Today was the day we have been waiting for. After rescheduling and waiting and waiting. Hope finally had her swallow study.
Unfortunately, the study didn’t turn out as we had hoped. I’m trying to look at it positively. We haven’t gone backward. We actually have some more answers to her swallowing and breathing problems even if we didn’t see the progress I wanted to see.
I will endeavor to explain what we found out with non-medical terminology. From what I can decipher from the doctor’s handwriting and Google, it’s called oropharyngeal dysphagia. Basically, that just means she has a swallowing problem – which we already knew.
We were aware from her first swallow study back in May or June that she aspirates when she swallows – meaning that when she swallows, some food goes down her airway instead of her esophagus. What we have now learned is that in addition to that, much of what she swallows is also backing up into her nasal cavity. Almost nothing goes down her esophagus.
This explains her difficulty handling her own secretions and why we have to suction her so frequently.
She can have absolutely NOTHING by mouth. Not that she has been allowed to anyway, but even some of the things the Speech Therapist has used will have to be stopped for now. Aspiration puts her at high risk for pneumonia. We also don’t want to stress or damage the parts that are working properly.
We have a consult tomorrow with Pediatric Surgery to schedule a G-Tube placement. That basically means they will put a hole in the side of her stomach to insert her feeding tube rather than continuing to go down her nose. Continuing to put tubes down her nose and esophagus can potentially exacerbate the problem.
We will also be compressing her feeds – meaning she won’t be on a continuous feed anymore. Thankfully, that means one less thing she will be attached to all the time. She will only be hooked up to the feeding pump during feedings. As she gets bigger and we compress them more, it will free her up a little more…especially once she is fully weaned off of oxygen.
We do greatly appreciate the prayers that went up and continue to go up. I know I was praying through most of the test, but as I told our nurse when we left, God had other plans. I trust Him and look for the blessings in all of this.
Hope also underwent an ultrasound this past Tuesday for her hips. That was a great report! Her hips are NOT displaced as suspected, nor does she need any tendons snipped. The only thing found was that one leg is less developed than the other, but that has been apparent from day one just by looking at them. The orthopedist was quite pleased with those results. As for the prognosis, we will just have to let her grow and develop to find out just what her little legs can do. At her age, it is difficult to measure her ability since she cannot respond to commands yet. Right now, I’m believing she will walk one day. Of course, as our enthusiastic Physical Therapist will tell you, she WILL walk. We won’t accept can’t!
The praise in today’s outcome is that I am not crushed. Yes, I was looking forward to having a big cheering party in the radiology department if she had passed, but that’s okay. If I have learned anything in the last year, it’s not to get discouraged. God is still God. This is just a season, but even if nothing ever changed, I’d still be happy and blessed with this little girl.
Our other 2 princesses are joyfully spending a couple days with their grandparents, and I got to spend lots of time with Hope today…so I call it a good day.
I don’t get to talk about my other two blessings much, so I just wanted to share what my oldest said yesterday. “Mommy, when I grow up, and Joy and Hope…we can go walk in the forest (behind our house) and see deer….and I’ll hold Hope’s hand in case she gets scared.”
I can’t help but brag on this 3 year old, tender, sweetheart of a girl. Grace knows just how to melt my heart. I cannot begin to tell the joy it gives me to see the love the 2 oldest have for each other and for their little sister. I can’t wait to see the relationship that develops between these 3 special sisters. It will be a beautiful thing to watch.
There is surely a future hope for you, and your hope will not be cut off. ~ Proverbs 23:18
As you know, we consider blessed those who have persevered. You have heard of Job’s perseverance and have seen what the Lord finally brought about.
The Lord is full of compassion and mercy. ~ James 5:11
Find rest, O my soul, in God alone; my hope comes from him. He alone is my rock and my salvation; he is my fortress, I will not be shaken. My salvation and my honor depend on God; he is my mighty rock, my refuge. Trust in him at all times, O people; pour out your hearts to him, for God is our refuge. ~ Psalm 62:5-8