Thursday, March 31, 2011
More Tests/More Prayers for Miss Selah
Selah must fast for 3 hours prior to the sonogram of her abdomen, but I think she'll be just fine. She's fasted for 10 hours before, so that makes it feel like 3 hours will be a cinch!
For those who are unfamiliar with VP shunts (like I was!), the shunt is placed in a ventricle in the brain, and it has , which drains excess CSF (cerebral spinal fluid) into the abdominal cavity (peritoneal cavity), where it is reabsorbed into the body. (A simple explanation of hydrocephalus is the presence of an excessive amount of CSF in the ventricles of the brain, and if not continuously drained, it will make the head swell and cause all sorts of problems.) The VP (ventriculoperitoneal) shunt runs from the brain, outside the skull, and then the tubing is tunneled down under the skin, along the neck and chest all the way down to the abdominal cavity. In infants, they put several feet of shunt tubing so that as the child grows, the tubing will unwind and grow with the child so that they don't have to replace the shunt each time the child grows significantly.
Some of the possibilities with stomach pain after a VP shunt is placed include scar tissue, infection, cysts, discomfort from the CSF fluid draining into the abdomen, discomfort from the shunt tubing in the abdominal cavity, and there's also a possibility that the shunt tubing can wrap around an organ, such as the liver, and cause extreme pain.
Several people left comments regarding constipation, but this is not pain due to constipation. We have Selah on Miralax, which has kept her regular in her bowel movements. This pain is different, but the good news is that Selah has had a really good, calm last 24 hours. (Ever since I posted the prayer request regarding Selah's tummy issues, things have been good!!! Thank you, Jesus!!!) Wednesday night, Selah only woke once at 3AM, and then she went back to sleep after I patted her for a few minutes. When I woke Thursday morning, I was REJOICING that I had gotten almost 8 hours of sleep!!! HALLELUJAH!!! Oh, it feels just delightful to have a full night's rest, and it makes my heart smile to see Selah not having these pains. I am so grateful for your prayers, and sooooooo thrilled that God gifted us with a good chunk of peaceful rest and 24 hours of pain-free time!
I pray God healed whatever was causing Selah's tummy issues, but if there's still something going on, I pray that the CT scan and sonogram will reveal any possible issues. Thank you for joining me in lifting Selah up to our Father. I'm so grateful for all of you. I really am. There's nothing more powerful than prayer, and I feel so very blessed to have an army of prayer warriors always standing in the gap for our family. Thank you from the depths of our hearts.
PS Don't forget about the GIVEAWAY! If you want a chance to win a free book, be sure to leave your comment on THIS POST by 11:59PM Friday, April 1!
Wednesday, March 30, 2011
Selah's Tummy Issues
Poor Selah has been having horrible stomach pain, to the point of not being able to sleep, day or night. She and I are both exhausted, and I hate to see my little one in pain. I kept thinking her pain was due to her brain surgeries, incisions, adjustments, etc., but now that it's been a full week since her last surgery, I'm beginning to realize that it's not the incisions that are hurting her.
Selah has been exhibiting several signs of severe abdominal pain, and every time I put her to sleep, she wakes within minutes, wrenching in pain, pulling her knees up toward her belly, wiggling and squirming and arching her back, screaming with big crocodile tears. This is not normal for Selah at all.
I called the neurosurgeon's office a few times today to try to discuss the issues with a doctor or nurse. I finally talked to a clinical nurse at 5PM, and she set up an appointment for Selah to be examined in their office by a neurosurgeon tomorrow (March 31) at 1:45PM. Please pray that the neurosurgeon will have compassion, wisdom, and will order whatever tests would help determine the cause of Selah's pain. I would also love to get her quick-acquisition MRI done tomorrow as well (it's currently scheduled for April 5), but I'm not sure if that will be possible. I'd just like to have the doctor take an "inside look" at everything so that I can feel better about how things are working, and Selah can hopefully get relief from her horrible pains.
