It was a learning day again at the hospital today. The home care team delivered his oxygen bottle that we will use to transport Brendan. We also received our portable pulse oximeter and the enteral feeding pump and supplies. We will have to call the service when we get him home to arrange for the delivery of the O2 concentrator.
I had to remove and replace the feeding tube in Brendan, it is really no fun to upset him so much just so that I can learn, but it went well and now I am confident that I can take care of it at home.
Brendan has to pass the same car seat test that Trevor did – one and a half hours of sitting in the car seat without losing oxygen saturations or having other breathing problems. He is bigger than when Trevor came home so we don’t expect any difficulty. We had the carseat there today but ran out of time so we will do that test tomorrow.
He will have his hearing screening tomorrow as well.
The last thing that we have to do before he is allowed to leave is “24 hour nesting”. At least one of us must stay with Brendan for 24 hrs and take care of all of his needs and medications under the nurse supervision. It is our final test to be sure that we are ready to care for him at home. Since Trevor is not allowed to stay overnight, we will all be there during the day and then I will sleep over with him while Bill takes Trevor home.
If everything goes well, Monday could be homecoming day!

Brendan received more gifts today: A Chocolate scented sparkly moose, two cute little outfits (size 6 months – wow do they look huge right now!!), a small crocheted receiving blanket and a knitted hat.

It is funny that Trevor is wearing the same thing as in the last pictures of the boys together. His cute-o-saurus outfit is too adorable and this may be the last wear he gets out of it. He is growing too fast! Brendan may be able to wear it at least once, we hope!

There is a size difference, but Brendan will catch up!

Is it a major fashion faux pas to combine socks with trucks and a shirt with dinosaurs? Is it like polka dots and plaid?

Brendan truly enjoys being held and has so little of it so far. That is about to change!

We had a busy day today. It was lots of training time for us with Brendan – meeting lots more new people, getting briefed on all of the resources that we will have available to us and when to use them.
I worked with the ostomy care nurse today and helped to change out Brendan’s bag. Unfortunately, she was not very prepared and made quite a mess of everything – leading to having to change his PICC line dressing and his entire bed and nest setup because of poop everywhere. I did learn everything I needed and in a way, her fumbling made me realize that I will do a better job of it at home and that even if I am not good at it, it can’t be as bad as all this was.
Brendan was pretty upset, but a little sucrose on his pacifier goes a long way to calm him down.
We both held him for a while and gave him a rest from all of the fussing and mess with the wires.
During his time with me, we moved the cannula off of his nose and he spent 35 minutes breathing entirely on his own. He still desats while crying and while too active, but they believe that he recovers quickly and may be able to get off of the oxygen before coming home. We would still have a tank and cannula to give him if things change.
Even though he will go home with a pulse-ox machine to keep track of how he is doing, visually his color and behavior will tell us more about his condition than the machine.

The pacer wires were finally removed today!! Look at all that skin showing!

The only thing left is that PICC line in his leg, and that will be removed just before leaving for home. Everything else that is attached is a monitor or sensor.

Trevor was pretty wiped out after a day at the hospital. But after his late evening feeding, he seems to always have a nice long stretch of awake time.

Here’s a baby in a baggie! Arms going fast!
This baby bag was a gift at my office shower, and at the time I thought it was HUGE. It sure did not take long for him to grow in to it, and his little toes are hanging out the bottom.

Doesn’t this pose look dramatic?

Brendan continues to recover from his procedure and he was in his swing when we arrived at the hospital. He seemed a bit sore and irritable and his numbers reflected it. Bill and I both sat and held him for quite a while and that seemed to help him relax.

He is stable enough that they are moving forward with discharge training, he could come home this weekend, or at the latest on Monday. We have a lot of preparations to do! He will continue to be on oxygen, and he will require his pulse-ox meter to continue to monitor him. He will have his feeding tube in and will still get most of his milk that way. We also need to learn how to care for his ostomy.
He will have medications that can be administered through the feeding tube.

We will have home care nurse visits 2x a week and visits from Physical, Occupational, and Speech Therapists, both from the hospital and the state early intervention program. We will have a 24×7 support system and probably 24×7 lack of sleep worrying about him at first! At least we will not have to make the 20 mile commute each day while sleep deprived.

Me and the boys

Trevor borrows Brendan’s swing. We are definitely going to have to buy one like this, he really likes it. It is different enough from the big one we have at home, it will be a nice compliment.