Wednesday, May 31, 2006
Finally, I brought up two sippies of warm milk and both of them did not wake up again during the night last night.
My poor husband is having to get up at 5 a.m. the past two mornings to be at a client in Germantown. He was gone yesterday and will most likely be gone today and the rest of the week 12 hours of our day. This makes for an especially long day for me with the boys.
I have been sorely tempted and must confess have not done a great job in the last several days of overcoming these temptations toward anger, bitterness, despair, grumbling, self-centeredness and some more anger. My husband has received the brunt of all of it really, and I'm sure I am not helping him to extend love, mercy and compassion to me; although, he is doing just that.
We continue to covet your prayers for us spiritually along with all the physical stress our circumstances have placed on us.
Today, Judah will be getting his stitches out, God willing, and I'll have an opportunity to follow up with Dr. Carson's P.A. Please pray that Judah's incisions are closed well enough to have his stitches removed and continue to pray for no infections or complications with his shunt.
Monday, May 29, 2006
Judah's pain has been managed on Tylenol alone. We are very grateful he hasn't had to take the narcotic prescribed to him. Thank you, Lord! He and Tucker have done very well leaving his stitches alone for the most part. Judah has been uncomfortable with the stitches on his belly, but he's been able to bear it with just a little TLC from momma.
It seems Judah's appetite is still not quite back to normal, but his diapers are slowly getting back to normal. He has been incredibly pleasant and has managed to not bump his head or belly on anything. Thank you, Lord!
Judah was doing so well that we decided last minute to make a surprise trip to my mom's in PA. Before Judah's surgery was scheduled, we were planning to spend the entire weekend at my folks' house, visiting with all but one of my siblings. Of course, once we heard Judah was going to be having brain surgery, we regretfully cancelled our trip. Due to Lawrence's busy season at work this spring, we hadn't been to see my folks since January, and we were all missing each other sorely. So, we were very grateful that Judah was doing well enough to make a quick trip. Thanks, mom and dad, for hosting us unexpectedly.
Thank you's to:
- Mary Ranneberger: for the yummy meal and cookies, for your prayers and offer for help!
- De: for bringing by some groceries and beautiful flowers from your gardens. I can't wait to bring the boys out to "Mistyglen". And, thank the Lord you did not get sick from us.
- Amy Hollin and your girls: for the cards and the sweet and thoughtfully put together goodie bag for the boys. They loved peeling the tape off the cabinets. Who would've known tape could be so amusing? Amy Hollin would, that's who! Love ya, friend.
- The Chambers: it was fun to laugh with you and to be able to spend some time with you before you leave us for a month!
- Marie: for thinking of us w/ a meal today even though we didn't take you up on it. :)
- our neighbor, Ed, who mowed our front lawn while we were gone!
- my big sis, Nici: the sweet pics. from Conner (he was so good w/ Judah's boo boo!), the yummy cookies and the sing along books for the boys. You have the gift of generosity!!
Thank you for everyone's very meaningful and thoughtful encouragement. We are being carried by your prayers and your faithful encouragement.
Please pray that:
- I can get an appointment to have Judah's stitches taken out this week.
- Judah's 3 wounds will heal well and be ready to have the stitches removed.
- Strength and much grace for this week as Lawrence will probably have some long days at work, and I will be seeking to get our house and lives back to "normal".
- if there are any referrals or authorizations I still need to obtain for full coverage of our medical bills, that I will be aware of that and be able to do that in a timely manner and with little frustration.
Thanks for hanging with us and praying for us! We appreciate you so much.
Friday, May 26, 2006
Judah was discharged today around dinner time. What a blessing to all be home together again. There has been so much upheaval in our lives in the last two weeks, and we're looking forward to laying low this weekend, watching Judah closely and just enjoy being together again.Judah's appetite has returned, but his body doesn't quite seem ready for him to eat a lot. He's thrown up twice today, once this morning and once on our way home from the hospital tonight. We are trying to discern if he's throwing up from eating or from the pain medication he's been on. I'm going to try giving him only Tylenol to get him through the night tonight, and hopefully he'll do well. Hopefully, that will help me determine why he might be throwing up.
I think the boys enjoyed seeing each other again, and they both definitely seemed to enjoy being back in their own home again. Tucker was intrigued by the bandages on Judah's head, and he adopted a new word into his vocabulary tonight: "boo boo". Hopefully, we'll be able to teach him to keep his hands off Judah's boo boo's.
