Happy Mother’s Day to all!
I had a pretty amazing Mother’s Day with the family, even though we were at the hospital pretty much the whole day. The day started with Bill cooking Chicken on a Raft for breakfast. Then Trevor helped fold and put away all the laundry. He is such a good helper!

I don’t know why I am such a mean mommy, I made Trevor eat peas.

He got in a nice long nap before we left for the hospital. His Oshkosh overalls are great, but maybe a little short in the legs.

Brendan had a nice morning too! He did 6hrs on Trilogy overnight and 6hrs today too, plus his hour of trach collar.

Brendan only makes crinkle nose when he thinks something is really funny. This time, it was Trevor that made him crinkle.

Trevor loves flying to see out the window in Brendan’s room, and Daddy loves the arm workout!

Don’t mind me, just eating my puppy

I smothered both boys with kisses today!

Brendan had a few big downers today too. He unfortunately swallows a lot of secretions and occasionally throws up a big ball of slime. This time, he brought up a wad so thick that his feeding tube got caught in it. A big loop of the tube came right out his mouth, it was very sad. So the tube had to be replaced.
He was also due for a trach change and Bill was due for training. Trach changes are really fast, but pretty stressfull. Daddy did a good job and helped him calm down quickly.

On top of the tube and the trach, every Sunday they have to peel the dressing off of his PICC line and replace it. He was exhausted when we left, but he handled it all so well!

Little Brendan amazes me all the time. He has a water filled cuff on his trach that fills his airway, but he still has found a way to make little sounds right past it! It is too cute!

It was another busy day!

We started with Trevor routine with added video chat. Aunt Shannon and Uncle Jon entertained him through tummy time and oatmeal/banana second breakfast.

It was too much for him.

While Bill spent the morning with his dad, we continued with Trevor day. He can’t skip a bath, especially with monkey towel!

Then we got the whole family packed up and went to see Brendan. He was very happy to see us, especially Trevor. He was downright silly again, giving me the full crinkle nose laugh face.

The boys had lots of play time, but then I held and rocked Brendan to get him through his afternoon medication challenges. Bill walked 1000 laps around the unit pushing Trevor in a stroller to keep him happy until he fell asleep too!

The reduction in the med definitely improved the situation but he still felt pretty crummy. They can’t just cut it out cold turkey so over the next few days, hopefully he will continue to improve.

I tried to get a close up of his adorable fuzzy chin. He is going to have to learn to walk and learn to shave at the same time! You can also see the trach under his vent-free collar. He did 5hrs of Trilogy today and almost 2 hours of trach collar, sleeping through half of the latter with beautiful calm breathing.

I don’t often get to hold both my baby boys at once!

We got a delicious dinner tonight with great company. Thank you very much Lisa, Emily and Lexus! Trevor had a great time with all of the attention and is sound asleep!

I ran around like a fool this morning, trying to get things done. I even went to Walmart and bought a fax machine. It is all Brendan’s fault, so much paperwork and faxing. Good thing we still have a landline.
I even went back to the doctor and got another round of antibiotics and an inhaler to help knock out this dumb cough that won’t go away.
I went to the office and started another term of medical leave of absence. Hopefully by the time this is up, Brendan will be home and stable and I can continue to help the family income. The current situation is not conducive to accomplishing any work.

By the time I got to the hospital, I had missed seeing Brendan get his EEG. I also missed the neurologist who must leave early on Fridays. The only thing the nurse knew was that the first report said “unremarkable”. Brendan was having a day much like the last few but we have made a discovery.

I could be way off base, but his nurse and I agree that he seems to be having an adverse reaction to his Sildenafil. Brendan was having a super happy afternoon, smiling so big I thought he was going to burst forth with a hearty laugh in spite of his trach. Then the nurse gave him this med at 3PM. Within 15 minutes, he started to get rosy red cheeks that soon led to a full flushed face.
An hour after the med he was not smiling anymore, he was fidgeting and not making eye contact. Within 2hrs, he was doing the full head turning, eyes rolled back, and crying. We had seen the pattern a bit yesterday and tried to prevent a full melt down by giving him tylenol once we noticed the flushed face. I was able to rock him to sleep tonight, and get him comfortable until he had his normal scheduled ativan which helped knock him out.

The doctor confirmed that the med could cause the flush and that it also gives some people severe vascular headaches. And, going back in record, the first day that I noticed the harsh head turning behavior was the day they increased his dose of this medication.

They are giving it to him to help dilate his pulmonary bed so that blood will flow in to his lungs more easily from his head. There was already a question about whether it was doing anything to help him, so they are going to wean it off and see if these meltdowns continue. He gets the drug at 9am , 3pm, and 9pm so it correlates to several behaviors I have noticed. It just does not explain the 5am issues. We will see what happens.

Smily Brendan starting to get flushed

So glad there is a rocking chair in his room now

Good night little Brendan

With all of my errands, Trevor got an entire day with Daddy! He made sure to make Daddy feel loved. Two minutes prior to a work phone call, Trevor dropped an epic poop. I guess the bananas that he got to try this morning with breakfast helped! There was no greenbean face today, he likes his bananas and oatmeal!

He was lawn supervisor today, sitting in the shade and watching Daddy pick up dog poop.

He is such a hard working good helper!

Who is imitating whom?