We are just getting settled after Eli's doctor's appointment today. Concerning his heart, everything looked GREAT! He had to have an echo done today, which we didn't expect, but the results were good. The "work" done to his heart is functioning perfectly with no surprises. His oxygen sats were at 88%, which is perfect for him. The plan is to get another heart cath done in the near future, but we still aren't sure exactly when that will be. We'll keep bringing him in regularly to get things checked out and Elijah will determine how soon that happens. It could be next month and it could be in October.
A point of concern right now is his breathing. I had mentioned before that he has a bit of squeakiness when he breathes and sometimes it seems like he's working extra hard. The G-man said that his lungs sound perfect, so that wheeziness may be a result of a few different things. It could be that he is showing signs of asthma (yucky) or it could be airway issues caused by intubation/extubation/surgery, and in that case it would get better with time. Whatever it is, if it continues in the next week here, we will need to bring him into an Ear Nose Throat specialist to get things checked out. Yes! Another specialist to add to Elijah's list!
Next Wednesday is his first Physical Therapy visit. We'll hopefully get some insight on how to help out with his plagiocephaly (flat spot) and torticollis (tight neck muscle). We have to go to weekly PT appointments because his flat spot is actually pretty bad. Because he was on his back for so long in the hospital and because he was unable to be on his tummy for 4 weeks post-surgery, his head automatically falls to one spot. If it is bad enough (the PT will determine), he may have to wear a helmet for a few months to help reshape his head. We're hoping we can correct it without that. Dan and I have done our very best these past few weeks to get his little head turned the "other" way so that we can avoid the helmet. We've also been putting him on his tummy quite a bit, but he just doesn't seem to want to lift that big head up too much yet. Most days I feel like I'm his physical therapist instead of his mommy. We work on rolling and tummy time and neck strength and stretching AAaaaaallllllll day long! He brings a few extra challenges, but at the same time he brings so much joy to us that we cannot imagine life without him. Our little miracle man!
8 comments:
I am so glad to hear Elijah's doctor appointment went so well. I was worried about the wheezing, but now not so much. Harrison had a pretty bad shaped head at 4 months old. Due to his left vocal cord being paralyzed he could only feed by mouth while lying on his right side. Also, after he ate he had to stay at a 90 degree angle to prevent refluxing it all up. Bottom line, his head corrected itself on it's own. We would have him sleep on his left side to help. As far as a possible ENT. If you end up needing one, Harrison's ENT in Minneapolis was Dr. James Sidman. He actually took out our other son's tonsils last summer. He is a very good doctor. He diagnosed Harrison's vocal cord paralysis and did everything he could think of to prolong Harrison's feeding tube. Even though he still had to have one put in his stomach, we still respected the fact that he took our feelings into consideration. I am trying to think how we got Harrison off of his belly, because he didn't like it either. He didn't have strength to push off of his face. We used the boppy pillow and other pillows. You can try a towel rolled up and put it under his arms to elevate his shoulders while on the floor. Once he has good neck control and can hold his head up I recommend a Bumbo chair. Harrison couldn't sit until he was almost 14 months old and we relied on this chair. It holds them in a sitting position. We even took it to restaurants. Good luck! It is wonderful to hear happy heart stories; even though they are very difficult every day.
Tiffany, Mom to Harrison
Glad the app was so positive... I still think Eli is just a gorgeous little man... as soon as I see his photo it makes me smile...
Take care of yourselves...
I'm glad cardiology went well! Yeah specialists are good to have but it's a little annoying at the same time.
Way to go Eli! We are proud of you. I know what you mean about more specialists--I figure that Micah is wanting to meet all the specialists to find out what kind of doctor he is going to be when he is a grown up! Think of it as on the job training!
Hugs to you all,
Samantha
glad the echo went so well..yipee skippy!!
i totally know what you mean about being a physical therapist...
*sigh*
we still give matthew a few breathing treatments throughout the day..
and some steroid puffer stuff in the morning ... and he takes singulair at night ...
all for his little lungies...
he always has a bit of a wheez..
i don't recall this.. but is Elijah doing any of that now???
What a cutie!!! Our Isaac is getting a flat spot too...what's up with these guys!!! I have a friend whose son is in the helmet...and he uses it to chase them and head-but them!!! So..the fun you can expect if you get one!! I am so glad to hear that things are going good for you guys...what a lucky guy Eli is to have such wonderful parents!
Kathy
Tiffany, I mentioned this on your blog, but Dr. Sidman is actually the ENT we are scheduled to see in a few weeks. Small world! I guess when you're that specialized, it's easy to see the same dr in the same city. I'm so glad to hear he's a good doctor. We've been sooo blessed with amazing doctors so far in this journey, so it's good to know we'll have another good one. Thanks also for the recommendations about getting Eli's neck muscles stronger. We have been trying the boppy for a few weeks and still nothing! He shows zero sign of wanting to lift that head up. :( I know it will happen eventually, it's just a little frustrating sometimes realizing how "behind" he is in that area. Oh well....he'll catch up soon enough.
I'm glad to hear the cardio appt went well. Hopefully his breathing will clear up on it's own.
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