ALEXA'S JOURNEY TO A NEW LIFE: Day 22 of recovery

7/22/14

Day 22 of recovery

Wow, the last couple of days have been really crazy! The good news is we are finally out of the hospital. Dr. C told us we were going to go home on Mon so on Mon morn I got up & started packing things up. I expected that it wouldn’t be very early that we would finally get to leave but I figured it would be some time in the afternoon. At about 1:00 the pharmacist came by & showed us how to give Alexa all of her many, many medicines in her feeding tube. That literally took about 1 ½ hrs! By the time we were done we were starving so we went down to get something to eat really quick before the next people came to show us things. Caleb & Lisa came by & visited while they were between doctor appointments so that helped to break up the time & we had fun visiting with them. Finally the nurse said she was getting our paperwork ready to get discharged. We thought that would just take a minute but we waited & waited. When she finally came in she said that usually the discharge papers are only about 2 or 3 papers but Alexa’s were about 9 or 10 pages long! Just as she started going over the discharge papers with us we had a visit from some friends that I met on Facebook. Their daughter, Alyssa, was here for her 1 yr post-op visit & she looked & felt great. I was so excited that they came by! They are from Arkansas, right around where Ty grew up & are the nicest people! We enjoyed visiting with them for about an hr. When they left the nurse came back in it took another hr to go over things with us. We finally broke out of there & got to the Ronald McDonald House about 7:30. We felt really overwhelmed having to give Alexa all of her many meds, which took us an hr to get ready, & get her feeding tube ready with the crushed enzymes in it, & check her blood sugar. We were having probs with the feeding tube & the enzymes were making it clog & it kept beeping so we ended up staying up till about 2 in the morn trying to get that to work. Then we had to have our alarm set for 4 Am to have her check her blood sugar again & give the 4:00 meds. She ended up waking us up again at 6 so we ended up staying up & getting her 8 AM meds ready & didn’t go back to sleep. So that was our 1^st night!! We were really missing the wonderful nurses about that time, haha!!

Today was pretty hectic too. The home health nurse came this morn to change the dressing on Alexa’s picc line. She got here just as I was getting out of the shower & was here for about an hr. After that Alexa hurried & showered & then we left to go to the airport to pick up Tyson. We were pretty nervous about him flying alone since he hadn’t flown before but Chelsea & Melissa took him to the airport & Chels was able to get a pass & took him clear back to his gate! We parked the car & all went in to meet him. Alexa & I were really excited to see him. He snuck up on us as Alexa & I were sitting there putting some meds into her feeding tube. We all thought he’d grown another ½ inch when we saw him!! After that we had to hurry to Alexa’s dr apt with Dr. C. On the way we stopped at Taco Bell & Alexa actually wanted to try eating a bean burrito. The dr had told us she could try whatever she wanted so that’s what she did. She actually ate about 1/3 of it! The day before she ate about ¼ of a grilled cheese sandwich & didn’t have any probs!! When Dr. C came in & we told him he was so happy. He kept saying, “That’s good! That really is great!!” He is so pleased with how she is doing! He says if she continues to eat well she will only have to do the feeds thru the tube 12 hrs a day instead of continuous! He wanted to do an xray since she hadn’t been pooping really regular for a couple of days but she was fine. After that we rushed over to drop off Alexa & Ty at the RMH & I took Tyson to his apt with Dr. Clavel, the headache specialist that is also Alexa’s pain dr. We were there for about 2 hrs. I think he is going to be able to help him. I sure hope so anyway!! We came back & ate dinner & then just enjoyed having Tyson here. It sure is good to be with him again!! This little apartment we are in is getting smaller & smaller! We talked to the people in the office about getting a bigger room but they don’t have any available right now. We really just feel lucky & grateful to be here though, even if we have to squish. Tyson was in heaven when he saw all the snacks on all of the counters that he can help himself to any time! We noticed that Alexa’s dressing on her picc line was all wet inside the bandage so I had to call the home health nurse again. She had to come out & change the dressing again & said it was good we had called. I guess when Alexa took her shower we didn’t wrap it well enough. Hopefully she will get that out soon.

1/23/14

I didn’t get this ready to send before I went to bed so here we are this morn. The night wasn’t too bad this time. We are getting the routine down pretty well of checking her blood sugar every 4 hrs, which btw has been perfect every time! I will be glad when we don’t have to get up so much during the night!! I’m going to come home with bags under my eyes, 20 lbs heavier & grey hairs, haha!