Surgically, there were three cuts total: 2 on his skull and 1 on his belly. Judah seemed to be a bit more bothered tonight than he has been yet by the wound on his belly. And, he was still a bit unsteady when he tried to walk and play around on the floor tonight, I am guessing from the narcotic he's been on. I could tell he wanted to eat, but I was hesitant to give him much. I think he would have really loved a sippy of warm milk, but I held off for one more night.
Please pray that:
- I will be able to discern when/if I need to call the neuro. team at Hopkins re: any potential complications. As if I am not a bit neurotic already about observing him, I was given a new list of things to watch for that might indicate an infection w/ the shunt or shunt failure of some kind.
- I will be able to manage Judah's pain well with just Tylenol and not have to bother with the prescribed narcotic.
- Judah's stomach will tolerate a normal diet soon, and that my little man will get the nourishment he so desperately needs right now.
- Tucker and Judah will leave Judah's "boo boo's" alone and that Judah won't fall on his belly or head.
- There will be no complications with Judah's healing and his body's acceptance of this foreign object in his body.
- The shunt will function properly and keep Judah's ICP (intracranial pressure) normal.
- We will wisely, diligently and with compassion shepherd our boys' hearts through the lot God has assigned to us.
- We will all continue to rest well, nourish our bodies as well as our souls through God's Word to sort of "recover" from the recent upheaval in our life.
Thanks so much for continuing to pray and to leave comments. It means a great deal to us, and we are able to pass on to the boys how much they are loved by God's people. Thank you.
Special thanks today:
- Heather Griger: again for keeping Tucker, for talking through some of the medical end of things with Judah's situation. Boy, am I grateful that neuro. is your specialty. How kind of God to provide you for a friend. And, thanks for that awesome dinner. What a treat!
- Benjamin Kim: for the sweet card and stickers. I can't wait to let Judah play with them.
- Jo Powell and our buddies, Kyle and Liam: for reminding me it was story day at the library and going out for a treat together afterwards. We had a great time as usual with ya'll, and it was nice to do something we normally would do on a Friday (only Judah wasn't with us).
- Kara Beth: It was nice to get your call and to hear about your job. Thanks for making me laugh. It really is the best medicine. :)
I may not post so much this weekend unless there is something that comes up that we might need prayer for. But, thanks for keeping us in your prayers anyway. Having Judah recover at home may prove to be the more challenging part of all of this, but we will have to wait and see how he does.
Thursday, May 25, 2006
Many of you have called or emailed for an update, and I'm sorry it's taken us this long to post something on the blog. Thank you to all who are caring for us and carrying us on your hearts and in your prayers during this time. I'm so sleepy, I have to keep blinking my eyes to clear the fog that keeps forming over my eyes..so, this post is likely to have typos and barely make much sense. I'm also sure I'll leave out many thank you's, but I'll try to get to them later.
Overall, Judah seems to be doing very well (at least I think so even if none of the medical staff is commenting in such a way). It was difficult for Judah to go so long yesterday without food; he became rather tired and weak before surgery, but not weak enough to cooperate with pre-op. exams and prep.
Dr. Carson was going to place the shunt on the right side, but after reviewing Judah's scans a second time decided to place it on the left. The surgery went well; there were no complications. Judah even seems to be doing better with the intubation/extubation than he ever has in the past which is really just remarkable.
Judah was pretty much sleeping or resting until this afternoon. While he slept rather well last night, I did not. His IV line, placed in his foot, kept getting kinked which would set off an alarm on his IV machine. The nurse would have to come in nearly every 10 minutes to re-adjust his foot or unkink the lines (there are about 4 different lines hooked into his IV among other cords for monitors). Also, at a teaching hospital there are always about 20 or more doctors/residents/med. students assigned to a case whose schedules are not really in sinc with normal people's. So, throughout the night, there were several doctors (I quit asking names after a while) in and out of the room. Needless to say, I didn't sleep so well. But, I am home tonight for a brief respite and hopefully will sleep much better. (I'm still hearing the beeping IV alarm go off in my head.)
His IV line was removed this morning b/c it has blown. Thankfully, apart of surgery prep. was to place an additional line in his hand, so everything is being given through that one now. Pray that the IV in his hand does not have to be removed prematurely, too.
