Hospitalization #9 - Day 3

Reinforcements have arrived!!! GG made it in today from Atlanta and took over for Rob at the hospital so we will be able to be at home together for a day or two. We're so grateful to her for coming to help out whenever we need it, and grateful that my dad is gracious about being without her for the week so she can be here.

Not much to report today. Brett is just getting the IV antibiotics and we're waiting out the weekend. He is not feeling much better yet. He's distressed about being here - we can tell because he wants to be held constantly and he cries when we even go out of the room for a second. Whenever the door opens he starts to cry because he is just so tired of being messed with. I can certainly understand how he must feel, and why he just wants mommy or daddy or GG to hold him. He did feel well enough to do a little playing in the bed today. We don't have any toys there right now, so he improvised a little with a wisk and a bowl. It's not a terribly exciting video, but cute nonetheless.

Hospitalization #9 - Day 2

Today was uneventful except for the good news that the team was able to get a PICC (peripherally inserted central catheter) in Brett's arm. As I said yesterday, this is preferable to a Broviac because there is a smaller risk of infection, and it can removed at home by a nurse when his treatment is completed instead of having to get it removed surgically. This is a big deal because it was thought he might be too small to get one. It's Brett's first PICC - he's had 3 Broviacs before this.

This also means that we didn't have to wait until Monday to get this line in, meaning our stay will likely be a good bit shorter. Now that he has been on his IV antibiotics (Tobramycin and Cefepime, in case you're wondering), they will have to draw blood at certain hours after infusion to "check the levels" - that the dosage of medicine is in fact the correct dosage for his bodyweight. Too little and it won't be effective, too much and it could result in hearing loss. Since he's been on these antibiotics 2 or 3 other times, they have a good idea already of where to start. If the levels are perfect the first time, we may be able to get him home early next week. If they are not, it usually means waiting another 36 hours to try again....

Praying we'll be able to bring him home sooner rather than later!

Go, Gantt, Go!

Gantt took his first few steps over the weekend, and now he's walking so much! He is too cute!

In other news, he hit his teeth against the bathroom tile the other night and chipped his top two front teeth. I was upset because his teeth were/are so beautiful! I was afraid he would have to lose them, but the dentist feels pretty confident that there is no nerve damage and that the teeth will be ok. Maybe we'll be able to file them down some in a few months so the edges aren't so sharp. You have to look kind of close in this photo, but if you do, you can see the damage. Poor baby!

Hospitalization #9 - Day 1

Back in the hospital again because Brett just hasn't been improving. His cough has worsened and his breathing still remains labored. Talked to the doctor the last couple of days about whether to come in, and last night decided that he should come in today. Everyone agreed that he needed fluids and IV antibiotics. They saw us in clinic and we got another x-ray, which does show even more improvement than last Friday's, which is encouraging. We got an IV placed in clinic, got a separate blood draw for various tests, and started the fluids. While we waited for a room, Brett slept on my chest for about 2 hours. He was feeling a good bit better after the nap and the fluids. We got a room about 4:00 and made it through all the admit procedures. I've unpacked and finally had something to eat, but then his IV came out. So we're wanting to get settled in for the night, but I know they are coming to put another one in sometime tonight.

The PICC team is going to look at him and see if they think they can place a PICC. I really hope they will look at and maybe do it tomorrow, because if we got a more permanent line placed, he could go home early next week probably. If they don't do it tomorrow, it won't get done until Monday. The PICC is preferable to another Broviac because there is less of a risk of infection, and it can be removed by a home health nurse when we are finished with it - it does not require another surgical procedure for removal.

Wordless Wednesday

Double Chocolate Shakes = Happiness

...Finding What Works

Love those brown eyes!

We finally figured out something that works to keep Brett still during his long treatments - watching BabyTV on the iPhone. It's difficult to watch regular TV because it's all the way across the room and you can't hear it over the compressor no matter how much you blare it (and usually the other kids are trying to go to sleep, so that's no good). Then we saw that we could get a Baby TV iPhone app that lets him watch episodes of his little shows up close and be able to hear it over the compressor as well! 

