THE MIRACLE OF TREVS LIFE

WOW! I do not even know where to start... So much has happened this week, Trev is 6 lbs 7 oz. today, he has graduated to level III feeding, which means he is now required to eat a certain amount to stay on this level, he is doing quite well. His oxygen setting is down to 1/4 of a liter and he will soon be off of oxygen support. We watched our son go thru so much this week. He is truly a miracle! Trev has been so sick, he still has not been able to produce RBC's. They have been pushing him and pushing him for 10 days to see if his body would kick in and produce RBC's. I cannot even begin to explain the pain that Jannell and I have suffered watching our son deteriorate every single day. His hands were as white as paper, I could see all the blood vessels in his little head as he became sicker and sicker. The treatment plan was to us that they need to push his body to the point that he is required to produce RBCs to survive. His Hematocrit got to the low point of 20 on Sunday, it should be above 40! This is extremely low. My little boy is such a fighter, he was so tired and was becoming symptomatic as he was fighting for his little life with every ounce of his body. He was starting to de sat at low levels which he has not suffered from for 3 weeks. Jannell and I have been completely crushed as every second that goes by our sons health deteriorates. Jannell and I left the hospital on saturday night worried sick about Trev, but had an overwhelming feeling that the something else was going on inside his body and the treatment was wrong. We went home and starting searching on the web for answers. Jannells mom sent us an e mail on a disease called Transient aplastic crisis anemia which is caused by ParvovirusB19 "fifth disease" The reason that Trev was born early is because of the development of fluid around his organs (hydrops) due to being exposed to the parvovirus. Trev has received numerous blood transfusions that will sustain him until the donor red blood cells die, but he will not produce RBC's on his own. Jannell and I discovered a treatment called IGG therapy, which is an intravenous administration of immunoglobulins into the blood stream thru a transfusion. We brought this discovery to the attention of the NICU. They told us that Trev does not have the Parvovirus in his system anymore and that it would not be of any use, but Jannell and I disagreed. The NICU staff determined that the reason for his failure to produce RBC's is more than likely not due to Parvovirus because he is not shedding the virus anymore, it only lasts for 2-3 weeks. Trevs condition is so rare, and they could not diagnose why he could not produce RBCs. There is a condition called Chronic Parvovirus that will linger in the body and suppress the bone marrow which disables the bone marrows ability to produce RBC's. We went to the NICU for rounds on Sunday morning again with our researched material. They stated "Trevs crit has dropped to 20 and we want to continue to push him until Wednesday to produce RBCs on his own." They again stated that they do not know why he is not producing, but we need to continue to push him until he produces RBCs on his own. I had an overwhelming feeling that this plan was entirely wrong, I told them that this idea does not make any sense,that we have been pushing Trev beyond his threshold for over a week, and that we need to do something different. They said "ok" what would you like us to do? I stated that they should do a blood transfusion as soon as possible and that I was concerned for his life if they did not. I stated that I have watched him each day become more and more sick and there is something else going on inside his body. They told us that we know our son better than anyone and asked us what we would like them to do? I can't even begin to explain how difficult it is to make a decision of this magnitude and it also struck me with the realization that the NICU staff really was stumped as to how to treat his odd symptoms. We decided to transfuse him that day to boost his crit levels. The NICU staff at IMC is one of the best in the country, but Trevs condition is well beyond "textbook" treatment. I was walking into the NICU on Sunday afternoon to be with my son during his transfusion, my phone rang and it was my wife and she was crying. I asked her what was wrong? She stated to me that she was planning on signing our son Drake up for a Kindermusic class which started in September. At the time she had a feeling for some reason to not sign him up for the class, she informed me that she received an e mail from the Kindermusic class instructor that the entire class has been infected with the H1N1 virus and to not attend the class. We felt so blessed that Jannell followed her instinct and did not sign him up. This could have been devastating if passed to our family and potentially to Trev. I felt an overwhelming feeling of comfort as I looked at the