I'm sure some of you are wondering what our life looks like in this period while Adam is being cared for at home. Here is a loose description of a day in our lives.
6:30 a.m. Wake up, eat breakfast and get ready for the day.
7:00 a.m. First IV dose of one of his antibiotics is due. It takes a few minutes to set up the tubing, the medication and to properly set up the alcohol wipes, flushes, etc needed for this dosing.
8:00 a.m. Put a protein pack down the J tube to boost nutrition. Hope you didn't forget to put in the last can of formula into the feeding tube this morning.
9:00 a.m. Morning meds. Some I have to crush and mix with water. Others I have to extricate from the capsule that they came in so that he can put it under his tongue. Flush, administer, flush. Before you can put the meds in you have to put the feeding on hold and remove the feeding tube connection. Restart feeding.
9:30 - 10:00 a.m. Redress any drain dressings that are oozing or messy. This is a difficult process for Adam as it is painful as well as tedious for him to sit up while in said pain. We have to remove the messy old dressings, clean the area to be free of drainage, then put new clean dressings on in a way that will be easiest to remove it later tonight when we need to do it all again. Not a pleasant job for us either. It is not fun to cause your child pain no matter how old they happen to be. Probably need to remove his shorts and replace them with new clean ones at this point because of the drains leaking badly. Have to get him up out of bed for this. While he is standing up we can replace the chux with clean ones and/or put new, clean sheets on the bed.
After this is done Craig empties all the drains and measures the amounts from each one so that we can record it. Probably the least desirable job as it is also messy and to be honest, smelly. Then I come along and flush and recap each drain.
Remove feeding connection tube. Throw away old bags.
12 Noon Next antibiotic is due by IV push.
3 p.m. Another dose of the IV antibiotic that he had at 7 a.m. with the same process listed previously.
6 p.m. Dose of IV antifungal medicine with the same process described in other IV medicines listed above.
Start feeding. This entails filling one bag with water and another bag with 4 cans of formula. Then you set up the pump and get it primed. Plug in the feeding tube feeder tube and start running it for the next 16 hours.
8:00 p.m. Give another Protein pack.
9:00 p.m. Give most of the same meds you did at 9 a.m. with the same process.
9:15 p.m.- 10:00 p.m. Redress drain dressings again if needed and empty and flush drains again.
11:00 p.m. Set up the IV antibiotic that you did two other times during the day ONE more time. Add another 2 cans of formula to the feeding tube.
Midnight Flush, swab, flush, flush the PICC line after that last IV treatment and kiss him goodnight.
In between all of the previous items: Give pain medication as needed. Prepare and eat meals. Clean up the mess you've made with dirty sheets and clothing. Do laundry. Do dishes. Run errands. Take him to the bathroom. Get him up to walk.
After midnight: Go to bed. Wake up to check on him or take his temperature or give pain meds.
6:30 a.m. Wake up and do it all again!!!
Our girls have been amazing and have helped us so much. Anna is taking care of all of the landscaping. Katrina has decided to withdraw from the class that she was going to take this summer and has reduced her hours at her job so she can be here for 4 or 5 days a week. She can cook and clean and help in any way we need her to so that is a great help to us.
Zach has offered to come home and help any time Craig has to be gone for work. Nathan was here last weekend and helped us tremendously.
Now you have a little idea of what is going on in our home.