Sofia's Surgery

It's been a while since I've visited this space. A while back Sofia had a sleep study that showed she had sleep apnea. I thought they'd schedule her for tonsils/adenoids immediately but the doctor said he wasn't extremely concerned since her tonsils weren't too big and her sleep study wasn't too bad (mild sleep apnea). She wasn't having any symptoms of sleep apnea at the time so we agreed to revisit the surgery if things changed. Over the past several months we've noticed a change in her sleep and have observed behaviors that definitely indicate sleep apnea. She was snoring, having pauses in her breathing, waking up gasping for air, sleeping sitting up or folded in half, and just never seemed fully rested. So when we went to the girls' annual Down Syndrome Clinic appointment, we mentioned our concerns. The doctor looked over the report and let us know that Sofia's sleep study was actually WORSE than Mila's!!! We know how much Mila's sleep and overall disposition improved after she had her tonsils/adenoids out, so we were shocked to hear Sofia's sleep study was even worse. When we spoke with the ENT we were under the impression that it really wasn't too bad! With her sudden increase in symptoms, the doctor at the DS clinic thought it'd be a good idea to go ahead with the surgery, so we had it scheduled.

Sofia had her tonsils and adenoids out on Friday, along with having her ears cleaned (TONS of wax!) and tubes checked. She and I made the drive to the children's hospital and stayed overnight while Shawn stayed here to work and take care of the girls, with some help from Uncle Mike! Her surgery was a bit delayed so she didn't get back to the OR until about 2:45. I was so stressed about this surgery because she has made such great progress in the last few months (emotionally) and I was afraid this would set her back.

She did pretty good waiting all day without eating, for the most part! 

Here are some pictures of her waiting to go back! 

Here she is once we got back to the preop room. She was not too thrilled about the socks she was supposed to wear and took them off 48 times before I finally gave up :) 

We were told it would be about an hour longer than expected and although Sofia was doing great, my Mama instincts told me this Ticking Time Bomb didn't have an hour left in her! Who can blame her, she hadn't eaten since 9:00pm the night before and it was now about 1:30pm! 

And, as I predicted, the time bomb went off and this happened: 

We regrouped, snuggled and I sang "You are My Sunshine" (her favorite song) about 32 times and it was all good! 

They almost forgot the premed to help her relax before going back to the OR. It made her silly, but not sleepy at first so I was worried!!! By the time we got back to the OR it had fully kicked in and worked PERFECTLY!

She did pretty well since they let me go back to the OR and they gave her some meds to calm her before the surgery. They worked so well she was pretty docile in the OR, except when they put the mask on her to go to sleep. She went out fighting! At my request they also allowed me into the recovery room before she woke up from anesthesia which also helped immensely! I have found that my girls (especially Zoya and Sofia) have a much higher level of "medical anxiety" and have a much harder time with the separation that happens during surgeries. Zoya has gotten much better over time, but Sofia is in the depth of her trust-building and I knew it'd be detrimental for her if she woke up in recovery without me there (heck I can hardly go to the bathroom at home and leave her in another room at this point!).

I was thrilled to see her still asleep when I went back! It took her a bit to wake up, but that was fine with me because I knew I'd be there when she woke up. 

The nurse couldn't believe that she didn't wake up screaming and crying! She said 90% of their 2 year old patients who have this surgery wake up screaming bloody murder. Honestly, I'm shocked she wasn't screaming as well! She was pretty clingy and demanding once we got to our room. Nothing was making her happy and I literally could not MOVE (not even my eyeballs) without her getting upset. After a few hours she settled down. We had a roommate for the night who had quite a few "visitors" which Sofia did not appreciate (neither did I). Luckily both Sofia and her roommate slept pretty well overnight with no crying! I slept with Sofia and she literally had to have at least one hand on me at all times. For much of the night she laid half on top of me so I couldn't move...I'm pretty sure that was her plan! :)

For a while after surgery if I tried to take a picture she kept turning her head. I think she was a little POed at me! 

Looking at herself in the phone camera! Blue tongue from her slushie! 

She started looking sleepy and I thought, this is too good to be true! 

Sure enough it was ;) By the time the nurse came in with her "before bed" med dose, she had gotten a second wind! 

After a bit she wore herself out though :) 

I snapped this pic the next morning when she was snuggled up to me. I did take a few punches to the nose and kicks to the ribs overnight, but I think she was happy to have me by her side! 

At least she found comfort in her Mama! We had an AMAZING nurse for much of the night so that made our night go much smoother!!! She slept the entire 2.5 hour drive home and rocked her recovery until TODAY. She's struggling today, but still eating and drinking enough that I'm not concerned. I just feel bad she's in so much pain!

Day 1 post op, rockin it!: 

Day 2 post op: "Who just had their tonsils and adenoids out??? Not ME!" 

Day 3 post op: snuck right up and sucker punched us!!! 

