Thursday, April 8, 2010

Can you say PRO-CRAS-TIN-A-TOR?

I can but it won't be until next week when I get around to it...
I am finally getting around to posting about Ry and his trip to the hospital. Here goes nothin!

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(This is Rylan the day he finally got his PICC line out, April 5th. That's one happy little boy!!)

(deep breath)        Ok, so I have so much to catch up on it's not even funny. I will be posting events starting February 15 and going through now and STILL won't even be scratching the surface. This post will be mostly dedicated to Rylan's hospital fiasco considering that it took up the bulk of the time period. However, there will also be pictures that have nothing to do with it. Bear with me since I really believe that it is important that I get this down as our family journal.I have written up, in story/journal form a record of the exact details of his hospitalization and dealings with the dr.s and home care nurses which ended up being about 15 pages, so this one is going to be VERY condensed and simple.
It all started February 10th when Rylan started fevering a little. By the end of the weekend he had really gotten worse with a rash, little appetite, sleeping most of the days, etc. Monday morning I knew something was seriously wrong, it wasn't just some flu or cold so I dropped Calyn off at Mom's at 6:00am and took Ry to Redi Care. When we got there they examined him and immediately told me that he was having breathing problems and that he needed to go straight to the ER. They offered to take him in the ambulance but since it was just next door practically to the hospital I told him I would take him. They hooked him up to an oxygen tank with an adult mask that practically covered his entire face and I drove him the block to the ER.
When we got there the nurse came out and grabbed him and took him straight back. They hooked him up to machines and took his xray. The doctor told me that he had pneumonia! I was completely shocked. They admitted him within the hour and got him his own personal nurse who camped out at a little desk right outside his room and asked us to keep a path to him open so that she could see him at all times. She said that his was using the max amount of oxygen that their machines would allow without having to hook him up to a respirator and she had to watch his levels very closely. When the doc got there that night he told us that Rylan had an infusion on one of his lungs, which is fluid trapped between his lung and the sac that holds it.
He said that they could try draining the fluid which would greatly reduce the pressure in his chest and make him very comfortable but if the fluid returned they would have to send him to Primary Children's in Salt Lake to have a chest tube put in that would continuously drain the fluid. He also told us that 90% of the time the fluid DID return and told us about a boy that was in there a couple weeks ago with the same thing who was still in Utah with the chest tube. That's promising! They drained it first thing the next morning and said there were 410cc's (which is equivalent to half liter) and that they would take an xray the next morning to determine whether or not the fluid had returned. What a night that was!! The next day we waited and waited for the results until finally the nurse told us that the fluid had NOT returned!! What a relief! Finally good news! Meanwhile our poor little man was absolutely miserable. The nurses were in our room every hour or so administering antibiotics, checking his levels, giving him his breathing treatments, etc. Rylan was so scared of anyone coming in the room by the 2nd day because they were usually there to hurt him from his point of view. It is so hard to explain the pain in seeing your fragile little child looking so small in a hospital bed with a rash over his entire body, every breath hurting him, IVs hooked up to him, pain in every joint of his little body, and confusion in his eyes as to why we are not helping him. With the fluid gone his lungs finally started to heal and the pnemonia was subsiding but the infection, which ended up being strep (which caused the pneumonia) was still toxic which meant it had spread over his entire body. His skin began sluffing off, his eyes burned, etc but the doctor told us that we could take him home Friday with a PICC line (long term IV) in his arm which we used to administer his antibiotics every 6 hours (not the nurse, Devin and I; can you say overwhelming?). He was so sore and tired that he couldn't walk, sit up, or do much for the first few days. He wasn't able to walk until about the 2nd week we were home.
Slowly but surely he improved and when I say slowly, I'm NOT kidding. The nurse came over every week to change his dressing, check his PICC line, and draw blood for labs. The thing they were watching in the labs was called his sedimentation rate which is also his inflamation level and determines how much infection is still present in his body. For a month straight it stayed "above 120". Well, the machine only measures up to 120 after that it just reads "above 120" so who knows how high he actually was. Anyway, a typical person's sed rate should be right around their age, so Rylan's SHOULD be 2 or at least below 10 would be normal. Finally on March 16th (a month later) it dropped below 120, it was 76. Finally!! We were so relieved to see him improving, also that gave Devin and I the OK to go on our scheduled trip to Cancun the next week. Up until them I was pretty sure wouldn't be able to go. Neither of us would've had any fun leaving him behind that sick. Mom was nice enough to take on our nursing position for him and did a really good job keeping him well!! Since then each week he came down until finally on March 30 the doc said he was at 8!!! Now we would just keep the PICC in one more week to do labs one more time and make sure that without the antibiotics he didn't digress. The next Monday, April 5th, the nurse came over to draw blood for the last time. Later that day after the doc reviewed the results of the labs he called to give me my favorite birthday present of all time: he said it was time to be done with all this stuff! To take the PICC line out once and for all!!

Below are pics of Rylan in the hospital. Keep in mind that I was not exactly in the frame of mind to have my camera there and take pics, not exactly a happy time, you know? But I did take some pics with my PHONE CAMERA just to have a few so they are not the best quality. However, they say it all. Especially the 6th one. It is the day Rylan is going home. I slept in that bed with Rylan every night except for one, when Devin slept with him and I slept on the chair next to the bed.

That smile says it all, he had not been outside all week and had been asking to go in Papa's truck so many times that we decided to drive him home in it. This was the biggest smile he'd had all week!!

I HAD to take this picture to show how skinny he got. His bum was nothing but a wrinkle of skin.I mean, I realize he was small before, but this is pathetic!

These were some of the best smiles he could muster for the first week or so home.

Here he is feeling much better, still has his antibiotics, but is up and around, almost back to normal. Calyn got a stamp kit for her birthday and Rylan found the stamp pad and decided he needed a little more color in his cheeks...

This is his nurse, Debbie. She came every week to change his dressing, check the picc line, and draw blood from it for labs.

Here are some pics I took of Cal. She looked so cute in her outfit so I made her come model for me AGAIN. Isn't she a natural?