What's Next?

Brett has been through a lot of "testing" lately with the CT Scan and various lab work done to get more information about how his immune system works (or doesn't work). The results of the CT scan were less than great. The films showed various areas of lung collapse and what appears to be exacerbation or tissue damage- though we're not sure of the extent or whether there is irreversible damage. His lung disease looks quite advanced for his age. In response to this new data, our doctor has continued to research other cases that are similar to Brett's and to consult other pulmonologists as well as doctors in other fields (all employed at UNC) to create a treatment plan that might benefit Brett the most. 

The next step in creating that treatment plan is to get as much information about his condition as possible through the various tests. Some of the tests have already been done, and some will be repeated on our next clinic date, this coming Monday, March 22. The main test at clinic on Monday will be his infant PFTs (pulmonary function tests). They aren't routinely done on infants, as you have to be old enough to cooperate (Mark has been through them before). So if you have the need to perform the tests on an infant, he has to be sedated or under general anesthesia. Because of Brett's oxygen needs at the moment, he will be going under general anesthesia for the procedure. It is not an invasive procedure - they just hook him up to various machines and force his lungs to expand, contract, hold the breath, etc. The tests are scheduled for Monday afternoon so it will be sometime early next week before I have any results to share.

Also, many of you have told me that you view my posts through a reader and that you rarely visit the actual website. If this describes you, I would like to call your attention to a little gadget I added that posts "Today's Status." It is in red at the top right hand corner of the blog - I added this so that if I fail to be explicit in my post as to where we are that day, you can know. It will either read "we are in the hospital today" or "we are not in the hospital today." I thought this might be useful because when folks call me, this is one of the main questions they ask. Now, in case you want to know, there it is!

A Day in the Life

Well, our household is pretty much recovered from the nasty stomach virus. I was the last one to get it, and I'm feeling almost normal now after spending many days catching up on sleep once my sitter gets here. Brett is the only one who never did get it, and I know that's good.

Have you been wondering what our home "medical schedule" looks like? I thought I'd give you a glimpse into what it is going to require from us for the next 10 days. Know that I am not complaining about this -  I am happy to have my son still with us, and I'm so happy to have him home from the hospital.  But the getting up at night is rather tiring. He would be getting all this treatment anyway, whether in the hospital or at home, and we'd much rather do them at home than have to be stuck at UNC! I just thought some might be interested in what our daily schedule revolves around treatment-wise.

Above, you see a photo of all the medications and medical supplies, and machines I had to pack to go to West Virginia with Brett.  It took me about 2 hours to assemble it all. And he wasn't even on oxygen at the time. Now I would add extra cannulas and cords, and 5-6 small tanks of oxygen! Good thing I brough that lime green medical info book, as I needed it in both unfamiliar hospitals.

5:30am- Give Benadryl (to prevent adverse reaction to IV antibiotic #1) in g-tube & draw up and administer Actigall, another g-tube med

6:00 am - Wash and sanitize hands, flush line with saline, start antibiotic #1 infusion

- Enzymes (they are capsules we open and empty the little beads into applesauce - mix and  give by mouth)

7:30 am - Wash and sanitize hands, remove antibiotic #1 and flush line with saline then heparin

*Morning Respiratory Treatments*

2 puffs of inhaled bronchodialator

20 minutes of Chest PT - about 1500-2000 claps (or affectionately nicknamed "pats")

2 puffs of inhaled steroid

9:00am - Enzymes

- Draw up & administer Prevacid, vitamins, & MCT oil

11:30am - Give Benadryl

12:00pm - Wash & sanitize hands, flush line with saline, start antibiotic #1 infusion

- Enzymes

*Afternoon Respiratory Therapy*

2 puffs bronchodialator

20 minutes chest PT

1:30pm - Wash & Sanitize hands, remove antibiotic #1; flush with saline then heparin

3:00pm - Enzymes

5:30pm - Give Benadryl & Actigall

6:00p - Wash & Sanitize Hands, flush line with saline, start antitbiotic #1 infusion

- draw up & adminsiter Actigall

- Enzymes

7:30pm - Wash & Sanitize hands, remove antitbiotic #1 and flush line with saline, start antibiotic #2 infusion

8:00pm - wash & sanitize hands, remove antibiotic #2 infusion & flush line with saline then heparin

*Evening Respiratory Treatments*

2 puffs bronchodialator

Pulmozyme nebulizer treatment (about 15 minutes of breathing it)

20 minutes chest PT

2 puffs inhaled steroid

9:00pm - Enzymes

- Draw up and administer Prevacid, Zinc supplement, Vitamin K and MCT oil

11:30pm - Give Benadryl

12:00am - Wash & sanitize hands, flush line with saline, start antbiotic #1 infusion

1:30am - wash & sanitize hands, remove antibiotic #1 infusion and flush with saline then heparin

5:30am - start all over again! Tired yet? Are you wondering when I had time to sit down and type that all out?

This is a photo of*some* of the medical supplies that have taken over my pantry. (The Easy Mac isn't really medically necessary, though LOL)

These aren't all Brett's needs, of course, because he is a regular baby as well! He eats 3 meals a day (when we are on top of things) in addition to the enzyme "snacks" and is just like any other baby in every way. Gantt has regular baby needs, and we have Mark to get up and ready for school and out the door by 7:10am. Rob gets Mark clean, dressed, and ready for school then drives him there on the way to work. We get home from picking him up around 3pm, and we do homework. When Rob gets home home he spends time with the kids, and lately he's cooked all our dinners. After dinner we do some family time, then he takes Gantt and Mark for book-reading and a little snuggling before bed. He says goodnight to Mark and puts Gantt to bed while I start Brett's breathing treatments and chest PT. We try to finish around the same time so we can relax and spend some time together. We've always been a great team. Sometimes Brett stays awake a little longer so we have some alone time with just him, which is also sweet. When there's so much to "do" for Brett, sometimes I forget to spend some loving attention on him, too.

By the end of this 10 days our hands are really raw and painful from all that washing & sanitizing. And the line STILL gets infected!!! It's very frustrating. We're thankful for the help of our sitters and also friends who pitch in and help when we need it.

I did not escape the terrible illness that ran through my household last week. Hold on for new posts just as soon as I feel better! -Jennifer