Five weeks down...1 to go!

Aliyah is doing very well.  She's been off all pain meds for about 3 weeks.  We are continuing the Valium to prevent muscle spasms, which would be painful.  The pressure sore on her heel is much improved!  Under a physician's guidance, we opened and drained the sore about 2 weeks ago.  The skin is now firm and dry and no longer warm or inflamed.

As I'm writing this, I am receiving a Vitamin C IV infusion up in Raleigh.  Over the past several weeks, I have been having headaches that have been increasing in frequency and severity.  Last Friday, I woke up from a nap with the left side of my face itching like crazy...Benadryl had no effect on it.  With accompanying migratory joint pain, headaches, nausea, fatigue, and body temperature regulation problems for a couple days following, I suspected a reemergence of Lyme Disease which I struggled with from 2007 to 2009.  A series of Vitamin C IV infusions back in 2009 finally kicked it out of my system...or so I thought.  I have been on antibiotics for 6 days now.  I had an IV infusion on Wednesday and broke out in hives and intense itching all over within 15 minutes of starting the drip.  None of my doctor's patients have ever had that side effect before.  

Doctor: I really don't think you're allergic to the solution.  May I try an experiment on you?  

Me: Uh...sure.  As long as it will help me feel better.

They temporarily stopped the drip and gave me 8 SAM-e and 8 Calcium/Magnesium tablets to swallow.  Within 20 minutes, the hives started to recede.  The drip was restarted and the hives continued to recede.  No allergy!  Apparently, the IV vitamin C either mobilized specific toxins (environmental, viral, bacterial) that my liver couldn't handle well or too many toxins that overwhelmed my liver.  That's where the supplements were  advantageous...to help the liver detoxify.  So, I had a bunch of bloodwork done this morning to check for tick borne diseases and other possible issues.  I'll have a follow-up appointment with my doctor in 2 to 3 weeks and will continue to take antibiotics and receive weekly IV infusions.  The itchy, prickliness remains on the left side of my face, though it is not as intense as it was the first few days, so I'm able to sleep a little better now.  

Aliyah is back to her happy self and she sleeps very well now.  The rest of our kiddos are very helpful to me and allow me to rest as needed.  I am so thankful for all of you who have lifted us up in prayer, provided meals, occupied the children, picked up supplies, etc. We feel loved and cared for.  I am encouraged and hopeful that the doctor will be able to help me with my health issues.  When I first called to set up an appointment with my specialists, they couldn't see me personally until October 19th!  That was discouraging!  However, they did sign an order that allowed me to get infusions.  Thanks to the "hives" incident, I was able to see my doctor that very day and she's now on top of my case.  

So, Aliyah's cast comes off next Friday.  Hurrah!  I look forward to holding my baby girl on my lap and having some sweet cuddles together without the big purple thing in the way.  Some pain is to be expected upon removal since she's been immobilized for so long.  We'll be bringing pain meds back on board for a little while.  Hopefully, it won't be too bad.  Her smiles bring joy and thankfulness to my heart every day!  I am so thankful to God for the privilege of loving her and caring for her special needs.  She is such a gift...like a little piece of heaven in our home.

One week down...5 to go

As Aliyah's body is going through the healing process, her pain levels ebb and flow.  We are nowhere near getting off the pain meds; the combination of Oxycodone, Tylenol, and Valium are essential for her comfort right now.  The inflammation is continuing to go down which is giving her more wiggle-room in her cast, which I believe is increasing her pain level as she shifts around.  

She is giving us many more smiles, and Nathan even got her to giggle a bit.  He has been a great help to me this week while Randy has been at work and on the days that Jacqueline was unable to come.  He is taller than me and certainly much stronger.  He helps me with all the major repositioning...from bed to bean bag to wheelchair...his pillow-stuffing techniques are improving, too!

We continue to improve our spica cast care/diaper-changing system.  Peppermint Oil is helping our sweet girl continue to smell sweet.  :-)  Come tomorrow morning, we'll have 5 weeks to go.  That cast comes off on Friday, August 21st at 8:45am.  And yes, I'm already preparing to do my happy dance.

