The Roller Coaster

Well, I get to write this blog entry after visiting and staying the night at the hospital with Brooke, Peter, & Haddie Joy. :O) It was quite an experience. Vanderbilt is an amazing massive hospital with an equally large amazing staff, and it seems like most of them pop in and out throughout the day to check on Haddie Joy! Ha!

There are doctors from a range of specialties, nurses , care partners, case managers, different therapists, so on and so forth. They are all interested in different aspects of Haddie Joy’s care and Brooke and Peter try to take notes on what each person has said so that they can keep it all straight.

I have a whole new appreciation for what they’ve been going through for a week already. If I understood correctly, overall there are three main issues:

  1. Her airway is compressed.
  2. Severe reflux.
  3. Needs to gain weight.

The doctors (along with Brooke & Peter) are considering 2 or 3 different surgeries.

  1. Aortopexy – the thing where they bundle some arteries and attach them to her sternum so that they quit compressing her trachea. (at least it’s something like that)
  2. Nissen Procedure – they would wrap part of her stomach around the bottom of her esophagus and stitch it in place to keep the reflux from going up into her esophagus and causing trouble (or something like that)
  3. G-Tube/Mickey Tube/Button – Since Haddie Joy hasn’t been gaining weight like she should, this would be an option so that she wouldn’t have to wear the NG Tube which *could* accidentally be pulled out of her nose. This could be done at the same time as the Nissen thingie, but either procedure could be done independently as well if needed.

In the time I was there, they went from

  • getting the news that she really needed the Nissen procedure & G Tube because of the severity of her reflux
  • plans to send her home with the NG tube, and addressing surgical options later
  • being told that perhaps they could do the aortopexy during this stay, and then address the GI surgeries later
  • stop feeding her because the surgeon was going to try and work her in for surgery THAT very day (although everyone was unsure of what surgery)
  • and finally to – Surgery? What surgery? We didn’t have her scheduled for a surgery. We wouldn’t schedule a surgery without first making sure you want it.

Can you all imagine? That’s why I called this entry the roller coaster. It seems like things their days are full of twists and turns!

And through it all, Haddie just hangs in there with everyone: smiling quite a bit, only fussing when she’s hurting or hungry, and just soaking up all of the extra attention. She really is an extraordinarily snuggly, smiling, patient baby. It is a hoot trying to keep her propped up, not catch the NG cord on things, change her diaper, wipe her ever so thoroughly because of her killer diaper rash, only use sterile things, put the dirty things in the right spot, use the right creams, try not to make a mess of her bed, and keep an eye on if it’s time to change the milk in her feeding tube or hand her to Brooke for a feeding!

I kept thinking, “OK, this should NOT be this hard.” But honestly, it is. Brooke & Peter have their hands full, nevermind their brains full of all of these different options, and then their hearts too . . . with thanksgiving to God for giving them Haddie, for Him providing the opportunity to get such great care and expert opinions at Vanderbilt, and for all of your prayers, along with passion to help Haddie be comfortable, pain-free, and growing well, and the desire to be back at home with Shaylea too – all under one roof again.  It’s tough. Having a kid in the hospital for a week with a complicated condition is NOT for the faint of heart.

But who wouldn’t go to the moon and back for that sweet gift of Haddie Joy and her smiles? You can’t help but want what is best for her! Her little smiles just radiate love and joy.

The roller coaster might have Brooke & Peter a little woozy, but they’re hanging tough. They just keep asking questions, doing their research, and trying to keep everyone focused on Haddie Joy’s unique issues. They’re learning a lot (sometimes the hard way), but they are committed to advocating for Haddie’s best interests and following God’s leading to the best of their sleep-deprived ability. Ha!

Please pray that things will level out with Haddie’s feedings. Just because there is some amount of trial and error involved, they haven’t been able to see through any of the feeding plans for a full 24 hours yet. They really want/NEED to get that figured out.

Please pray that the doctors and nurses communicate effectively with each other (and Brooke & Peter) so that there isn’t so much confusion about which route to take.

Please pray for Haddie Joy to feel loved and comforted throughout all of these processes and for her to gain weight, for her reflux to improve, for less diarrhea so her diaper rash can heal, and for her to rest and stay safe from germs and the such at the hospital.

Pray for Brooke to stay healthy and continue doing a good job making milk for Haddie Joy! (She’s working SO hard at it.)

Pray for both she & Peter to get the rest they need, for them to be able to burn off the stress when needed, for them to be able to sometimes shut their brains off  and give themselves time to process the information as needed and keep things in perspective, for them to have the help they need, for them to have the best doctors doctors, nurses, and caregivers for Haddie Joy and to have a good relationship with them, and for God to just clearly lead them to the best decisions. They need wisdom, peace, faith and comfort during this difficult time.

Thanks for praying and loving them so much!
~Nancy

 

 

 

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2 Responses to The Roller Coaster

  1. Tina says:

    Oh my goodness. I am praying, Nancy. I feel for them so much. This is SO not an easy time for them right now. Anything I can do for them? Let me know please. I can keep Shaylea for a day if needed or something like that. I would love to go see them up there too. Please convey my love and prayers. Love u , Tina

  2. Rebecca Crisp says:

    Praying!!! God will see them through!!

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