I am hoping for a discharge tomorrow. In order for that to happen, Judah's IV fluids will be decreased, and they will watch to see that he is adequately hydrating himself. Also, the pain medicine he's currently receiving through IV will be cut off, and he'll be switched to a different pain medication that he takes orally so that he can take it at home if need be.
Pray that Judah will get his appetite back and hydrate well enough to be sent home. Pray that we'll be able to manage his pain with the oral meds. as well. And, continue to pray for the shunt to function properly and without any complications.
Thank you..we simply can't say it enough. We don't know why we are loved and cared for like we are but that God has lavished His love upon us, and you are just a tangible demonstration of that.
- Jo and Kyle (thanks for lunch and the trucks/books. Kyle, the book you picked out seems to be his new favorite. Good pick, buddy!!)
- Lori Chambers: those wheat crackers were awesome! And, thanks for the walk outside.
- Abuelo (Judah's grandfather): How much he loves the abuelos!!
- De, Missy, Phyllis, Meaghan, Kate, Laurie, Heather, Marie, Peg (wish I could get a hug from you right about now, too): thanks for your calls.
- Chesapeake Community Church staff: thanks so much for the balloons and puppy you had delivered. What a thoughtful gesture, and one of the few words Judah said today was "balls" when he was playing w/ the balloons.
I think there must be more, but I just found myself trying to pry my eyelids open with my fingers...that is a sure sign it's time for bed.
Tuesday, May 23, 2006
My friend, Karen, encouraged me tonight with this thought, "God has not brought us this far to leave or forsake us now." I'm hanging onto that tonight as I try to rest my head on the pillow and tomorrow when we're 'in the heat' of it all.
Here's the scoop for tomorrow, or at least what we know thus far.
We will be arriving to the hospital around noon, surgery to take place at 2 p.m. It's typically a 2 hour surgery with a 2-3 day hospital stay afterward. Judah can have nothing to eat or drink after midnight tonight. We are leaving Tucker with our good friend, Heather, for tomorrow and then Lawrence and I will be switching back and forth to keep Tucker at home for the remaining time Judah is in the hospital.
Please pray that:
- Judah will fare well with anesthesia, recover quickly and without complications from surgery.
- God will give Dr. Carson and all other dr's involved in Judah's case wisdom and skill to bring healing to Judah.
- God would sustain Lawrence and me in every way through His truth and His provision.
- God would give a special grace to Tucker and whoever watches him while we're at the hospital with Judah. This has been rough on him, too, and he is definitely letting us know that.
- We would have a song of gladness in our hearts for the mercy God pours out on our lives, and that we would see tangible evidence of that mercy.
- We would remain steadfast in our trust of God no matter what the outcome and desire His glory above all else.
For those who have asked how to serve us practically during this time, some suggestions might be:
- Pray, pray, pray. Fast and pray. Praise God through song and pray. There's nothing impractical about it. :)
- If you come across a scripture or a quote that encourages you, it may encourage us, too. Email it to us or send it in a card; leave it as a comment on our blog. I have told a few friends today that one does not need to have had a son who has gone through brain surgery in order to know how to encourage us. One simply needs to know God's truth and share it with us. We know it, too, but in these times, we need reminded again and again, sometimes many times within even an hour's time.
- If you're really up for a trip to the city, consider visiting us while we're at the hospital. It would probably be good to call us first, though, just so that we can make sure it's a good time for you to make the trip.
- As far as meals (some of you really want to cook for us), I'm hesitant to ask anyone to make an entire meal for us as I'm not sure where we'll be, who will be home to eat it, and whether or not we'll even feel like eating (well, me anyway; Lawrence pretty much always feels like eating). Let's say if you really want to make us a meal, let us know or Heather Griger, and we'll try to let you know when it would be best to do so. It might be better to think in terms of making us a "plate" of food rather than an entire meal or providing small, healthy snacks to bring to the hospital if you come.
We have thanked God again and again for surrounding us with His love, care and mercy in the last week as mostly demonstrated through you. There were numerous times today when I was mentally, emotionally and spiritually losing my grip, so to speak. Each time, God prompted someone to call and encourage me or pray for me. It was like He extended His arms to pick me back up off the floor again (sometimes literally) to keep on walking in His Spirit and to keep on doing good when I was weary. Thank you!