Before Selah was hospitalized 17 days ago, she was a HAPPY girl. She smiled all of the time, was content, satisfied, joyful, and she slept very well. Now Selah is fussy most of the time, and she is not sleeping AT ALL. Not even at night. She is continually waking up in pain, every 3-5 minutes. It's awful. Poor baby girl. I know that something is not right, given the difference in her personality and sleep patterns, and since Selah cannot tell us what hurts, I must advocate for her and try to get her some answers and relief.
Please pray for Selah's tummy to not hurt, for her doctor's appointment to be productive, and for some much needed sleep. Thank you!
Tuesday, March 29, 2011
Giveaway!
Adoption Parenting may be purchased on Amazon (click HERE) or directly through the publisher (click HERE) for about $30.
If you'd like a chance to WIN a FREE copy of this acclaimed book, just leave a comment here (on this post) that explains why you'd like to win a copy of this book. That's it. A chance to win a $30 book, just for leaving a comment! (Winners will be drawn at random, not based upon quality of your comment. :-) Thank you, Carrie Kitze, for your generosity!!!
You have until the end of this month to leave your comment, and your comment MUST be left on this post. (Please leave only one comment per person.) Giveaway will end at 11:59PM March 31, and the winner will be announced on April Fool's Day (no fooling!).
Monday, March 28, 2011
Monday's Meditation: A Boss Your Heart Message
Friday, March 25, 2011
Prayers Needed for Kirrill
Our God is bigger than this. He promises not to leave us as orphans. Please pray that God will move mountains to get Kirrill home, and that the other families who are also trying to adopt from this same region would be approved. Not one child with Down Syndrome has EVER been allowed to be adopted out of this region in Russia. If the Supreme Court would approve Kirrill's adoption, this would pave the way to rescue many other special needs orphans in this same region.
Pray for Kirrill to come home. Pray for the hearts of his family members here in the US. Pray for the Supreme Court in Russia to have their eyes opened, to have mercy, to be educated with regards to Down Syndrome. Lord Jesus, rescue this precious boy!!!
Welcome Home Selah!
Home Sweet Home
We're sooooooo happy to be home!!! Selah was excited to see all of her siblings. She got bored with just Mommy around at the hospital!
It's 12:1530am now and everyone in the house is asleep. I'm getting ready for bed, and I'm just giddy about having a dark, quiet room with a comfy mattress and fluffy bedding!!! And the best part is that no one will be coming in Selah's room to wake her up, check her vitals, give IV meds, weigh her, or shine the light in her eyes for neuro checks. I'm very much looking forward to peaceful sleep tonight!
Goodnight y'all and thanks for praying! Be sure to lift up praises to our Abba Father! Woohoo! Thank you, Jesus!
Sent from Lorraine's iPhone
Wednesday, March 23, 2011
Sweet Selah
Selah drank 12 ounces of formula around 6:30pm, which is all she's had the entire day. She's been conked out most all afternoon and evening, but we woke her for meds this evening and she was STARVING. She gulped down all 12 ounces in about 10 minutes, including burp time!!! She wanted more but we were afraid she'd get sick after so much anesthesia and no food all day.
Oh how delightful it feels to have Selah in our arms again. The only tube attached to her body is her IV. Yay! We're allowed to hold her and love on her and burp her on our shoulder and rock her! We take these things for granted until we're not able to do them, ao I'm praising God for all our blessings tonight. Our cup is overflowing!
Selah will have to have neuro and vital checks every 4 hours, plus be woken for meds each time they are due. her IV is still working, so I hope this one will hold up until she's released. It took the anesthesiology team 2 tries ti get an IV, while Selah was already sleeping from the gas mask. I'm just so thrilled that she's doing well and hopefully we'll get to go home SOON!!!
Pray for good sleep for Selah and Mommy, as well as no complications, no infections, no issues. Pray that the shunt will work perfectly at the current setting, but if it needs to be adjusted that we would catch it and get it fine-tuned before we go home.
Thank you sweet and faithful prayer warriors!
Glory to Jehovah Rapha
Selah is still sleeping. I think the pain meds and anesthesia really wore her out! We were discharged from IMC and placed in the neuro unit, which is less critical, so more shouts of praise to our Father who is mighty and able to do all things. Oh how we praise Him for this successful surgery. Hallelujah!
