See You Next Year :)

This week was a busy week for Ryan.

Thursday (12/13) we were at the hospital at 8:30 to check in for an Echocardiogram that Ryan's cardiologist ordered. Their goal was to attempt to get a vague idea of his pulmonary hypertension status. His cardiologist is absolutely convinced that the pulmonary hypertension is not present. Her thinking is that the settings that are on Ryan's vent are so high that his lungs are being hyper-expanded (blown up like a balloon). By having such hyper-expanded lungs, that doesn't leave much room in his chest for his heart to work to it's full potential. His lungs squishing his heart is making it so that his heart is not receiving blood like it should therefore the blood that passes through his lungs is not being oxygenated the way it should. Her theory is that this is why he is requiring so much ventilator support, O2 and medication. She feels that by lowering his vent pressures, everything should start falling into place. The pulmonologist is the only specialist authorized to lower vent settings for Ryan. The cardiologist is guessing that the pulmonologist is reluctant to go down on pressures due to the outcome of Ryan's previous cardiac catheterization that measured the pressure that his heart is pumping. It is thought that those numbers were so bad and inaccurate due to Ryan being as sick as he was. Now that Ryan is doing so much better, health wise, the cardiologist would like to have another cardiac cath procedure to prove that Ryan's cardiac output is a little more on the normal side. Keep in mind, the last time this procedure was done, Ryan had a large blood clot in his right leg. This caused all kinds of complications and he was on blood thinners to assure that the clot would not grow and ultimately stop blood flow. Mom and I are a little nervous to have this procedure done because of this past procedure. Plus it always gets the mind thinking, when the doctors tell you about possible complications that might arise. Even though they say the chances are low. But back to the topic. Due to scheduling and that this is not an emergency, the cardiac cath will not take place until February 21st.

The following day was a field trip to the ENT. This appointment was a follow up to satisfy discharge orders from the hospital. The ENT was impressed with the way Ryan's trach site looked. He didn't feel that any changes needed to be made and that by the time we see him next, Ryan could possibly be sprinting off the vent. I think he is getting a little to far ahead of himself. Sprinting is a term used for vent patients that are strong enough to breath on their own for periods of time while not connected to a ventilator. This is typically done while the patient is awake and is started at small increments and gradually raised to larger time lengths. Ryan's vent pressures and O2 requirement would have to be dropped drastically from where he is now. That might take awhile. When parents have spoken to as many doctors as we have, it sometimes feels that they tell you what you want to hear. Not all of them though. In fact, some are direct and to the point. We prefer direct and to the point.

Looking back at previous posts, I noticed that there was something missing. After Ryan was discharged from the NICU, the hospital asked if they could interview mom and I and create a video of our story at the NICU. This video was to be shown at the annual fundraiser that the hospital puts on. The crew came to our house and interviewed us in our living room. They had asked us if we had any photos of Ryan that they could use when editing there interview compilation. Ha, little did they know I had taken around 2,000 photos to date. I copied all the photos I had and let them choose which ones they wanted to use. I think the ones they used were appropriate. The video the hospital made was about one life beginning and one life ending. Showing their wide range from neonatal care to the hospice services they provide. The most nerve racking thing about this, was that we were invited to the fundraiser gala where the video was being presented. Now for the nerve racking part. The staff wanted us to get up in front of a thousand people and speak to them about how important their donations are in keeping the integrity of care present at their hospital. Well, with all of the items they had planned for that evening, the MC forgot to call us on stage and the crisis was averted. Our video, along with their silent and live auction, helped to raise over 1 million dollars for the hospital. Below is the video that is on youtube.com. Keep in mind there are two segments to the video. So if you are able to, watch the whole video for the entire experience.

Long Time, No Blog

It has been 117 days since the last update about Ryan. Some things have changed, but also, some things have stayed the same.

Ryan was discharged from the Pediatric ICU on September 13th 2012 after an extremely long and rocky 269 day adventure. The doctors were finally confident that Ryan was stable enough to go out into the world.

Bringing him home was just as nerve racking as it was the first day we brought him home from the NICU. But this time was different. Ryan required a lot more attachments. Mom and I were fortunate enough to have 7 months of training when it came to caring for Ryan's trach and ventilator. There were so many complex settings, tubes and wires that we had to learn about. By the time the doctors wrote the discharge order, Mom and I were 100% sure that we would be able to care for Ryan and that if something were to go wrong, we would be able to address the problem until help arrived.
We were given our first test with something going wrong on that day. We were not even done loading the car when Mom noticed Ryan's nose and lips were starting to turn blue and his eyes were starting to roll back. She turned to look at the pulse oximeter and noticed his blood saturation was at 42%. For those who are not familiar with what this means, a typical person's blood sats are usually in the high 90% range. The doctors were comfortable with Ryan's sats being at 85% or higher. Satting at 42% means that Ryan was not getting enough Oxygen. From our training at the hospital from the nurses and respiratory therapists, if something is not right, go straight to hand ventilation. We quickly hooked up the ambu bag to the oxygen tank and immediately started hand ventilating him. His sats rapidly went from 42% to 100%. While mom was hand ventilating, I was on the phone calling the PICU to get a respiratory therapist down to the parking lot. An RT, the charge nurse and a doctor descended 5 flights to the parking lot fast. But by the time they got to the parking lot, Ryan was stable and alert. We all came to the conclusion that his O2 line was kinked that supplies oxygen to the vent. After we fixed that problem. We were packed and ready to go.

The 30 mile trip home was the longest 30 miles we had ever driven. After our little scare in the parking lot, and being away from the assistance of the hospital staff, we were on our own. The rest of the drive home went smooth. When arriving to our house, we were met by two nurses from our home nursing company and a respiratory therapist from the company that supplies Ryan's ventilator. We transported him into his crib. And for the first time in the year and a half that his crib was assembled, Ryan was laying down in his own room.

The first two weeks really took some adjusting. Making sure everything was in it's place and that Ryan was acclimating to his new surroundings. Just as we were starting to get comfortable, we noticed Ryan was working a little harder to breath and that we would have to raise the amount of oxygen we were giving him. We found it in Ryan's best interest to go back to the emergency room at Loma Linda University Medical Center as a precaution. We know how fast things can turn bad, so we didn't want to take any chances of anything spiraling out of control. We stayed in the PICU for two more weeks to find out that there was no explanation for why he need more O2. With the doctors signing off on his release, we were on our way home again.

Ryan has been home for two holidays so far. Ironically the same two holidays as last year. This year Ryan was a sno-cone. He didn't want to stay in his costume, so we were only able to take a quick photo. For Thanksgiving, Ryan sat at the table in his high chair for the first time. He did so well. There was no complaining and he was so comfortable that he even fell asleep. Our next holiday is Christmas. He hasn't been home for a Christmas yet, so we are excited to try and make it.

Ryan has now been home since October 6th, 2012. This period of staying home is now his record. We have had several doctor appointments since his discharge from the hospital, and everyone is impressed on how well Ryan is doing. There has been a decrease in some of his vent settings and his prescribed medications throughout these last two months, which can only mean that his body is starting to heal itself and he is getting stronger. Every day that we stay out of the hospital is one day closer to Ryan living a life that is comfortable for him.

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.