On Wednesday, November 18th around 9 PM Lila felt a little warm to me. I took her temp and it was 101.5. She'd also been drooling a lot and had a bit of a runny nose so I assumed the fever was a symptom of her teething. I know doctors say that fevers don't accompany teething but Lucas ALWAYS got a fever when he was teething. As high as 102. Otherwise Lila seemed totally fine so I wasn't worried about it. A couple hours later she felt REALLY warm and I took her temp again and it was 104! I got dressed and went to 2 different grocery stores looking for Fever All suppositories because it is really hard to get Lila to take liquid tylenol or motrin. She hates it. I couldn't find Fever All anywhere so I went home and forced some motrin into her. With a fever that high I didn't want to trap heat so I had her in bed with me sleeping in just a diaper. I also noticed that she seemed to be breathing pretty heavily/rapidly but Dr.Google said that was typical with a high fever so it didn't concern me that much. Her temp remained high until about 5 AM when I gave her tylenol and the fever finally broke. After a few more hours of sleep she woke up seeming fine. No fever, breathing normally, totally happy. I considered taking her to the doc but he really seemed fine so I figured she was. That night we had basically a repeat of the night before but I noticed she seemed to be having more trouble breathing than the previous night. We got up Friday morning and I brought her to work with me as usual. She seemed to be much more docile than usual, was still breathing heavily and just seemed "off". I called the pediatrician to get her in, fearing that if I didn't she'd get sick over the weekend and it'd involve an ER visit. They were able to see her at 10 a.m. which I was pretty psyched about. I still wasn't even convinced that there was anything seriously wrong with her, I was thinking *maybe* bronchitis as a worst case scenario. I left work at 9:30 and headed to the pediatrician for our appointment with the NP, Nicole.
At 10:15 AM on Friday, November 20 we were called back to the exam room at the pediatricians office. The nurse weighed her (19 lbs 11 oz!) and asked about her symptoms, etc. Then the NP came back and gave her an exam. She said heard "something" in her left lung and thought a breathing treatment might help and that she should also be tested for flu. We waited for the results to come back for that and while waiting she got a nebulizer treatment. I was suprised that Lila sat so well through it and didn't mind the mask being on her face. I thought she was starting to seem a little too lethargic for my liking but also thought about the fact that it was getting late in the morning and she hadn't napped yet so she was probably really tired. Around 11:30 we were told she tested negative for flu but that the test wasn't very accurate so she'd be given a prescription for Tamiflu and they also wanted to do some quick bloodwork and then give us a nebulizer to take home for the weekend. While we were waiting for the results of the bloodwork the nurse came in to show me how to work the nebulizer. While she was showing me she kept looking at Lila who I was holding in my arms while standing up and had a kinda weird look on her face. I said "she doesn't look good, does she? something isn't right." The nurse agreed she didn't look well at all. I asked her to please get Dr.DiPaolo and she seemed a little weirded out by the request but got up to go look for him. I said "He was my doctor, my family has used him for 30 years - he knows me, he'll be okay with it." cause I could tell she didn't really want to do it. She went to look for him and came back and said he was with a patient. I heard Dr. Harrison (another long time doctor at the practice) out in the hall and asked her to get him instead. She did. Dr.Harrison came in and listened to her with his stethoscope, he told me that the nurse wasn't supposed to get a different doctor/NP because they don't like to undermine each other. I told him I had insisted. He asked the nurse to test her oxygen saturation levels. She grabbed the pulse oximeter and her level was around 85% (anything under 95% is low). He asked the nurse to put her on oxygen immediately and told me she needed to go to the ER and be seen. The NP came in and I could tell she was feeling a little weird/guilty/uncomfortable with things and made a point to mention that she hadn't looked so bad an hour ago, which was true. The nurse hooked Lila up to oxygen, I called my mom to tell her to go to my house and pick up Judd and come to the hospital. The nurse walked me over with Lila hooked up to the oxygen and we were seen by the triage nurses immediately. They then put us in a room in the ER and we waited for the doctor. Dr.Shinaishin came in shortly after and listened to her lungs and QUICKLY said "She has pneumonia. I'll need an x-ray to confirm it but I can tell just listening to her that she has it, and it's pretty bad. We'll need to admit her to the hospital." I couldn't believe that an hour earlier we were getting ready to be sent home from the pediatrician with a nebulizer and a prescription for Tamiflu and NO ONE had mentioned anything about pneumonia and this guy heard it and diagnosed it within 15 seconds! Judd showed up shortly after that and was there to take her to be x-rayed. When the Dr. saw the x-ray he confirmed the pneumonia and said we'd have to go ahead and start admitting her but he also mentioned that the way she looked really concerned him and he would be keeping a close eye on her for now. He ordered an IV to be put in and I asked my mom and Judd to stay with Lila because even the word IV makes me queasy. I didn't want to leave Lila but I also knew I would be worthless to her if I passed out. The nurse had an orderly help, it took 4 of them to hold her down and it sucked because she was already so weak and having so much trouble breathing that she did not need to be expending that energy. I sat outside the room sobbing until the nurse came out and i ran in and tried to nurse Lila to comfort her but she just fell asleep in my arms. Judd decided to go home, my dad had also just arrived, and get a change of clothes for both of us and get the boys off of the bus and then come back. My dad went with him and they planned to come back to the hospital around 5. We were waiting for a room to be cleaned that was near the nurses station because they like the respiratory patients to be near the nurses station. I can't really remember if this is when I realized how serious things were or not. I was really taking everything as it came and not getting too freaked out by anything. I knew I had to be strong for Lila and that if I got upset at all I'd lose it completely. I tried to just focus on each moment and what needed to be done at that time and not worry about anything else. While Judd was gone Lila started