I know people have been worried but we needed a day to ourselves today. Please be patient as we adjust to what is going on.
Jude has good hours and bad hours. Fortunately last night he had a very good hour. He was very smiley and looked much more like himself. His respiratory and heart rate was still high but he was much better than the day before. Here is a great shot of how he looked and how responsive he was to me.
Mike and I had a hard day yesterday with lots of tears shed. Even though Jude is doing better we have faced reality and listened to the doctor. We know Jude has really suffered and once this pneumonia battle is won there will still be continued suffering on the horizon. As the hospital stated "at this point Jude will not get well but we can make him better". So we had to make difficult decision regarding actions to take if Jude should code again. So we made a very private and very difficult decision. We know that despite the happy pictures I post like the one above the other pictures like below that I don't normally share are far outweighing the good pictures. This was a shot my friend Gina took without us knowing in PICU.
We watch as Jude's respiratory works three times faster than ours does because his lungs are just riddled with scar tissue, disease, and fluid. The X rays are almost solid white now. I hate seeing Jude suffer, gasp for air, and struggle. After watching a child across the hall code yesterday I just fell apart. The crash cart and life saving measures were loud and overwhelming. This only landed her on life support and my understanding is from transactions last night this also ultimately failed. Mike and I just clung to each other and cried and decided this isn't what we want for Jude.
Jude reminds me of the movie "The Perfect Storm" because we ride the large waves and get excited when we see the daylight in his bright smile. However soon the dark clouds rise again and Jude is enveloped in breathing difficulties and anxiety. So this morning I met with hospital staff who went over a plethora of information. We then signed sensitive documents I prefer not to discuss and the Teddy Bear Transport came and picked Jude up. I looked around the Cook's Children's hospital room and took it all in knowing I wouldn't be back. In my own way I guess I was saying goodbye to the facility that has served my son so well. We loaded Jude into the ambulance with a nurse, a respiratory therapist, and an EMT by his side and we headed for home. We were taking him to his bed, his family, his home, his familiar.
When we got Jude home my house was filled with medical personnel. Although their words were kind and gentle I felt such finality even though I know it's not the case at this point and time. I felt like Mike did, that we could no longer rescue Jude and as his parents that feels like our responsibility. Nurses surround Jude's bed now and hospice is here making sure everything is the best it can be for my little boy. I guess I have heard two lines that were fitting today, "This is done from a place of love with an understanding that you care enough about your child to no longer let them suffer" and "this F'ING SUCKS". The latter comment may be the best one to sum up the situation.
I guess the one thing this horrible emotionally raw situation has taught me is to cherish each and every amazing moment. I am not sure if Jude will be with us days, weeks, months, or years but he is with us now. He has been my teacher and I am so very blessed to have him as my child. No more hospitals Jude! No more ouchie Iv sticks, blown veins, long ER waits, or PICU stays, only love Jude.....only love.