Evelyn has been notorious for dropping her pulse ox (amount of oxygen in blood - 100% is ideal, lower than 95% gets worrisome). When I mean dropping her pulse ox, I don't mean dipping into the 80's (which is bad) but I mean having regular episodes of going into the 60's, and I have seen it drop as low as 38. I have had nurses think the sensor wasn't reading correctly, Residents come in to check if everything was working how it should be. The first night or two in the hospital (for it usually occurs when she is sleeping), the nursing staff will be quite anxious about it. After that everyone accepts that it is her baseline and since she comes back up, maybe it's not that big of a deal.
You loose brain cells everytime you loose oxygen, so naturally I was concerned that maybe she was slowly causing brain damage to herself. Whenever we have been in the hospital, it has never been a main focus for there was always something else going on, so it never has been addressed.
That was until Saturday. The Fellow, Ingrid, was concerned about her dropping her pulse ox and wanted to have a downloadable pulse ox on Evee while she slept that night. The only difference with this pulse ox is that they would be recording all of the episodes, being able to give the doctors viable data.
According to my mom, starting around midnight, Evee kept dropping her stats (pulse ox). The nurse would give Evee oxygen, but then get in trouble by the people running the test for she was not giving them a true test, to which she replied, "I'm not going to just sit and watch her drop her oxygen levels". My mom said that she would hurry home so that we could get to Evee. Since this is a common occurrence with Evelyn, I wasn't too terribly concerned.
Todd had a speaking assignment in a different ward, so I had the privilege of taking the boys to church by myself. Fortunately my mom got to the house in time to join us.
At church there was a visitor that was helping pass the sacrament (bread and water) to the different rows. This boy was special. This boy had Down Syndrome. I was lucky to have him pass it to our row.
After the Downs boy passed our row, William whispered to me, "His face is kind of scary". I brought him closer to me as I explained the truth about these special people. I told him that the boy had been so valiant, so righteous in heaven that he didn't need to prove himself on earth. Heavenly Father sent him in a body with a mind that didn't quite work right. Though life seems hard for him now, he is guaranteed placement in the Celestial Kingdom (highest degree in heaven). I explained that Evelyn was just like that boy, she had been so righteous in Heaven, and she was so special, that Heavenly Father sent her in a special body to protect her from the temptations of Satan. I don't know how much William understood, but knowing how brilliant he is and what a thinker he is, I am sure that he has been rolling it around in his mind.
William has come to understand that Evelyn may be developmentally challenged. I'm not sure of what the other boys have picked up, but twice now William has mentioned Evelyn being "crazy" when she grows up. He says it not in a mean way, but more of an informational way, more that he is accepting the fact.
During the meeting Grant was getting antsy. Though I would normally never do this, I decided to grab my phone and show him pictures of Evee. This turned out being an unseen blessing for while he was looking at pictures he handed me the phone. It was ringing, silently. A hospital number. I would have totally missed it if Grant hadn't been holding it.
I grabbed the phone and very quickly exited the meeting room and answered the call once I was in the foyer.
It was Dr. M, an attending at the PICU that I had not met yet, nor had she taken care of Evelyn previously. She explained to me that Evelyn was having a hard time breathing. They were giving her a mixture of oxygen with helium, but she wanted me to be aware that they may have to intubate her. Evelyn's breathing can be quite alarming to anyone that has not seen her previously, and I have been warned that if she ever was seen by a doctor that didn't know her baseline breathing, they may try to unnecessarily intubate her. Knowing this, I made sure Dr. M knew that Evee's breathing is usually labored. She assured me that she was informed of this, but that this was more serious. I knew that Evelyn's nurse was Sarah, someone that has had experience with Evelyn, so I asked if Sarah felt that Evee's breathing was more labored. She replied in the affirmative. Still I wasn't totally sold that they were not being overly dramatic. You have to understand, I was raised by a Rancher's daughter. We grew up never going to the doctor and my mom is the farthest thing from a hypochondriac that is possible. If anything we learned how resilient our bodies really are and that sometimes all the fuss is unnecessary.
I sent a text to Todd to come pick me up after he was done and we would go to the hospital and set everyone straight.
After Sacrament meeting I was in the foyer with my mom waiting for Todd to come. As it was clearing out, I saw the Down Syndrome boy. He very suavely shot his pointer fingers at me and electric slided over to me. He was hilariously flirting with me. He told me I was beautiful and that I had wild hair (why do people keep saying that!). He hugged me and claimed me as his girlfriend.
His name was David. His mom, Gina, came over and introduced herself...and David. She was baptized in our church building 39 years ago. David was her 5th child and 30 years ago, when she had him, she had no clue she was having a Special Needs child. She went on saying how awesome he has made her life, how she wouldn't trade it for all the world. All this was said without me telling her about Evee.
When my mom told Gina about Evee, Gina replied with, " A coincidence is God's way of remaining anonymous". I totally agreed. Gina actually started a company called Sharing Down Syndrome Arizona, which helps connect the families and caregivers of these special people.
Todd came in to get me, so he met David as well. David hugged Todd while Gina tried to tell David that Todd was my husband. David replied with, "My hu-band". He was just too cute.
Todd and I drove to the hospital. We discussed how we would need to let the doctors know how Evee normally breathes and that she was okay. Todd was a little nervous for he said that the oxygen mixture they gave Evee was sort of a last ditch effort before intubation.
We navigated through the parking lot, elevators, and hallways. I came into Evee's room, ready.
I did not like what I saw.
Evee was lying on her side, a nasal cannula on her face, eyes closed, chest and abdomen struggling to take in breaths. She sounded terrible. She looked terrible. She looked like she was loosing consciousness.
Dr. M came in and told me how earlier Evelyn would at least respond, but now her body was getting too tired to even respond. We all agreed, Evee needed to be intubated.
Todd and I left the room while they intubated Evee. It took some time, and Todd actually had to leave for work before they got it done. After they finished, a Resident came in to tell me, and to let me know that she blew out her femoral line, so they had to put one in her other side.
Great, more time in the waiting room by myself.
My mom was going to bring the boys to the hospital after church was over. I called her to tell her to not bring them, they didn't need to see her right now, not how she was doing. Though I did crave the company.
When the doctors were all done, I was allowed back into the room.
You always know things aren't great when these are off of Evee's body
Unfortunately she has had to have them off a lot recently.
Evee did not look great. She was still and sedated. Her eyes were taped close for she keeps them slightly opened and it can dry them out.
Life was not fun. My daughter was intubated and I was having to see it and deal with it by myself.
After about an hour I got a text from Todd. He was coming back. The Attending at work found out what had happened and told him to leave work. I was so grateful.
The people Todd works with have been amazing. They have been so supportive and helpful. Other Residents have offered to take shifts, Attendings telling him to not worry about coming in. One Attending has come to the hospital twice now, bringing us dinner. It is nice to know that we have a great support system, awesome co-workers and bosses, and incredible friends. They (You) have made this journey a lot less rocky.
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