Blessings:

- that she's keeping her foods and meds down (I love, love, love her G-tube!)

- meals, visits, running errands, encouraging words, and prayers from friends and family

- that her temperature and heart rate are nearly normal now

- the sore under her arm is healing well

Prayer requests:

- that the pressure sore on her right heel would heal quickly

- that her pain would continue to be managed well

Happy girl!

Happy Girl! from Lynette Embree on Vimeo.

Purple Cement

Since noon yesterday, Aliyah's pain management has been much improved.  In fact, today we started increasing the time between her doses of Oxycodone from 3 to 4 hours.  After we arrived home on Thursday, Randy put his engineering skills to work and designed a spreadsheet that keeps me organized with all of her meds, diaper checks, and repositioning needs.  It eliminates the need for thinking in my deliriously tired state, especially in the middle of the night.  I love how God has given us varied skills and abilities that complement one another as we work together towards meeting the needs of our children.  Here's a peek at my husband's handiwork.  :-)

My dear nurse friend has come to help us the past two days.  I should have mentioned that she was the one who cared for Aliyah for 3 weeks while the rest of us were over in China for Joanna Wenyan's adoption.  Thanks to Jacqueline, I have gotten a 4-hour nap two days in a row!  It makes a world of difference!  Perhaps you can tell by the tone of my blog entries.  :-)  

Besides the improvement in pain management, Aliyah's temperature is reducing as is her heart rate.  When sleeping, her heart rate is down to 125, as compared to 130's and 140's.  We'd like to see it below 110.  The incredible amount of inflammation in her bottom area, because it is so near the injured hip, has started to reduce today.  It peaks at 72 hours, but can last for 7-10 days.  The significant inflammation in combination with 2-3 inch long incisions in the creases of her groin, due to the adductor tendons being lengthened, the surgeons instructions to keep the cast clean and dry, AND Aliyah's ability to tank 418mL of urine in her bladder and let it all out in one fell swoop has caused us great difficulty.  It is bringing on levels of creativity in padding, water-proofing, absorbing, skin protection, and diaper-changing technique that Jacqueline and I didn't know we had.  We are considering doing a spica cast tutorial on YouTube to prevent other families from the headache of all this trial and error.  We figure that we should have all this down to a science by the end of this 6 weeks.

Tummy-time on the beanbag with privacy screen as we check her skin, air out her bum, reinforce the tape and padding, and blow dry the wet cotton under the purple cement, as needed.

We love pillows!!!

Prayer Requests:

- that her heart rate and temperature would continue to lower

- that she would not have any blood clots

- that the skin breakdown under her arm would heal

- that she would be able to cough strongly to clear her throat and lungs

- that her ability to swallow would improve

- that those of us who are repositioning her will not injure our backs

Back Home!

We arrived home around 2:00pm today.  I'm sorry that I was unable to write an update yesterday.  It was CRAZY!  In brief: doctor visits, pain team visits, physical therapy, seatbelt harness fitting, wheelchair fitting, PRAFO fitting, epidural removal, "craft project" to protect cast, Foley catheter removal, bladder scan, repeat catheterization, fever, elevated heart rate, repositioning, meds, myoclonus, and sleep issues.

Seatbelt fitting

Aliyah's first time out of bed!  Yesterday, at 10:30pm.

Checking out the fish tank!

Prayer Requests:

- that her fever would stay down...she is still dealing with mild fever

- that her heart rate would decrease...it is in the 130's and 140's

- pain management...her pain has increased since our return home today

- I am exhausted and rather overwhelmed by the level of care that Aliyah will need with her spica cast over the next 6 weeks.  Please pray for restful sleep for me during those 2 hour blocks of time that I can grab throughout the day/night.

Thankful for the help of friends!

Blessings:

- Our good friend, a nurse, stayed with me during the day and night yesterday at the hospital AND helped us get settled into our home today.  We work well as a team; I nearly cried when she left to go back home this evening.  