Thanks so much for praying!
Pic below: Look how many blessings we have! This is 10 days worth of living in the hospital. Thank you all who generously brought treats and care packages. We love you!!!
Holding Selah Now
Sent from Lorraine's iPhone
Selah's out of surgery!
Sent from Lorraine's iPhone
Tuesday, March 22, 2011
Selah's Having Surgery Wednesday at 11AM!
Selah didn't sleep well last night either (2nd night in a row of very little sleep), but she had a GREAT day today! My sister came to stay with Selah for a few hours while I went to the Ronald McDonald House to do a little laundry. Then I took a long walk over to a shopping center a few blocks down from the hospital. Shortly after I had entered the first store, my sister called to tell me that Dr. George had stopped by the room to visit with me. AGGGHHHHHH!!! I rarely leave Selah, and the doctor I've been longing to visit with just happened to stop by while I was GONE! My sister asked him to come back, and he said he would, so I abandoned my shopping cart and sprinted back (in flip-flops) to the hospital. I got back around 1:15PM (I think) only to find that Dr. George didn't make it back by here until around 6PM. But that's OK, at least I got to talk to him!!!
My sister brought a portable DVD player to put in Selah's bed to see if it would help occupy her during the times that she's awake. (I had downloaded some Baby Einstein apps onto my iPhone, which Selah LOVED, but I had to stand cribside and hold the phone for hours while Selah soaked in the genius teachings!) So, this afternoon, I plugged in the DVD player and Selah excitedly watched an Elmo DVD over and over and over again!!! Who would have ever thought that I'd be excited about my 5-month-old watching DVD's?!?! Well, let me tell you, after spending 9 days of standing next to Selah's hospital crib for 14+ hours/day, trying to entertain an active baby while keeping her on her back, not rolling over, holding her head still, without picking her up, well, let's just say the DVD system was a godsend!!!!!! I got to sit down for 3 hours today, and I was SOOOOOOOOO excited!!!!!! I had to fight to stay awake during my 3 hour sitting spell because I didn't want to miss Dr. George, but it was heavenly to sit down and rest my throbbing feet.
I fell apart last night and sobbed at 12:15AM. I had worked and worked and worked to try to get Selah to sleep, and finally at midnight, she was out. Then a nurse came in at 12:15AM to start some IV fluids, which woke Selah, and then she didn't go back to sleep. I was SO exhausted from not sleeping the night before that I fell apart. It felt good to sob though, and shortly thereafter, I started bossing my heart and asking God to sync it with His.
The blessings were abundantly popping into my mind, so I asked God to help me praise Him in this storm instead of pitying my lack of sleep. Here are just a few of the blessings that I am praising God for: Selah is alive and thriving. I am able to stay by her side 24/7. I have an awesome husband who works hard so that I can stay home with my children and be by my children's side any time they are in the hospital. All of my other kiddos at home are amazing, they're holding up well without Mommy being home, plus they're doing a a FANTABULOUS job of keeping up with their chores, serving joyfully, and taking care of one another in a way that Jesus would be proud. My friend and our school teacher, Stephanie, is going above and beyond to serve and help our family in ways that I'm not even fully aware of, such as driving our kids to various appointments and activities. Stephanie's daughters, Samantha and Emily, were home for Spring Break and helped tremendously with our kiddos and the ranch. Our family, friends and even strangers bring yummies/gifts to the hospital for us and constantly ask how they can help. Friends have showered blessings upon our family by delivering dinners to our home every single night since Selah has been in the hospital. My in-laws have picked up and delivered our Sam's Click-n-Pull order of the week...twice. People around the world are praying for Selah and our family. We have a large private hospital room. I have an almost real bed (instead of a chair) to sleep in (a pull out couch cushion). I have my pillows from home and my daughter's quilt to sleep with. My hubby brought our large HEPA filter to the hospital room, which helps drown out the myriad of noises, door slams, voices, alarms, beeping, intercoms, announcements, etc. I have a private full bath right here in the room. The hospital and staff are wonderful, always asking if they can get us anything. The hospital grounds are beautiful. The cafeteria delivers meals to the room, and the food is pretty good. The Ronald McDonald House has free laundry facilities. I have more chocolate than I can consume! I am healthy and well, as are my husband and children. Selah is a delight, a blessing of the Lord, and I'm honored to have been chosen to be her mom, and I wouldn't choose to be anywhere else but by her side as long as she's in the hospital.
