Over The Lips, Past The Gums, Lookout Stomach Here It Comes

After learning about the new team taking over the home vent program that Ryan would be apart of, we asked to have him transferred. This week mom and I heard that the doctors at Children's Hospital Los Angeles have accepted Ryan to become a patient at their hospital. In order for Ryan to be enrolled in the home vent program that CHLA offers, he has to be a patient of theirs first. The only problem is that the unit that he would go to is full. So as soon as they have a bed available, Ryan should be moving. Who know when that will be.


Ryan passed his swallow study on 7/30 and since then we have been trying different liquids and baby food to try and teach him how to eat orally. Every time we would bring a bottle or spoon to his mouth, he would try and swat our hands out of the way and would make faces and whine. We know it will be a long process to to get him to take and enjoy food. Yesterday, Mom thought it was a good idea to try to feed him rice cereal. Her thinking was that the sweetness or flavors we were giving him might have been a lot more stimulation than he could handle. The rice cereal was bland enough and he seemed to really enjoy it. There was no swatting, faces or whining. He still hasn't grasped the concept of anticipating the next bite, so we have to sneak the spoon in when we get the chance. In between all of the small rice cereal bites we added a small amount of carrot baby food. He didn't seen to notice, but we thought it was fun.

This week was semi uneventful, but I guess that is a good thing when a hospital is involved. When Ryan gets transferred to CHLA we should have more details and new things to talk about.

Photo Timeline *please use viewing precautions around children*

This week has been a little slow on any updates about Ryan. There was only really one event that stood out. The doctors at Loma Linda are trying to send Ryan back to the sub-acute facility that he was at in the past. Mom and I are putting our feet down to say that he will not be going back to that facility. We are concerned that his health and safety could possibly be compromised and the facility did not prove themselves worthy the first go around. There are no second chances for them. We have learned this week that the pulmonary team will be taking over the home vent program that Ryan is going to be enrolled in. This is another problem for Mom and myself. We do not have confidence or agree with the decision that this group has made in the past. We have asked the intensive care drs to put in a request to transfer to Children's Hospital Los Angeles. We will be able to start fresh and hopefully get new insight on Ryan's care. We should have an answer by next week.

We are going to use the rest of this post to show a timeline of photos taken throughout Ryan's Life. Some photos may be more graphic than others.

                                          3/8/11

                                          4/3/11

                                                       

                                          5/12/11

                                          6/9/11

                                          7/10/11

                                          8/15/11

                                          9/15/11

                                          10/18/11

                                          11/19/11

                                          12/10/11

                                          01/01/12

                                          2/23/12

                                          3/3/12

                                          4/3/12

                                          5/17/12

                                          6/5/12

                                          7/22/12

                                          8/5/12

As of today, this is the progression of Ryan's growth. Some photos are happier than others, but the result is well worth it.

Week 32 of Hospitalization

We would like to start by answering a question that was posted in the comments. The questions was, "Did he get his PICC line in?". Yes, after four attempts at starting his PICC line (referenced in a previous post) the team was able to place the line for his antibiotics. His coarse of antibiotics has been completed since then and the PICC line has been removed. These lines are meant to be a long term solution for administering medication or fluid. Ryan has had these lines before, but the doctors take them out as soon as they know they don't need them due to Ryan getting infections in his blood stream. He has had a yeast infection in his blood in the past and it was very bad for him. He came close to not recovering.

The doctors elected to take out Ryan's PICC line on Thursday (7/26) to prevent an infection. Two days later on the morning of 7/28, Ryan had a fever of 103.3 degrees. When a patient gets a fever, the hospital's protocol is to take cultures to test for infections. They did this with Ryan that morning. The results from these cultures usually take about 72 hours to come back. Sometimes if a bacteria grows from these cultures early they are able to give a preliminary report about what has grown. The preliminary report from Ryan's cultures came back negative and to this day they are still reading negative for bacterial growth. We still have not heard an explanation for why he got a fever so high with no infection. He is teething, but we aren't convinced that he would spike a fever that high for teeth. We could be wrong though.

We followed up with the doctors at Loma Linda this past week to see if they had heard anything from the doctors at the Nationwide Children's Hospital in Ohio. The doctors from Ohio stated that they would not change anything about Ryan's care. It was said that the doctors at Loma Linda are doing everything they would do in Columbus. They suggested that the Loma Linda doctors watch his weight very closely to ensure that he is continuously going in the right direction. Mom and I feel that they monitor his weight well. They weigh Ryan in his crib with a built in scale. This continuity of weight measurement is to be sure that there are minimal variables due to how a different scale would read. The read out of weight measurement changes daily for Ryan because of fluctuations in his fluid retention. But he has had a steady upward gain on average. He is currently at 9.2 kg (20.24 lbs).

The final point from the previous week that we would like to bring up, and is the cause for this post being a day late, is that Ryan was sent downstairs to the Radiology department yesterday (7/30) to complete a swallow study. This study is able to tell if Ryan can swallow liquids properly and that those liquids go to the right place. Some children pass these tests, where the liquids go to the stomach. Some kids do not pass when they swallow the liquid and aspirate on it. They are able to actually see the liquid, through a constant x-ray, go to the lungs. Ryan passed his test with flying colors yesterday. They tried three different consistencies of liquid for his study. They gave him water first, formula second and finally a rice cereal mixture. The therapist giving the test was impressed that he passed. We are now able to work with Ryan to introduce a bottle or even a spoon in the near future. It will be a long road for him to recover from the oral aversion that he has. But if he is anything like me, he will love to eat in no time.

For any questions, you can either post a comment or send an email to ryansepicadventure@gmail.com.

Second Opinion

Ryan seems to be in a rut lately. Mom and I have been attempting to figure out if there is any way we can make any progress in Ryan's recovery. We decided to do some research online, and look for any doctors or hospitals that might have the answer we are looking for. We came across a doctor in Baltimore, Maryland that claims to specialize in Ryan's lung condition. We were really excited to know that someone out there possibly could have the qualifications that would help or even improve Ryan's care, but we thought he needed more. That's when a link for a children's hospital appeared. It was like somehow we were supposed to click on this link. Every possible combination of search keywords we entered gave the results of Nationwide Children's Hospital. After opening their website, we found that this Columbus, Ohio based hospital has an entire department that specializes in premature infants with Bronchopulonary Dysplasia (BPD). Worst case is that this hospital will say that Loma Linda Children's Hospital is doing everything that they would do there in Ohio.

We asked the doctors here if they would contact the doctors there to see if there is anything over the phone that they could recommend. The doctor did call and spoke to a doctor by the name of Dr. Shepard. After the call had taken place, we were told that Dr. Shepard seemed to be interested in Ryan's case. He asked that the team at Loma Linda send him selected items in regards to Ryan's situation. Mom signed a release to transfer medical records. Within a day or two those medical records were sent via FedEx to Columbus.
We are currently waiting to hear if Dr Shepard has found anything that he would do different. As said before, if he does not have any additional recommended treatments or tests for Ryan's plan of care, we haven't lost anything.
We understand that Ryan has a typical disease for babies being born at 24 weeks, but at the same time he is very unique. Mom and I are hoping that this uniqueness is what intrigued Dr. Shepard to take a look. The chances of Ryan being transferred to Nationwide Children's are minimal, but we will do what ever it takes when it comes to Ryan's health.

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