Some day, my sons will also thank you. Their lives are greatly impacted by your love and prayers. I look forward to the day when they can thank you themselves.
I received a call from our neurologist this morning to tell me that she was recommending one more preliminary test called an angiogram before Judah has surgery. If it's decided that Judah should have this done, his surgery will most likely be postponed. Judah's case is somewhat unique as this type of surgery has never been done on a SWS patient per our neurologist, Dr. Comi. Judah's vascular system in his brain may present atypical complications thereby making the angiogram a good idea as that would provide the best "roadmap" for surgery. The decision is ultimately up to the surgeon, Dr. Carson, who will be reviewing Judah's scans and file today.
Please pray that God will give wisdom and certainty to Dr. Carson as to the direction to take re: Judah's case. And, please pray that Lawrence and I will rest in the knowledge that God is ultimately the One who ordains our steps for our good and His glory no matter what is decided.
Monday, May 22, 2006
Please pray Judah's blood has no trouble clotting on its own.
I found myself on the phone a lot with our dr's or their staff. Everyone involved has been very helpful in the midst of what can be a rather overwhelming situation. I have been reassured several times today that the surgery Judah will undergo is rather "routine", and having a world reknown surgeon to do it is even more reassuring. However, ultimately we trust God and His ability to employ whatever means He sees fit to bless and heal our son.
Lawrence and I are still deciding what "the plan" will be for Judah's time in the hospital. I was told today that typically this surgery lasts two hours and has a two day hospital stay. We heard from a few folks today offering to help in practical ways, and we are so very grateful to you. We will be sure to let you know if there is any practical way to help once we've put our heads together and devised the best course of action for serving our family through this time.
Please pray that Lawrence and I will seek wisdom from God, come to an agreement about how to proceed, and then humbly enlist whatever help we feel we need.
It seems Judah may still be having a hard time with his stomach. We heard quite a rumble from his tummy tonight and I changed some pretty yucky diapers today. When his stomach rumbled, my little man just looked up at us with wide eyes and patted his tummy as if to say, "did you hear that; I think it came from here." So sweet he is!
Please pray that Judah will be completely recovered from any stomach bug by Wednesday.
We also shaved both boys' heads tonight in preparation for Judah's surgery. At first it was a bit difficult to see my little man's shaved head as he resembled a cancer patient to me. Judah's head is so big and a bit misshaped; shaving it so close to the scalp allowed us to see just how much Port Wine Stain covers his head. I'm grateful his hair tends to grow quickly. I debated whether to shave Tucker's so closely, but Lawrence felt Tucker would opt to do it himself if he had the choice to show brotherly support. So, we have two bald, little men who are still the cutest things in the world to me. Wish I could post a picture, but we don't have digital! :)
I'm hoping apart from Judah's blood test early in the morning, the packing and other detailed arrangements I'll have to make, that we'll have a more normal day tomorrow.
Pray that Lawrence and I are wise about how we spend our time together and with the boys tomorrow to best prepare everyone for surgery on Wednesday.
Any suggestions? Feel free to comment.
Sunday, May 21, 2006
It started almost as soon as I woke up. Lawrence spent the entire day either sick or recovering from the "24 hr" stomach bug, leaving me to care for the boys on my own. I should have known better than to walk into their room without arming myself with God's truth first or at least humbly saying a prayer for God's help and grace to get me through the day in a way that would glorify Him.
Tucker was especially needy, whining a lot and throwing tantrums, and I took less than a sympathetic posture toward him. My sinful heart was seriously exposed this morning through my son's displays of anger and impatience as my response to him was no different. Lawrence, able to hear the interactions taking place between me and my son all morning long, graciously encouraged me with these words, "Tucker needs to hear and see demonstrated from you that he simply cannot exhaust your love for him."
I am so grateful for my husband who, even from the sickbed, seeks to shepherd my heart and encourage me when I am growing weary of doing good. I knew what he said was true, but I also knew that in my own power, I was not going to be able to do that. I cried out for God's grace, and while Tucker continued to whine and throw tantrums all day, I was a little better postured to endure patiently with him. I still feel quite at a loss at times to know how to respond to him at times, but I'm trying to rest in God's faithfulness to both me and my son when we so quickly come to the end of ourselves.
