Well here we are finally to an update! I had intended to sit down and write this after the first day or two of Landon’s program but that didn’t happen. You’ll discover why in a minute if you didn’t already know ha!
The Trip
The trip up here to Minnesota went really smoothly, thank you for all the prayers for that portion of the trip. We made it in two days and Knox did really well. Landon was actually able to drive all but about 2 hours of the trip, praise the Lord. The blurriness of his vision has mysteriously stopped happening recently so even when the pain is bad, he can still see! Both cars ran well on the trip up, the Lord was gracious!
Arrival and First Day
We got here Tuesday evening and got moved into the extended stay, and Paige, David, and I went to Walmart and picked up some things we’d need for the stay.
Wednesday came and Landon had his first full day of the actual program which went well. We picked him up for lunch and he told us about the first day which was a lot of baseline assessments and things. We were all met with the reality (again) that this is a pain MANAGEMENT program not elimination and that it was highly likely Landon would leave in as much pain as he came in but with tools to live his life. This was sobering and in many ways discouraging though we still were thankful for God’s provision and believe this to be the right path forward. Landon was able to have some good conversations about God and the truth of the Gospel with some of the doctors and nurses from the program. Knox had a slight wet cough a couple times but it was so minor we barely noticed.
Unexpected Mayo Trips
Wednesday night I put Knox to bed and he had been unusually clingy but he went to sleep and he woke up an hour later super raspy and upset. There was nothing the matter at this point and he went back to sleep really easily. An hour after that, he woke up inconsolable and was raspy and had this awful sounding noise when he’d breathe between cries. We called Paige and David (they were supposed to go home the next morning) and they came down to our room. Landon and I didn’t know what it was or anything and they said it sounded like croup. We wondered if he should go to the ER and then Knox started to struggle to breathe. He was yawning a weird amount, coughing terribly and struggling to breathe. Tried a steam shower for a few minutes while we prepared to go the ER. Paige stayed behind to be with Landon and David and I took Knox to the Mayo ER. It was really scary.
Ironically, perhaps providentially, we had just found out where the Mayo ER was earlier that day. I checked in at the desk and they immediately took us back because they could tell he was struggling to breathe just hearing him–he was gasping. Within 2 minutes of us getting into a room there were twonurses, a respiratory therapist, and two other doctors in the room watching Knox breathe. They immediately did a breathing treatment and gave steroids and ibuprofen. It improved some but they pretty quickly did another breathing treatment. They said they’d monitor for 6 hours before they’d let us go home but if he needed another breathing treatment they’d have to admit him. After a little time his breathing got worse again and he began retracting more again. Knox was upset and pretty miserable– he just cried for probably close to 2 hours. They decided after about 1.5 hours after the second treatment he needed a third, which became obvious to me and David as well. They made the decision to admit and he improved a lot more after the third treatment. They finally got him a room in their children’s hospital and we were transported up about 4:30 am. Thursday morning. They had said they’d probably just watch him til noon and send him home with a steroid. He did a fourth breathing treatment and said if he needed more he’d have to be moved to the PICU which thankfully we avoided. He did really well, started playing and was sounding better so he was discharged about 1 pm and we were told when he’d need to come back in if he got worse, etc. The rest of the day was good and we went to bed.
We woke up Friday morning and Knox’s breathing was worse again and he was retracting again off and on. I ended up calling and speaking with the medical team who had cared for him in the children’s hospital and they said to bring him back to the ER. We came back to the ER and were brought right back to the pediatric area and he was given another breathing treatment. Because he had so many treatments for a seemingly “simple” case of the croup they decided to admit him again and to watch him overnight. The stay was mostly uneventful, praise the Lord. They sucked out a bunch of his snot which helped a lot and made sure he was improving. It was sad to hold him down while they suctioned his nose. It helps him but he HATES it. He got out about 1 pm on Saturday. Paige and David found a supersonic snot sucker to help him continue getting better after leaving the hospital and it has done its job well.
Knox did very well Sunday and is even returning to himself like before we even realized he was sick, praise the Lord!
This weekend and things to look forward to!
We found an AirBNB to move to on Tuesday that looks very good for our needs. It will be a better situation than a small extended stay room–for Knox and all of us!
Landon had a good talk with a doctor in the program on Friday who thinks that because Landon got relief last October from the migraines that he can again. He said he’s cooking up some ideas and will talk to him about it this week.
Landon did a lot of walking this week, especially walking back and forth from the program to the hospital to see Knox on lunches and things! He has been able to help with more tasks around the hotel and taking care of Knox. This has been something that they have been encouraging him to do as part of the program! As part of the program, Landon is getting into routines, planning his weekends to stay in routines, and setting goals to hit for the weekend. Even with all of the craziness, Landon was able to hit all of his goals for weekend activity!
Thank you!
We are excited to see what the Lord has for Landon this next week of the program and we are grateful for all of your continued prayers.
I also wanted to say thank you so much to those who are praying or have donated. You all are such a blessing to us and the Lord has used you to help provide for this trip in ways that are astounding.
–Rachel
Prayer requests:
- Continued health for Knox
- Good health for all of us.
- More gospel conversations.
- All of the health things going on back in Oklahoma with Landon’s grandma and continued things going on in Minnesota.
- Avenues for treatment and decreased pain for Landon.