Wednesday, July 22, 2015

Day 7... staying positive

I've started to update the blog many times over the past 3 days but Teag has needed a lot of help/care...Every free minute we have, we're taking turns getting food, showering or trying to squeeze in a few moments of sleep on our little bed/couch. Here's the update from yesterday and today!

The last few days have again been filled with ups and downs. This recovery is proving to be very slow and steady, but we're thankful to be moving in the right direction! Teag has moments where she smiles and seems a bit like her old self, and then moments (or hours) of extreme pain, nausea and shakiness. We're in a holding pattern until her little digestive system starts moving and the nurses/Dr.'s have given her just about every med they can to help the process with little results. I'm  hoping for some relief for her before they want to take more drastic measures...

She still needs Oxycodone for pain every 8 hours or so and that's not helping the process...Sometimes her pain is bad before we reach the 8 hours and it takes 1-2 hours to get her meds, have them work and get her comfy. She still hasn't eaten much at all because her poor little body is so full from not going to the bathroom... but not eating makes her sick from her meds..

Teag's night nurse from the weekend decorated a wagon in full princess style to use as a reward for making one full lap around our hospital floor walking. This is a pretty good distance walk and a big goal for Teag to work towards! Tuesday morning after she ate a few bites and took her pain meds, we decided to go for it and she made it!! Teag asked Trent to wear her princess wig in the hallway as another prize for making the big walk. He's the best dad ever, and wore that wig proud all around our wagon ride through the many crowds of Dr.'s in the hallway doing morning rounds. Teag's smile was priceless!

Tuesday afternoon Teag had a visit from Gavin and Bode (her brothers) who came with Grandma and Nana to play for a bit. She didn't feel good at all when they arrived so they went to the playroom and we helped Teag through her pain until she felt good enough for a wagon ride to the playroom to join them. She spent about 15 minutes in her wagon in the playroom watching the boys play on the playground and picking out a few dvds and a board game to take back to her room! It was good for all the kids to be together again for the first time in a week. I cried holding Bode- it felt so good to love on him after he was so sick without me and gone longer than he's ever been from me. They're planning another visit on Thursday!

Tuesday night went fairly well except for a few hours around 11pm when Teag's pain got out of control for a bit. Trying to comfort her and stay as quiet as possible for our roommate one curtain away was tricky. Then she got a few hours of sleep from 12am-4am before we had to wheel her down for xrays...

Today has been full of hard things for Teag to endure but nothing seems to break her sweet spirit. She asks us after something painful/hard passes if she 'did good' and if we're proud of her. We smile and tell her that she's the bravest girl we know! Seriously, she's had things done to her that I can't even imagine going through and she still smiles when it's over. Sweet girl...
The Dr.'s decided that another one of her chest tubes needed to come out today so that she can breath better and increase her oxygen sats. None of her tubes have really drained that much at all and she would have them all out except she's not eating enough yet for them to know if the output will increase. They also scheduled an enema for her (horrible) to help with her digestive issues from all the anesthesia and pain meds. This was a last resort after we've tried many many things this week and I was so sad for her... We started by giving her pain meds for the tube removal (oxycodone and a touch of versed) and then planned on doing the enema right after so she'd be in less pain. Around 2:30 her left chest tube was pulled bedside and again she suffers so sweetly. We held her while they did the procedure and she handled better than I would have. It's very painful but thankfully over quick and we were all glad to see another tube gone! Now she just has the tube on her right side. The nurse helped us with the next 'digestive' procedure shortly after and again Teag was a champ. We're praying for some relief in the next few hours from that.

After all of that was done, Teag had a few visitors that made her cheer right up! Her 'heart buddy' Maddie came with her mom and baby brother, and also another heart buddy's mom Jesse came to say hi. Visits really lift Teag's spirit and she was happy for some new faces and a change in our daily routine. We didn't have long to visit because Teag needed an echo to check heart function and an xray to make sure her chest tube removal didn't cause any issues/air pockets. We came back from that and Teag felt good enough to walk a lap around the hospital floor and ride the little tricycle 2 more laps after that! She's feeling much better having another tube out and we took advantage of the pain meds still working- squeezing in lots of movement.

Her oxygen sats are still very concerning now a week out from surgery and the Dr.'s would have liked to see her off of oxygen by now.. They came and spoke to us about some possibilities which include minor things like just needing to clear her digestive system so she can breath a bit better and major things like something wrong with her surgery connections, etc.. Hearing this is terrifying and we're really praying that the echo she had earlier looks normal. I can't bear the thought of more procedures/surgery for her. We'll know the results in the morning...

We're hoping for a restful night and at this point have no roommate! Fingers crossed for a quiet and pain free night! We are still optimistic and happy with how Teag is holding up. She's looking forward to more visitors tomorrow and a new day ahead. :)

Pics from the last few days:

Heading down to the playroom for the first time in her wagon to meet her brothers.

 How sweet is this brother/sister hug? They've missed each other so much!
 Here's our little champ moving much better yesterday after a bit of oxycodone. :)
 Here's Teag after she finally made the long walk around the hospital floor and finally got to sit in her princess wagon!
 A visit from her brothers brought a few smiles!
 Her ride to the playroom in the wagon!
 Made it to the playroom playground to find her brothers. Fresh air was good for everyone!
 Time with Grandma
 Bode and Nana chatting on our couch/bed..
 Trying out the tricycle! She loves being able to sit down and peddle around the halls!
 Getting tired from riding the long hall...
 A visit from Katie, Maddie and baby Luke.
 Mom and Teag with Luke, Maddie, Katie and Jesse!
 Sweet heart buddies!
 Child life brought Teag an ipad to play with loaded with really fun apps for being so brave! She's having a tea party with Elsa and Fuzzy on her Tea Party App!
Here's Dad fulfilling his end of the deal, wearing the princess wig in the hall for her hard work!


mygrandmalucy said...

Trent looks so dreamy in his new curly locks!! Mmwhahaha :) Praying every day for you guys and my heart kinda breaks a little when I hear about the pains she has to endure each day. May Our Father uplift you, Susie-- moment by moment, that you feel His presence in a very tangible way.

Tina Hayden said...

So wonderful for the update and to see Sweet Teag's beautiful smile! Praying like crazy for things to settle down and the pain to go away~ Hugs to you all, and a restful night. <3

Anonymous said...

Praying for good test results in the am and for pain relief, hoping each day is better than the last. Good to see all the pics thanks. All of Teagans pain just makes me want to cry, but I know she has the best mommie and daddy there to helpherthough this!!!
Love Aunt Karen

Sallie Bayly said...

SO glad you got a picture of Trent in the wig! And Cayle too! And glad you are all keeping a sense of humor through all of this. I can't imagine how hard it is.
Keeping you all in our thoughts and prayers!!
Sallie & Tucker

Anonymous said...

Dear Maxwells, My heart goes out to all of you as you stand by to support your precious daughter/granddaughter. I can only imagine how you feel. Special prayers that the enema will flush things loose.

"His eye is on the sparrow and I know he watches me (you)."

Love, Marcia

Anonymous said...

I always knew there was an 'inner blonde" in Trent. See, Trent, blondes DO have more fun!!
This Twisp blonde hangs on every word posted and weeps with, laughs with, hopes with, and believes and prays with each of you. So loved, she is SO loved!!
ALL of you are in my heart and prayers moment by moment. Thanks for the great updates!
Hugs all around,