The viral panel (nasal swab) we did last Friday when I took him in tested positive for rhinovirus again (the common cold). Again, none of us in the family or regular caregivers have been sick. He's still breathing fast and working hard to breathe, but still feeling good. We're going back on the oral steroids for 5 days to see if it helps him over this virus. If he worsens, it may mean going back in the hospital.

Brett taking TOBI and watching BabyFirst TV

*Breathe*

Oh, TOBI. We now have a love/hate relationship! I love it that it appears to be working! I hate it that it takes so long and we have to do it twice a day. Also, the ideal time between doses is 12 hours. Therefore, we have to do it as soon as he gets up and right before he goes to bed. The TOBI is an inhaled antibiotic designed to work against pseudomonas. Using the compressor we have, he has to breathe the medicine for 30 minutes. The TOBI must be done after airway clearance (chest PT), so we're pretty much making him sit in the chair for an hour morning and night.This is in addition to Albuterol in a metered-dose inhaler, once-a-day Pulmozyme treatment which lasts 15 minutes, and Flovent also in a MDI.  Sometimes it takes 15 minutes just to prepare the medicines, not to mention all the washing and sanitizing of the equipment and syringes.  At 15 months old, and he's got his parents sticking stuff on his face all the time. He'd rather be doing something else. If not for the g-tube, he'd have us forcing all his oral meds down, too. To some others who have CF or other CF families, this regiment might seem fairly "easy." But for us it's quite an adjustment.

We took Brett in to clinic Friday afternoon because he developed a fever after his shots, which is normal, but his breathing rate was 80-90 times a minute and his sats started getting pretty low (87-89). After an Albuterol treatment and 20 minutes of airway clearance, the sats improved to 92-94. He still felt fine during all this - we were really just being cautious. Brett is tricky, and you never really know what is going on with his body. It's like playing detective. He got a chest x-ray which looked improved from 2 weeks ago! That was reassuring that the TOBI and Cipro appear to be effective working against the psuedomonas. Hopefully that is really the case! He also had a nasal swab for viruses and a throat culture. These are easy tests that are pretty much routine and can give us good information at times. Otherwise, we're just hanging out, doing the meds for 3 weeks, then off for 3 weeks, then go back for another bronchoscopy. Here are the meds he's on now.

Enzymes - 18 capsules/day

Prisolec - 2x/day

MCT oil - 2x/day

Vitamins - 1x/day

Probiotics - 1x/day

Actigall - 2x/day

Baclofen - 3x/day

Zinc - 1x/day

Cipro (oral antibiotic) 2x/day

Potatoes in g-tube 3x/day

Chest PT 2-3x/day (20-30 min each time)

Pulmozyme 1x/day (15 min)

Albuterol 2-3x/day

Flovent 2x/day

TOBI 2x day (30 min each time)

Table Salt

20 hour Tube feed - still wears the backpack most of the day

Total Time spent managing CF:  4 hours

15 Month Check ups

Twins at 15 months

Last Thursday we had Brett and Gantt's well 15 month checkups. This was the last time I'm taking them both at the same time! It was crazy, even with 2 people!! We saw Dr. Davis at Wake Forest Peds, and Gantt got all his 12 months shots. His were on hold because of Brett's natural killer cell deficiency. Brett got shots also, but none that contained live viruses.

Brett weighed in at 21 lbs 3.5 oz, which is in the 8th percentile for his age. His height was less than 5%. However, we are truly encouraged that he is even on the chart at all, because for a while he wasn't.

Gantt weighed in at 23 lbs 4 oz, which is in the 28th percentile. His height is 82%!!! Gantt will go back in a few weeks to get the 15 months shots and our next well visit will be at 18 months.

At the doctor's office