A Rough Night And An Even Worse Morning

Parker came out of the cath lab safe and sound. After being wheeled into recovery Dr. Day gave us an overview of the testing results.

Parker’s first Heart Cath showed his pressures at 117, with medications not showing much improvement.

Normal is 25 and under.

Yesterday’s results showed that his baseline pressures (without meds) to be 58. Twice normal.

With meds they were able to bring down his pressures to 38.

Normal is 25 and under.

Dr. Day was disappointed that Parker’s pressures weren’t lower. His last echo showed no signs of raised pressures.

Unfortunately Parker’s crit was way low yesterday and is BNP elevated. If I would have known that beforehand I would have held off on this cath until his crit and BNP looked better.

Dr. Day did tell us that after Parker’s first cath it was believed…or more like expected….. that Parker would die. Parker can live with these new pressures, but not without meds and oxygen.

Right before we were discharged, Dr. Day came up to talk with us again. He told us that after crunching some numbers he was feeling confident that Parker’s pressures would go down as he grew and his airways opened up more. He said that he wouldn’t say that he expected it, because in this business he no longer expects anything, but he was confident and optimistic.

I like confident and optimistic.

And while we may not have received the BEST of news, we did received better news than before……which is good. Cutting his baseline pressures in half is a good thing.

I’m just greedy. I want NORMAL pressures. No meds. No oxygen.

Dr. Day gave us the go ahead to have Parker’s reconstructive bowel surgeries performed. These surgeries will come with higher risk because of the still elevated pressures.

But because Parker’s blood has a clotting factor that makes his blood thicker and this could be playing into his elevated PH pressures, this issue needs to be addressed. But because it is treated with blood thinners, it can’t be addressed until Parker is no longer bleeding from his stomas. And the stoma bleeding will only be corrected with these next two surgeries.

Have I totally confused you yet?

We brought Parker home, hooked him up to all of his machines and were quite dismayed to see that he was only satting in the low 80′s while on NINE liters via his trach mask.

Slight panic attack.

20 minutes later we officially upgraded that panic attack to MAJOR status.

Fortunately Reed was able to get Parker on his vent and after a bit his sats took mercy on us and settled themselves into near normal values.

This morning Parker has been extremely agitated, frustrated and doesn’t quite know which end is up. This is to be expected because of the meds they used to keep him still after his cath.

His Mom is feeling a bit of the same way. Alas, his Mom has no meds to blame for her disposition.

While I am absolutely thankful for the progress yesterdays values showed, I had secretly harbored hopes of Parker and I being able to re-enter the real world. Being house bound 24/7 can play with a girl’s mindset after awhile.

And it ain’t pretty.

I worry that Parker’s lifetime experience base is being built solely between the four walls of our home. But with his baseline pressures still elevated we will need to continue our ever vigilant (read: can’t go anywhere) watch over his health.

But this kid is worth it.

I’ll admit I’ve been in a bit of a funk lately. Waking up to newly multiplied piles of laundry and a house that could yet again use a major overhaul didn’t help much. I would so love to have the Merry Maids ring my doorbell today, followed by a giant delivery of healthy WW friendly dinners for the next month.

Since we know that isn’t going to happen I’d best take advantage of Parker finally collapsing from sheer exhaustion and get a few things going around here.

Just as soon as I share a few pictures from yesterday. Because, as you know, everything’s better with pictures.

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Proof that I really do belong to Parker.

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One VERY growly camper. Come closer at your own risk.

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Still not real thrilled to be here.

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A little more mellow now that the drugs are on board.

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Totally exhausted after a morning of thrashing and agitation. He zonked out right there and I didn’t dare move him for fear of him waking up.

If you don’t see me updating for a bit, worry not. I’ve got lots of loving and snuggling to do on my littlest of guys.

Along with that mountain of laundry I mentioned earlier. Cause, you know, the fun never ends around here.

About Tammy and Parker

Special Needs Blogger, and homeschooling Mom, heavily involved in advocacy for all kids with special needs in Utah.

Comments

  1. That is a lot of information you received, some of it was at least more positive. Still thinking of you and saying many prayers. Parker is such a beautiful, sweet little boy.

  2. Wish I was there… I would scrub floors, wash laundry, scour bathrooms, you know, all the stuff I don’t do in my own home ;)
    Parker is one cute kid! You will both be in my prayers…

  3. So glad to hear from you; I was worrying that no news was bad news. It seems like you received guarded good news from the docs though.

    Sorry that Parker had such a rough night; hope he has a better day today. We’ll keep you in our prayers.

    Do you have a date for his bowel surgery?

  4. Kim & Katie says:

    So glad to see an update. I like the optimistic and confident report. Wish I could help in some way!

  5. Hugs friend. I like the optimistic & confident report too. Sorry for the scare last night, hopefully today is much better. Love, hugs, & prayers!

  6. Gosh, I wish it wasn’t a days drive to you. I’d come help with your laundry and cook you dinner :)

    It has to be overwhelming, Tammy. I know how I get when I’m put under quarantine around here and can’t get out. I go nuts after awhile. Those walls can close in.

    I’m praying for you dear friend. And Parker, and Reese.

    But, I’m glad to hear “optimistic and confident” Those are beautiful words. Truly beautiful.

  7. I’m praying for you guys!

  8. I’m coming in May. I hate cleaning my own house, but I love cleaning others. I’ll totally do your laundry. Maybe even bring in a meal or two. :)

  9. I wish i was there to help out as well. Keeping you and Parker(and the rest of your family) in my prayers.

  10. Optimistic. Confident. If he is, I will be too! And I so would like to help you scrub and do laundry.

    Hugs and hope Parky got his little paypal gift, and you can feel free to apply it to Merrymaids.

