Boy am I regretting waiting so long to write...'cause there's a lot that has on! First and foremost, GRAHAM IS OUT OF THE HOSPITAL!!! Graham went in for his bronchoscope on Monday and woke up without his chest tube! So the waiting for Dr. Rosenblatt to come for his visit began. He experienced a lot of abdominal pain the night before, enough to take Morphine again and he hadn't had that in almost a week; and the concern of the fluid in his right lung and his pnemothorax kept us anxious if he'd go home or not. But the orders finally came in, he got to come home Tuesday!!!
Here in the Johnston family, things don't come easy (and it's rather annoying...just a tiny break please!). Monday, I was doing last minute stocking the fridge shopping when our daughter Jordan started acting funny. Got her home and she had a 101 temp. Ugh, maybe it's a fluke. Give her IB Profin and put her to bed. She then wakes up at 2am with a 102.6 temp - agh. Graham can't come home to that! Take the day off and take her to the doctor. Fortunately it was just a cold, but still, Graham can't come home home, he needs to stay at his mom's for awhile. I can't describe how mad, sad, frustrated, annoyed I was. Here it was supposed to be this happy time, Graham has new lungs and he's getting out after a long 5 weeks (7 if you count the two weeks he was in the hospital prior), but he can't come home and we still can't be around him much.
He did get to come by to pick up some stuff. Jordan was really mad at him at first. Wouldn't talk to him, wanted me to hold her, and she would just bury her head into me when he got close. I don't even know what she thinks and I feel so bad for her. I completely understand her being mad, frustrated, feeling abandoned; I just hope she gets over it smoothly and doesn't remember much of all of this.
Jordan warmed up to him within about 15 minutes and OH MY GOODNESS! It was Daddy come here, Daddy come see my big girl bed, Daddy come play blocks. And in between each sentence, she was hugging his legs. Not going to lie, I was a little nervous about when he had to leave. But she was on such a high, it didn't matter. She got to see her Daddy, and Daddy got to see his girl.
On our first day to hang out together, we had a great time. I decided to take advantage of his disability and play him in Wii Bowling. I kicked his butt 3 games in a row, and rubbed it in (don't judge, I NEVER win anything and he is a really sore winner!). But then he began to win, thank goodness he started to get tired, I'm still up on him :) Then we went and got him a new phone. Ahhhhhhh, so nice to have him back and connected! And that is one more thing he doesn't have to rely on others for too, he has a little more freedom.
His swelling in his arms is still way up; they've finally determined that it is a lymph node problem. He's wearing these compression sleeves and gloves and they seem to be really working for him. All of his muscles are really weak. He walked 3/4 of a mile on Wednesday and today, his shins and back are really hurting. Lucky for him, they gave him a BIG bottle of pain meds and he's ACTUALLY taking them, such a huge step for him!
Today we went to his first post discharge Clinic Appointment. He got his blood drawn, x-rays taken, PFT's (lung functions), and physical therapy showed him no mercy, then finally got up to Clinic to see Dr. Rosenblatt. Very interesting visit. Dr. Rosenblatt revealed to us that he was actually very concerned and worried about Graham Pre-Transplant (nothing that was new to me, I was worried too), but pleased how everything has gone. His labs today were a little bit of concern. His Prograf level (anti-rejection drug) was really high, toxic high, and he's now ordered not to take it again until we talk to them tomorrow. We get to go to Dallas again in the morning. His Kidney levels were also higher. But the big concern was the fluid surrounding his right lung and will probably be drained at our next Clinic visit on Monday. This is done by needle through back with catheter straight into lung cavity, then drain - esh! But needs to be done. What we were most shocked by was his PFTs were only at 45. Now, this is almost double what they were before lung transplant, but we just assumed they would be higher. An average person's lung functions (percentage of lungs being used) is around 80. Graham pre-transplant was sitting in the low 20s. The good news is, it will get higher. The fluid around is lungs is most likely affecting his number, and as he gets stronger and works out more, his number will begin to climb.
It has been a great few days, Graham will hopefully come home to us tomorrow and then I will be walking around with the biggest grin on my face...I still miss him and can't wait to have him home.
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