The list of blessings is infinitely long, but I'm exhausted, so I need to stop the list and get ready for bed now. Selah won't be able to have any formula after midnight, so please pray that she has a good night with peaceful sleep. It'll be a challenge to keep her happy in the morning without being able to rock and bounce her, so extra prayers in that department would be greatly appreciated. And, of course, HUGE prayers for Selah's brain surgery!!! Oh how delightful it would be if there were no complications and we were able to go home Friday!!! (Dr. George said we should be able to go home Friday if there aren't any issues!!!) PTL! Just praying Selah does well and recovers quickly and fully, without complications.
Thank you so much for praying!
Send The Block Family!
Click the video above to "meet" an amazing family. This is the family that Mattie raised $4,000 for their Pass It Forward adoption fund. Mattie read a story over a year ago of how The Block Family ate beans and rice for dinner for an entire month in order to save money so that they could give it to others and help orphans. This family is the real deal. They are all amazing. They are selfless and generous, always supporting other families in their adoptions, advocating for orphans, praying without ceasing, loving the Lord with all their heart, soul, mind, and strength.
The Block Family NEEDS your financial support in order to go to Guatemala. God has called them. They have obeyed, joyfully, saying, "Here am I, send me." Guatemala no longer allows their orphans to be adopted by US families. The orphans NEED The Block Family to show them Jesus, to be His hands and feet to those who appear to be forgotten. They are NOT forgotten. God knows each and every orphan by name, He knows the number of hairs on their heads, and He wants them to know Him and His love in a tangible, real way every day. That is why God's chosen to send The Block Family to Guatemala. They will serve Him with honor and integrity, loving the least of these as He has done for each of us. I am honored to come alongside The Block Family to share their story, with prayers and belief that God will lift up an army of warriors who will support them financially and prayerfully.
Tax deductible giving can be made at:
Commission To Every Nation
Todd and Amy Block
P.O. Box 291307
Kerrville, TX 78029-1307
Online giving here
Thank you so much for your support!!
Monday, March 21, 2011
No Surgery Tuesday
Unfortunately, the neurosurgeons had already gone home for the day by the time Selah was able to get her MRI done. Selah didn't have a pre-scheduled MRI appointment, so she was at the end of the list, which put her in the machine around 5:30PM, too late for the specialists to meet, review, discuss, and make a plan.
This means Selah will NOT have surgery tomorrow (Tuesday).
Dr. Lee (the neurosurgeon who placed Selah's shunt when she was a week old) is booked until Thursday, so he said Thursday would be the soonest that he could do surgery, unless something turns out to be an emergency.
Dr. George (the neurosurgeon who did this current surgery) has been gone for Spring Break, and they're not sure yet what his week looks like.
Meanwhile, we are sitting in a hospital room being interrupted every 15 minutes by someone who doesn't understand how hard it is to get a baby back to sleep when woken every 15 minutes!!!!!! AAGGHHHHH!!!
We don't even know the plan. We don't know if Selah will have to have another catheter placed to drain the other hematoma (assuming she will), and we don't know if/when they'll be able to place a new VP shunt. Dr. Lee said it doesn't matter how big Selah's ventricles are, that he can place the shunt in an area where it will work, but Dr. George disagreed and wants it in a ventricle (where it should be) so that Selah will have a better shot at long-term success with the new shunt.
Dr. Lee said today that it really doesn't matter that much because Selah didn't really even have a brain when she was born, so he just placed the shunt into the massive amount of fluid (3 pounds) in her skull. Once that fluid drained, the brain had space to grow around the shunt that was just floating in a sea of fluid, which then put the shunt in all kinds of crazy places within her brain, where it shouldn't be. That's why Dr. George wants to do a total shunt replacement, and he really wants to get it inserted properly, not just as a make-shift shunt.
