So here is how it went down. Yesterday morning we had home health care drop by and drop us our oxygen. We were under the impression it would be an oxygen tank, it was not. It was a machine that filters the oxygen from the air and as long as we have electricity, we have oxygen. For when we are not in the home, we have portable tanks. Those tanks are roughly 18 inches long and 4 inches in diameter. At .2 liter flow, that bottle will last 11 hrs. Which they delivered to the hospital a little later.
We arrived at the hospital around noon and packed up our belongings. Met with doctors, therapists, nurses and other employees who had discharge items and others who just want to say good bye. We were done on the hospital end by 2, but had to wait until almost 4 to leave. We had to wait again for home health to come by the hospital and drop off our portable oxygen, constant feed machine, and our pulse ox machine to measure his oxygen saturation. Like I said in the begining, it was very bittersweet, sure we want to bring Frankie home, but this is what we knew of his life and parent hood until about 24 hrs ago.
When we got home it was strange. First thing first, Frankie got a tour of the shop. Then I took him inside. There was a ton of unloading, unpacking, opening of items we had needed before, and settling in. We finally got to bed around 11. Frankie slept in a bassinet on Alex's side of the bed. Since I knew I would wake up every 5 minutes and have to sit up to see into the bassinet, I set up our video monitor. I was able to see the boy quite easily then. Frankie slept through the night and actually was still very tired at 8 this morning when we went to get up. Since Alex insisted on the boy being on her side of the bed, she did not get much sleep. Anytime he needed anything, she had beat me there. I.E. Diapers, medicine, shut off or restarting the feeding machine, so on so forth. Not to mention nerves didn't help her sleeping either.
We got up this morning and took the Frank the Tank to meet his pediatrician to get a base line for if he has any trouble in the future. He does not like his car seat. We have egg crate foam that has a hole cut out to put his omphalocele through. Then towels are rolled up and put on either side of him to keep him from moving side to side in the seat. He does enjoy car rides, but hated the seat. It was actually a tearful ride home from the pediatrician because he was so pissed about being in the seat.
We spend the rest of the day trying to get settled in. Putting things were we wanted them. I ended building a rack on the feeding machine tree to house the pulse ox machine too. Wires and a power strip make it less cluttered. We did give Frankie a bath, rewrapped the omphalocele, replaced his nose piece with a little but smaller one that came with the oxygen machine and retaped his face. While we had the tape off of his face for the new nose piece, his feeding tube slide out. I had to replace that, which I absolutely hate doing. It is the hardest thing in the would to cause this awesome little boy pain and discomfort. When he cries it makes me want to.
Besides that we just took it easy this evening. Ate some lasagna and watched TV. Alex and Frankie just went up to be and I am sure to follow them here shortly.
So we are home, Frankie sounds a lot louder in this quiet house, we more then even realized home much these nurses do to help us, while we were old pros at the hospital, we are learning it all over again. While we are happy as can be, we are scared to death.
P.S. Alex is upstairs and I have no one to proofread this, so it might read like pig latin. Also, we will do our best to update this blog as much as possible but without being bored out of our skulls at the hospital, it may be hard to find the time anymore.
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