Well this past week was a long one for us. We started off on Monday with a repeat OPMS or swallow study for Harrison. This was a routine study to see how he was dong. He did not do so hot on his test. He aspirated the thin liquids and aspirated the nectar liquids, which is what we have been feeding him. So he is now on honey thick liquids. He does not seem to mind even though his formula now looks like sludge. After talking with the pulmonologist and speech pathologist we decided to schedule a MRI of his brain to see if his swallow dysfunction is related to his poor muscle tone.
I am not sure if I mentioned it in the last post or now, but we have been very concerned with his muscle tone and coordination. His arms seem very floppy and at times will not use them. Then there are other times which he uses them pretty well. This does a lot for a paranoid icu mom. We have been following this with his doctors and had a neurologist appointment for October 11th. Yes, that is the earliest they could see us. Crazy!
On Wednesday I came home to a phone call from our wonderful pulmonologist suggesting we admit Harrison to the hospital for some one stop shopping. She thought it would be the best option to get some answers. So we headed off to Egelston for a few days of therapy, doctors, labs, and tests. We got home Friday evening with the great news that his MRI was perfectly perfect in every way. They diagnosed him with hypotonia and now he is set up with physical therapy, occupational therapy, and speech therapy. There is some lab work pending that is testing for any genetic abnormalities that might be causing his hypotonia, but this is highly unlikely. It was very surreal being a parent in the hospital that I work at. It was also surreal and frightening a few times to hear the doctors discussing various syndromes they had to rule out. Syndromes that I know too well and are my worst nightmare. I have a small taste of the fear that my patients parents face everyday, and it is their reality.
Harrison did amazing and enjoyed all the attention. Even during his lab work and iv sticks he only grunted and then smiled at the nurses afterwards to assure them he held no grudges. He is just the sweetest little guy and we were so proud of him. We are very glad to be home and have a plan and peace of mind. We are so thankful for grandparents, friends, and lots of prayers.
Please be praying that Harrison will get stronger, and that his swallowing will improve and we will be able to avoid tube feeding (this is the next step if he does not improve). Also pray that the lab work comes back negative, which we expect.
We are so thankful for our gift, Harrison.
4 comments:
Oh Krista! I know how hard this must have been for you. Good that you got some answers and you didn't have to play the waiting game until October...but heart breaking as you listened to all the things they were considering. It's hard as a mommy and even harder as a mommy/nurse in some ways. You already know what to fear. I will be lifting you up in prayer sweet friend. I'm so thankful for the good news you have already gotten! I hope you are having a wonderful Mother's Day!
Krista, I'm so very sorry to hear this about Harrison. I can't even imagine how hard all this was. We've been going through a medical diagnosis of our own that is very minor compared to this, and it definitely has been hard on me, so I can't imagine how much harder this would be. And I'm sure being a nurse would make it harder from knowing "too much." I just said a prayer for Harrison. Please keep us updated on the blog.
Praise the Lord for sweet Harrison!! I'm thankful you were able to do a little one stop shopping at Egleston and that everything came back great! We love you all!
Krista, I'm so sorry you had to go through all of that but I'm so glad you have some proactive doctors to help you get some answers. God is good! I will continue praying for your sweet Harrison! You are such a precious mommy! Love you and miss you tons!!
Post a Comment