whole picture and this entire experience for the last 10 weeks. I truly believe that everything has happened for a purpose and that Gods hand is watching over him and protecting him. I entered Trevs room, he had an IV inserted into a vein in his forehead as they were just starting his blood transfusion. I picked him up, sat down, and held him for 3 hours. As he laid in my arms sleeping, I watched him slowly start to turn pink and receive all of his color back as his RBCs were boosted with donor cells. The wonderful staff of the NICU set us up with an appointment with Pediatric Hematologist Specialist Dr Yahish. He is a world renown Hematologist who has been practicing for 45 years. He has wrote numerous books and is the most brilliant man I have ever met in my life! We met with him on Tuesday, I remember the sick feeling of helplessness that I felt in my gut on the way to visit Dr Yahish, Jannell and I were extremely concerned for Trevs health. We sat down with Dr. Yahish as he blew us away with his knowledge of blood and the Parvovirus, in fact, he actually knew the man who discovered Parvovirus. Jannell and I took all of our research information of the Transient Aplastic Crisis Anemia as I stated above. My jaw dropped as I listened to this man re-site pretty much word for word all of our research that we performed on the internet, he answered my 3 pages of questions before I could even ask them. He stated that he wanted to see Trevs blood smear as soon as possible to see if Trev is a candidate for IGG therapy. This man has only seen 3-4 cases of Parvovirus in babies and that it is extremely rare. Based off of what we stated to him in regards to our sons condition, he felt that he was more than likely a candidate for this treatment. He stated that in his 45 years, he has never performed a IGG therapy on an infant, but it would not harm him. We left his office overwhelmed with joy knowing that there was now potential hope for our son! I called the NICU immediately, told them the news, and to get the blood smears to Dr. Yahish immediately. Today we received the word that Trev is suffering from the Parvovirus and it is still suppressing his bone marrow and THAT is why he is not producing RBCs. Dr Yahish felt the IGG therapy would benefit Trev, he received the transfusion today.
My wife attended rounds this morning and receive the news of the last thing that I would have ever expected. They stated to Jannell that Trev is doing extremely well, he is eating, growing, not suffering with apnea or de sats and it is time to send him home this weekend on Saturday. Jannell stated to me that she did not understand because she was so shocked, they had to repeat the news to her. To say the least, she was stunned! The staff at the hospital actually chuckled at the shocked look on Jannells face, we have been there for so long we are great friends with all of the NICU staff. They continued to state that Trev is doing so well we cannot keep him here he must go home, they will treat his blood complication as an outpatient at Primary Children's Hospital. OUR SON IS COMING HOME!!!!!!!!! This has been the most difficult/exciting week of my entire life! Complete one extreme to the other to say the least. Trev was on the brink of death and six days later they are stating to us it is time for us to take our son home. Jannell called me and told me the news over the phone. She had to tell me 3 times because I refused to believe her as I am sure you can imagine. He is scheduled for discharge sometime this weekend, we were planning for sometime in December for Trev to come home at the earliest. To be honest we are so caught off guard we do not have anything ready for him. We need to paint his nursery, buy baby supplies, clean, etc. as we prepare for him to come home! I want to mention how grateful that I am for the NICU staff at IMC. Without there care,treatment, and support there is no way that my son born 3 months early would have had a chance at life. The hospital is truly amazing and we feel blessed beyond words for their care of our son. I want to give a special thanks for all the friends that have been praying and fasting for our son. Your support is what has carried us thru this entire experience. I am so grateful to be a member of the Draper 7th ward, the love, support, praying and ward fasting for our family has strengthened us beyond words and I want you to all know that your prayers were felt and you have blessed our lives to a level that I did not know existed. I want to take a moment to mention that we do appreciate all of the support, please understand that when our son comes home that we are under strict regulations to not have visitors. It is the hite of the flu/H1N1/RSV season which would all be detrimental to Trevs health if he was exposed to one of these viruses. I will continue to update blog and be sure to keep everyone informed. THANK YOU ALL! May God bless your lives, as you have ours.