RSV (Rotten Stinky Virus)

First of all let me apologize upfront that this is a novel of a post. This blog is my way of journaling our adventures and if I don’t write down every detail, I will forget.

Yowzers, wowzers! What a whirlwind of a week it has been, and it's only Wednesday. Actually the whirlwind started Saturday, December 29th. Liam had been coughing and had a runny nose for a few days. On Saturday the 29th he just didn't look good and was also running a fever. It was around 8pm when I called the pediatrician's office hoping their night clinic was still open. Lucky for Liam it was and I quickly took him in. (Oh how I love my peds office for their extended hours and night and weekend clinic.) Dr. B suspected that he had pneumonia and an ear infection. Home health care delivered a nebulizer that night and our orders to help him feel better were breathing treatments and a daily dose of antibiotics for the ear infection. She also wanted me to take him up to the hospital on Sunday to get a viral panel to test for RSV. He needed his G-tube button to be changed out anyway because it was leaking so we were going to kill 2 birds with one stone. Since he wasn't feeling very well, he wasn't drinking or eating and was throwing up after he would have his continuous night feeds. I was worried and knew he needed something in his belly, so on Friday I did a bolus (syringe) feeding and immediately after, the Pediasure was leaking directly from his belly/button. At first I thought it was a fluky thing but when Dr. B pulled up his shirt to do his exam on Saturday, his onesie was soaked. At this point my Sunday was looking a little busy!

When Liam got his G-tube we were told that if we ever had problems we could come to the gastroentology clinic at the hospital and they could help us. Of course with it being Sunday, no one was around. My only other option was to go to the emergency room. Once we got there they were thinking that it wasn't necessarily an urgent matter, so the RTU unit could help. They moved us to RTU, we waited, and then we were told by RTU that because he wasn't feeling well, we needed to go back to the emergency room and wait for someone to help. In the meantime we had already had the nose swab done or the viral panel to test for RSV so I was hoping that by the time we waited, we would know the results. We waited quite some time when finally a doctor came in and said "Are we treating your son for his illness? Are you aware that he isn't feeling well?" Me: "Yes doctor I am aware that he is ill. We had just seen his pediatrician last night and he is being treated with antibiotics and breathing treatments. What we are here for is his G-tube. It's leaking and it needs to be replaced. I have the kit right here; it just needs to be switched out." Dr.: "I don't know if I feel comfortable changing it out." Me: "Well if you don't and his pediatrician doesn't then who can do it?" Dr.: "You may have to come back tomorrow when the gastroentology clinic is staffed and you have them do it." Me: "It needs to be done today, he cannot eat if it is not replaced and he needs the nutrition." Dr.:"OK, let me just take a look and see. Maybe the balloon inside is leaking. I'll draw the water from it and see how much I get." He draws the water and all 4 cc's came out. Dr.: "Hmmm. Let's put the water back in and see if the balloon holds it." He fills it with water and leaves the syringe attached as he continues to talk to me. All of the sudden, plop, the whole G-tube falls out. Me: "Well it looks like you have to do it now. You just need to lube it up and it should just slide back in." He does it with my help and plop, it goes back in. He fills it with water and immediately it looked better and tighter. 4 hours later both missions were accomplished, G-tube fixed and viral panel results came back. Liam tested positive for RSV!

