Here's a photographic view of our recent hospital stay. He was fine, crashed, got a central line and is now home.
By the time we got to the ER, Manny was looking like this. I couldn't wake him up. He was completely passed out. VERY scary.
This is him after he is stable and in the playroom. His first time out of the room in all of our hospital stays as he is ALWAYS on precautions. He was thrilled to be out of the room.
Taken a few minutes before his broviac surgery. I wasn't exactly sure where they were going to place it but I wanted the picture of him "before" any incisions.
That last moment before he was wheeled away to surgery. He is a charmer and had ALL the staff ooooing and aaaaahing. Do you notice the lady in green? If you look closely, she is holding his hand! I told her this was a secret to keeping him calm and she got the lucky job of being the hand holder she said! He was smiling and calm. (No drugs, they dont like to give him anything as it can lower his respiratory rate.)
A few minutes after surgery. Here's what your looking at. His left arm has he PICC line in it. The low tummy of course is his GJ feeding tube. The center chest is the broviac. The two patches at the top are the two attempts the surgeon did prior to getting a viable vein. (Personally, I am happy that the final broviac is in the center and not at the neck. Just on looks alone!)
Closer view of the broviac. The circle section is called a biopatch. The tube has the clamp on it and then there are extentions at the bottom. This version's opening is one for needles. We now have a extender that has a screw top that affixes to the TPN and syringes. It's all held on by tegaderm since he is allergic to all tapes. (Hoping he doesn't develop a tegaderm allergy.)
About 4 hours post surgery, they invited us down to a "Bead party". He didn't want to make a necklace. He just wanted to play with the beads. Yes, we supervise him with not allowing him to put them in his mouth. But the truth is ... as a child who has been "NPO" (Nothing per oral ... or nothing by mouth) since 8 months old, he is seemingly unaware of his mouth and has yet to attempt to put things in his mouth.
Manny on his diaper changing station at home. I'd just changed out the bandages for his PICC line. For those wondering, they took out his PICC line and bandaged it up. We remove the bandage 24 hours later. This is important to be extra careful with bleeding issues since he's on Heparin (a blood thinner) so that the lines in his veins don't develop clots. But of course this makes him more prone to bleeding.
The dressings on his neck were supposed to be changed at the 24 hour mark too. BUT, when I went to change it, they were still oozing blood. I called the surgeon's office and talked to one of the Physician Assistants who assisted in the surgery. I needed to talk to her and not just anyone. Why? She was IN on the surgery and knew all the extra incisions they made and how it wasn't a typical surgery. She told me to give it a few more days since he was still bleeding. Normally it would be fine to remove it now (and recommended) but since he was still oozing blood, it obviously needed more time. There was likely a little bit of trauma to those veins in his attempt to use them for the broviac.
The broviac's bandages get changed once a week by a home health nurse at first. Eventually, they will train me how to do it. (For now I'm happy for HER to do it!) They draw labs at the same time.
and put him in his favorite pjs ... his monkey shirt. Every time he sees it, he immediately says, "oooo-ooooo, aaaaa-aaaaaa". Makes me smile.
So thrilled to be home. And thrilled to have a way to feed him again!
Oh Manny, you are such a brave soul. You have experienced more than most in a life time. My thoughts and prayers are with you and your family sweet child.
ReplyDeletehe is such a fighter !
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