No News, Is Good News

No news, is good news.

Ryan came home from his extensive stay at the hospital on October 6, 2012. Since then, he has not been sick enough to be re-admitted. Aside from one small cold, he made it through the severe flu season unscathed. Several doctor appointments have proven that his lungs are progressively growing and healing. The pressure settings on his ventilator have been reduced to very respectable levels and we can see that his calories are being used for full body growth and not just trying to breathe. The level of oxygen that he is requiring is still at 3 L/min, 24 h/day. But at this point weaning on the oxygen is second to weaning the necessity of the vent.

June 11, Ryan's doctors have him scheduled for his yearly tune up on his vent. The is a 3 day, 2 night stay at the hospital . The reason for this admission is not because he is in any way sick, but to monitor different levels in his blood over a period of time. There are only two outcomes that mom and I anticipate. Either, they will keep the vent settings the same or reduce some of the settings. We don't foresee them raising pressures, but anything can happen.

Even with all of the good things happening lately, we did have one scare. Ryan had a routine chest X-ray about 2 weeks ago, followed by a visit to his Pulmonologist at the Home Vent Clinic. He Was lying on the table waiting for the doctor to come in, when he started coughing. Right away his Oxygen sats started dropping rapidly, getting lower and lower. His eyes starting rolling back and he started turning blue. Immediately we hooked up his resuscitation bag to his oxygen tank and proceeded to give him hand ventilated breathes. We increased his Oxygen as high as it would go, this did not help. As mom was bagging him, she felt a lot of tight resistance when hand ventilating. After we tried this, we decided we should change his trach. So right there on the exam table, mom and I did an emergency trach change. And at last, the answer. Ryan had a large mucus plug at the end of his trach which was restricting him from receiving O2. Once we got the new trach in, his Oxygen sats started coming back up. Moments like this are rare and terrifying, but a reminder that these things can happen and panicking is not an option. It feels really good knowing that we basically saved his life right then and there thanks to the proper training we received prior to  Ryan coming home from the hospital.

Since the weather is starting to get warmer and there are not nearly as many bugs for him to catch. We have been walking Ryan on a weekly journey to our local yogurt shop. Round trip, it is only 1.3 miles, but he seems to do really well. He enjoys the small things in life, like watching the trees move in the wind. Something we often take for granted.

Over the last seven months, not much has changed in the way of Ryan's health. Growing out of the condition he has is a slow, slow process that takes years. We don't see daily or even weekly changes. But if we look back over the last seven months, things are progressing forward.

New Year / New Start

We made it. We missed Christmas at home in 2011, but 2012 was a different story. Ryan successfully stayed home.

Ryan did very well with all of the visitors we had on Christmas day. We took him out of his room and set up everything in the living room where all of the people would be. He did decide to take a nap in the middle of everything, but we can't really blame him. It was a big day. Every year our city escorts THE Santa up and down every street on the city fire truck. They drive by slow with sirens in full volume. Ryan didn't get to see them this year, and actually slept through all of the noise. I decided to take a video of them passing with my phone so I could show him when he woke up. He was mesmerized by the sound and appears to be in a trance when watching the video. Next year we are hoping that he is strong enough to wait in the front yard when they come by.

Even though Ryan did not spend this Christmas in the hospital. It did come close. We were fortunate to only visit the local Urgent Care. We noticed a day or two after the 25th that he was more irritable than normal. His body temperature was going up and he was grabbing the back of his head a lot. We came to the conclusion that a visit to the doctors was needed. On our visit to the Urgent Care on 12/28 it turned out that Ryan had a double ear infection. His right ear was more infected than his left according to the doctor that looked him over. Antibiotics were prescribed and we were sent home. Sunday morning, 12/30, we noticed a  blood tinged fluid draining from Ryan's right ear. We didn't want to take any chances, so back to Urgent Care we went. This time we had to go to a different office due to the first one not being open on Sunday. The doctor there changed his antibiotic to a different one and increased the dosage to really hit the infection hard. It took a few days for his ear to stop draining, but for several days now there has been no fluid. He appears to be back to his old self again. We think Ryan's ears were jealous that they were not getting medical attention like the rest of his body.

Other than that, the past two weeks have been pretty uneventful.

Ryan has had some visitors the past few weeks that work with him on learning and functionality. Occupational Therapy and Infant Play Therapy stop by once a week each for an hour and work with him and teach us what they are doing so that we can work with Ryan during the week while waiting for their next appointment. It is an extremely slow process that will take time to show results. It's a little like watching grass grow.

Old Car Seat

New Car Seat

This Friday Ryan has an appointment with the home vent clinic that he sees. We are going to see if they are are brave enough to go down on some of his vent pressures and get Ryan one step closer to getting off of his vent. But in order to get to his appointment, Ryan will get to ride in his new, big boy car seat. He was just too squished in his infant seat. We tried out a test run on the floor in his room to get the straps adjusted properly. We think he likes it.

For more photos of Ryan, follow us on Instagram @hopeniccolle & @j_tatar.

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.

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

Hospital Admission #5

I think I may have jumped the gun on writing this week's blog. I was about 85% complete with it , when the topics I was writing about didn't seem appropriate anymore

Ryan made it 20 days in the sub-acute facility when respiratory stress kicked in and Thursday afternoon (6/28/12) he was transported back to the emergency room at Loma Linda Medical Center. After taking x-rays it was decided that he had some fluid infiltration in his lungs and the docs said he has pneumonia yet again. Due to the transport ambulance not having a transport ventilator, Ryan had to be hand ventilated from the facility to the hospital. This called for the ambulance and fire department to use lights and sirens. As soon as he was transferred from the ER to his home away from home (the pediatric ICU), Ryan appeared to make a 180 degree turn around. He was back to his happy, smiley self. It was almost like he knew were he was.

His first night back in the hospital was going well until about 4:30am. Ryan's circuit that connects to his trach was disconnected. We are sure that Ryan is not in need of a vent to stay alive, but Oxygen is very important. The alarms that notify us when one of his vital signs is outside of the set parameters was sounding, but not loud enough for anyone to hear. Mom woke up and heard the alarms going off and noticed Ryan's eyes were starting to roll back, his whole body appeared limp and he was completely blue. Where his oxygen saturation level is supposed to be 80%+, it was reading 20%. After mom alerted the nurse and respiratory therapist, they were able to bring him back up and his color was back to rosy pink. Ever since that incident there has been no signs that anything ever happened. Friday, Saturday and Sunday have been progressively better and he is making his way back to where he was a month ago.

Our goal for Ryan is to fix the infection he has right now and get him to the point where we can leave from the hospital and go straight home. The sub-acute facility was an OK idea originally, but after being exposed to one for three weeks it is not the type of place that Ryan needs. We are positive that being home in the care of mom and dad is by far the most practical solution for Ryan's well being.

This was another stressful week, but mom and I are much more comfortable having Ryan in a place that the staff and doctors know him and are able to react to his fragile needs.