After a couple of days of breathing treatments and meds, Liam was perking right up. He was eating again, and was definitely on the mend. I always worry when Liam gets any sort of illness because he is so little and doesn't have much to lose so I felt very grateful that he was feeling better. I knew that it was pretty inevitable that Sara would get it but I was keeping my fingers crossed and hoped that if she did, she was healthy enough to fight it like Liam did. She did have a runny nose at the same time but nothing of concern. She was still her energetic little self and looked great otherwise so I wasn't worried. That was until she woke up with an odd rash on Monday, New Years Eve day. She has been very rashy since she has been home and of course she had that mysterious rash while we were in Ukraine. This time around, the rash was a little different, one that I had never seen before. I noticed it first on her face, but once I had undressed her, it was all over her body. The best way to describe it was little red freckles that would not blanch into skin if you pressed on them. I was a bit concerned and felt like I just needed to watch it. The next day was New Years Day so I knew that even if I wanted to, no one would be around for me to take her in. So on Wednesday I called the pediatrician AGAIN and made an appointment to come in later that day. I had done a little research of my own before we got there and the rash looked like a rash called "petechia". The doctor confirmed that it was indeed petechia but she said that she wasn't concerned if it was just on her face. (Petechia can be caused by straining, coughing, or crying hard.) When she undressed her and saw that it was all over, she said "I am really sorry but I need to send you up to Primary Children's Medical Center AGAIN to get some blood work done, including a blood cultural to see if it's anything bacterial." (Petechia is another rash that can also be a sign of the "L" word, leukemia.) I told Dr. B that I will always be a freak when Sara gets a rash and that I would much rather have her blood checked than not. I guess I will always be a bit nervous of the "L" word because of our experience in Ukraine and knowing that children with Down syndrome are at a higher risk. I immediately drove up to PCMC and had her blood drawn.

From past experience and blood draws I know that Sara's little veins are non existent. After an hour wait, 4 pokes, and a heal prick because they didn't get enough blood from a vein, we left, anticipating the results. I knew they would come quickly because the word "Stat" was written on the doctor's order. As I was leaving the hospital, Sara was very hungry and I did not come prepared with a bottle or food. I thought it was going to be a quick in and out. So we went to the cafeteria and I got her some mashed potatoes. We sat in the cafeteria for at least 30 minutes and just as I was walking out the door of the hospital, I get a phone call from the hospital. "Are you still here by chance? Sara's blood clotted and we need to do a redraw." My poor buggy needed to be poked again. I am so happy we hadn't left the hospital yet and luckily that's all it took was one more poke. About an hour later, the ped nurse called to say, "Her results came back and they were abnormal. I am not sure how to interpret them and Dr. B is busy but I am going to send another order because Dr. B wants these tests to be repeated on Friday." Abnormal?? Oh no! Please don't let it be the "L" word!

Friday could not come any sooner. I brought her back to PCMC and took her to the lab. This time they found a vein in her foot and got enough blood to do the tests. When I called the office an hour later, the results were pending and then the office was closed. I called on Saturday hoping that someone could tell me the results and they were still pending. Now I am usually an optimist but when the triage nurse said they were pending, I thought that maybe she was just saying this because she could see the results but didn't want to be to bearer of bad news. So now I had to wait the whole weekend to find out. But on Sunday Dr. B's nurse called because she happened to be working the weekend/night clinic and she also confirmed that not only were the tests pending, but they were cancelled. Oh boy, why were they cancelled? I called first thing Monday morning to find out why they were cancelled and once again her blood had clotted. Why they didn't call me back to let me know like they did on Wednesday I do not know. All I knew was that her blood work needed to be repeated a 4th time. While I was talking with Dr. B's nurse I also made an appointment to see the doctor because Sunday night Sara became very feverish and fussy, and did not look well. She told me to come in later that day but to make sure I go up to the hospital to get her blood work done before I come in. (Let’s hope third trip’s a charm.) So on Monday I went back up to PCMC to have her blood drawn AGAIN, this time waiting to make sure her blood did not clot. On top of this visit we also had other appointments this day. We even ran to Costco and Sara seemed OK. She did sleep a lot and I knew that she wasn't feeling great but I didn't worry knowing that she would soon see the doctor.

