Friday, September 19, 2014

Christy's 4 month update - Tonsils, Sleeping and Tubes, OH MY!

Fresh Air = Sleepy Girl!
Camping = Double Stroller Time!
You may or may not have noticed that I did not do a "Three Months Home" blog post about Christy, but I did.  I really wanted to do that, but I just didn't have the time, and our camera had gone missing so I couldn't post photos!

So much has happened since my last update on Christy that I can't post it all here, but here are some highlights, and then I'll tell you about her/my first ever sleep study plus updates on her current challenges!

"Wake Up Gi-Gi" (Carese's name for Christy!)
Right after my last "Christy Update" I took Christy in for a weight check.  After her feeding evaluation in July, I realized that she was not gaining weight so on the therapists recommendation I began adding Pediasure to her diet.  After two weeks of doing this I had her weight checked and she had gained 11 oz since she had come home.  So that was working.

Then we left on a long campout.  Our church has a campout every year, but we got up early. This year we arrive on Monday, and the official campout starts on Friday.  Christy did amazingly well at camp, adjusting quickly to the outdoor life.

The only problem was that her crib was right next to my bed.   Before the campout I was aware that she wakened about once a night and at home I would check on her when I heard her rocking her crib (literally) and usually it meant her nose was stuffy.  I'd put a little coconut oil on her nose at the opening of her nostrils to help soften any crusties, and apply some essential oils for nasal congestion and calming and she'd rock herself back to sleep.  I tried rocking her to sleep, but for so many years she has been calming herself to sleep, that if I try to rock her, she wakes completely up and thinks it's time to play....doesn't work at all to put her to sleep again.

Christy's bed right by mommy's
Head = sleep deprived mommy!
Well, it became apparent at camp that Christy was waking many more times than I had been aware, but she would usually comfort herself back to sleep.  But every morning at 4 am sharp, she would wake completely up and start making a lot of noise, between rocking her crib (which would rock the whole trailer) and happy noises as she would see that mommy was right next to her crib.  I would have to work to keep her quiet until she went back to sleep, which usually took 1 1/2 to 2 hours.  Needless to say, I was not getting much sleep at camp, so much so that I had to bail and go home with the girls Saturday so I could get some sleep and not have a complete meltdown at camp!

Christy doing table time, playing with blocks,
as part of her daily therapy/play time at home.
In August Christy and Esther both saw the ENT, Dr Englais (sp?), at Seattle Children's Hospital.  We discussed her snoring and sleep problems.  Esther got exrays to check on her adenoids/possible regrowth but she is all clear!  Christy, however, needs her tonsils out for sure, and the doctor said he was sure she needed her adenoids removed too, but didn't want to exray her for that and just make the final decision during surgery.  We also discussed having this done when she gets her dental work done (did I mention that she needs sedated dental work done due to some cavities?).  She will also get an MRI done when sedated so we have a better idea of the brain damage that resulted in her having Cerebral Palsy or a stroke (we are not sure which she has since we don't know when the brain damage occurred).

She does like to explore her world using her mouth!
The last week of August was our first Post Adoption Report home visit.  We had a social worker from our home study agency come to our home to see how Christy was doing and how well we are caring for her as well as how she is doing in our family!  We got the report back and it was like a pat on the back - she spoke of our family and Christy in glowing terms.  Boy that sure meant a lot to me.  This report should be back from getting apostilled any day now and then I will send it to our adoption agency and they will forward it to the Bulgarian authorities.  These Post Adoption Reports help countries like Bulgaria to determine if it is in the best interest of the children for them to be adopted into families in the U.S. so these reports are vital to the ongoing adoptions for other orphans!

Rachel cutting Christy's nails - Christy does not like this,
but she did give me this great photo between her
complaining and squirming to get away!
Just to see how the dietary changes were working, I had her in for a weight check the day before the home visit and we found that she had gained about a pound since her weight check 4 weeks before - that was great news!

