I received a phone call yesterday morning from the pediatrician's office. She had the therapist on the line and wanted me on too so that we could get an appointment in asap. She asked if I'd be available at 12:30 and I said YES. I was happy to have someone to see that would hopefully give me more information on our options and ideas on the need for a G-tube. I know that I've mentioned before that the NG tube (the one Eliana has that goes from her nose down to her stomach) is not a good long-term option. We had initially considered the G-tube, but the cardiologist didn't think we had time. He wanted at least 6 weeks in between surgeries and didn't think we had that much time until her heart needed to be repaired. Thankfully we did have more time for her to grow and get stronger, but also more time for the tube. It's been almost 4 months now. I don't think it can stay too much longer. (Maybe another month?)
I think I might have been confusing in one of my posts about feeding therapists. It's not surprising since to date, I've seen at least 5. Someone joked that by the time we're done I may have seen all of them in our area. She may be right. Here's a run-down of the folks I've seen and the order in which I've seen them.
1. Pediatric OT (occupational therapist) in the hospital. She was wonderful and very helpful, but only sees children that are "in-patient". We saw her in Feb when the NG tube was placed and again after heart surgery. I've talked with her some on the phone since, but can't see her.
2. Speech or OT (can't remember) that was out-patient with the hospital. Also helpful and works on the same floor as all of our cardiac appointments. Our goal though was to find someone to come to my home as that is most helpful and also easier for me!
3. Physical therapist/feeding that came to my home. Very nice gal, though some of her suggestions haven't felt right to my mommy heart - and I told her that. Most feeding therapists have a speech or occupational background. This gal has many, many years experience working in the NICU helping get babies to eat. She has continued to come to my home while I was also scheduled to see an OT for more feeding help given Eliana's problems.
4. Occupational therapist (OT) that sees a friend's child at a facility near the hospital. Really liked her, but her schedule was so booked that after seeing her last week, I couldnt get another appointment for 3 weeks. Really too long to wait given Eliana's current condition.
5. Second feeding therapist at the same facility as above. She worked us in yesterday at the urging of Eliana's ped. Also nice and helpful.
Eliana, Daniel and I left for the appointment around noon. (My other children were in the co-op camp at the time.) Daniel wanted to go with me and was good during the appointment. I think at some point he will also need to be seen by someone there as he has some feeding issues too. (Very picky on a not normal scale.) The therapist helped with some ideas on getting him started too which was nice as she also thought he could be helped with some therapy based on things I shared and some that she observed. She was very nice about him being there and playing in the room and interacting with him too.
One of the first things she commented on was the placement of Eliana's feeding tube. Quite unusual to say the least. She even took a picture of it! She said that if it's working, not to change it and it is working thus far - she has not pulled it out since it was placed this way. (She does try if awake during a tube feeding so needs to really be watched then.) It's been 2 days so far! (Who would imagine that it would seem like a long stretch to go 2 days!)
We tried feeding, various oral stimulation exercises, different ways to hold her during feeding, etc. All in all she took close to 2 ounces (which is pretty good for her) in about 40 minutes. Still too little and too long. The therapist commented that she was working pretty hard and not very effectively. She also agreed that it didn't appear to be a hunger-driven problem confirmed by the times I've left the tube out and seen no improvment.
The therapist said that she does think Eliana will need a G-tube. She didn't see any reason to believe that things would improve quickly enough to avoid it. She shared that she had an NG tube for 10 days once and that it changed her nose. She said that it hasn't been the same since and that she has problems with sinus infections on that side now too. Oh, I hate thinking that she'll have long-term issues with her tiny nose due to this! I know that the size of her nose (really small compared to others her age) will likely be problematic and to think that it may be increased, well, I'll pray that it's not!
The therapist also commented on her skin. I told her that it actually looked better. She thought it was a problem and even commented that her skin was "fragile" all over her body. She said that if she did get a Gtube that her skin might also be a problem around that site. Guess this will have to be a strong prayer request too!
She also said that there was a cancellation with therapist #4 and she pencilled me in for a time next week! So thankful for that kindness! And the appointment time is very close to her normal feeding time which is also a blessing! I hadn't asked for this but it was so kind of God to provide it for us!
I left the appointment with the confirmation that what I thought was going to happen, will most likely be occuring soon. Another surgery for my little girl. Just the thought makes tears well up in my eyes. I know that it isn't as "serious" as heart surgery, but any surgery is serious. Another hospital stay. I don't know any details yet on the surgery at all. We have an appointment with the cardiologist on the 11th and will likely find out more then. Guess I should probably start doing some research. (This isn't my strong suit and I've been most blessed by several friends that have done this for me at various times.)
We also left with some oral motor exercises to do with Eliana which she likes or at least doesn't mind. She is pretty easy-going though and doesn't mind a whole lot. She really is a sweetheart!
I have an adorable picture of her taken today. I'll try to have one of my guys upload it so ya'll can see it soon.
Please keep praying for feeding issues, wisdom on the decision about surgery and Eliana's heath. Oh, and a small prayer for my hand. I burned it tonight while helping Rebecca cook something for her Sunday School class tomorrow. (She was making breakfast pizzas by cooking them in the pan then placing the pan in the oven to broil for 3 minutes. After taking the pan out of the oven, I set it on the stove. A few moments later I grabbed the handle - and burned my hand. It isn't bad - but it does "burn".)
I'm far behind on answering notes, emails and phone calls. Please know that I treasure each one and am very thankful for all of you! God is good!
37 minutes ago