Adventures with RSV & Pneumonia

So February 16th was my Birthday, I turned 34 yay!!!! Some very troubling events happened that day and well lets just say the best gift I got was COLE :)


And here is the story...........



February 13th I noticed Cole's cold just wasn't getting better so a call to his Dr was made. All the boys in the house are sick so I just thought they all had this nasty cold that is passing around the town. Dr. said Cole was weezy and maybe he had asthma along with a cold. I went to 5 different pharmacies to get the breathing meds and nebulizer I felt defeated that Friday for sure. As we went through the weekend, Cole kept spiking a temp of 102 every time it would go down it would just come right back his o2 was in the low 80's. Low o2's are nothing new for Cole but that will be on another post. Monday was here and it was my Birthday Presidents Day so I had ALL the Boys at home as school was closed. I called Hubby and let him know baby was still sick and burning up about 103 meds were given and I undressed him and gave him a breathing treatment as he had labored breathing. Auntie Misty came to visit with Cousin Rocco to deliver Auntie Chell (that's me) a birthday gift. Auntie Misty helped give baby Cole his breathing treatment as asthma is not something new to her, Rocco has severe asthma and has had it since 9 months of age. Breathing treatment was over and Cole was still struggling to breathe at that time Hubby came home and we started packing a bag. We knew birthday or not it was time for Cole to go to our local ER. I must of called his pediatrician 17 times I was furious no one ever called back!!!!!!! Despite no calls from the pediatrician we headed to the local ER, I kept saying they will just send us home and Hubby looked at me and said "better they look at him and check him out then to keep him here and he get worse."

We arrived at the ER about 5:40 pm 2/16/15 did the whole check in thing and we waiting only 2 short minutes before the triage nurse called for Cole. His temp was still high 102.5 and his o2 was 88 yikes, what is going on I was thinking. We went through with the nurse he has labored breathing which was apparent because his little tummy was going so fast to get air in and out of his lungs it was more than noticeable. At that point I looked at her and said I bet he has RSV!!!! We were taken to a room immediately. By the time we walked to the room and sat Cole on the bed the ER there was a Doctor and 2 nurses by his side checking him out tests were order and breathing treatments were given again. I have never been helped that fast in the ER EVER!!! At that time by the look on the doctors face I knew something was wrong. Chest X-ray was ordered along with tons of blood work IV was started, I knew we weren't going anywhere anytime soon. We notified all family via social media and text to let everyone know what the status of Cole was. 2 hours later the ER Doc confirmed Cole had pneumonia and an RSV test was ordered as well. I knew in my heart that Cole did have RSV which was unsettling because the year before he had the Synagis vaccine and this year's dose was approved but his cardiologist and pediatrician didn't think it was necessary. 2 more hours or so and it was confirmed Cole did in fact have RSV and we would be going to Stanford where his cardiac care team was. Lucile Packard is the Children's Hospital for Stanford and they sent an ambulance to transport Cole. 10:30 pm LPCH showed up to get Cole and make sure he was stable enough for our ride.

We arrived at LPCH around 12:16 am 2/17 in the PICU not a place we wanted to be again but it was necessary. They got a co-sleeping bed for Hubby and Cole and I went to a sleep station to get some rest once he was all hooked up and situated.  Around 4:30 am Coles oxygen dropped in the low 70's to 80's a place we haven't been since pre heart surgery, Cole was place on oxygen a low amount but it helped. Also Coles blood pressure was pretty high. Rounds were next and as a heart mom or a mom that has been through these rounds you notice your child may show off and be extra awesome looking during these rounds Cole did just that and was kept in the ICU till that evening then transferred to the step down unit. Still on minimal oxygen his o2 levels went back up great. During rounds it was mentioned about Coles history of his low o2's with his bluish and grey spells that started happening after his repair that was done 7/5/13, Pulmonary was called for a consult.


We were put on the 3rd floor on the East wing in an isolation room as RSV is highly contagious, the bright side to this we had a room all to ourselves which was awesome. Did I mention that LPCH has a movie on demand for the kids and Frozen was an option, it's safe to say we watched Disney's Frozen over 20x's. It kept Cole occupied and for the most part and very content thank GOD we brought baby which is Coles security blanket ( by the way he named this blanket himself)

 Pulmonary came for a visit and Dr Conrad was the Dr she is noting but brilliant and a genius!!!! She may have even determined a problem that I have that I could of passed down genetically to Cole.
Cole had worn a 24 halter monitor months previous to record these blue spells ordered by Dr. Punn his cardiologist, in those 24 hours 3 low o2's were recorded in the low 70' to high 80's it have these episodes recorded makes a parent feel less crazy and overly dramatic trust me and all of those episodes are in Stanford's computer system in Coles chart. At some point the referral to pulmonary had been lost from that last visit but all that mattered was that we were being seen now. 2 test have been ordered a Chest CT Scan with Contrast and a Bubble Echo all will be done while Cole is sedated with he will need a Cardiac anesthesiologist to help with the sedation. This will be a team effort and should hopefully be happening sometime next week. What ever the test uncover some procedures will need to be done to fix the problem and or problems. I really don't know if I want to get into the what if's at this point it will just make my head spin,  that will be another blog post so be on the lookout. Cole was released from Stanford late Thursday evening and seems to be doing better despite his low o2's . He is happy today and I am blessed to have him home running around back to his ornery self LOL. Now we wait for the testing and the out come of how to fix Cole so he can get back to his self and keep growing. Praying is all we can do and trusting that the Lord knows what is best for Cole and that having faith that Cole will be fixed.

    Lucile Packard came and got Cole

               Cole in ICU at LPCH

                Cole and Mommy

      Nurse Veronica was Coles favorite

        Kiss me mama I'm feeling better

 Beautiful quote sent to me by a wonderful colleague:

"The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen."