Thursday morning she woke up and was coughing so hard she was having a hard time caching her breath so I gave her a neb. She also slept over 13 hours that night which is not like her. Her pulse ox looked good and her heart rate was a little high but after a neb that is to be expected. Lydia's nurse came over for her visit and said that Lydia's tube site is looking great. Jilli was rather whinny while the nurse was here but I thought that she was just looking of attention and didn't feel great. As the day went on Jilli continued to lay on the couch. I tried to bribe her to go play but she said she would rather just lay on the couch. She made it to the 3 1/2 hour mark after her first neb and started coughing so bad she couldn't catch her breath. I started another ned (you are suppose to wait at least 4 hours between them) and called the ped's office to check in. If she was not a week post op I might have waited longer before calling but with her reflux being so much worse and now she was having a hard time breathing and her pulse rate was not lowering I just wanted to check with one of her doctors. The nurse called me back and got a little info and then told me that they talked it over and wanted us to head to Children's. I asked walk-in or ER and they said ER. I may have muttered a few words and packed up the car to go. I called Brent and let him know what was going on and then called Jaime because we were suppose to have them over for dinner. I called my mom and she said she would meet us up there so she could help with Lydia.
We got up to the ER and the parking lot was full (check out Milwaukee news yesterday and you will know why) which is never a great sign. I got the girls in and checked in and then Brent joined us. The ER staff recognizes us when we walk in. We try to only go there when we have to because they are very busy, but we still end up seeing them a fair amount. The waiting room was full and as we were checking in there was a family saying they were leaving because the wait was just too long. They took us around to do Jillian's vitals. The nurse looked at me and asked if we had enough oxygen for a little bit and I told her yes. She said that they had a few people they were discharging and would get us into a room asap. I felt bad bumping everyone in the waiting room but when the girls end up at the ER they try their best to get them in a room quickly. A kid on oxygen not breathing well is not good and they know us well enough to know how quickly Jilli can turn. Wile knowing the Children's ER staff was not on my life goals list, I am so grateful for them because they work hard for my kids. We sat in the waiting room less then 5 minutes before they took us to a room. A doctor was in shortly after and we came up with a game plan. A duo neb (a nebulizer with two meds mixed together instead of the one med we give at home), a dose of steroids and a chest x-ray. I love how we are a part of the medical team there and they ask our opinions and want to know what has worked in the past. They also called up to pulmonology to make sure they agreed with the plan. Within minutes of the doctor walking out of the room the head doctor walked in to check to make sure this was the best plan for Jilli. As soon as she left the respiratory therapist walked in to do Jilli's neb. She said she was making shallow breaths. While we were doing the neb x-ray came in and wanted to take her back but they asked them to come back after the neb. Once the neb was done they gave her the steroids and then took her to x-ray. They moved very quickly. Once all of that was done Jilli was very jittery from all of the meds. The doctor came back in and said the x-ray was clear. She said this is most likely from all of the extra reflux Jilli is having since they put the botox in her pyloric sphincter. She didn't have pneumonia yet but was headed in that direction. Thankfully we caught it before it got there.
We came home and she was very tired but was having a really hard time settling her body with all of those meds. She was yelling at us and not making any sense. Oh the joys of steroids! I ended up just rocking her for a while but once she got to sleep she stayed asleep til morning (we gave her another neb right before bed)
Today she woke up coughing again but not as bad as yesterday. We started the morning with another neb and she is just hanging out playing ipad. Her pulse rate is still high but her body is working hard.
Today is a low key day here! Right now Jilli is next to me playing iPad and Lydia is asleep in my arms.
Thank you for all the prayers and well wishes yesterday. A huge thank you to the Children's ER. They were AMAZING yesterday and did everything they could to help her. They included us in decisions and reached out to other doctors to help make the best choices for Jillian. They were great and I am so thankful for their amazing care of my little girl. They reminded us again yesterday why we love Children's so much. There is a reason we drive an hour to go to the ER and they reminded yesterday about their high level of service.
We are so thankful.
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