Not Feeling So Well & Trip To PCMC

This change of temperatures has caught up to our house.  Gunnar had the croup stuff a little over a month ago, and it seems that that was the beginning of the ‘coughy coughs’ as we call it.  He got over the croup stuff but has had a ‘dry’ cough since and for the past week and a half, the darn head cold has run through the entire family, yes, including little Brinnlie.  I took the older three kids in the Saturday before Thanksgiving with runny noses (the gross green stuff), goopy eyes, and coughs.  With eye drops and cold medicine to relieve their symptoms while they fought it off, we tried to keep them away from their sister.  The Tuesday before Thanksgiving we got the call that Brinnlie’s synegis (RSV) shot came in so I took her that afternoon.  She did ok with it, but had a rough night that night…into Wednesday she seemed to be feeling better.  Come that night however, was a different story.  She was coughing and a little congested…Turkey Day morning, she had the ‘goop’ and yucky nose.  So, Trevor stayed home from festivities with Brinnlie and Broxton (who still had a cough and yucky slime running from his nose) while I took Gunnar and Marcie to have some time with the Jarrett's.  Later that night, we all headed to my parents for dinner…we all went because it was just us and my parents and uncle---not a big thing, but yummy food and fun company.

Friday I took Brinnlie right in.  Eye drops, an anti-biotic, and a weekend later, she’s doing well again.  Hopefully, we can have some better luck as we know we have the entire cold and flu season ahead still!  Trevor has sarcastically said he’s going to start looking for an apartment for me and Brinnlie to hide out in until spring :)  Some days I’d like to take that offer :)  So today, guess who’s not feeling well?---it’s caught up with Trevor and me.  So, we’re toughing it out with masks and relief meds the best we can, and I’m trying my best to get things disinfected and keep everything clean.  Brinnlie is going to be staying in one room, while the others are going to be forbidden to enter.  With a small house and cold outside, it will make for a long winter, but it’s the only thing we can do besides the apartment thing at this time :)

Now our trip to PCMC---Brinnlie had a follow-up appointment with cardiology.  I have to tell Tina though, that I totally get what you said earlier this year after you had brought Noah home, but had to come to PCMC for Ryder, the anxious, not so pleasant feeling as you got closer to the hospital.  At that time of you telling me, I remember thinking that it was kind of silly; all was well with your baby and he was with you, etc.  I feel bad for thinking that now---sorry!  A couple weeks ago I had to come to the PCMC pharmacy to get Brinnlie’s Viagra re-filled and as I reached a certain spot rounding the hill to the hospital, those feelings of anxiety, nervousness, and uncertainty entered my being.  Logically I knew I was only there for the medicine, Brinnlie was home doing well; my body had become conditioned to those feelings after making that trip for so long.  I tell you, I hate that feeling and the memories and emotions that it brings.  After getting home that day, I told Trevor and he kind of laughed it off and said that I just felt that way because that’s what Tina had said happens to her.  Well, yesterday he got to taste first hand.  Although at a different place as we turned up the hill, sure enough, he turned to me and said, “There it is.”  I had no clue what he meant, but as he took in a deep breath and let it out slowly, I knew.  It’s crazy---Pavlov and his dogs come to mind :)

Anyway, the results:  Brinnlie’s chest x-ray showed that her heart is enlarged, a symptom of PH still.  EKG findings support it.  However, it’s very mild.  The Dr. was very encouraged that she was able to hold her O2 sats off the oxygen and that we’ve been turning her down to room air at times when she sleeps.  So, he said to turn her to 1/4 liter at night (let her sat high) and then during the day, she can start to be off at times.  The best treatment for PH is oxygen supply, so giving her high at night will relax her vessels enough that the times during the day, they'll be able to maintain the right pressure.  He was confident that she is at the point of transitioning off the oxygen completely, but with what time of year it is, he wants her to have that supplement when she needs it as well as precautionary for the inevitable sickness that will be at our house through the winter.  He was also encouraged that she’s taking full feeding through the day, only needing NG tube at night.  He said she didn’t need volume restrictions on her eating and that we can work it out with the pediatrician in transitioning her to ad-lib eating.  So, hopefully, no more NG tube!  We’ll have to see how she does as long as she eats and grows.  We can also take her from 4 times a day to 3 times a day on her Viagra.  Small steps!  We’ll follow-up again in February.

We also made the walk upstairs to the NICU to visit.  We knew Debbie from ot/pt would be there, and hoped for other familiar faces too.  One of her nurses Kerry came by and it was fun to see Brinnlie’s grin as they talked and reminisced to her.  We’re so very thankful for everyone that cared for Brinnlie and to let them see where see is and how she’s grown over the past weeks since being home, is wonderful.  We’re sorry we missed seeing Laurie and Sue---hopefully next time!

Oh, and I can’t forget to shout out a CONGRATULATIONS to Cameron and Dailee---Happy Engagement!