The first week of September was her swallow study.  She did so well, cooperated so nicely, that we were able to get very good information about her swallowing...at least very accurate information.  Christy has major aspiration problems.  She showed laryngeal penetration (fancy term for food going down the wrong tube) on all thicknesses, even pudding.  There is no term for thickness thicker than pudding, so the speech therapist referred to it as paste.  This is not good, not good at all.  Both the speech therapist and Christy's pediatrician are recommending that we place a G-Tube to aid in getting fluids into her, but we are/were hesitant about this.

My happy girl - in the waiting room at
Seattle Children's Sleep Clinic in Bellevue
So, we have been working to get her the proper liquids by giving her apple juice thickened with Thick It to just past pudding thickness.  We were weighing her diapers to see how well she is extracting liquid from her foods/thickened liquids for proper hydration.  If I gave her 1/3 cup of thickened apple juice at each meal, she had more than sufficient output.  But, she has also been struggling to gain weight, so it's a balancing act at getting enough calories into her so adding more fluids (bulk with fewer calories) meant a possible trade off...being hydrated but not gaining weight.  So for two weeks I've been working at this, and it's a struggle and when my life got SUPER busy last week and this week, it was nearly impossible to ensure that she was betting proper nutrition and proper hydration, and as of yesterday the scale said that she had actually lost weight (around 1/2 pound in 2 weeks) when we started adding more fluids....and her reflux has gotten worse too.

Christy all ready for bed - waiting to get hooked up
for her sleep study.  Such a big crib....made me sad
to think of all those years she spent alone in a crib!
Yesterday I met with a nutritionist and we had a long talk about Christy's nutritional struggles.  She watched me feed her lunch while we talked about all of that.  She also recommended placing a G-Tube and we talked at length about the pros and cons of a G-Tube and so much of what she said now makes even more sense, especially after seeing how hard it is to get her properly hydrated when our days are busy.  Yes, the last two weeks were busier than usual, but even taking that into account, it is very time consuming to get enough nutrition into her, and she tires before we are done feeding her and she is refluxing more now due to the greater volume in her stomach at meals.  The nutritionist recommends moving to 6 smaller meals - great idea, but implementing that will be even that much harder for this busy mom. With a G-Tube she can get her in between meals food/liquids via her tube, and just feel her main meals by mouth, and give her fluids at meals through the tube.  It's beginning to sound like the best way to me now.

My beautiful Bulgarian Princess!
I was getting head of thing there...the appointment with the nutritionist was yesterday on our way home from the sleep study and her sleep study set up appointment was on Monday!

On Monday we went to the Everett Children's clinic.  After reviewing Christy's history, and check Christy's stats that day (wide awake and active her O2 stat was only 95%), she said they she was content to wait until after Christy had her tonsils and adenoids out to see if that corrected her sleep problems.  I mentioned that the ENT had called for the sleep study to be done before the surgery so they would know what they were dealing with when she was sedated.  She checked and I was right, so she quickly changed gears and started talking about scheduling the sleep study.  She said that they were scheduling into November, but that she'd put her at the top of the urgent, cancellation list.  She said they would call me tomorrow.  I got the call an hour later and they said they were scheduling into January, but that they had a cancellation for Wednesday night....I jumped on that one!

The cool, light up welcome sign
- doubles as a nightlight!
Fast Forward to yesterday!  We left early for the trip to Bellevue (about 1 1/2 hour drive in perfect traffic), around 3 pm, so I could have dinner with a friend/adoptive mom before the check in time of 7 pm.  We checked in after I got lots of exercise finding the clinic (left the instruction in the car and there was only one sign that I did not read completely as I thought there would be more signs on where to go).  They wanted me to bring her in to discuss the results a couple of weeks after the sleep study, but  was able to turn that into a phone call scheduled since we live so far away, phew!  If there was anything that caused concern, they would call us in two days to discuss that - so far, no phone calls!

After check in, we were shown to our room, and on the way the nurse pointed out an area where there were drinks and snacks that were available to us for free (which I was unable to take advantage of, except for a cup of coffee on the way out - but it was pretty good coffee!).  Then we got down to the business of filling out forms and getting Christy ready for bed.  She looked so tiny in the big crib!  She does not look like a 4 year old!