to breathe really heavily and seemed just so sick to me that I called the nurse to come in. She immediately got the doctor. He looked at Lila and listened to her breathing again aand asked me if I remembered when he had mentioned earlier that he was concerned about her and I said yes and he said that he didn't want me to freak out but that he didn't think Reston Hospital was the right place for her and we should be at Fairfax. (For those not in this area, Fairfax is large hospital with a Childrens hospital and PICU). He said we'd need to transport her by ambulance there as soon as possible. I called Judd and told him to hurry back to the hospital, it was already after 4:30 and the boys were home now. Then the nurse tried to give Lila some medicine through her IV and they realized the IV had kinked and come out of her arm and they'd need to reinsert it. When Judd showed up at the hospital I was lying in the bed with her sobbing. I told him everything the doctor had told me and that we were just waiting on an ambulance to take us to Fairfax. The nurse said they needed to put in a new IV but that she'd get the head nurse to come in and do it because it was hard for her last time and she wanted an "expert" to do it. It was a far less traumatic experience for all involved that time, the nurse did it quickly and easily. I went out to the waiting room to see Tristan and Lucas while she was doing it and when she came to tell me she was done she saw Tristan and Lucas and said that even though it was against the rules she'd let them come back and see Lila if they wanted because they would definitley not be allowed to see her once she was at Fairfax Hospital. They came back and saw her and gave her some hugs and kisses but she was totally out of it by this point, barely able to keep her eyes open, huffing and puffing with every breath, and just looking SICK. Around 7 we finally had an ambulance show up, we'd been bumped by a bigger emergency apparently. Lila looked so sad strapped to the gurney in the 5 point harness but we were relieved when they told us that both Judd and I could ride with her, even though they usually only allow one person other than the patient. We got to Fairfax Hospital pretty quickly, it wasn't a sirens blazing kind of ambulance ride but he did go pretty fast! Lila slept the whole way.
Lila was admitted to Fairfax Hospital around 8 PM on Friday night, November 20th. She saw seen by an resident and an intern pretty quickly and we were introduced to her nurse for the night, Tiffany, and the medical assistant. They took her vitals and when we weighed her she was so weak that she couldn't even sit on the scale, we had to lay her down. The staff was all very nice and we felt pretty comfortable there. I think this is when I realized we might be staying more than a night. Up until that point I'd truly just been thinking about what was happening in the present and not thinking ahead but now that we were officially admitted to a hospital with a PICU and had a daughter hooked up to an IV, oxygen, and multiple different monitors I was realizing the severity of the situation. The next morning Lila was seen by Dr.Powers from our Pediatricians practice and then by a Respiratory Therapist. She was given a breathing treatment and they decided we'd be doing those every 6 hours or so, even though they didn't seem to be much help, she liked them and they did help a little. She had already been started on IV nutritional supplements because she wasn't nursing well. It took all of her strength to nurse. I was using a breastpump to keep my supply up for her when she was able to nurse again. My parents brought the boys by to visit me and I went and had lunch with them in the hospital cafeteria. It was sad not seeing them but they seemed to understand that Lila needed me. By Saturday evening we were getting small smiles from her and things seemed to be looking up, slowly but surely. On Sunday morning we saw another RT, John, and he explained a lot about the breathing treatments and seemed to take a special interest in Lila (or he's like that with all his patients, which is awesome if he is!). He told us Lila should be tested for RSV. It was the first we'd heard it suggested that she had RSV. She was tested for it and we were told she'd get the results later that day or the following morning. Our nurse that day, Mary, was pure awesome. She was so good with Lila and really took the time to explain everything about Lila's treatment and the potential diagnosis of RSV. We found out that afternoon that Lila tested positive for RSV. We learned that there is nothing that will get rid of RSV because it is a virus but there are some treatments that help. She was put on the hospitals protocol for RSV treatment immediately. It didn't seem to help much, the only thing that really helped at all was suctioning her nose and mouth as often as possible. Lila hated it.
The next few days became a see-saw of Lila seeming to improve and then getting worse again. She never got anywhere near as bad as she'd been the first 24 hours of her illness but there were a few times that I was pretty concerned about whether or not she'd ever breathe normally again. The word asthma was thrown around a bit but it's not diagnosed before a minimum of 1 year and usually 2 years of age, according to different doctors and RT's that we saw. On Monday we were told we'd *definitely* be out of the hospital by Thanksgiving but we ended up not being released until noon on Thanksgiving Day. Lila was on oxygen until about 3 AM on Tuesday morning and they wanted her to be off of it for a full 24 hours before she was released. Her saturation levels remained pretty good but her respiratory rate got high quite often. By the time she was released it was in the 40's pretty consistently (20's are normal, she was in the 70's-80's when she was super sick and then remained in the 60's the next few days). I had to take her back to see the pediatrician in Reston on Friday morning and she was doing much better by then but her lungs still weren't completely clear. She weighed 19 lbs 4 oz that day and at that point she'd probably gained some weight back that she lost. I imagine she lost at least 1 pound, probably 1 1/2 while sick. She barely nursed at all those first few days. We didn't plan on bringing her back to the pediatrician again until her 9 month check up on Dec 10th but ended up back the following Friday because Lila decided she would keep things interesting for us and came down with an ear infection and roseola! But today, 4 weeks from the day she was admitted to the hospital, she is finally back to her normal, happy, healthy self and every time I look at her and think of everything she went through I get teary eyed.
I might add more to this later if I remember other stuff but that's the jist of Lila's battle with RSV/pneumonia! She's a tough one, that Lila!