Meanwhile, we wait. And wait. And wait. I so hope that tomorrow we'll have a plan. I pray Dr. George will be back, and that he'll come by to visit. (We haven't seen him since the surgery last Monday, March 14.) I know God has a perfect plan in this, I just have to ask Him to help me wait as my patience wears thin due to my sleep-deprived state. I am really missing my children at home, missing my real bed, missing my room where it's quiet and there are few interruptions and the lights go out at night and there are no alarms or cords or wires or middle of the night medicines or IV's or sterile cribs where a baby lies all day and night when she would be held and cuddled and played with for hours on end at home. Missing just picking up my baby girl and loving on her. Missing rocking her to sleep. Missing everything about my "normal" life, as crazy and busy as it usually is, it's what I LOVE.
Longing to be home.
Waiting as patiently as possible for God's perfect plan.
Trusting in His sovereignty, His goodness, His faithfulness.
Thank you for praying.
Updates/Prayer Requests: Baby Mia, Carrington, Selah
Pray for Carrington: You may follow updates of 11 pound, three-year-old Carrington, who just came home from Eastern Europe and is fighting for her life in a Texas hospital, by clicking HERE.
The link on my original post about why I advocate for special needs orphans was incorrect. Please click HERE to read more about the lives of special needs orphans and why it's imperative that we step up to the plate to rescue these precious children. Thanks, Lu, for your compassionate post about why you do what you do, and why so many of us are fighting and advocating and fundraising around-the-clock for orphans. Many times, their lives are at stake. Seriously.
Carrington's first day with her adoptive family in Eastern Europe
Pray for Selah: Selah is awaiting her quick-image MRI, which won't require sedation, although she's never held still, even when they strap her into a papoose and strap her head down. The quick-image MRI's are supposed to take about 10 minutes, but they usually have to re-do Selah's 2-3 times before they can get a good enough image. Selah is STRONG and LOATHES being restrained, bless her heart.
We still don't know the plan for Selah's shunt and hematoma, as the plan cannot be formed without the results of the MRI. I hope they're able to get the MRI done before the team of neurosurgeons retire for the day!!! Selah may or may not be having another brain surgery tomorrow. We'd like to prepare our hearts for her surgery if they are able to move forward at this time, but for now we wait as patiently as we're able with the Lord's provision.
Selah has been fussy since they removed the catheter from her skull/hematoma. We're not sure what the problem is, so I'd really like the MRI done so we'll know if there's internal bleeding, causing another hematoma to form, or if there's something else going on. Selah is usually happy and bubbly and greets everyone (even IV teams!) with a smile (until the needle goes in). She's not been herself since about 4PM yesterday. She didn't sleep well last night either. She stayed up until 2:30AM, then woke back up at 4AM and stayed up until 5:30AM. When I finally got her back to sleep, she was so restless, so I patted her much of the time to try to comfort her. We're operating on not much sleep today, which might be why she's crankier than usual, but it's so hard to tell with a 5-month-old who has tubes and cords all over her body.
I've gotta run because Selah is awake now and fussy.
Pray for Orphans, all 147 Million (or more) of them! They're reliant upon us!!!
Monday's Meditation: A Boss Your Heart Message
Sunday, March 20, 2011
Urgent Prayer for Carrington
Please pray for 3-year-old Carrington, who weighs just 11 pounds. She was just adopted from Eastern Europe, where she had been discarded, but now she is fighting for her life in the USA. Her body had already shut down in EE, in death mode, simply because she was a special needs orphan living in an area where her life was not valued; therefore, she was not cared for.
Click HERE to read why I advocate for God's people to answer His call of living out true religion by caring for orphans in their distress. (James 1:27)
This post will also give you a better idea of why I use the word RESCUE often times when I am advocating for a special needs orphan.
Please pray for sweet little Carrington, as well as her family who loves her dearly. Carrington's family blog is private right now, so you won't be able to follow their story, but I will keep you posted as I am updated.
