Hospitalization #12 - Day 8

Brett made it home today - got discharged about 4:00pm. Met Dad and brothers at Chili's for dinner and now home and trying to get settled.

We'll be giving IV antibiotics every 6 hours for 2 weeks.

Hospitalization #12 - Day 7

Hooray! Brett got a PICC line placed today that is big enough for home use! That coupled with several consecutive days of negative blood cultures means that he will most likely be able to come home this week!!

Right now we are hoping for Thursday, the day after tomorrow.There are always certain variables that could change things, of course, and for this visit, one of those variables happens to actually be the weather! We've had ice this week, and that shuts down almost everything around here since it's so dangerous to drive on ice. Hopefully the weather will cooperate for the rest of the week and home health will be able to deliver his medications, etc.

We closed the business today because of the treacherous driving conditions as well as lack of customers! Yesterday Mark had a 3-hour early release at school, and he was completely out today. Tomorrow is a 2-hour delay. Maybe the rest of the week will even out weather-wise and all will soon be back to normal.

Hospitalization #12 - Day 6

Gantt visited Brett at the hospital today - and they got to go to the playroom together!

As for Brett, port was not only infected with staph, but also 2 other gram-negative bacteria. Therefore, he's now on 3 different antibiotics I think to cover all those. It surprised everyone that he was growing something other than staph. He is going to have to have some IV antibiotics for 11-14 more days, and we are still using a peripheral IV in his hand. His pulmonologists don't really want him to have another central line (like a port or broviac) because it seems every time it gets infected. However, as I have said before, you can't go home on a peripheral IV, and it has failed every day and he has to get a new one.

After much deliberation between us (Rob and I) and all the "teams" involved (pulmonary, infectious disease, surgery, immunology), we have come to the conclusion to try for a PICC line tomorrow. In the best case, they can get a PICC line big enough to go home on when the time comes. If not, the hope is that we can at least get one to use instead of the peripheral IV while he's in the hospital. The advantage to the PICC versus the port-a-cath or Broviac is that once we're done with IV therapy, the PICC can be pulled out by a nurse - it doesn't have to be surgically removed. We can pull it out when we're done and he won't have any central line at that point to risk getting infected. This will give his body a little break. Hopefully this makes sense. I'm really tired.

Gantt walking down the ramp with Daddy watching him

Hospitalization #12 - Day 5

Nothing new today either.  We got all dressed and ready for the Chiefs game today.  Unfortunately, the Chiefs didn't do the same.  Lost 30-7.  UGH!!

So he got a bath and donned his Grave Digger shirt and we toured the hospital.  The video is of us at Starbucks this morning.  The photos are from this evening.  Lots of fun together this weekend!!

Hospitalization #12 - Day 4

No real news from today.  We just relaxed and watched some football this afternoon.  I did take him down to the cafeteria for a little bit.  He enjoyed some M&Ms as well as being out of the room!!!

Hospitalization #12 - Day 3

Jennifer is home for the weekend and I am looking forward to taking care of my little man for a few days.  I have several meetings next week, so I will not be able to come to the hospital.

Brett made it through surgery quite nicely.  By the end of the day he felt pretty good.  He was taken off contact precautions so I was able to give him a wagon ride around the floor for a while.  He had a big time flirting with the nurses.  He was blowing kisses and smiling like normal!

They drew more blood tonight to check on other bacteria that may be in his blood.  Nothing definitive yet, so we will just wait and see.  They also had to take out the line that was put in earlier today because it quit working.  They were able to put another line in his other arm.  It is so hard for an infant to keep a line in their arm.

Here are a few pictures from today........

Hospitalization #12 - Day 2

Here we are on day 2 - Brett's blood cultures grew a "gram positive cocci" very quickly. Although it will not be absolutely determined until tomorrow, it is probably the same staph aureus making him septic. He started Vancomycin today and will have his port removed.

Brett is on the operating room schedule for tomorrow morning, so please pray that everything will go smoothly as usual with the anesthesia and the procedure itself. They will place a peripheral IV line in during the procedure that we can use for the antibiotics as long as it lasts. The peripheral IVs tend to fail easily in babies, which is the worst part about not having a central line when you need iV antibiotics. He will need to be treated this way for as many days as possible - they want 5-7 days AFTER they get a negative blood culture. Moreover, Brett will be in the hospital quite awhile. There are various directions his care could take between now and then, so we'll just take it one step at a time.

Our room

 If we have to stay awhile, one good thing is that this time we got a corner room, which is VERY BIG! You can see it in the picture above, and you can see the cool set-up Rob did with our new inflatable bed.

This is the view from our room

One of the most difficult things about having a child in the hospital is actually keeping up with the normal life stuff that doesn't stop for illness - like work, school, and running the household. Just today I dropped Mark off at school, went inside the school to complete re-enrollment for next school year, took Gantt to the doctor (he has pinkeye as well as an ear infection), got his prescriptions filled, went to the insurance company to get more papers needed for school re-enrollment, took Gantt home and got him settled with the sitter, and went to the new house to meet with the designer and the tile people.

Gantt sick with pinkeye and ear infection

After that I drove out to the hospital to relieve Rob so he could "book it" back to school and watch Mark do his special part at chapel today! He then continued on with the childcare and the homework, and the feeding of dinner, and the packing of backpacks and lunches, and putting the kids to bed. We have to tag-team everything.

However, we are so grateful that our home and business are so close to the hospital - especially with us not knowing when we moved here that we would be needing this hospital so often. It takes about 45 minutes to an hour, but there are plenty of families here that live hours and hours away and don't have the luxury of switching off very often or getting to see the kids at home every other day or so. We carefully remember to count our many blessings - including our parents who come up often to help us. Thank you for all your kind words of encouragement and all the prayers going up for Brett. We are grateful for every one!

Hospitalization #12 - Day 1

After stopping antibiotics on Monday, we didn't even make it until our scheduled appointment today at 1:00. This morning Brett woke up with a slight fever, and by 9:00 it was at 101.5. I went ahead and contacted Brett's doctor, and used what I have named "call ahead bedding" (kind of like "call ahead seating"at restaurants!) They had a bed ready right away, so we were able to bypass clinic as well as the emergency room.

When we were admitted, Brett got all the usual tests - blood from his port, peripheral blood from his arm, a viral panel, weight, and 2 rectal temps. The viral swab (which is very uncomfortable) had to be done twice because it was spilled. He felt worse as the afternoon went on, and tonight his temperature reached 103. As soon as the blood culture was taken he was put back on IV antibiotics, so he ought to be feeling better in the next 24 hours. Tomorrow he will probably get another echocardiogram on his heart to check for "vegetation" - settling of the staph infection on his heart. Once the blood cultures show something definitive, the docs will begin discussing a treatment plan.