Even though she wasn't feeling hot, once her motrin kicked in she was willing to eat some scrambled eggs and ice cream! She had a rough morning and is napping now. I'm praying today is her worst day for recovery (although I know days 5-7 are usually the roughest). 

Here's hoping Sofia feels back to herself in no time (or, wait, should I be wishing that???? ;))

Zoya Health Update

Blogging has taken a back seat again! It seems our days just get away from us lately! We've had lots of medical appointments again lately, many of those being for Zoya. Ever since she was hospitalized in September, she just never really bounced back. She's just had a tough time since September. School has been rough with some great days and some really tough days.

After her hospitalization in September we started seeing a slew of specialists to rule things out. We saw hematology/oncology, urology, cardiology, and most recently endocrinology. Before we were set up with endocrinology, she had checked out well at all her other appointments, but just still didn't seem back to herself. On a hunch we started checking her blood sugars and let her pediatrician know we were concerned she might be having some blood sugar issues. Mostly we thought she was waking up with low blood sugar because she was having symptoms including waking up sweaty and shaky, pale as could be, complaining of a stomach ache or headache and crying and begging for a drink. Within 15 minutes of drinking juice (she insisted on juice not water or milk) she was back to herself for the most part and it was as if none of that ever happened.

However, when we began checking we started getting some high blood sugar numbers as well as low. Some of the numbers were in the diabetic range so her doctor ordered more bloodwork and a 2 hour glucose tolerance test. Most of her bloodwork came back normal, but the 2 hour glucose tolerance test showed her dropping to a very low 47. Normal blood sugar range is 70-100. 47 is VERY low and can cause loss of consciousness and coma! We were sent to endocrinology and the endocrinologist thought maybe that number was a lab error. She ordered a 5 hour glucose tolerance test at the children's hospital. The doctor was a little confused about why/how she could be having such high and low numbers but suspected reactive hypoglycemia for the lows. This 5 hour test would show her blood sugars in 15-60 minute intervals after she drank the sugary drink.

Here she is after she got her IV for the test. It took two tries and she was so brave and still smiling! 

She wasn't allowed to leave the bed and I even had to carry her to the bathroom...I didn't realize she wouldn't be allowed to move at all for the entire test!! We brought her doctor kit and iPad and those two things kept her pretty busy! 

When she had her 5 hour GTT it didn't go well. They had to end the test after 3 hours. She initially shot up pretty high and then dropped to 50 at the 3 hour mark. She was having tons of symptoms and very upset and sick. I asked several times if the test could be ended at that point, only to find out she had been at 50 for 15 minutes already and they never told me because she wasn't having symptoms! The test was ended and she was able to eat/drink, which brought her blood sugar back up within 20 minutes. After that though, she was spent and so exhausted. Here is the poor girl 30 minutes after the ordeal:

On the way home we were supposed to stop at a spaghetti dinner fundraiser for a family adopting a child with DS, but we had to bow out since Zoya was so tired from the whole ordeal :( She passed out after less than 5 minutes in the car! 

We are still waiting on some of the other bloodwork that was done during this test (specifically insulin levels), but the initial diagnosis is reactive hypoglycemia and the doctor thinks this may be slow onset diabetes. There is more happening than JUST the reactive hypoglycemia because if thats ALL it was, she never would have shot up as high as she did.  Her body should have produced enough insulin at the right time to make sur that spike didn't happen, even after she drank pure sugar! I've heard that lots of kids who develop diabetes develop it after a bad illness or infection such as what happened to Zoya in September. Of course we are praying this is not the case! As far as the reactive hypoglycemia, we need to make sure she eats every 2 hours (3 hours at the most, except for overnight) and make sure she has protein with all meals and snacks, and never has carbs/sugar alone without protein.  Sugar/carbs alone could cause her sugar to spike and then plummet like what happened during her test. 

She already has a pretty clean diet and is gluten free, so to limit it even more made me a little sad. We changed her snacks at school from pretzels/veggie straws/fruit snacks/GF crackers to things with protein like cheese/meat rollups, pistachios, yogurt, sunbutter, etc. The first few days she cried at school about the changes. I was surprised by that because the things I sent in are things she loves at home! But I think it just threw her for a loop since she's had pretty much the same snacks for the past 2 years at school. This week went much better with the snack change so far. I let her help me pick out what to send to school and reviewed with her in the morning what her snack choices would be. 