Also brought to the surface today was a sense of grief over all that Judah has gone through and will be going through. On a wagon ride this morning, my neighbor stopped to talk with me. I walked right by her without saying hello, and she was surprised by my coldness. She asked me about it, and I responded by telling her about our current circumstances and began to cry for the first time since all this began 5 days ago. She was quick to overlook an offense and sought to encourage me, but I walked away seeing that I was falling into self-centeredness and self-pity, even if it was, in my mind, on behalf of my son.
There were many moments during my day that served to show just how much I am still in need of a Savior: angrily responding to my husband's request for me to stay home from an event I wanted to attend, entertaining faithless thoughts regarding our parenting and God's care for our family, giving into self-pity and discouragement when the pharmacist proved to be unhelpful and what I perceived as uncaring to our plight and many, many thoughts today with me in the absolute center of them.
There were other moments where the limitations of my humanity were exposed: lack of wisdom to respond to my sons' needs, an inability to keep committments to serve others in order to serve the more emergent needs of my family, and just a general sense of being out of wack given the lack of normalcy and routine lately.
Where does all this leave me? Desperate still for my Savior to come and be my all sufficient, to be all that I cannot be in my own strength, to pour out more grace still for the forgiveness of my sins and the strength to persevere in doing all that is required of me in this season.
As I went through my day, I became overwhelmed at times by all there is left to redeem in my heart. A sweet gal in our caregroup, Michelle, encouraged me through an email to take time to recount God's faithfulness to our family. As I did so, I was able to put my heart at rest, knowing that God alone is faithful to complete the good work He's begun in me.
Tomorrow, Judah will have a pre-op. physical at our pediatrician's office, and I will be trying to communicate to our doctors in order to gain some more details regarding Judah's upcoming surgery as well as his results from the MRI on Friday.
I want to follow my friend, Emily's example by seeking to thank people by name who have demonstrated in tangible ways God's love and care for us each day. Thank you to:
- Cathy Plack for sending along some yummy, yummy fresh veggies, fruit, dips and sweet treats. It was my first real "meal" after being sick.
- Jo Powell for bringing the food to the "sickies" and for hearing me out on the phone. You are a sweet friend, my dear.
- Laurie, Michelle and Jo Ann (Kate's mom) for your emails: all uniquely encouraging in their own way.
- Gretchen, I've still got your call on our machine. I'll enjoy playing it to hear your comforting voice over and over this week. Maybe we'll see you, too!
- Mom, we miss you a ton. Thanks for hanging on the phone through all the little interruptions to address the boys. Hope it made you feel a little more apart of our lives here.
Please pray that Judah will completely recover from the stomach virus, eat well, stay healthy and be ready for his surgery on Wednesday. Thanks so much.
Saturday, May 20, 2006
I am feeling a lot better than yesterday and was recovered enough to care for the boys when Lawrence fell prey to the stomach virus earlier this evening. He is in bed even as I write. While it would have been really great for Lawrence to have been passed over, we are grateful that he remained well long enough to take Judah to the hospital yesterday and to care for the boys until I regained some strength. God is very kind to us.
Judah seems to still have a touch of the bug as his appetite is less than normal and we're still seeing some nasty diapers. Despite that, he has been his pleasant, normal self. Apart from the bandaid covering his hand where the IV was inserted, one would never know all he's been through in the last several days. He is such a trooper.
We continue to be blessed by your phone calls, emails and comments left here. Lawrence and I spent a couple minutes hearing one another out on how we're both doing with all of this spiritually. As we spoke, we were truly amazed by God's grace, not that we have been free from temptations to grow angry, bitter or anxious, but that God is enabling us to choose His perspective, peace and joy through all that's happening. We are certain that your prayers and encouragement on our behalf is one of the more significant means of grace in our lives right now. So, thank you and keep 'em comin'!!
Friday, May 19, 2006
I have spent most of the day in my bed or bathroom, and I think I'm beginning to see the light at the end of the tunnel. Thank you, LORD! Lawrence managed thus far to remain healthy. Thank you, LORD!!
Lawrence took Judah to the hospital today while I stayed home in bed. Once again, our good friend, De, who seems always ready to serve, came to be with Tucker today, who seems to be doing much better physically. Emotionally is another story. Please keep praying for his little heart. He seems to do well with sitters once mommy and daddy are out of his sight, but when he's around Lawrence or me, he becomes very demanding, clingy and angry. We really need wisdom and grace to know how to practically demonstrate our love for him as well as shepherd his heart through our circumstances.
