So today was our first trip to the ER... not one I want to make again, that's for sure!
We had a scheduled hospital admittance today to get our bi-pap machine since they couldn't get our sleep study scheduled for another 2.5 weeks. We had her pulse-ox and cough assist delivered last week and we just started monitoring her Wednesday I think... She's supposed to stay in the mid 90 range for her oxygen level, but the first night we used it, she was consistently dropping into the 80s, which meant the alarm was going off every 30 minutes to an hour and soon became the most dreadful sound in the world. Not only did it wake me from a dead sleep, but it caused my blood pressure to raise and sent me into a panic... Don't get me wrong, I am very thankful for the darn thing because it will prevent me from walking in on a blue baby, but I hate that sound none the less. Anyway, we started getting adjusted to the sound and soon realized just because the alarm was going off wasn't necessarily a reason to be scared, it was more of a warning.
Well Friday evening, we had a real warning and didn't get to her fast enough and saw the numbers quickly drop into the 70s. We suctioned her out, pounded on her chest to knock any mucous loose, suctioned her again, and the numbers started coming back up. I called the pulmonologist Friday evening (she gave me her cell phone number so I could reach her directly which is awesome) and let her know what happened and told her we really need the bi-pap machine to help Skylar's lungs. She agreed and said since it was the evening on Friday, if we could make it through the weekend, she could admit us into the hospital on Monday first thing. We went ahead and made the plan and went on with our weekend.
Sunday, we were able to meet up with the Miller Family (founders of the Hope and Light Foundation) to learn from their experiences - they showed us many helpful things and we learned a great deal from them. We shared with them that Skylar had some issues with her oxygen stats and they said it sounded like she had a mucous plug moving around in her lungs. We tried to get it out using the cough assist and other lung therapies, but I was still unsuccessful. Monday morning, I wake up to the sound of the alarm on the pulse-ox. I get out of bed and see the numbers quickly dropping to the 80s. I grab the cough assist first and start doing a few repetitions. The numbers are in the 70s. I start to panic. That is not the direction I want them to go. I start pounding on her chest, suctioning her out, and I do the cough assist again. I hit 80. Holding steady. CRAP! What else do I do?! 80 is not good enough! I grab the nebulizer, and thanks to the Millers, had some saline solution to use to break up the mucous. After that treatment, a little more suctioning, nose spray, and some more suctioning, she was back up in the 90s - a sigh of relief. That took way too long. Skylar held steady at 95 after that and I was exhausted. After staying awake for a little bit to make sure she was holding steady at 95, I decided to get a little more rest before getting packed to go to the hospital.
I wake up to the alarm again - just high 80s... not horrible, easy to get back to the 90s and I am packing our bags. She held steady in the 90s again so I decided to take her by the chiropractor on the way to the hospital since I knew we would be there for a few days and we've been trying to get to the chiropractor almost every day. Skylar has a bit of scoliosis already since she doesn't have any muscles to keep her bones in place and a few of her vertebrae are already fusing together since she doesn't move much. We've already seen some progress and our chiropractor has a great heart to help her. Anyway, we made the pit stop there, then on to the ER to get admitted.
When we arrived, I had to wait in line to check in and then we had to wait some more for the initial evaluation (thankfully there wasn't a real emergency or I would've freaked out!!!). When they finally called us up, I could tell Skylar was struggling with some mucous in her mouth, and they took her vital signs... back in the mid 70s for oxygen. As much as I hated that for Skylar, it got us back to a room right away. Once we got to the room, she was back up in the 90s. The ER pediatrician came in and was checking her out and out of nowhere she dropped fast into the 70s... then 60s. Thank God we were in the ER! I saw the 60s and started to panic and I think the doctor did too. I turned to get the suction machine, the doctor grabbed the oxygen mask and I started pounding her chest. We were able to get her back pretty quick, but she lost some color on that one. It's not a good feeling when your baby turns a little blue.
Our pulmonologist came in to check on us and give us the plan for the next few days, the nurse staff came in to get her blood and IV set up, we went to get a chest x-ray (which showed she had mucous in her right lung), the respiratory therapist came in to hook me up with treatments for Skylar, the doctor came back to make sure we were stable (well, mainly Skylar, but I was stable too :) and everyone was on top of their game. Everything happened pretty fast, and everyone was fantastic! This is probably the best experience yet with Children's Scottish Rite. We got moved to the PICU, met the great nursing staff (we have one of the same nurses from last visit which is great) and Skylar's resting well now that she's getting used to the bi-pap machine. I am soon to follow.
I will update you soon with our plans, how Skylar is doing, and the like. I would like to confess my amazement with God's perfect timing - we feel extremely well taken care of today. It's a major comfort to know that even though you're not in control, there is a God who is and has a perfect plan. I hope it has a happy ending, but I also know that my plan is not always the best one, and just pray for continued wisdom, strength, and peace as we take each day at a time. I am so thankful we came to the hospital when we did so that not only were they able to help me when Skylar dropped into the 60s, but we were able to catch the mucous in her lung before it turned into pneumonia. Serious thanks to God for that. Pneumonia could be fatal or cause a major loss of strength. It's been a long day and I think the nurses are coming in 4 hours to get another chest x-ray so I better get to bed now... be back soon. Thanks for the prayers. Praise God for today.