Sorry for the delay in posting. Here's an update for the week.
The GOOD
Ry has been eating great, she looks great and she's smiling! For the first time in many months, Ry is actually smiling, even giggling. I have missed that little chuckle so badly. It's something that Gilly and I cherished so much prior to our diagnosis nearly a year ago, but it is even sweeter now than before. Oh how I love to see her happy.
Ry is also taking all her meds by mouth except for two vitamins that we're trying to adjust to her liking. This means that we can get her feeding tube out real soon! I'm so ready to shed it and so proud of Ry for taking her meds. She is currently on 19 different medications taken at different times throughout each day. Some of them are administered up to four times per day. And she takes each one like such a big girl. I'm so proud of her!
The BAD
All week long we've been battling with Rylynn's left lung. It is collapsed and just does not want to come back around. She clinically seems pretty good even though she's still on 4L of oxygen. I guess she's lived her whole life with only half of her heart, she says only one lung is a piece of cake! In reality though, this could lead to problems (infection, pneumonia, etc.) if we can't get it up soon. So after days of respiratory therapy she made no progress and on Tuesday we headed back to the OR to be Bronced. During this procedure, Ry was intubated and then scoped. They were able to find blocked airways and pull out mucous plugs. We were glad they found something and hoped this would solve our problem. However, despite the procedure we saw no improvement what-so-ever. So we stepped up our respiratory therapy as much as possible. This includes using two different positive pressure breathing devices, alternating three different aerosol medications, and using a sound frequency machine EVERY THREE hours. I hate it. It is miserable and Ry cries, but she still knows she has to do it. Each treatment takes at least 30 minutes. It is a lot. And after a full week of this, today was the first day to see a slight improvement on her Xray. I was thrilled and texted Gilly right away. I hope we can continue in the right direction. She has to continue to get strong knowing she can't really rely on her strained or completely severed diaphragm (from so many open heart procedures). But here's where the ugly comes in. Just as we were making progress...
The UGLY
Today Ry woke up with an upset tummy, an awful headache and a fever :(
Even with tylenol, her fever has been lingering around 100. She has been resting most of the day because every time she wakes she cries that her head hurts. So now this means we've missed two breathing treatments and she hasn't been up working her muscles either. I sure hope this doesn't mean we'll be taking a huge leap back. And I hope this isn't anything major. Because her immune system is nearly non-existant post transplant, even something small could really be rough for her. Please pray she gets through this bug quickly. I want to see those smiles again.
Thanks for your patience as I try to get back to blogging more regularly. It just seems that there is such little time for it and I don't have the energy at bed time. Check back with us again soon!
9 comments:
Our thoughts and prayers are always with y'all.
The Hawkins
Don't ever apologize about not being able to get to your blog. It is a real treat and a blessing, but everyone understands how busy and stressed you all are and know not to expect it!
We will say prayers for you big time! Sorry Rylynn is having such a tough time with something "relatively minor" like a bug and the collapsed lung! Big prayers going up again! She is such an amazing trooper. I can't believe all she has been through these past months. Please, Lord, let our little Rylynn start her healing so she can get on the road to living outside the hospital! Thank you, God, for hearing our prayers.
What a blessing to hear those giggles. We truly cherish every giggle that our daughter gives us and know just how special and GOOD they make a momma feel. :).
It is great to hear some positive progress on her little lung, even if it's slow and little by little. Ry has overcome so much - she will get through this too. God is on her team and nothing is impossible for Him.
We will be praying extra hard that God will cure her of this little bug quickly and safely. you guys are in my thoughts and prayers-I know it must be hard not to worry constantly about Ry. I pray that God will give you peace and comfort and that you will continue to trust in Him to carry y'all through this.
Prayers for some restful sleep tonight and through the weekend. Maybe that's all Ry needs to kick this little bug's hiney!
Praying. Praying. Praying.
So glad that she had a good week, hoping she gets over
the bug soon. Reese had the same thing this weekend, I can't imagine how much harder it is for poor Rylynn. She's such a trooper, that is awesome that she's taking all her meds orally. Go Ry!!!! Thanks for the update. We're still praying for her.
We haven't stop our prayers. I will ask prayer warrior friends to kick it up a notch immediately. We know this road has been long, windy, u-turns intersected the course and a good turn-around. She is on the right path and just remember kids can get so sick and feverish and within a short time have it disappear or subside.
Thanks for the posting. Prayers continue for our Ry and her family.
God is good, He’s been there for little Ry all this time and He will allow for that fever to go away, for her little left lung to built strength and for her to push forward favorably in her recovery. GOD is good, ALL the time! Will continue praying!!
jerry and i continue to pray for Rylann and both of you. We are praying for Rylann to get stronger. Know that ya'll are covered in prayer, xxxooo, kathy
I gain so much perspective reading your blog. I was down in the dumps becuase my 1 year old has been sick with a mystery rash and then passed it on to me. We saw 4 different drs. trying to diagnose and a week and a half off of missed work. As soon as we both got better he has another different mystery rash. I was thinking "can't we get a break". Then I considered how this is daily life for you guys and on a much more serious, intense scale. I am so gratefull that you share your experiences with us and let us all recognize the "small" vs "big" stuff. I hope Rylynn can get that lung to cooperate and she is feeling better soon.
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