Tuesday Gregory saw his orthopedic doctor and got a good report. The bone is healing and he can begin. With light jogging and kicking. He was thrilled.
Then Carline had her 24 hr ERG to follow up from her seizure in December.
The entire day Wednesday was spent packing up our three months of living there and cleaning the apartment.
it will be hard for Luke to adjust to being back home. He had his routine at Children's for 3 months.
the dog visits (Luke loves Ike who has been visiting since his transplant)
The escape to Target
Hospital school fun
Pizza parties with the nurses when he could finally eat
Friends (this is Charles from housekeeping.. He checked on Luke everyday. There are many special friends at Children's just like Charles who are all so special to Luke.
Luke will miss Anna.. she is a special friend to Luke. Anna has taken care of Luke since about 6 Months after his transplant. He got her this Spiderman scrub top because he was not impressed with her flower prints!
So many of the nurses are so incredibly special to Luke and to our family. They have celebrated our good times and held our hands through the bad. I don't know how Luke would have made it through without his nurses. I wish I had pictures of them all with you ... Whether he was harassing them with remote control rodents/snakes/spiders, calling out for "emergencies" which translated to his DS falling on the floor, or in those hard times of the bad belly or other times of need. I can't imagine going home weekly to work if it wasn't for each of Luke's nurses. To trust your child under someone's else's care is so hard, especially with a child who has complex medical needs. But their care of Luke and my trust that they would advocate for him, expertly care for him, and love him is what got me through those times I was away.
Once we were at Ronald McDonald House it was real we were going home. I am not sure how we would have gotten through the three months without Ronald McDonald House. We rotated kids who were there at different times, but having his siblings around helped Luke a lot. He doesn't feel as lonely with them around. The free meals made by families and groups that come in to volunteer were a welcome break from hospital food and helped financially a lot. The staff there really helped us feel like we were at home. We miss those that no longer work there but have gotten to know new employees who have become our friends. And seeing those who have been there since we started staying at RMH is like seeing family.
It is hard to get his endurance back after being in the hospital so long.
Many of the kids did schoolwork like this over the past 3 months.
The staff made Luke a goodbye poster. Here he is the morning we left reading all his messages again.
Sometimes we had to get creative not having everything from home with us.
Good old Ronald.
The van was packed to the gills! There was 10000 miles put on the van since the fall.
Luke was charged to document Flat Stanley's adventures by a friend names Leo In Wisconsin. Flat Stanley arrived just in time to see Children's.
it is nice to be home. Caroline and I started a devotional together. Kyara joined in.
My birthday card from Luke. He got it out of the drawer of cards himself and was so happy to give it to me.
hey 4/7 Of the kids looking isn't too bad right?!?!
best birthday gift.. all the family together. And Luke being home and able to eat birthday cake with us.
Glen and I went on a Valentine's Day date to Wegmans.
Then came home, made fondue and watched a movie. From November to the Day we got home it was rare we spent more than 2 awake hours together (only a couple of times that happened).
So the first couple of days went well. Luke was eating about twice a day. Then Saturday and Sunday were hard. Sunday he was up at 5 am with a bad belly. It is so tough on him.
We continue to figure out his best schedule at home of IV fluids over 16 hours, IV medication twice a day, medicines almost every 2 hours and his other medical stuff. Insurance has not approved our nursing hours. Thankfully today a nurse was sent out as I am working. But now I work a 24 hr shift today and Glen is home switching out IV fluids, giving IV medications, doing all his meds and caring for the other children (add in a ballet class too). Gowns job is in IT... Caring for IV medications through a central line is not second nature to him.
we will have no nursing tomorrow. Which means I will work a 24 hr shift then not be able to sleep. And I have to work another 24 hr shift on Wednesday. If our insurance approval does not come in time to send a nurse out Glen or I will have to call out of work. This is a real issue and ridiculous. How could he not qualify for nursing especially when we are both simultaneously at work. Craziness. Just like our supply company that said we would have his formula by the Day of discharge and it arrived two days later. This is the most incredibly frustrating part of having a medically fragile child. It is a whole mother full time job making phone calls, filling out papers, paying bills,etc. I don't mind the direct care of Luke at all.. it can cut into sleep, make a busy day, cause unique challenges but we do it all for Luke with love. The secretarial stuff.. not so much love flowing there.
A special little buddy came to welcome Luke home.
Luke's labs today we're a bit off. His blood pressure has been too high about half the time since we are home. The belly continues to be on a roller coaster of working and not working. Emails a have been sent. We hope to get Luke in a better place over the course of the week. One big praise is his kidney function labs were excellent. I'm so happy about that!
Keep praying for us as a family as we reconnect. Lots of changes for all now that we are all home. It is hard on everyone. It seems being home would be good all around, but honestly the transition is a stress. Besides for the past three months we were surviving through each at. Lots of stress all around. Now our guard can be let down a bit and that brings some of that bottled up stress flowing out.
Glen and I are hoping to get away for a nught and we have a special one night family activity planned in March. One day at a time.
Pray for the insurance to approve Luke's nursing hours so we can work and sleep. Please pray that Luke does not get a line infection and his belly behaves. Pray his electrolytes improve and his blood pressure normalized. Pray those kidneys keep doing well. Pray for all of our strength during this time.