Selah's Sunday Morning Report
The bedside procedure requires a little anesthesia via IV with Versed, to calm Selah's nerves and make her a little loopy so she won't exactly care that she's getting a tube ripped out of her brain/skull!!! They'll also give topical anesthetic, as they'll have to stitch up the hole after they remove the catheter. This will all be a sterile procedure, but done in our hospital room, so I'll most likely be kicked out of the room to reduce unnecessary germ exposure.
We greatly appreciate everyone's prayers. We are being held up by our loving, faithful, sovereign Abba Father.
Saturday, March 19, 2011
Success!
The nurse shared with me that Selah's sodium levels were dropping so low that it could potentially be life-threatening. She was a stressed nurse, but she worked quickly to get anesthesia to come give it a try since they have the highest success rate with hard sticks.
Now Selah will be able to receive fluids via IV to replace all that she's losing via the external drain of the shunt.
Soooooo relieved and sooooo grateful for this fierce army if prayer warriors.
PS I did leave the room. I had to go into another wing in order to not hear Selah's screams!!!
Sent from Lorraine's iPhone
Selah must have an IV
Sent from Lorraine's iPhone
Selah's Saturday Afternoon Update
The current plan is to repeat a CT scan on Monday morning for the team of neurosurgeons to review. (Only one neurosurgeon is on call this weekend.) They will come up with a plan. More than likely, Selah will have surgery again on Tuesday to pull the existing catheter from her skull, and then drill a new hole into the area where the fluid-filled hematoma is, place a new catheter into it, and then let it slowly drain over a period of days at the hospital.
If the brain ventricles are plump by Tuesday, the neurosurgeon should be able to do the shunt replacement at the same time, but if the ventricles are still collapsed, they will have to wait and do yet another brain surgery after the ventricles are larger in size.
Selah still doesn't have an IV, so I'm praying she won't have any issues that would require an IV between now and Tuesday. (They can insert an IV under anesthesia when they go in to do surgery.) Selah's sodium is a little low on her labs, so she's having to drink basically just salt water. YUCK. If she had an IV, they'd just give her the necessary fluids via IV, but we're trying the oral route for now. Selah does NOT like taking oral meds of any kind, really. She often chokes on them, and she's known for sputtering the liquid back out and blowing raspberries with the medicines as well. UGH!
Selah appears to be constipated again. She didn't poop at all yesterday, and today her tummy has been in pain, still without any poop. She's sleeping right now, so I'm really hoping she'll poop and not be in pain after she awakes.
Selah has to get more blood work at 5PM. They're doing pricks in the heels/fingers and squeezing the blood into viles since they can't get any blood via a vein. She also has to drink the nasty salt water and take some other meds as well at that time. Since she's peacefully sleeping now, in a really deep slumber, I don't expect her to be a very happy patient when 5PM hits. :-(
The oral antibiotics are upsetting Selah's tummy, too, but she really needs to continue taking those 4/x/day to help fight against infection in her brain due to the catheter and hole in her skull.
Please pray for Selah's sodium, electrolytes, and all lab work to stay stable, for her comfort during the pin pricks/squeezing to gather blood for labs, for her constipation to be relieved, for her body to be pain-free, and for complete protection, healing, and restoration for her brain and hematomas.
Thank you!!!
Are You Listening? INSPIRATION!
This courageous, intelligent, sweet young lady, Taylor ("meet" here HERE), is such an amazing inspiration. She has a testimony all of us need to read. Taylor has hydrocephalus. She's in her early 20's now, she speaks English, Spanish, and Arabic, and she's currently serving as a medical missionary. She's been through more than any of us can even fathom, and instead of regretting her struggles and challenges, she is allowing God's glory to shine through her testimony. Please read the Boss Your Heart message that Taylor wrote for me to post here (entitled "Are You Listening?"), and then go read Taylor's post about her call to return to Israel to serve Him and help heal broken hearts (literally). To make a small world even smaller, Taylor worked with some of the medical team members in Kurdistan last summer who Dr. Porisch (Chrissie's cardiologist) also serves with, and she prayed for Chrissie throughout her battle! Taylor knows God is calling her to return to Israel, she is walking in faith, despite her fears and struggles, and she is believing the $4100 in required travel fees/expenses will be provided through God's people who may not be able to serve in Israel, but can certainly help send Taylor to serve as His hands and feet. Please consider helping Taylor get to Israel, and your prayers for her are most certainly appreciated!!!
