Joey had another sedated procedure today, he went to the cath lab. The breathing tube went back in, and will stay in over the weekend. Originally he was going to spend the weekend just “being a baby” (per Dr Marx), but based on his performance last night and this morning there are just too many unknowns.

The biggest concern is why his sats are dropping so low. During rounds today I laughed when the gave his range… remember when I said that you and I run at 98 to 100? His range since he has been admitted has been 9 to 81 – WOW, right? It’s been all over the place. At some point I may post about last night, sleeping in his room, what that experience was when he hit 9%.

The cath will give them some detail that the echo and MRI could not. (The echo is like the forest, the MRI the trees, and the cath the ecosystem). I’m not yet sure when the team will be reviewing the results, but it will give us, Dr. Marx, and the surgeon a great idea as to how to approach surgery on Monday. Before the cath this morning, all we had were a bunch of “ideas”, some stories as to how things would go.

So many crazy things have been happening, I want to share them all – but am instead spending time with Chris and Joey. Chris and I do “hospital” really well together, there has been a lot of laughing, a lot of talking, a lot of loving.

For those of you who have been checking in on us, I’ve been focused on staying present… answering the “how is Joey” or “how are you” questions is difficult. It literally changes with each moment – to give a hard answer is impossible. We came, with most people involved assuming that they knew what Joey needs. He is (again) doing an amazing job of letting EVERYone know that he needs a closer look at every level. My instruction of providing extra love with each needle stick and procedure is being responded to with acceptance and understanding. I overheard the Attending say that the most important intervention they made last night was “mom”. The reverence for the connection that we share with our son is outstanding.

We go into the weekend without answers (is there really such a thing?), allowing Joey to rest. It will be interesting to see how this plays out and what the final consent form actually says they are going to do.


7 thoughts on “Changes

  1. Wow!!! Teary. Again ( not surprisingly) you amaze me. Im so glad they appreciate you and your input and theyre learning all they can about Joey and how best to help him. Great that you and Chris are coping well and so supportive of each other. Love that– “do hospital well”! Im sure youre seeing other examples as well. You two are a great team.

    1. Oh you are all doing such an awesome job. I am again in awe of all you are dealing with and how Joey is such a champion!! I can’t imagine the night when his sats dropped that low. Just reading that made my heart hurt so much and I don’t know the story. Sending love and healing energy. I love you!!!!!!!!XOXOXOXOX

  2. Wow. I can’t fathom what you are going through. I’m amazed by your courage, strength and love. Joey is so lucky to have you guys as parents. All my love is with you…

  3. I just started to follow this all last night and I am so overcome with the love you all have going through this process. I feel some neighborly guilt for not knowing sooner and reaching out to you. Please don’t hesitate to ask for anything from us. You are in my thoughts and I am sending positive energy your way. I will try to reach out when I see that you are home. I can clean, cook, babysit, mow, retrieve mail….anything you need! Baby Joey is truly as blessed to have you and Chris for his parents as you are to have him. Much love to all!

  4. You are doing awesome! Updating when it is time for updating the rest of us. Spending time with Chris and Joey… and riding the roller coaster. We’ve been praying for you guys, as well as the team caring for him. I know the fear/hope that comes with the unknowns. I pray you continue to find your strength when you need it most. So glad to hear you and Chris are supporting each other through this. We’ve been told by nurses, they see families split over these things. Support and Love is perfect for all of you. We pray for your marriage too, as this kind of stress can be so overwhelming. I’m sad but thankful that we have very similar situations. I would never wish this journey on anyone, but it is nice to know we can support each other through this. Love you!

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