If we had to sum up today with one word it would be, “playtime!”. Greyson was awake A LOT today and was very playful. I stayed the night with Stacy in Tacoma (we now live in different towns in case you didn’t know) and got to spend the day here with them. Today was supposed to be a very big day for a couple reasons, one of which unfortunately never materialized. So we’ll save that for another day. We think Greyson figured out that the wrist rattle was making noise when he moved his arm, because all day he has been swinging his arms around (and hitting himself in the face, which is really funny).
The other reason was because we were having this big care conference. Well we had it, but it wasn’t what we were expecting. Of course I’m not sure what we were expecting since we’ve never had one before, but this was not it. The one thing that did come out of it was planning a tentative date for discharge. While this is great, the one down side is this was just with the home ventilator supplier, so the date will not be certain until we have nursing lined up (pray for this as right now they don’t have any nurses lined up, the couple that they thought they had fell through) and the Dr. signs off on him going home. So we now have a couple dates, but I won’t release them as there are to many other factors to make them very concrete.
We did go shopping tonight and I was met face to face with the “real” cost of having a child. Today was the day it hit me that once Greyson comes home, insurance will no longer pay for all the “incidentals”. Things like diapers, wet wipes, and a host of other things that we simply grab when we need them, will soon be things we will have to pay for before we can grab them. Of course if this means he is home I am more than happy to pay for whatever he needs.
OK so here is our scary stories for the day. Last night Stacy and I did Greyson’s trach care as we do almost every night. No big deal we are getting pretty comfortable with it. He was pretty much going to sleep and we were watching him when he started to de-sat. He got down to the 70’s so I decided to bag him. We got him back up to 100 percent and Stacy suctioned him and all was well, but when we put him back on the vent down he went again. By this time the nurse and RT were in the room. They felt like we had it under control but helped us track down the problem. This took awhile but on a hunch the nurse finally took out the end tital c02 sensor. Once she did his volumes doubled (a good thing) and his stats went right back up. The sensor is new and it seems it had gotten clogged up and was not allowing him to breath correctly. So that was the first scary part of the night (actually it wasn’t that scary we simply did what we were supposed to do until the RT helped us solve the problem, he never turned blue so it was all good!) But there is more. We heard today that sometime last night (after we left to go to the parent appartment) the RT came into the room because she heard Greyson crying (because Greyson’ s trach is cuffed you shouldn’t hear him cry as that means he is not getting a good seal). Anyway she came in and Greyson was crying pretty loud, and when she looked she saw that his trach had come almost all the way out. The “cuff” was staring her in the face! Not good at all since the cuff should be down in his esophogus. She got a bit freaked out but got him all back together. This is why it is so important to ensure the trach ties are on tight!
Tonight when we did his trach care we took some extra precautions and wrapped the ties with duct tape, so I think it will be a safe night (ummmm I am assuming everyone knows I’m kidding here).
Very cute……so you got me all excited to deflate me like a balloon right? Im taking it that the “surprise” is the thing that didn’t happen right? Do you think Greyson pulled his own trach out? He seems to be interested always in pulling stuff out. 🙂 Glad to hear that he had such a good day and played with the both of you so much. Don’t worry about the nursing care….God has that all under control and he will make sure that you get the exact one you need! We will pray for that! Im so ready to come for a visit just to kiss those cheeks.
Hope you all have a great day today!
Love,
Tam
You guys are doing a wonderful job with Greyson’s care. I know it is scary and intimidating, but you have done so great!!! I look forward to the day we all read…..Greyson’s coming HOME!! That day will come soon enough. We will continue to pray for great nursing care to fall in to your laps. Have a great weekend and give Greyson extra hugs from his fan club.
Wow what a day. I guess it can be a good thing these things happened at the hospital so now you know what to look for if they happen when he gets home. Yes the cost of Greyson’s needs will be another matter once he gets home, but isn’t it great how God provides. We’ll be praying for the nursing situation to happen and fall into place. You two are certainly getting the education. That is a cute little rattle. Hope today is a good one.
Wow, after reading about your harrowing nite and little Greysons….Bob you still made me laugh. I was abit taken back when I read “Duck Tape.” You almost got the best of me with that one.
I was encouraged to hear the nurse heard Greyson crying. He’s getting to be a big boy. Sounds like you and Stacy are crossing each bridge when you get to it, you take it in stride and it sounds as if the two of you are completely unflapable( meaning you don’t panic) When our kids we’re growing up and we had an emergency I was always good in the trenches however; I would cry myself to sleep afterward.
God Bless you all three! Yes Bob kids are expensive but the payoff is
priceless!!!!!
You Guys are MUCH LOVED!
Aunt Fran
Bob, Stacy and Greyson,
I just wanted to say that there will be alot of trial and error! God will get you through this and you all will be good! Don’t listen to the negative as this is all new to the three of you and you all are going to be learning together! You are very committed parents and you are doing a great job! Things will be lined up and God is in control, He is making sure you all have the best care for Greyson and it will be awesome to see His work in the 3 of you! Yes raising children are expensive I have 6 myself have 1 left in pull ups but then the wants all change to more so enjoy these precious moments and give those little cheeks a kiss for me! I can’t wait to meet him but I have children and I would NEVER come see him until he is totally off everything so I have no chance to give him any other thing that could delay him coming home! God Bless you all!
What an adorable picture!
Dad would be so proud that you are thinking of duck tape! Remember it can work on anything, except the space shuttle. haha! You are too funny Bob! Keep your chin up and remember we all love you and are praying and thinking of all three of you all the time! Can’t wait to hear what that surprise was all about…….
Okay, as I read the duct tape part, I immediately wondered how you got it off. So, yes, for a b-r-i-e-f moment you got me.
We are glad to hear that even though the conference wasn’t what you expected, you at least had it and we agree that the right nurse(s) will come along and fit right into the best of all possible care for young Greyson.
And yes, the “little extras” do add up. Costco would be my suggestion, or perhaps a Shopco? And I’ll remember that when I get one of those really good $2 off coupons for Pampers, or? – to send it your way.
Keep up the good work – and to you all, rest well and be well.
Judy & Family
I can just picture him hitting himself in the face & trying to figure out what in the world is going on!! lol Babies are soooo funny – not to mention their parents!! Keep that sense of humor – you’ll be glad you did!