Summer Struggles & Decisions

We have spent a bit more time at the hospital this week than we had planned on. Faith has had a lingering cough for about 2 months now. For the most part, she has always struggled with clearing her throat and managing her own saliva. However, she was doing much better for awhile after we started her on Robinul (it helps to dry things up and reduce saliva). Recently though, she seems to be really struggling again and is really struggling to clear her throat at times. Lots of gagging, choking, turning bright red, breathing concerns, etc. She has seen several doctors the past few months so I always mention it to the doctors and make sure they listen to her really well to make sure she hasn’t aspirated and gotten something into her lungs. All the doctors have felt that she just sounded congested and “nasally” and didn’t have any concerns about her lungs. This past weekend she had some breathing issues which we resolved pretty quickly by repositioning her and adjusting medications but her cough just seemed a bit worse. Then, she started showing some signs of illness such as diarrhea and vomiting which we figured was something viral but the cough was still concerning. So to make a long story shorter, we ended up at the hospital because it was assumed she was going to need a chest x-ray to rule out pneumonia. So after the usual lengthy visit in the ER, the chest x-ray came back clear and we didn’t get any real answers. The recommendation was to follow-up with pulmonology and GI. I have made contact with these doctors and  am sending them video of these coughing episodes for them to review before Faith’s next appointments. I am hoping maybe they can give us some suggestions  in the meantime. One of the doctors in the ER felt that the coughing and Faith’s struggles with clearing her throat appear to be reflux related. I do feel that is a possibility and most likely part of the problem.

We had an appointment with Faith’s endocrinologist this week. We have been waiting to see if there was any change in her IGF-1 levels since her last blood work. Her levels are still very low. I could try to explain all the details that were explained to us with diagrams and lots of medical jargon but the short summary is that the doctor feels that Faith is not responding to the growth hormone since her IGF-1 levels are still so low despite her getting growth hormone injections for awhile now. We even increased her dose to see if she just needed a higher dose to get an effect. So, if she truly is not responding to it then we will not keep her on it. There is no point. So, what is the plan? First, the endocrinologist is going to go over all of Faith’s medical history and information again, do some more research himself, have his medical students do even more research, and then we will meet back with the endocrinologist in the next month or so to have a long discussion. We most likely will have to make a very big decision of whether or not to pursue IGF-1 treatment for Faith. There are many unknowns. A big question we have and the doctor even has is would it be safe for Faith? IGF-1 deficiency is very rare. Faith’s endocrinologist currently does not have any patients that have this. However, there are a few other children that have this that are seen at the same hospital.  We are interested in learning more about possible treatment options and the potential risks and side effects to Faith as we approach making this decision. According to the endocrinologist based on Faith’s measurements from past appointments, Faith is not growing adequately.  To us and to many others, it seems that she is growing and getting bigger. However, her growth is very slow and long-term it will most likely become more apparent.  If we decide not to pursue treatment, Faith will most likely remain very small. The doctor did remind us that in terms of managing her care, lifting her, etc, that it may be helpful to us for her to be small. However, for us there are many questions and concerns that we have about other risks to her body that may arise as a result of the IGF-1 deficiency that we want to take into consideration. We definitely have many things to consider in this decision-making process. We are hopeful that we will have enough information to make an informed and educated decision of what is best for Faith.

Faith is still struggling with the chorea movements despite the addition of Diazepam to her daily medications. We are still in the process of increasing her daily dosage so there is still hope. If it not successful in getting the movement under control, we may have to consider other medications. Faith does seem happier and less agitated despite the excessive movement so that is improvement in itself.

Faith definitely has challenges and struggles but we are enjoying more smiles! Just trying to figure things out and make life the best it can be for our super girl!

Here are some fun summer pics:

Pool time!

Pool time!

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Playing with her bath sponge! Great toy for sensory input!

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Sibling love!

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Holding Trin close! Pretty cool that Faith did this!

I'm a lucky mama! :) Life is crazy, but what a blessing these children are!

I’m a lucky mama! 🙂 Life is crazy, but what a blessing these children are!

Keeping the faith,

Bridget