I have spent most of my life in and out of hospitals. My intended birthday was November 9, but thanks to some medication issues for my mom, I was born four months premature, on July 23. I weighed 1 pound and 12 ounces at birth. At that stage, babies' lungs are not fully developed, and their skin is very thin, almost translucent. They run a high risk of having Cerebral Palsy (nervous system disorder that affects muscles and leaves them tight and weak), Hydrocephalus (buildup of fluid in the skull, the same condition that little Selah has!) and severe mental and physical handicaps. Nineteen years ago in 1991, medical science was nowhere near as good as it is now. I was given a 39% chance of survival. Needless to say, this was a challenging beginning to life. I was born with Hydrocephalus and mild CP, and spent 4 months in the NICU before I could come home.
(Hydrocephalus explanation: https://health.google.com/health/ref/Hydrocephalus)
(CP explanation: https://health.google.com/health/ref/Cerebral+palsy)
In my 19 years of living, I have had 15 surgeries. Most were for my CP (leg muscles) and hydrocephalus (shunt malfunctions and modifications), and there were also a few for strabismus (“lazy eye”) and mild scoliosis (curvature of the spine). And one, in November of 2004, was to remove a brain tumor. It was non-cancerous (a mass of tissue and cells), but its size and location would have caused problems and potentially been fatal if left untreated. Its removal affected the nerves and muscles, and left me with hand tremors and lack of coordination for months. I spent almost four months in physical therapy, re-training myself to hold a fork, tie my shoes, walk, and other important things. That was one of the worst and scariest times of my life.
Hope that doesn’t ever end
Even when the sky is falling
And I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do
That's what faith can do!
Even if you fall sometimes
You will have the strength to rise.”
God has intricately woven together His plans for our lives (Jeremiah 29:11), and if we have faith in Him, He will give us strength and carry us through even the most difficult of circumstances. Are you TRULY listening to God’s plan for your life?
He has called His people to care for the “least of these”, to minister to those around us. Are you ready? When God calls you, will you go? His calling for you may not involve traveling to the other side of the world. He may lead you to serve those people who are right next to you in your own city. Or, maybe you’ll be called to the jungles and mountains of South America or the deserts of the Middle East.
Selah's Saturday Morning Report
My husband came to the hospital for lunch yesterday, and I went over to the Ronald McDonald House to do some laundry. I have chosen not to leave Selah's bedside since she's been admitted, except on Wednesday when my mom stayed by her side while my dad and I went to the Ronald McDonald House for a tour since the hospital gave us day passes. Wow, what an awesome ministry RMH is! Volunteers serve meals for lunch and dinner every day (although I haven't been able to take advantage of that because I don't want to leave Selah to go over there), and they have free laundry facilities with all of the necessary supplies. They also have a playground, playroom, exercise room, and lots of rooms for families to stay overnight for any length of time, as long as their child is in the hospital. It's GREAT!
I walked around the hospital and discovered that the cafeteria here actually has really good/healthy food options. The hospital also has some extraordinary gardens and waterfalls and outdoor pathways, as well as several great playrooms and lots of neat things to keep kids occupied. Of course, Selah can't leave her bed, and as an infant, she doesn't need the playroom, but the options are great for mobile kiddos.
After I finished my laundry, my hubby went back to work, and shortly afterward, I discovered blood on the sheets behind Selah's head, at the site where Selah's catheter exits her skull. I had the nurse call for the neurosurgeon's nurse practitioner to examine further. After removing dressing, cutting hair (that the dressing was stuck to), the nurse practitioner determined that Selah had pulled on her head catheter, which popped the stitches out (it was sutured into place), which caused the catheter to come out of her skull a little bit, which caused bleeding at the puncture/hole, along with some fluid leakage.
