In less than 48 hours, Miss Maia will be home from the hospital after 38 days. Unbelievable to think that we have spent over a month here. Truthfully, I have mixed emotions. I am glad that she will be in familiar surroundings (and that I will be, too) and hopefully thrive. I am discouraged that she will be returning home so "different" than before. I had hoped for a bit more progress before her discharge and I am concerned about her intake.
Maia vomited at breakfast and lunch today. Small amounts both times, but she is so "urpy" and "burpy." Docs ordered simethicone to see if this helped, but I didn't notice any difference after she received it at lunchtime. Food and fluid intake has continued to gradually decline. I did see that one of the new seizure medications can cause mouth and throat irritation. I don't see any evidence of this, but did mention it to the docs today. Although I would love it if Maia was able to eat her regular diet, if she needs to "live" on liquid nutritional supplements for now - that's certainly manageable. My bigger concern is that today she didn't maintain enough fluid intake, either. Docs are aware, no answers.
The OT and I gave Maia a bath this morning. We put bath blankets in the tub and sat her on those. She did pretty well, but definitely needed guarding to make sure that she didn't hit her head on the edge of the tub or the wall. Still trying to sort out what our best option is for bathing. Thank goodness right now, I can just wash her head with a washcloth since her hair is so short. It is growing... one of my friends said, "Well, it's almost like when you brought her home." Yep - it was awful short then, too.
While we were working on the bathing, Mark had the chance to talk with the rehab doctors. He asked about Maia's prognosis and why she was not responding as well as they had anticipated. Dr. N explained it this way. If a person has a stroke, the injury is localized to one area of their brain. The brain is able to rewire working around that area. Maia's injury was to the entire brain which makes rewiring a lot more difficult. Mark said the doctor tried to be encouraging, but conceded that she may not return to her previous level of functioning. I want to believe in miracles and claim complete victory for her (as many of you are doing), but for now... I may just have to rely on your assurances. My heart feels like it is trying to prepare me so that I am not devastated if that doesn't happen.
Maia is staring to make a few more sounds which is encouraging. She definitely has more spark and life in her eyes than she did last week. The PT said that she felt like today has been Maia's best day so far.
We had a fun visitor at lunchtime today. Dr. Jack came to see Maia. She was so excited when he came through the door. Loved seeing her smile!! This pic isn't great, but I don't have my camera cord to down load from my camera to the computer so the pic from my phone will have to suffice for now.
Maia made it through a small dinner without vomiting which was a positive. On a humerous note, I did wear a brown shirt this evening in the event that bowel care was as exciting as last night. I managed to keep my clothes clean this time, although I still should have worn gloves - lol!!
I've gotta quit for tonight, I am struggling to keep my eyes open in spite of everything I want to say. Hope you all sleep well!
What a fun visitor!!! That's awesome the hospital does that.
ReplyDeleteYour mixed emotions about her coming home are very normal I'm sure. Hopefully her familiar surroundings will help her heal faster. And you'll get to sleep in your own bed every night! :-)
Can I please encourage you to lodge a formal complaint here. As I understand it, your concerns were rebuffed and a thriving child is now regressing because no one cared enough to legitimize your concerns. While I do think you must forgive them, this situation has negligence written all over it. I am not asking you to take legal action, but what breaks my heart is this happened to this little child who has already uffered so much in her young life. The orphanage people were callous, what is the excuse of the doctors. Please talk to someone who can do something so this does not happen to any other child. I believe in miracles and a heavenly physician. Shall be praying for you and your family, especially Maia. She truly lights up a room with her smile even after all that has happened to her. She is a very special little girl and you are very unique yourself. Prayers.
ReplyDeleteKate
Melanie, I understand your feelings at this point. I am still believing she will heal. I have met people who have had traumatic brain injury and the brain does heal amazingly, it takes time. I believe God is healing Maia. I am claiming the victory for Maia, in the name of Our Lord Jesus Christ. I rejoice in the Lord for Maia's healing. She is a living, breathing miracle a child of the King of Kings, and Lord of Lords.
ReplyDeleteI wish I could be there to help you and to give you a hug and to pray with you and over you and your family. Praying continuously for Maia, you and your family.
Hugs to you all.
Jacquelene L.
Canada
It's good to see Maia making tiny bits and pieces of progress - even when we all want to see her leaping ahead at warp speed. Being back at home is sure to help her in many ways - she will feel so much more at ease and relaxed there.I love her beautiful smile - what a blessing to see it once again!
ReplyDeleteAre thickened liquids easier for Maia to swallow? If so, there's an otc powder called "Thickit" which can be added to any drink to make it the right consistency. It was necessary for my mother to use it after she had a very severe stroke (her speech came back fully, but her swallowing remained afffected).
Does Maia like Jell-o and/or applesauce? Both would get some liquid into her system and are easy to swallow...
Wishing you all (especially Maia) all good things,
Susan in Ky
cousin to 2 from EE
My heart goes out to you. When you don't have assurances in your heart all you can do is rest in the Lord in the "now" and lean on His breast (Ps. 131). It's like sitting in His lap as a little child and letting Daddy take care of your needs. I remember a 32 day crisis point in my past involving waiting and wondering and I didn't have the energy to even pray more than "God help me!" I knew He heard this prayer and read my heart and knew my weaknesses. He isn't impressed with our many words anyway. (Matt. 6:7) I relied heavily on the prayers of others at that time. God did indeed give abundant grace & brought me through -- I know He is supplying it to you, too.
ReplyDeleteMaia looks adorable in this shot with the dog! What a little treasure she is! ~ Tharen
Melanie and Mark, This must be a weird time...happy to be back at home soon but with so much changed since the last time you three were all together...
ReplyDeleteI do pray for Maia's complete recovery but I am humble to turn the definition of 'complete' over to God. As you wrote, God trusts that you all can handle this, and you will see it through sometimes moments at a time and other times a day or so at a time.
You are wise to be with God and prepare your heart for what may not occur and for what may occur. You guys, after all, are the ones who will be responsible for her care day in and day out. We will all simply row the boat and support your family and you go through the next steps on this journey.
I am sending you love. So much love. Dear God, please be with this little girl, her parents and her brother.
I think being home will be healing for all of you. I'll keep praying for the very best for all of you.
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