Judah's trip to the hospital, from my vantage point anyway, went very well. Dr. Carson was able to see him despite his very booked clinic schedule and the emergency surgery he had last night. He decided that Judah will have brain surgery next Wednesday to place a tube shunt in his brain, allowing the excess fluid to drain into his abdomen. The tube shunt will be permanent and account for Judah's growth over his lifetime.
Judah also had an MRI done and right after being put under was able to have an opthamology evaluation as well. Because everything has been happening so quickly, ensuring insurance coverage can get rather tricky. However, we saw God once again come through for us, even down to the last minute. I must recognize what a major means of grace our pediatrician's office has been to us since the boys were born. We see Dr. Claudia Beck with Pediatric Partners, and the office staff has been simply outstanding in helping us, and even at times doing what policy says cannot be done, in order to expedite insurance coverage and make our journey with Judah as stress free as it can be as far as they're concerned.
I was able to speak with some of you today, and I have read our emails and the comments left here. We are really encouraged from hearing from you, and absolutely feel buoyed by your prayers on our behalf. My friend, Laurie, wrote a God-inspired post on her blog regarding the suffering life brings, and I would encourage you to read it. Our friend, Zoanna, wrote this comment to Laurie's post:
"Trials and suffering wean us from this world." How well said. And yet how quickly we want to rush out of our trials and relieve the suffering that others are going through as well. There's a mystery. When we pray, "on earth as it is in heaven," do we want all the gold of heaven and yet still want to hold onto the silver and bronze of earth?
Help us to gain the "gold of heaven" by helping us to fight for God's perspective, God's peace and even God's joy in the midst of these trying circumstances. My mind knows the truth that we are being treated better than we deserve and that even beyond that, we are only experiencing God's goodness and mercy. But, my heart often does not comprehend this. We appreciate you sharing any scripture, quote or encouragement otherwise that might help us fight the good fight of trusting God.
Tangible mercies today:
- our good friend, DE, jumping to serve us by staying with Tucker today. She went above and beyond as always by cleaning our floors, doing many loads of laundry, washing our windows, and who knows what else. How humbling, De, but how much appreciated, my friend. We love you!!
- Lawrence's brother, Sam, who accompanied Lawrence and Judah to the hospital and proved to be a huge help today.
- Dr. Carson fitting us into his busy schedule today and next week for surgery.
- Tucker doing much better health-wise.
- Your many calls, notes and prayers on our behalf.
Please pray that:
- Our entire household will be on the mend soon from the stomach virus, get much needed rest, and that those who served us in the last couple days will not get sick from being around us.
- Judah will not experience asthma complications from being intubated for today's MRI.
- We will be able to get all the authorizations and referrals needed for all the medical services to be covered entirely.
- Judah will be healthy for surgery next week.
- All the doctors involved in Judah's care will confer as to Judah's situation and best course of treatment.
- God will guide Dr's Carson's gifted hands to perform a flawless surgery on Judah next Wednesday.
Please feel free to email us with any questions you might have regarding the medical end of Judah's situation. We may not have answers for you, but your questions might help us think about things we need to ask our doctors. Thank you so much for all your love and care and prayers!
Thursday, May 18, 2006
We arrived at Hopkins' ER around 10 a.m., and it was surprisingly empty. Judah was seen right away. He was given an IV, and blood was drawn. He had a head CT scan a little while later, the results of which looked good overall. He was seen by the opthamologist, a neuro. resident and then took a pretty good nap. Upon waking, he was taken into the ER's OR for a lumbar puncture, the results of which were not so reassuring. Once back into our room, he slept some more on daddy's chest. We had more doctors come in to see us, talk with us, confer with all the other doctors involved in Judah's case, and eventually it was decided that we could come home tonight, to return tomorrow morning for a consult with Dr. Ben Carson, another opthamological evaluation and an MRI scan in the afternoon.
Things that were a challenge today:
- Judah screamed at nearly every medical staff who walked through our door, did not cooperate well for most of the evaluations and proved to be one of the most resistant and strong patients the medical staff had ever dealt with in pediatrics.
- The doctor went through two lumbar kits.
