Wednesday, February 4, 2015

The big update and Jude's serious situation

I am afraid I was right......Jude is sick. That's really the best way to sum this situation up.........Jude is really really sick. Yesterday while I worked the poor new nurse dealt with what we did during the night. Finally at about 4pm she called 911. She made the right call and one I would have made once I had gotten home. Mike and I both pulled up to our driveway with an ambulance in front of our house. Suddenly I became completely overwhelmed and broke out in hives all over my neck. I felt dizzy, faint, and I had to decline the ambulance ride with Jude so Mike went instead. My heart just sank and I knew this was serious. I packed up everything I could from Jude's medications to his invaluable boppy pillows and headed to the hospital with Emily. Once I walked into the ER room Jude looked and sounded terrible. I began to tear up and Mike stood fast that nothing was seriously wrong..........but there was. The ER told us it was double pneumonia and it looked worse than the situation in December. They originally discussed ICU but ended up sending Jude to the Critical care unit. Jude didn't have an easy night but we were able to get a little rest since we were in a private room and not the bright noisy ICU. Today was even worse. Jude gasped and struggled to breathe and it was one of the hardest situations I have EVER sat through.  Jude also seemed extremely sedated but he wasn't at all. Jude's Pulmonoligist came to the room and that man is great and always to the point. I told him the ER explained Jude has double pneumonia that looks worse but critical care said he has bacterial pneumonia that's scattered. He said there really is no reason to put a label on Jude at this point in regards to pneumonia, viral infection, or other issues. The problem is that something new has attacked Jude's respiratory system and it needs to be dealt with as a whole. He did explain that Jude's overall picture doesn't look very good and that Jude looks very sick. He didn't mean it negative he was just being honest. He then talked to me about making a decision regarding possible intubation and if we would want Jude on a breathing machine. I told him I would have to talk to Mike.  

 As medically educated as I am I was baffled as to why Jude's oxygen level was normal but he looked in such distress. His respiratory rate could be near 80 but again his oxygen would be 100. Then they did a blood gas and it was a little raised, but then they took another and it was 74. Alarming. They explained that this meant Jude's blood was not properly oxygenating and therefore there was a build up of carbon Dioxide. Jude's body was poisoning itself. So we readied to go to ICU. They then tried a high flow nasal cannula to force air into Jude's lungs and help dispel the CO2, however his oxygen then began to drop. When Jude's oxygen got to 85 the RT took the high flow off and apologized it didn't work. Once we were in ICU a flow of doctors and nurses came into the room. They began to assess the entire situation and they noticed Jude's IV (once again) had blown so they had to change arms. This woke Jude up (finally) and suddenly Jude began to look better. We got some smiles, his oxygen held, and he just seemed better. They then tested his blood gas and it was back down to 49. This was good news, but the doctor pointed out that we didn't want to push things and we needed to give Jude 6-8 good hours. The ICU doctor also sat down with Mike and myself and talked to us about intubation. She pointed out that Jude could be intubated to where he gets over his illness and is his smiley self again, but he may not. She said there is no judgement at the ICU and that sometimes we have to look at the facts. That sometimes dedication and love means realizing that we don't want our children living the rest of their lives in hospitals. The rest of their lives on medications, struggling, and in pain. She said the older children like Jude tend to start getting more hospital stays and they become longer with each visit. I listened to her with a heavy heart and I knew she was being as kind and as honest as possible. I knew that even if Jude gets better this time...........he has a long road ahead and that road always has the same ultimate ending. So my job is to hold his hand and walk that road with him as long as I have the honor to do so.

The doctor then explained that Jude's overall stats may look good on the machine but if CO2 builds up to high then by the time the machines show an affect it can be a very serious issue. I had to go home tonight and get some rest. If Jude is stable all night then I have to try to work tomorrow but I don't want to. It's so hard to be away from him and as a parent your mind is always wondering. Mike texted me that Jude did start the rapid labored breathing again but that his blood gas continued to decline which is amazing! So I am truly hoping the antibiotic has kicked in and Jude has turned the corner. If he has he will be moved to another room. Once stable enough Hospice will transport him back home where a critical care nurse may join our regular nurses to watch Jude. It's been a hard 48 hours, hell it's been a hard 12 months but we got a few smiles out of Jude tonight and they were a pleasure to witness. One thing is for sure....Jude is always a mystery. He can go from us thinking we may lose him to doing so much better in a matter of hourse and vice versa. He keeps us on our toes!

I was looking back over old messages last night from people regarding Jude's situation or life in general. I think I was rather short in them many times or thought I knew more than I did. Now I know I am learning everyday and I try to be nicer to everyone. Sometimes when you are caring for someone that is so sick you lose sight of anything that resembles patience. So if I ever came across in a negative way to you trust me it was unintentional.

1 comment:

Reagan Leigh said...

Poor sweet Jude! Praying he pulls through this quickly and gets back to his baseline! The CO2 issue is a common problem in kids with mito. I know Jude has never been diagnosed with mito, but his symptoms of late are so similar, I hope they are following mito protocol with him in the hospital (no lactated ringers). Thinking of you guys and praying for your boy!