Where do I begin?
Last Tuesday I took Miles to Ft. Worth to get his pump refilled. That appointment seemed to go just fine. (I posted pictures last week of the appointment.)
Well, Thursday during lunch I got a call from the hospital in Ft. Worth and the nurse that we saw on Tuesday asked me how Miles was doing. At first I said fine, but then I realized that he had been acting a little strange that day. I had taken Miles with me to my hair appointment and the lady that always does my hair noticed that Miles’ eyes looked glazed over. Also, he had been gagging a lot. He kept trying to throw up but he can’t because of he’s had a fundoplication. Anyway, so I told the nurse what he was doing and she asked me more questions when I finally said, “Why? What’s going on?” The hospital doesn’t usually make follow up calls to check up on him especially for a routine appointment.
That’s when she told me that when she refilled the pump she didn’t regulate it correctly. She explained that he was getting a concentrated dose directly to his spine instead of a regulated dose. He received a bolus of baclofen instead of getting it gradually.
She had just realized what she had done, and I was in the middle of lunch so both of us were having trouble deciding what to do. I already had plans to teach at Holli’s women’s retreat near San Antonio that weekend and I had already been to Ft. Worth one time that week so I was not in a hurry to drive up there if it wasn’t necessary. We were trying to figure out when I needed to come up there to get the pump checked up. I told her that the next week I was really going to be busy because I’m subbing a lot, and the first part of the following week she was going to be on vacation so we decided that I would come on the 13th to get it checked out. She was uncomfortable about that so she said that if Miles had any problems during the weekend that I needed to bring him on Monday. I agreed then we got off the phone.
I was eating lunch with Randy and his friend Bryan at that time so when I got off the phone I told them what was going on. Randy didn’t like the idea of us waiting until after the weekend to go there. He told me to call the nurse back and ask her if I needed to just go up there that day. This is so interesting to me because this is major role reversal here! I’m the one that is usually aggressive about Miles’ care. Randy’s usually the laid back one! I’m the one that thinks things are more serious and Randy’s the one that thinks nothing is wrong at all.
I had so many things to do to prepare for my upcoming trip that I didn’t want to take the time for a wasted trip to Ft. Worth. Randy didn’t want to risk something bad happening while I was gone for the weekend so he wanted me to go. I called the nurse back and she was relieved when I told her I could come that day.
I was already in Clyde so I traded vehicles with Randy and we were on our way. As I was making the 2 and a half hour drive Miles’ body seemed to be having difficulty. He was sleeping, but a couple of times he would open up his eyes and they were kind of rolling around. By the time that I got him in the clinic the nurse and doctor were concerned for him. He was so limp you could have balled him up and thrown him across the room. He had a very low breath rate. As they watched him the doctor said that they needed to keep him over night to monitor him.
I was shocked! I had not once thought about the possibility of him staying the night! I was not prepared at all! I didn’t bring anything with me. And listen to this…I have no idea why in the world I did this, but I woke up that morning feeling like I wanted to dress up that day. I didn’t want to wear my normal “mom clothes.” I was getting my hair done that morning so I wore a nice dress, uncomfortable shoes and I’ll admit…uncomfortable panties. Dang wanting to look cute! I went and got my hair done that morning and when Cindy, my hair dresser styled my hair she curled it instead of straitening it. I love when she straitens my hair so when I saw she was going to curl it I almost told her not to, but I figured it didn’t really matter so I just let her do it. She curled it, pinned it up a little bit and then sprayed more hair spray in my hair then I’ve used in my hair in two years! So, I’ve got a nice dry clean only dress on, cute/uncomfortable shoes on, uncomfortable panties and great big Barbie looking hair!
Miles gets put in a room at the hospital and as soon as he’s hooked up to all the monitors every alarm on that thing went off! There was no stopping it. All the bells and beeps were going off and the nurses were trying to set the controls lower so it wouldn’t be going off constantly. I was in the room for just about 2 minutes when the nurse told me that I needed to go downstairs and go to registration to get them his insurance stuff and so I could sign paperwork. That needed to be done before he was in the computer. Also, they told me to get something to eat in the cafeteria while I was down there because by this time is about almost 6.
I went downstairs, got some food from the cafeteria and took it to the car to eat so I could charge my phone a little because it was going to die if I didn’t and I knew I would need to use it a lot. So, I did that and then went in to register. As I was waiting for my turn to do that my name was called and they told me that I needed to go to Miles’ room right away. Let me assure you that this does not bring comfort to one’s soul. I had to make my way across the hospital and up to the 6th floor. Again, those cruddy shoes! When I got up to the 6th floor I found out that Miles had already been taken to the ICU. They tried to find me before they transported him but they couldn’t find me because I was in the parking garage. They decided that they couldn’t wait any longer because all his stats were dropping.