- We've had family and friends caring for our 4 other children during the daytime during Aliyah's hospital stay.  

- Aliyah has not responded negatively to being restrained in the cast

- Aliyah gave us some great smiles today!

Post-op Recovery

When we went into Recovery, Aliyah was calm and resting with a green Nasal Airway tube down one nostril.  It helped open up her airway a little bit more, so she could breathe more freely.  The epidural is amazing for pain control!  We are so thankful!  They are giving Aliyah a bit of Fentanyl and Tylenol, as well.  She has been in and out of sleep all afternoon and evening.  When awake, she's been quite weepy.  I think she's feeling somewhat crummy from the anesthesia, has an irritated throat from the intubation, and is missing the familiarity of home and siblings.  She calms when I lay next to her, hold her hand, and sing.  It has been unnecessary to move her yet, because she still has a Foley catheter.  No diaper changes needed until they remove it tomorrow morning.  This should allow us to get a decent amount of sleep tonight!  Starting tomorrow morning, she has to be repositioned and have her diaper changed every 3 hours around the clock to prevent skin breakdown and leakage.  Thank you for your prayers to the Lord on our behalf!  We are thankful to Him for a remarkably good day today!

In Recovery with my green nose tube.  

Out of Surgery

We had our consult with the surgeon at 12:15pm.  He started the conversation with, "Don't be mad at me!  I didn't start operating until 9am."  Apparently, it took an hour-and-a-half to get her IV and epidural in.  Yes, an epidural as well as general anesthesia!  We didn't even know that was an option.  Fewer side effects.  Better pain control.  Pain with this type of surgery can be very severe.  They will leave it in to block her pain until tomorrow morning and then use narcotics, as needed.  

The growth plates in her pelvis were open enough for the doctor to do the surgery as planned.

Please continue to pray that she will not get blood clots.  We will start her back on aspirin tomorrow morning.

We're eagerly waiting to see her in Recovery.  Please continue to pray for good pain control and her tolerance of the spica cast.

Aliyah's Hip Surgery

Today Aliyah is having her first orthopedic surgery due to cerebral palsy.  Although her brain injury at birth is not degenerative, the "misfiring" circuits in the brain cause abnormal muscle tone (tightness) which, with naturally occurring bone growth, can cause deformities of the bone and joint dislocations.  Children who are not mobile have an increased risk of hip dislocation.  In March, Aliyah's orthopedic doctor took an x-ray of her spine to evaluate minor scoliosis that has shown up.  Thankfully, her spine remained the same over a 6-month period of time, but the x-ray also caught an image of her hips.  Her left hip socket is extremely shallow and the upper part of her femur is deformed and not seated in the socket.  Two of her specialists said that it was critical to treat this aggressively before complete dislocation occurs, which causes chronic arthritis and pain.  At the time of the x-ray, she was experiencing no pain.  During the past month, I have noticed increased discomfort.  At times, she can't tolerate laying on her left side and has painful tightness and muscle spasms requiring Valium for sleep.  Today she is having a Pelvic Osteotomy, Femur Osteotomy, and muscle lengthening in 3 tendons.  They are cutting a wedge-shaped piece out of her femur, upper leg bone, so it can be bent down into the socket.  It will be held together with a metal L-shaped plate and two screws.  :-(  They are going to grind down the socket to deepen it, hinge a piece of her pelvic bone over the head of the femur, and will add the wedge of femur-bone to the top of the socket to enlargen it.  The tendons on the inside of both her left and right legs, adductors, will be lengthened, as well as the tendon in front of her left hip.  This will help to prevent the femur from being pulled out of socket again.  Aliyah will be in a spica cast that holds her in a reclined/split position from under the arms down to her ankle on the left side, and down to her knee on the right.  We expect to stay in the hospital two nights; the spica cast will stay on for 6 weeks.

Our sweet muffin sleeping so peacefully at 5am.  Time to go to the hospital!