This could very well explain some of the behavior difficulties we've been facing with Zoya this school year and why she seemed so up and down...why some days/times were GREAT and why others were awful. When her blood sugar is high she seems like she's on speed! When it's low she seems very tired, non-compliant and sometimes anxious. Now that I'm aware of the symptoms, I can say without a doubt that some of her "panic attacks" were not panic attacks, but low blood sugar :( We are still pretty confident, though, that her "general anxiety" is an accurate diagnosis since the medication is helping her so much. Having both of these issues, it's hard to determine which symptoms are attributed to which diagnosis :( 

It's hard having no birth family history when things like this arise. That information would be so helpful! We are hopeful that with small diet changes and doing other things to help her body heal, that we can keep her from developing diabetes a bit longer, or maybe all together. I know the thought is that if she is going to develop it, it'll happen regardless of changes we make, but we are still hoping that a formal diabetes diagnosis is not anywhere in the near future for her. I can't help but think it'd be one more thing that would make her less independent and while that doesn't bother ME, she already wants so badly to be independent at age FIVE, so I worry it will bother HER! If you can spare a prayer, we'd appreciate prayers for Zoya's health! I completely realize in the grand scheme of things diabetes is really pretty "easy" to handle....but we are just praying it's not the case for Zoya! If it is in our future we'll figure it out, but it sure would be nice not to have one more thing to make life harder for her! 

Zoya-On the Mend!

Thanks for all your sweet comments asking about Zoya. She came home from the hospital Monday evening on some strong antibiotics. She is eating much better (still trying to gain back the 2 pounds she lost), and isn't complaining of anything hurting. She is still pretty tired and is napping about 2 hours a day and sleeping about 12 hours overnight. I hope all that rest is helping her little body heal. She still has the petechiae, although they FINALLY seem to be fading a little. We're still pretty concerned about the fact that she still has petechiae-going on almost 3 weeks now :( A week from Tuesday she has at appointment at the children's hospital with a hematology specialist to look into that further. She stayed home from school all week trying to heal. We're going to try shortened days (2 hours) on Monday and Tuesday and see how she does. She is getting bored with me! She'll also follow up with urology as well.

The final outcome of her hospital stay is still somewhat unknown. We had a great doctor on Monday and he sat with me and explained everything and really tried to get to the bottom of what was going on with Zoya. He said her bloodwork showed a pretty recent (but not current) infection of mono. My theory is that her body was so weak from recovering from that (since it happened right when we were taking her naps away and right when school started) that some little bacteria took the opportunity to invade her weak little body. She responded so well to the antibiotics that we're certain there was a bacterial infection of some sort, even thought he doctors didn't agree on where it was (some said UTI and others said no).

The hospital was opening a new PEDS floor in a new part of their hospital, so Zoya got to be the first PEDS patient on the new floor. She was transferred there Monday and treated like a Queen. I guess there are more exciting things to "win" but we'll take it HAHA.

Also, she just happened to have a tube check at ENT on Thursday and we discussed sleep apnea. We've always thought she likely has sleep apnea due to her sleep behaviors, but after spending 2 nights with her in the hospital I am even more convinced she has sleep apnea. Since her anxiety prevents her from being able to complete a sleep study, I asked the doctor what his thoughts were. He said her tonsils looked okay and that the adenoids usually follow suit. He decided to do an xray of her adenoids and they are pretty large, blocking about 70% of her airway behind her nose. It's just like Zoya to never follow the "rules." So, she'll be scheduled to have her tonsils and adenoids out, but I want to make sure she's FULLY recovered from all this first. Poor girl hardly EVER missed school in the past 2 years and this just does not seem to be her year so far!

Thanks to Aunt Carol and Gramma Liz for helping with the little ones
and thanks to Grandma and Grandpa B. for coming up Sunday to help out!! We're blessed to have so many amazing family and friends to help us in times of need!

Here are some pictures from her hospital stay!

Listening to her headphones! 

Thanks to Uncle Mike and Aunt Carol we have another iPod to use so we didn't have to steal Mila's!

Lots of sleeping :)

Our favorite nurse printed off some Minnie coloring pages :)

Zoya loved her room service...so much in fact, she would only eat the first morning home if we put a lid on her meal HAHA! 

She loved riding in the wheelchair to her new room! 

I had to laugh. She got a glove, crawled in bed with her bear, grabbed a purple crayon and was doing a blood draw from her bear. I figured we'd been there long enough at that point :( 

Lunch! Mashed potatoes and baked chicken with chocolate ice cream for dessert! 

She was getting stir crazy and found a fun hiding place HA!

A short nap while we waited for an xray.

And finally, home we go! 

Here was her "I'll only eat with a lid" breakfast :) 

Last night Zoya's teacher and classroom assistant stopped by to give her some hugs and bring this sweet get well poster from her class. 

The Spitz Family also stopped by for a little playdate last night but with all the craziness we didn't get any pictures. The ONLY way I could get Zoya through some of the blood draws was promising her she'd see "Sara and Gavin." She talked about the two of them so much that the nurses asked if they were her brother and sister. She forgot about her real sisters, apparently :) We even made up a song that went like this, "Sara and Gavin love Miss Zoya, Sara and Gavin want to play...." (repeat). We sang it through her blood draws and owies. So we were thankful for their visit since Zoya did NOT forget that I promised her she could see them! Here's hoping we're done with this sickness once and for all!