This puts Selah at a much higher risk of infection now. (She was already at risk due to having a hole in her head, but this puts her at higher risk.) Since Selah doesn't have an IV, she's not getting IV antibiotics, but she is getting oral antibiotics four times per day. Hopefully that (and lots of prayer!) will keep Selah from getting a brain infection.
The nurse practitioner turned the room into a sterile environment so that she could flush the catheter tubing to make sure Selah's line wasn't clogged. (It hadn't output any fluid in over 24 hours.) She didn't really want to have to do the flush because it's another potential source of infection entering the brain, but it was necessary to determine if the line was clogged. The nurse practitioner kicked me out to reduce the amount of possible infection during the flush, and within a matter of minutes, she discovered the line wasn't clogged. She's just not exactly sure why there hasn't been any output.
Shortly after the nurse practitioner flushed the line, she called me back in to ask if I'd mind assisting her with the cleaning and re-dressing of clean the head wound at the catheter drainage site. I was delighted to come back in to help make Selah feel more secure by having her momma by her side, so I got on the sterile gown, mask, etc. and held Selah down while the nurse practitioner worked on the wound. OUCH! Selah was not happy about that procedure! She is one strong girl, that's for sure! It's amazing how much power and strength this 5-month-old baby has when someone is doing something she doesn't like!
After the nurse practitioner got everything clean and re-dressed, she explained to me that Selah is at an extremely high risk of brain infection right now since the catheter is no longer sutured in place, and there's some leakage at the site. She was going to contact the neurosurgeon as to the plan and get back with me today on what they want to do.
Selah also had labs drawn this morning, so if her levels are off, she may need an IV again so they can replace fluids she's losing through the external drainage via shunt. And if they decide to re-suture the catheter (or if they decide to pull the catheter out), she'll need an IV to get meds administered for either of those procedures. I'm not sure how they'll get an IV in since the PICC team and multiple IV experts didn't have any success after 6 attempts under sonogram! She may need to go to anesthesia to calm her little body down so they can have better chances of getting the IV into a vein, I'm just not sure.
I'll try to give another update later today once I know more. Thanks for praying!!!
Friday, March 18, 2011
Selah's Doing Well
When I stated that Selah had been poked 6 times trying to get an IV in, I should have clarified a bit that this wasn't your normal poke, like when they're trying to draw blood and miss the vein, or the vein rolls, or it collapses. They had a sonogram machine where they could see her veins, and there was only one vein that was a possibility. All of her other veins were too small to get an IV in. So, they used the sonogram machine to guide the MASSIVE needle (poor baby girl!!!), but they could not get it to go into that vein. I cannot even tell you how much blood was dripping out of poor Selah's arm. SIX times. They had to change her sheets afterward. The screaming and wailing and flailing and fighting and kicking was so, so, so very hard to endure for ME, and I wasn't even the one experiencing the pain!!! I felt so horrible not to be able to help my baby girl. I was praying so fervently, even laying hands on Selah and the IV specialists, and one nurse even cried out for God to help her, but nothing. Oh it was horrible. I'm just glad that's all over with now.
As far as I know, Selah won't be getting any more tests done today (Friday). They know there's more to drain from the hematoma still, based upon how much has been collected thus far in the drainage collection, so it's my understanding that they're going to wait until Monday to repeat the CT scan to determine the size of the hematoma as well as the size of the ventricles where they need to place the shunt.
They started Selah on oral antibiotics tonight (since she can't have her IV antibiotics anymore...the antibiotics are to help prevent infection since she has a hole in her skull and her abdomen right now), and it appears that the oral antibiotics are hurting Selah's tummy. She's only had one dose thus far, so maybe it's just something coincidental. Prayerfully, the tummy ache will go away and not be related to the antibiotics, as she must take the antibiotics 4/x/day!
Selah's constipation problems have been resolved through prayer and Miralax! Yay! She went so much today that it went all over the bed! At least her tummy doesn't hurt due to constipation!
Thank you all for praying! We are grateful!