Well today was a pretty eventful day for Greyson. We left the house around 9:20 (only about 5 minutes past when we planned on getting out of here!) and headed for Tacoma. We had an appointment to see the GI nurses (that’s gasterointestinal, not military in case you were confused) at 10:30am and then see the pulmonologist people at 11:00am. At 10:45 we asked the receptionist if we were going to have enough time to have Greyson’s g-tube granuloma treated (he still has a little left after his last treatment) before our 11 oclock appointment. She told us to go to the other Dr’s and come back when we were done to have his g-tube treated. So we went to the pulmonologist and saw a bunch of people. His nurse, his RT, the social worker (to make sure we are still socially acceptable, somehow we passed ha!) and his nutritionist. Basically the nutritionist upped his feeds a little and the pulmonolgist upped some of Greyson’s vent settings.
Now from a hospital setting that would be bad. In the hospital the goal is always to turn the vent down so the patient is doing more of the work themselves. With Greyson however the pulmonologist felt that we should turn it up some so he was getting more help, which would take a more of the work of breathing off of him. This way his lungs can rest more and he can devote more energy to simply growing (which includes growing lung tissue, which is obviously very important). He was pleased with Greyson’s progress although clearly his c02 levels (which were measured by an end tital monitor, not a blood gas so they were not super accurate) were still higher than he/we would like. So now he should have it a bit easier and we will see the pulmonologist again in a month. He did say that by summer we might be at a point where we could start taking him off the vent for periods of time, working to get to the point where he can be off the vent all day and only on it at night. He also treated some granuloma tissue that Greyson had growing out of his neck stoma.
When he was done they had the GI nurse come down from upstairs to the office we were in and treat his g-tube, and they had the lab lady come and draw his blood there too so we didn’t have to go anywhere.
What a day, but what good news to hear that as soon as another month you might be able to start having some time without the vent. He looks so cute on the changing table. I hope you all can get some sleep after having no nurse and the day you have had. I remember the first time you picked him up after getting the vent and how difficult it was and now you are taking him in the car and to the drs. and doing great.
Greyson is looking great and even though I heard he didn’t particularly like going to the drs. at least on the most part all was good news.
Lov you
Glad to hear that the “big” outing turned out ok. With all of the places it sounded like you were supposed to go God made sure they came to you! Very nice! Tell Greyson it would be OK if he did not feel like he needed to visit every public bathroom in every store/place to eat/sporting event/church/ where ever you go. For some reason ALL KIDS seem to think they are a great place to go and really they are disgusting!!!!! I am certain that when I had Jonathan and Liz with my two we had hit every bathroom in Nampa.
Love Ya,
Aunt Tam
Wow! What a day. Glad you made it to all the appointments and home again safely. I bet you all were tired when you got home. It is great to hear the doctor is giving you some kind of time line for Greyson to be off the vent. We will be praying that summer comes quickly. It looks like Greyson is really checking out his surroundings. That is wonderful. Love to you three…
Bob, Stacy and Greyson, I have been reading the blog at a dead run lately. It’s so fun to check in on you guys and see new pictures. We pray that Greyson will be off the vent this summer. You guys are doing a totally awesome job!! Greyson is so cute and Stacy the picture of him looking at his (date), boy could I see a resemblance to Mason Becki’s oldest. I’ll have to look for some pictures and send them to you. He looks like he’s really glad to be home. We know he is! I just pray that the Lord will hold you and Bob up and keep you healthy. It so wonderful you have such great friends and Church Family. That’s so special. Stacy Lynn…Have a wonderful MOTHERS DAY!!!! We love you.
Love Aunt Fran and Family
When I read the word “stoma”, I start thinking of botany class a few years ago, and then I had to consider what li’l Greyson would look like if he were all covered in dark green paint and leaves. I think it’d be a step up from those babies-in-the-flowers pictures. It’d be baby-as-the-flower picture.
Hope your neck stoma stays healthy. (:
You really had an eventful day and we’re all so greatful that you are doing so well.
We are all praying for your wellness and for mom and dad’s and that they get a little nursing assistance at night so they can get some rest.
We will check on you later.
Rest well and be well young Greyson.
Judy & KJ