When we arrived at her appointment, Sara went downhill very quickly. Once we got into a room the nurse grabbed the oxygen saturation machine. Sara's saturation was in the 70's. Her temperature was 104 and her heart rate was 220. Let me just say I did not see this coming. She immediately interrupted Dr. B who was with another patient and warned me that she may have to be transported to the hospital by ambulance. Dr. B came in and started to give her oxygen then confirmed that yes; she needed to go back to Primary Children's. I was just there; too bad I didn't know we'd be staying! I wasn't sure why she needed to go by ambulance and why I couldn't just take her but I was told that because they administered oxygen she had to continue with it and she can get it in an ambulance but not in a car. Within minutes the ambulance arrived. In the meantime I had called Mark and asked him to come to the office to pick up Liam because he was not allowed to ride in the ambulance. I also called those who were looking after my other kiddos to make arrangements for them to keep them a little longer. I am so blessed to have such wonderful friends and family! Mark came very quickly then Sara and I were off! First time for me in an ambulance and hopefully the last! I was soooo car sick! I had a huge lump in my throat and I was doing everything I could to hold back the puke! Once we arrived at the hospital they evaluated her in the emergency room. Mark came and soon they moved her up to the 3rd floor. My parents drove up to see Sara too and my mom later stayed over to help with the kids. She’s taking care of them now thank goodness. She is my life saver!

That first night was rough! She wasn't responding as well with the amount of oxygen they were giving her and her respiratory rate was really high. Her heart rate was still high and she was working really hard to breathe (retracting in 3 different spots), plus her temperature would peak back up to 103-104. No sleep for baby or mama that night and in the morning which came too quick, several doctors came in to say that they were going to start IV fluids in hopes that it would help. No sooner did the IV team come to set her IV, which took a couple of attempts because her veins were now “flat and dry” did the doctors come back and say that Sara needed to be transferred the Pediatric Intensive Care Unit (PICU). They didn't want to wait for fluids and said she needed "high flow" oxygen which could only be given in the PICU. Less than an hour later she was moved downstairs. Room/curtain 28 was full of nurses and doctors, just waiting for her arrival. I must say it was a bit overwhelming but I just sat back and took in as much as I could. Mark arrived shortly after we got there and I could tell by the look on his face that he was a little overwhelmed by all of the people too. It was like a circus car, yet a tiny room filled with as many people as possible. Once she got hooked up we had several doctors come back to explain what the plan was. We also got the results from her virus panel and surprise, surprise, it came back positive for RSV.

More oxygen (8 liters) was the key to her recovery and we were told that some kids bounce back very quickly after the high flow oxygen and she could possibly go home within a day, being sent home with oxygen. I was really hoping this was the plan and really thought she'd be here a day then we'd go home. No such luck! Little Sara is still retracting, still has a temperature and still has a high respiratory and heart rate. They have since placed a feeding tube so she can get some nutrition and because of her fever, they are giving her a strong antibiotic. She has had more blood work done and they had to place a catheter to collect a urine sample. Owie! They are sure she has an ear infection but her ear canals are so tiny and "curly" that no one can get a good look to confirm. If it is an ear infection or any other infection, the antibiotic should kill it pretty quickly. More and more we are getting health lessons on Down syndrome and one of the things we have learned besides the small ear canals is that children with Ds have small airways and passages. So because of this, viruses like RSV knock them down a little harder than most "typical" children. Heart problems can also play a significant role to their recovery but we can count our lucky stars that Sara has a pretty healthy heart. She's going to keep fighting this ugly virus. Day by day she shows some signs of improvement and her spunky, energetic little self is shining through. I must say she is beautiful even when she is draped with cords, has tape and sticky goo all over her face, and has tubes sticking out of her nose. Sick or not, she looks like an angel! I look at her sweet face and feel so blessed that she is mine. I feel so grateful that we can be by her side and comfort her during this time. I feel so lucky to have access to such wonderful health care. She is where she needs to be and even though we'll probably be here a few more days, we're willing to do whatever it takes to make our sweet baby happy and healthy. On a positive note, her blood work from the other day came back with no abnormalities. We're still waiting on today's results but hopefully all is well. So far we are clear of the "L" word now we just need to get rid of the "R" word! Although this Rotten Stinky Virus has hit us hard, we still have so much to be grateful for. Big thanks to all who have supported us in any way. We appreciate the help with kids, offers for meals and childcare, prayers, texts, phone calls and comments. “Love is all around me, I feel it in my toes!” I am sure Sara feels it too, so much that she wants to eat her toes, ha ha! (She is soooo flexible!)

*I really wanted to post pics but unfortunately I have terrible reception inside the hospital and I cannot upload any. I will post as soon as I can! Her cuteness is too much!!