Saturday, December 3, 2022
Thursday, November 17, 2022
Wednesday, July 12, 2017
Thursday, June 11, 2015
Adotpion
I wasn't sure how to title this post. The following post are about our adoption (4th time) of Addie. A beautiful 2 (just turned 3) year old. We knew she has special needs. She was listed a special focus child because she had more then one special need. She has repaired CHD, cleft lip repaired , cleft pallet needs to be and seizure activity. Ive tried to post about how difficult it can be when you travel half way around the world and are given a very sick child. That once you get home you find our her needs are sooooooo much more then you imagined. How the whole family is affected and struggle with little sleep, hospital stays, and no normalcy. How your heart brakes for this tiny little girl who you just want to make better. How scary it all was in China and how some families might have walked away.
"Regular Days"
So today is one week out of the hospital. We give Addie meds 3 times a day. It will be back down to two after her current antibiotic is done. She will be on a low dose of antibiotic until we figure out the throwing up but that is only once a day and mixed with her other meds. We got the call yesterday that they can put in her ear tubes tomorrow. The thing that is going to suck is they scheduled her for 1 pm so no food after 5:30 am. Now we usually wouldn't have take that time but we are still trying to figure out why she is screams like she is in pain at all hours of the day and night for no reason. And she doesn't respond to sounds so they will test her hearing while she is sedated. They will also run a test to make sure her urine isn't spilling into her kidneys and blood work for genetics. All while sedated for 5th time (I think) since we've had her. So no regular days for us yet.
Wednesday, June 3, 2015
Back in the hospital
So the only time I find to blog is when we are on day 5 of a hospital stay. So here is a catch up since we have been home. Three days after arriving home Addie had her first seizure. I could write tons about this but too tired. That was our first admittance into CHAD. It was a one nighter (yea!!) they ran test figured out meds sent us home. That was April 13th she then started having seizures again on the 18th and continued on until the 27 almost daily and needing her rescue drug, Diazepam given rectally. Meds were added and increased. May 4th we were admitted again to DHMC for vomiting. This was just what we had seen in China.. Very long story here if you want to hear it let me know and Ill add more BUT quick version after MANY test we found she had malrotation of the intestines. They go in fix that remove appendix YEA after 10 days we go home!! Every things fixed? Keep reading. Seizures start again tweak meds. Now I don't want to make it seem like we take the seizures lightly. They SUCK and its horrible to watch her have them but until all her other "issues" are under control they are a part of her. So Doing good. Lots of Doctor appointments its just a way of life right now she is getting ready for her first birthday party at home! We celebrate on her birthday but her party was going to be on Saturday. Friday night 5/29 she throws up her meds before bed she throws up her night bottle and starts to throw up ever 15min after that. Just like we saws in China JUST like we saw before her operation. WHY!!! We cant get her seizure meds and oh she now has high blood pressure so she is on bp meds too into her so we head off to the ER. Here is a side note: Its just sad when you have a bag packed for you and your husband to take with you because every ER and most DR visits turn into being admitted (insert tear here). Sure enough by the time we get there she has two seizures in the ER and we give her here rescue meds. And she is admitted. We are now on day 5 this is what we know. She has Klebsiella a type of UTI that is not common in children. She is resistant to many antibiotics and the first one while they waited for the bacteria to grow didn't do a thing so they now have her on the correct antibiotic. She has Cyclic vomiting syndrome. She is giving anti nausea medication that the original dosage was way to low and when the GI doctor stopped by was increased and not sure how that's working because she still is throwing up. Ken and I are tired and we miss our other children. But this isn't about us its about this beautiful baby girl we brought home almost 2 months ago that just cant catch a break. We will just get to see the real her start to poke through and wham she's back in the hospital again. It all comes without warning. She is happy playing and it just hits her. More test have been ordered, more sedations on top of all we are still waiting on with here
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