plastic green pad  from the side of his chair and held it to Jude's mouth and simply mumbled "He is sick!". The nurse grabbed the wheelchair from me and sped to the back. He grabbed the suction out of the wall ramming it into Jude's mouth trying to get his airway clear but it was to late. Jude had aspirated into his lungs.

From that point forward things moved so fast that I felt I might faint in the ER room. A nurse grabbed my car keys out of my hand and she ran with them to security. I ran behind Jude's wheelchair which I noticed was now empty and someone was running with Jude screaming "CODE something". "Oh My Lord" I mumbled as I ran behind trying to catch up. Before I even made it to the room there were people surrounding Jude and each one had a job. At the foot of the bed stood a doctor nicely barking orders I heard "trumpet", "bag him", and "try again". I was overwhelmed and in the back of my mind I wondered if I could have gotten Jude under control but I realized this was a much more serious of a situation than Jude normally encounters. The doctor would talk to me and try to distract me from what was happening while obtaining necessary information he needed. He was very calm, collected, and well educated. If they stopped bagging Jude I noticed his o2 would immediately begin to fall and would just continue to fall rapidly. Again I realized Jude was NOT well and this was not good. Finally they got Jude stable and he was on a bi-pap machine to force Jude's lungs open so he could get air in them. The team was amazing. It seemed like within ten minutes they had blood, Xrays, and a diagnosis......right side pneumonia and an aspiration of vomit into the lungs in the ER. The doctor explained that they were going to have to force a lot of fluid into Jude's body and put him on blood pressure medication. They needed to support his heart while he was on the bi-pap. He then explained that his only recommendation was for Jude to go to ICU. I stopped and called Mike...breathing heavy and crying. I realized that as strong as I am Mike is my rock and he wasn't there. Mike told me to calm down and that I was panicking. He said we know that people overreact to Jude's situation sometimes. I then said, "this isn't over reaction Mike he is just lying there not breathing and they used this thing in his nose. Alarms keep going off". I know I was making no sense but I think Mike finally understood this was very serious when I mentioned ICU.

When Charlotte got to the hospital she came into the room and I could tell she was stunned. No one expected this to happen. I just let tears fall and she reached over and hugged me. Despite Jude's illness he is still my son and is just like your child.....he is precious to me.  Charlotte followed us up to ICU and was an amazing help because she had medication lists and more. The nurses took us into the hallway as they put an Arterial line in Jude for medications. She helped me answer their questions and I would watch what they were doing to my son from the hall. Jude had two Iv's and an Arterial line. There were tubes and machines everywhere and as I looked around the ICU that's all I saw. I was more calm and able to take everything in and it was sad. So many little children in serious condition with parents sitting by their bedsides. It makes you question the universe and why bad things happen to such innocent souls.

The night they brought Jude in they began weaning him off the bi-pap. I couldn't tell you what time of the morning it was but they finally got him on to a simple oxygen mask at around 5 liters. They haven't been able to take that off yet. They also weaned him off the blood pressure medication and then they began to talk to us about surgery to find a way to prevent Jude from throwing up.  This scared us because of the nightmare we dealt with after the Baclofen pump surgery. However the doctor came in and sat down with me. He said that they almost lost Jude yesterday and that we had to find a solution to prevent the aspiration pneumonia.  He explained there is no way they can put him under after he just coded unless it was an emergency. He explained they decided they wanted to put in a GJ tube in the place of his current feeding tube. He said a specialist from radiology can do this without sedating Jude. He explained the tube would flow directly into Jude's small intestine vs into his stomach. It would be a constant slow drip of food that would keep his body nourished and prevent him from throwing up. We thought this sounded amazing and we were excited that they found a fairly non invasive way of solving the problem. Although they did explain the tube was more complicated than Jude's current one. If it comes out it requires a hospital visit with a surgical procedure vs his current tube that we can personally replace. So we must be very careful with it. It also has to be changed about every 6-9 months.

Yesterday they took out the Arterial line and today they said they hope to have Jude in a regular room by tonight. However, when I got here I noticed that Jude's right side of his chest is not raising at all when he breathes. RT noticed it too and they spent some time giving Jude breathing treatments, CPT, and more. They got air moving but it was coarse and diminished so they called the doctor. The doctor has ordered Jude a new X ray and said he cannot move until they see it. I am hoping the X ray looks good and we can go ahead and move rooms. I am hoping beyond hope that Jude gets better and we can go home tomorrow or Monday morning. We both need to work but of course Jude comes first.

I have always been amazed at how fragile our lives are and how they can end in mere seconds. Our bodies are fragile but our spirits are so strong and so is our fight. Jude has always shown he is a fighter and has again done so. I have received so many sweet emails from people during this stay informing me how Jude has touched their lives. People that now work with the disabled, help those in need, and more. People that tell me Jude inspires them to be a better parent, people who say he inspires them to live a more healthy lifestyle, and people who say Jude has taught them to be grateful for the life they have. I feel like he is my little hero and if I could put him in a little superman cape I would. He seems to touch everyone he meets with his bright shiny eyes and his infectious smile. He teaches people that he isn't just a body laying here fighting but a good soul who is just full of love for all those in his life.

I know someday we will lose Jude because his fragile body is growing weaker with each battle, but as I sat there in the ER saying "not yet God just not yet" I have to be thankful that he listened.