A Quick Update on Madi and a Prayer Request for Deena

For those of you who are our friends on Facebook, you may have seen that Madi was in the hospital this weekend.  On Friday she woke up seizing, but it wasn't a typical series of seizures for her.  After maxing her out on her rescue med, I called 911 and asked to be taken to the hospital.  She was awake the whole time, but I think she was hallucinating because she kept talking about seeing Sponge Bob and skeletons; two things she never talks about or watches on TV.  At the hospital she had another seizure are required IV meds to stop it.  After that she finally fell asleep and I knew that the worst had passed.  We had to change rooms because they were understaffed and were moving everyone over to the adult ED section, but she slept through all of that, thankfully.

While we were at the hospital they ran tests to try and see why she had a seizure.  Her shunt series came back just fine, her urine looked great, but they came back and said her blood work looked terrible.  Her white and red counts, as well as her platelets, were very low.  They told me they needed to transfer me to another hospital so that she could see a hematologist and prepared me for the fact that she might need a platelet transplant.

They let me transfer with her, so I was very thankful for that.  This is the first ambulance ride she remembers, and she was pretty excited, but also nervous and wanted me to hold her hand the whole time.  I'm thankful I was able to be there to do that for her.  

At the next hospital the brought us directly to the PICU.  We were put in a room with a nurse that already new Madi, and she was really sweet with her.  You could see in her eyes, though, that she was worried for her and what news might be headed our way.  They sent the hematologist to talk to me.  She started using words like "leukemia" and "cancer" and we were starting to get worried.  They wanted to re-run her tests to get a baseline there.  Thankfully they were able to use the ultrasound machine to find a vein in her leg, so the blood draw didn't bother her at all.  Normally it is very traumatic and upsetting for her.  

After a long day of waiting, they got her blood test results back.  Everything looked perfect.  Not one thing was low.  They transferred us to the hematologist unit and out of the PICU and the doctor came to talk with us again.  They basically said that they couldn't believe the blood work was from the same child.  The doctor did say she has seen this happen one other time, where things went from looking terrible to looking just fine.  She said she wasn't sure what happened, but we were all so relieved.  God is watching out for our sweet girl for sure.  We stayed overnight for monitoring but were discharged the next morning.

It was a crazy and stressful whirlwind, but we are so glad to be home as a family again.  Madi is back to her normal, spunky self, and we couldn't be more thankful!

Next up... Deena!  Sweet Deena has dental surgery tomorrow.  She's needed it for months but this is the first opening her dentist had available and we are thankful the time has come.  She came home from India with some rotten teeth, lots of cavities, and a special little mouth that's missing most of her adult teeth.  In addition to having OI (osteogenesis imperfecta), she also had DI ( Dentinogenesis Imperfecta).  Tomorrow they will pull some of the teeth that are beyond saving, repair those that can be repaired, and cap those that can be saved with a cap.  The surgery should last about 1 1/2 hours and should be outpatient if all goes as planned.  The long term plan is to keep her teeth as healthy as possible, going to partial dentures when needed.  Please be praying for a safe surgery and fast recovery.

Thank you!!

     

An Interesting Trip to the Dentist

(Another post to catch up)

Deena's first trip to the dentist was a success, but was also not at all what I expected.  I knew she had major teeth issues and would need a lot of dental work.  Initially, our holistic dentist was going to see her, but once we went over the extent of her issues, we decided it would be best for her to see a dentist that could perform the initial dental procedures under anesthesia in the hospital.  It can be difficult to find a dentist that is familiar with osteogenisis imperfecta (OI) and Dentinogenesis Imperfecta (DI), which often goes along with OI type 3.  After getting recommendations and calling around, I found a dentist, Dr. Hishaw at Tucson Smiles, who was familiar with both and who felt like she would be able to help Deena.  Deena loved her and did great with  her first x-rays and cleaning. 

Deena does indeed need extensive work and we are currently working with the hospital to book a date for her that also works for her dentist.  The good news is she was diagnosed with DI, so our health insurance may help pay for part of the hospital and anesthesia costs since that may fall under "medical" expenses.  We, unfortunately, do not have dental insurance, so the dentist bills will still be our responsibility to cover, but it will be amazing if insurance helps with the rest.

The surprise of the day came when we looked at Deena's panoramic x-ray.  Apparently, there is only one set of adult teeth left that haven't come in yet.  The adult molars you can already see when she opens her mouth are all she has, other than that one set.  Many of her adult teeth came down in to the wrong spot (notice the adult canines where a molar should be, for one).  We don't know if she was just missing a bunch of baby teeth, if the baby teeth were pulled, or if they fell out really early, but there was nothing to guide her few adult teeth down, so they came down in to the wrong spots in a few places. It looks like she has a lot of teeth, but in reality, she has multiple places where the baby and adult teeth are side-by-side because the baby tooth never came out and the adult tooth came down early, in a different spot than it should have.  

The plan for now is to deal with the decay and cavities in her mouth, leaving as many teeth as we can, even the baby teeth, as long as they are healthy and able to be saved.  Eventually she will need partial dentures to help fill the gaps since bridges and implants aren't an option for her.  I told her she was going to have a million dollar mouth, and she thought that was pretty great!

Deena loved the dentist so much that she came home and practiced finding cavities on Madi.  Who knows, maybe she will be a dentist one day when she's bigger.  She's a smart little cookie and I know she would make a great dentist!