Here we are at the end of the second week! This was such a long day, the things that happened this morning seemed like a week ago.

We visited Trevor first today. He is making great improvements on eating. He has graduated from the slow flow bottle and is taking a regular one now. He was able to eat a full 60cc in one sitting several times, and while we were there, he took 45cc. He is looking great, it is just a matter of time for him to come home.

Brendan had an extremely busy day. Within 6-8hrs of its placement, his new PICC line got clotted. The catheter lines they have to use are so tiny, it does not take much to clog them up. So he had a special trip to the Interventional Radiology department in the old hospital building. They were able to use an ultrasound guide to achieve proper placement of a new line in his femoral artery so that they could use a larger catheter. The new line tunnels under the skin in his leg so that the entry place is away from his diaper.
It took a team of 5 people to move him down to the 1st floor and through what seemed like a mile long tunnel to get to where they did the procedure. We were able to walk with him to see the doctor and sign the consent and then we waited in his room. They got the new line in well and suspect that it will be fine now. He was slow to wake up from his anesthesia and they had to increase his ventilation until he started to come around.

Speaking of the ventilator.. the doctors this morning put him back on the Milrinone and decided that weaning from the ventilation was a better first step. When they turned everything off, he did have a bad drop in his oxygen profusion and his blood gas test was fairly bad so they set him back to minimal support. They will continue to try to wean him slowly.
We did get to finally meet the surgeon working on his case. After they discussed him this morning, they have decided that they do not want to rush in to the banding procedure. The surgeon believes that his lungs were not as weak or underdeveloped as they suspected when he was born. He really wants to work on getting him off the ventilation to see exactly what they are dealing with before they jump in to surgery that may or may not be necessary.
He feels like they still might be doing the banding by the end of the week, but surgery this afternoon had been discussed and he thinks that is a little hasty.

Lots of pictures today!

The pink forehead thing is back. It is one of several sensors that monitors renal function. And see that new patch on top his head? It is an IV! They’ve poked so many holes in him and he has pulled out so many lines that they had to put the IV in his scalp. I have had IV’s and blood draws in plenty of weird and painful places, but he has me beat!

This is Brendan’s private room. Can you find the baby in all that mess?

Here is the view from Brendan’s window

For contrast, here is the view from my room window. We are/were both on the 5th floor and yes, that is pigeon crap.

A group of volunteers were travelling the halls with a cart of complimentary coffee, tea, and hot chocolate.

Trevor says “Less Camera, More Food!”

His eyes roll back when he has had enough.

Here is Trevor’s bed. There is a very long counter in this room and about 6 babies lined up there. Trevor is lucky enough to be near a window, but it looks out over a liquor store and a laundromat.

I don’t know what to make of today. Every time a new shift starts and a new doctor comes in to check on Brendan, we get a different story. I know they are all going to have it out with their different opinions tomorrow and decide what the approach will be. But even then, the nurse tells us to expect constant changes in the plan depending on how he reacts each day.
We have heard that there are rumblings about surgery on Wednesday. We have heard that they could possibly extubate him to see how he does without the ventilator. One doctor said he may not need the surgery at all. I know that there are lots of unknowns and that he is going to receive the care that he needs. There are excellent doctors and staff taking care of him and he has been stable and comfortable while he waits.
What is certain right now, they set his ventilator to very minimal settings, so all day today, Brendan has been breathing on his own. In a few cases of forgetting to breathe, the machine kicked in and did it for him. He did very well though.
They turned off the Milrinone this afternoon. How his stats change when that medicine is out of his system will give them more info about how things are working. They upped his feedings to 10cc and plan to continue increasing as he can tolerate it. He is back up several ounces in weight and is looking much better to me. They did start him back on the Lasix, and will watch closely to see how he reacts this time. His lungs do require frequent suctioning.
I am very glad I have been writing all of this down, we have been asked about what and when things were done and have been able to pull up the blog on our phones faster than they could go search in the charts. We are doing everything we can to keep up with the daily changes to stay informed!

Trevor had another good day. He got fed a bit late this morning and was able to take 60cc (about 2oz) from his bottle. They have moved him to larger amounts at every 4hrs instead of every 3hrs. When he is more hungry and rested, he does better with the eating. This afternoon, he took 30cc from the bottle with me feeding him, and got the rest in the tube. I just like to see him make such progress daily.
He is a poop making machine, and even though he is still just a tad jaundiced, they expect that all the pooping will fix that right up soon.

Pictures!!

Brendan’s bedhead hair looked too cute in the sunlight

Brendan’s doggie friend is very useful for holding up the ventilator tubes, and laying the beanie baby in next to him is a great size reference!

Trevor tries to give himself bunny ears for the picture since his brother isn’t around to do it.

This is Trevor waking up from his nap, feeling hungry.

What a day!!

Brendan got moved to the Children’s Hospital this afternoon. It happened suddenly, the nurse called me to let me know that they were coming for him and they showed up while she was on the phone. I went to the hospital but missed him leaving by about 2 minutes. All of the babies from his pod got relocated so that whole area was empty for now. It looked really strange!!

So since I missed Brendan, I hung out and held Trevor for about an hour. He was a feisty troublemaker tonight. He dirtied 2 fresh diapers while I was trying to change him and actually cried in protest.
Then I think he wasted all of his energy making a fuss because he only would take 8cc of his bottle, even though he took 45cc this morning.
He played with the bottle and made lots of silly faces, including one that looks like a really funny smile. I know they are too young to smile on purpose, but he really seemed to know what he was doing! They have stopped giving him extra calories as he put on 2 ounces.

Bill and I grabbed some dinner and headed over to see Brendan’s new location. He got a helicopter ride to the new hospital (the whole 2 mile commute!!). The children’s hospital is a brand new building, just completed this summer. It is like a luxurious palace compared to the one we were in which was built in the 1950’s. Brendan has a large private room that puts my hospital room to shame. There is a 32in flat screen TV and a big private bathroom with a shower. He has a large window with a northern view that looks over the city and the mountains. We are allowed to stay there overnight, so the amenities won’t be wasted on a baby too young to notice.

He handled the relocation well and he is looking good. He has filled out a little more again and is back up a few ounces in weight. Monday morning there is the cardiologists’ conference and Brendan is going to be discussed. They will be talking about his condition and the best treatment plan.
After the conference, we will get a surgery date and plan. Until then, they will just keep him stable and let him get as much rest as possible.

Brendan’s equipment (I will need to bring the wide angle lens to fit it all in)

The nurses gave him some company, his own watch dog

This beanie baby looks pretty big!

He even got a souvenir hat from his flight