Week Three At The Hospital

This post is going to cover events that have taken place over the past two weeks.

Ryan was admitted to the hospital again with an infection and pneumonia. They placed him on several antibiotics that were supposed to kill the bug. Keep in mind that has extremely fragile veins and the antibiotics that are given through the IVs are very harsh. The harshness of the antibiotics cause the IVs to not work properly and in turn a new IV has to be placed. In the past 3 weeks that Ryan has been at Loma Linda, he has averaged about 2 IV placements per day. Imagine having someone poke you with a needle twice a day for 19 days. That is a total of 38 different IVs. Even though he handles it really well, it can't feel good. The Drs have talked about placing an IV that goes deeper in the the body that is designed to administer a higher volume of meds and will not have the same affect on the veins as the peripheral IVs do. A special team of nurses have tried to place the Peripherally Inserted Central Catheter (PICC) line three separate times since this admission. Being that Ryan's veins are everything but straight, they have not been able to successfully insert this new line. There is word from the Drs that they are going to try and place one through his leg today (7/16/12). This will be the fourth and final attempt at this. The course of antibiotics is scheduled to run for a little less that two weeks.

Last Monday (7/9) the doctors tried to send Ryan back to the sub-acute facility. Mom and I were very adamant that he was not going to be returning to this facility. We know that we are able to provide Ryan with the same, if not better, care that he would receive there. It was a good thing that we refused the transfer that Monday. Not even 48 hours after we were supposed to leave the hospital, the infection that Ryan had flared up again.

With the infection that never went away, Ryan spiked a fever of 103.1 one morning and was inconsolable. The infection was really hitting him hard. This event has only happened on one occasion this visit and only lasted through the morning. Since then, Ryan has been smiling, playing and watching his videos to pass the time.

The doctors have placed an order for the nurses to weigh him everyday. As of yesterday (7/15) Ryan weighs 8.7 kg. This converts to 19.14 lbs. According to a website, an average 15 month old boy should weigh around 22 pounds. 19.14 pounds might be on the lighter side at 16 months, but coming from 1 lb 12oz, this is quite the improvement in our eyes. Keep in mind that every child is different.

Mom and I purchased a highchair that doesn't come with legs. This convenient because we can just place the seat on the bed and have Ryan sit in it. Having him sit up is not only good for muscle formation, but he is able to play with his toys and watch his movies. We still have to be on close standby for support if he starts to lean. Sitting up also lets the fluids in his body move around and settle in different places to help his lung rehab. We have noticed that he really likes to look around at everything that is going on around him. He will watch people walk by and look at all of the lights on the machines and monitors around him.

We cannot express how proud we are of Ryan and his ability to fight and tolerate all of the torture that he has been through. Everything that the nurses and doctors do is for the benefit of Ryan's health, but it is the hardest thing in the world to watch him struggle through all of the IVs, surgeries, illnesses and having to stay in a bed all of the time. We have learned from Ryan that even though life can be uncomfortable and sometimes painful, always remember to smile and appreciate what you have. Ryan is our world and we both love him so much. We would do anything for him.

  - Ryan's M & D