"Watch this - I can do the magic table cloth trick!"
Yeah, not a happy Christy...
Once I was done and she was ready, the wiring began!  They stuck things to her head for the EEG and then wrapped her head like a war wound victim and then a kind of stocking thing over all of that.  Then she put on waste bands to measure her work of breathing, monitors to her legs to check for restless leg movements and the PulseOx to her toe.  Lastly they attached a nasal canula that had things attached to monitor her breathing through her nose and mouth - this did not go over well with Christy at all!   After everything was attached, the gazillion wires were held together like a big pony tail down her back.

What does the hand say about the nasal canula?  NO!
Overall, Christy took it all in stride.  But her method or rocking herself to sleep, and moving in many different positions as she does this made things difficult.  As she would get close to sleep, some electrode or another would come off.  They also ended up with the PulsOx on three extremities trying to get a better reading, but 95% seemed to just be her best reading.  After 1 1/2 hours, she finally fell asleep...with that "hat" pretty much off her head.  Around 1 am she started into her waking/rocking herself to sleep pattern.  At one point they nurses had to come in and try to put the stuff on her head back on.  It lasted a little while.  At some point they added two additional waist band monitors too.

They ended up waking her up completely and making her unhappy with them twice in order to adjust things (mostly her nasal canula thing).  I got some sleep, but not much.  I heard Christy stop breathing many time, but usually for less than 10 seconds, so I am really curious about the results.  At 6 am it was wake up time (we had no choice and it was a bit shocking!).  Christy was a wired mess and looked like she had been tumbled in a dryer overnight!  It took a while for the nurse to removed everything, but overall, Christy just hung out and tolerated it all beautifully.....right up until I was washing her hair in the sink (no counter).

Finally we were ready.  Christy still had weird substances in her hair, but I put most of it into a half ponytail and that hid the worst of the problems....what I really needed was some detangler or conditioner (the hospital provided baby shampoo).

Christy ready to go home - did the best I
could with her hair as I couldn't get all the
gel out without traumatizing her!
We made a hasty get away, and I headed north - stopping to do the family shopping halfway home (she had taken a short nap on that portion of the journey).  Christy also had a physical therapy session late in the morning.  There we discussed acquiring braces/DAFOs for Christy to get her set up for weight bearing/gate training/walking practice.  Then I met Daryl for lunch (had only seen him for 10 minutes since Sunday night!), and then Christy and I were off to the nutritionist appointment.

So I'm editing to add that I just found out that the Sleep Clinic called yesterday.  I was able to talk to a nurse about her sleep study results already.  Christy does have obstructive sleep apnea.  Her O2 stats were on the low side, but not of urgent concern.  The study showed that she wakes often, but did experience REM sleep and deep sleep at least for  little while.  Thankfully, they believe that her tonsillectomy might correct this problem.  So we are moving forward with scheduling her surgery.  She will be having a tonsillectomy, adenoidectomy, dental work,  MRI and G-Tube placement all at one time so she only has to go under general anesthesia once (she was intubated for 5 days following her open heart surgery, so there is concern).  I still have many phone calls to make!

Wow - I feel like God gave me a cushion of time with Christy without any major medical issues.  That cushion is now gone.  It's time to get down to business.  Time to address her issues and work to make her life as pleasant as possible and enabling her to grow and develop and sleep (sleep is so important for growth and development, and so is proper nutrition and hydration)!

All Tuckered out - taking a nap on the way home!


I am excited about what the future may hold for Christy.  She has been doing so well - learning new things, actively exploring her new world and interacting with her new family.  Just think how much better she will do when she is not being hampered by her health issues!

I am also overwhelmed, but I've had two of the most incredibly busy weeks of my life.  Next week the only thing on my calendar is Christy and Esther's therapy sessions on Tuesday.  But that might change - I am making the phone call today about Christy getting a  G-Tube.