  11. WOW – so much to take in, though it seems there’s always so much to take in – your amazing, for all that you and your whole family goes though….I cant imagine being “home bound 24/7″ just after the winter of being inside most of the time I am dieing to get out!

    It seems there’s good news, which is good – though, I did not understand some of it – it seems that all in all it’s good news…

    Love you and ((((((BIG HUGS))))

  12. Keeping you in my prayers. My heart goes out to you Tammy. Sure wish there was SOMETHING I could do to help. Parker looks so handsome in his photos. One sweet boy!

  13. Tammy, I have been so worried!! I think I have checked your blog 100 times. WOW, so much to understand! I am happy that their were some positives. That is the most important thing. My heart is just breaking for you all, I cant even explain. The pictures are haertbreaking too. Poor baby has been through enough! I wish I could take this from him and give it to myself. You are all such an inspiration. I am so glad this test is over. I wish I could come to your house and do all of your laundry and clean for you. PLEASE snuggle that sweetie for me. He is forever in my heart, as are you!

    Much love,
    Amy

  14. I’m so with WIZ. I LOVE cleaning other people’s houses, but don’t like cleaning my home. If I was closer, I’d *so* be over there helping.
    Glad to hear the news was somewhat optimistic for Parker. :)
    (hugs)

  15. Rebecca says:

    I hope that the little bit of good news brings you some hope. I’m sorry that yesterday was SO awful – I hope that today brings something better.

  16. Aimee (Primary Pres.) says:

    Geez Louise you guys have been through the ringer…especially little Parker. He is such a trooper! We want you to know that we are all praying for you in our house. My little boys come up to the computer and ask about Parker all the time, they love his cute pictures and love to hear about how he is doing. Hope you get a little rest yourself today.
    Good luck!

    We love you!
    The Shuldbergs

  17. Hi Tammy … I’m glad there is some optimistic news. My, those pictures just melted my heart into a puddle. I’m praying for a good outcome. Hugs

  18. I love that first pic…..he looks like he is about ready to fight! And so happy to see your post. I’m not sure what all of that means but if you’re feeling good, we’re feeling good. And the prayers continue on. And if I could, I would come and clean for you! I don’t even know where you live……could be right around the corner!!

  19. Tammy, I’ve been thinking of Parker non stop. I’m really glad that the doc you think so highly of is using the terms confident and optimistic. Sounds like he believes in Parker too!! Returning to real life of laundry and meals after such stress is not easy. My prayers continue for all of you. Give some extra smooches to that brave hero of yours.

    Barb and Michael

  20. I laid awake last night, worrying about Parker’s test results. And the amusing part of it all is that I wouldn’t recognize you in real life if I tripped over you. But I would recognize sweet Parker.

  21. Sending many hugs your way. And, as always, prayers for dear Parker. I am glad that you got to hear some reassuring words. So you know, I am a neat freak and love to clean. When I am there visiting Pam (sometime soon, I hope), you can be sure that I will pop by to visit you as well…and clean your entire house. Love you.

  22. Well something is much better than nothing. I go nuts staying at home for a few weeks I could not imagine not having a reprieve. Hang in there!!!

  23. I’m happy there was enough good news to allow the needed surgeries to be done. I’m exhausted just reading all that you deal with day after day. {HUG}

    Please remember I love you guys, and pray pray pray for you all…emphasis on Parker. :)

    Love you all. Try to take care of yourself.

    P.S. Parker is the cutest even when he’s growly or passed out.

  24. I’d jump on the next plane too to scrub floors, clean and make healthy meals. I so wish I could. I’m happy Parker is home and praying he has a good day today.

    Keep the confidence and optimism!

    Michelle

  25. Thinking of you guys today. Thanks for the thoughts and prayers for us.

    It sounds like things are improving a bit, and that is good. I hope Parker is feeling better today and all of those meds are wearing off.

    We love you guys, and are thinking of you.

    ((HUGS))

    Pam and Rhett

  26. Terry(Noah's mom) says:

    Sending lots and lots of warm hugs to sweet Parker and to you as well. I continue to pray that more good news comes your way. Hugs & Kisses Terry & Noah

  27. I’m sorry you didn’t get the news you were hoping for, but glad to hear it was somewhat positive…praying the next 2 surgeries help with the ph numbers. Loved the pics of Parker; he’s adorable no matter what his mood!

  28. Parker and family, you have a beautiful spirit and faith. I know this isn’t easy for any of you. But how you handle things is a testiment to God. I’m saying a special little prayer for you tonight.

    Nell @ Casual Friday Everyday

  29. LeeJo says:

    You’re getting there, honey. It’s painfully slow, but you’re getting there. I cannot wait to see the post that you went out for a walk with Parker, that will be the best day ever!

  30. Oh my goodness, I didn’t think he could get any cuter and then there he goes. I love his pictures!

  31. Melissa says:

    That second to last picture, I just keep going back. Just looking in his eyes, it’s like I can see all he’s been through and how tough he is. I love that picture of him.

    We’re always thinking of you, always praying for you.

    Melissa (Garrett’s mommy)

  32. I am just a fellow mom also trying to navigate this rollercoaster of a ride with our little miracle Zoey Grace. I hope you don’t mind that I put a link on Zoey’s new blog for Parker. I have an incredible circle of prayer warriors that I KNOW will add Parker to their daily devotions. We may be strangers but we are joined at the heart because of our love for our amazing children. Parker is absolutely darling and so lucky to have a family who loves and adores him beyond words. Take care and we would be honored if you came to visit us over at littlewonders-heather.blogspot.com

  33. Where are your visiting teachers and your home teachers and the RS presidency, if ever there was someonw who could use some meals and some good old help around the house it would be your family! Can’t you call your RS president and ask for some help, I know people always love to help out but sometimes they are waiting to be asked! It’s what RS is all about.

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