Hopitalization #10 - Day 10

Yeah! We made it home last night (Thursday).  We are soooooo glad to be home and have the chance to regroup our life and our family. Right now the plan (although it is obviously always subject to change!) is to admit Brett again on November 21st, and do the endoscopy the next day, then stay another night just to watch him. This is nice because it gives us a week's break. 

Hospitalization #10 - Day 9

Fun with Daddy

 Brett has gained almost 200 grams a day since he has been admitted! When he came to clinic last Tuesday, he weighed 8.8 kilograms. Today he weighed 9.9 kilograms, so the therapies have been successful in that regard. In pounds, he went from 19lb 6 oz to 21 lb 9 oz. This is only his second day on full feeds and off TPN, though, so we still have yet to see whether he can continue the weight gain without the TPN.

Taking his Flovent

There was some talk about Brett going home today, but it was not meant to be. It appeared this morning he could be starting to not tolerate the full feeds (demonstrated by loose bowel movements which could suggest "dumping" the nutrients), but since this morning that hasn't happened again. Discharge takes a long time, and has to be coordinated perfectly when your little patient has to have medications at specified times - the home health company has to have them at the house, and you need time to be able to get home before the next scheduled medication.

What a big boy!!

 Another issue is that Brett's antibiotics were started at 2 am when he was admitted. Obviously, I'm not getting up at 2am to do an IV, so we have to systematically inch it back toward 10pm, 6am, and 2pm. The other one will probably be at 9:30am and 9:30pm. Also, since Brett's IgG level is already below his target of 500, he can get his infusion while we're still here tomorrow instead of having to come back next Tuesday. His GI doctor still wants to do an endoscopy,  but she wants to wait until at least next week to do it. So now the tentative plan is to stay the night, get the IgG infusion, and go home sometime tomorrow IF he doesn't continue dumping. Let's pray it really happens!

Hospitalization #10 - Day 7

Another night at UNC...

I'm doing a marathon stay with Brett right now - I call anything more than 24 hours a "marathon." Actually, this is only my 2nd overnight stay out of 7 nights, though, thanks to my "angel mother" who did a SUPER marathon and stayed 4 nights!!! Wow!!! Thanks mom!

Brett getting ready to go to the playroom - still on contact precautions

Brett has gained some weight (from 8.8 kilos upon admission to 9.42 kilos yesterday). Tonight the TPN will be turned off and by tomorrow morning he will be at his full feeds. Then we wait to see if he "tolerates" this and continues to grow, or if he starts "dumping" the nutrients  - thus the weight gain would stall. Only time will tell.  What we DO know from this admission's stool cultures in addition to last month's stool cultures is that he is absorbing proteins and carbohydrates just fine - it's the fat that he isn't assimilating.

Brett in the playroom - the poor girl had to roll everything around behind him!

It amazes me that God has designed our bodies just perfectly and that sometimes if one little thing goes wrong, it can create a disaster. Even though we complain that we get fat when we eat too much and don't exercise, we can be thankful that our bodies do what they are supposed to do. When your body can't absorb fat, it's really difficult to stay alive and grow without drastic measures. Also, an important part of cystic fibrosis management is regular physical exercise! This of course means even more calories are burned and less are being used for nutrition.

 A room full of toys, and all he wanted was to push a chair around!!

Brett's med tower

Brett gets over 2,000 calories per day via tube feeds and dietary supplements, and whatever he eats is additional. His special formula is pre-digested, and the extra fat we give him doesn't require pancreatic enzymes to digest. And he STILL has trouble gaining weight. We're thankful for the extra support options like TPN, but hope to not use it for too terribly long. Hope to be able to bring him home sometime this week.

Hospitalization #10 - Day 6

Are you ready for some football??? Mark and Gantt are gettin' ready for the Chiefs vs. Raiders game today. There have never been cuter fans!

As for Brett, there hasn't been much to report the last few days - still on IV antibiotics (and will go home on them), and still on TPN. Every 6 hours they are weaning down the TPN and turning up his g-tube feeds. They say when the feeds are back at 100% and the TPN is completely off, he should be able to go home. At this point my guess would be Wednesday. Otherwise, Brett looks much better and is feeling good. Good enough for chocolate ice cream anyway!

Hospitaliation #10- Day 3

Brett is feeling a bit better today - the antibiotics have kicked in and he's starting to get bored of sitting in his hospital room. Because they ran a viral panel, he was put on contact and droplet precautions, which means everyone has to put on a gown, mask and gloves when they come into his room until the viral panel comes back negative.

What I call "sick eyes"

Some heart-rate drama happened last night - but it seems to be more stable today. The doctors are trying to stay on top of that, but of course we hope that nothing comes of it. He had an EKG which was normal and all other vital signs seem to be normal.

His 20-24 tube feeds have now been reduced to a "trickle" so we can rest his gut for a bit. He's on IV nutrition right now (TPN for those who know about it), and his stay is "indefinite." The doctors really want to try to get to the bottom of this nutrition distress and figure it out before it becomes a nutrition disaster. We're all for that, of course, but it might mean a lengthier stay than our usual 5-10 days. But maybe not, we'll just have to take it one day at a time.

Hospitalization #10 -Day 1

So Brett was admitted to the hospital today. It was only a matter of time. He has enjoyed a 58 day period of "wellness" - i.e., being out of the hospital. This was the longest he had been out of the hospital his whole entire life! We were so glad, but now it's time for an IV antibiotic "clean out," and, unfortunately, some IV nutrition because he has lost so much weight recently. You might have seen on my Facebook that he had gained 450 grams, but all that was lost in the last few weeks. Also, his incision from the port-a-cath placement has been very slow to heal, which also suggests malnutrition - as most of his body's energy is being conserved for survival, not healing. I'll update every day while he's here.