He was getting rapidly worse. Everything was dropping. His heart rate was down to 30 (when he left the hospital his heart rate was 109). His blood pressure was getting lower and lower so was his respiratory rates and his temp was down to 90 degrees.
When I got to the ICU there was a whirlwind of activity.
At the clinic they had already fixed his pump, but there was no way that they could remove the medicine from his body because it goes directly in his spine. If I were to overdose on baclofen then they could induce vomiting to help get it out, but they couldn’t do that with Miles. So they began to try to warm him up with a Bair Hugger and we just had to wait and see.
As his temp started to rise, his stats began to get better. He was still completely out of it, but he began to do better. After a couple of hours of being like that, he all the sudden opened his eyes, smiled at everyone and was his usual happy self. It was like God flipped a switch in him! All the things the doctors were worried about with an overdose came back normal. He was just his normal happy self. God rescued him again! I’m not sure he would have survived the night if we had not gone in to have his pump checked. I would have thought that he was just really sleepy like he gets sometimes and he could have just continued to drop his stats and died. I don’t say that for effect or to stir emotions. I just really think that was what would have happened.
Since his body was struggling so hard to survive he was in a deep deep sleep where I couldn’t wake him up. His body was shutting down and I wouldn’t have known that without him being on the monitors. God saved his life once again. I’m so grateful.
I decided since Miles was stable that I would try to get some rest. It had been a very long day. Let me remind you again of what I had with me…nothing! They did scrounge me up a tooth brush (no tooth paste) and some body soap and a bar of soap. They offered to get me some scrubs to wear but I said, “Thank you but no thank you.” So, I slept in my dry clean only dress with the uncomfy unmentionables and used a hospital pillow that was the size of a maxi pad.
I tell ya what though! When I woke up the next morning I made my way to the bathroom and I looked GOOD! My hair looked exactly like it did when I left the salon the day before! She put so much hairspray in it that it didn’t budge! My hair was still pinned up and looked great! My dress was a wrinkle free dress and it was actually wrinkle free. I brushed my teeth without toothpaste and I looked fantastic! I don’t know why that made me so happy but it did!
All night Miles did great. He didn’t sleep a wink. He was up smiling and laughing. He woke me up laughing one or two times. That morning he continued to do great. The doctor released us to go early afternoon that Friday because there wasn’t anything more they could do for him, and besides that he looked great. They let him leave right out of ICU which is so uncommon that the nurse we had didn’t even know how to check him out of the hospital. Usually from ICU you get moved to a regular room to be monitored, but they didn’t do that for him.
I was so glad too because I already had plans that I was really late for. I drove Miles from Ft. Worth to home. When I got there I immediately ripped off my uncomfortable clothes and threw on a wonderful night gown. I took a little nap while Randy picked up our kids from the school. When I got up I showered, packed and left for the women’s retreat that I was supposed to speak at the next day.
I got back in the car and drove and drove. I got to Comfort Texas about 9:30. The retreat went great. I’m so glad I went. I met some really precious women. I instantly felt welcomed with them. I enjoyed being with them. I also enjoyed teaching. I really am so glad I went. A couple of people thanked me for coming even though I had such major family stuff going on. That made me feel so good. It was my honor to be there.
Saturday night after the retreat I made my way home. At first I had planned on spending the night with Holli in San Antonio that night but after one night in the hospital and then one night at the retreat I wanted to be home. I got home at almost 2:00 in the morning. It was a hard drive but it was worth it to wake up in my own bed.
Randy said that Miles slept a lot that weekend. Sunday he was the same way. He would wake up here and there but he slept 99 percent of the time. During the day on Monday he was acting the same way. He was also having sporadic breathing. He was in a really deep sleep where I couldn’t wake him up. I didn’t have peace about how he was doing or how he was looking so I took him in to see the doctor. I’m scheduled to sub three times this week so I wanted to know if he was okay or not.
Well, he wasn’t okay. His heart rate, temp, blood pressure and respiratory rate was all low again. Actually his temp was at an all time low at 84.6 degrees. That is crazy! Miles was put back in the hospital on Monday and he’ll spend another night while the doctor figures out what in the world we need to do. This time though, I’ve got toothpaste, pj’s and I’m wearing panties accordingly. Fool me once…