- Even with a double dose of sedation medicine, Judah not only remained awake for the lumbar puncture but also fought through the entire procedure.
- I (Briana) had a splitting headache the entire day which only worsened as the day went on.
- At the end of the day, there is still no firm diagnosis to coincide with the findings of Judah's tests. (Sound familiar, Emily and James? Interesting to see how God is choosing to keep these things hidden in both our children. Won't it be amazing to see how He brings glory to Himself through this?)
In the midst of these and other challenges, Lawrence and I were amazed by the many evidences of God's mercy and care for us today. Some of those were:
- Judah's nurse got the IV in with one try. Judah was actually thrashing about and in his thrashing managed to push the IV right into his vein. The nurse exclaimed, "that was a miracle." We know it was the mercy of God to Judah!
- The opthamologist was able to get a good look into Judah's eyes to confirm our local opth.'s findings from yesterday even while Judah kicked and screamed.
- Judah took a great nap.
- Radiology was able to fit Judah in for a CT scan unusually fast.
- While the test results today were not necessarily good, they did not warrant an overnight stay at the hospital or any immediate intervention.
- Dr. Ben Carson requested for Judah to be squeezed into his clinic schedule in the morning which is a tremendous blessing given his reknown and demands on his time.
- The staff was able to schedule an outpatient MRI for Judah for tomorrow which allowed us to come home tonight. Most of you reading this simply will not know what a true miracle this is. Typically one must schedule outpatient radiology procedures months in advance.
- And, probably the most unheard of blessing was that the ER attending allowed us to take Judah home with his IV in tact. This is never done for patients for a variety of reasons, but liability to the hospital is probably one of the greatest. This requires a little maintenance over night for me, but I was well educated in what to do and what complications would look like with it. The reason this is such a blessing is that Judah won't have to go through the process of being stuck again tomorrow for the anesthesia for his MRI.
We definitely felt tangibly the truth that God goes before us and comes behind us found in Ps. 139, probably the most cherished passage of scripture to me from the time I became pregnant with the boys. The day was not without its stress. Judah's anxious response to the medical staff, the equipment and the evaluations is upsetting at best, but we are trying to entrust his precious little heart to God's care as we are simply at a loss to know well how to bring understanding to his mind and comfort to his heart.
Among all the evidences of God's care, the care expressed by many of you, our friends, is among the most treasured. Our good friend, Dr. Aaron Chambers did not pass up the opportunity to come and see us while he was on duty at the hospital. He came and spoke with us, prayed with us, read over Judah's charts, and made sure those who were caring for Judah knew that he was a close, personal friend of ours, further ensuring quality care for Judah! Thank you, Aaron. And, thanks to your wife, Lori, who calls to see if there's anything she can help us with, who takes our calls when we discover something she can help us with and who faithfully waits at home, praying on behalf of us and our sons.
Thank you to all who called or sent messages to our email, home phone or this blog: De, your encouragement to sing our way through the day was so timely and helpful and Spirit-inspired for sure. We did indeed find ourselves singing our way through much of our day. Thank you, thank you for that encouragement to praise Him through song. Thank you Phyllis, Marie, Gretchen (how incredibly wonderful to hear your voice on our machine when we got home), Jo, Jason and Laurie, our parents, Yvette (who also came to see us in her scrubs before her shift and has made herself available to us tomorrow, too), Michelle (thank you for being so thoughtful to take a caregroup responsibility off my plate. Wow, what a blessing your thoughtfulness is to me), and Marlowe (thanks for leaving a message even though we missed your call. We know how much you love our little guys.)
I must single out one gal in particular though, who simply blows me away again and again with her tangible expressions of love for us. Not just in this instance, but all the time, Heather Griger finds some way to communicate her heart for our family. Sometimes, I'm convinced she sits up at night just thinking up all kinds of creative ways to bless us, but I know this is simply an evidence of God's amazing grace in her life, enabling her to be such a good friend not just to us but to many others. Heather not only kept Tucker all day today, but is keeping him overnight and probably all day tomorrow, too (This is while she has her own 16 month old at home and is 6 months pregnant). She brought a great big firetruck helium balloon for the boys to play with last night and a sweet sign/card for Judah. This morning when we dropped off Tucker, she gave us a little goodie bag with a hysterical card (made me laugh so hard, I cried), 2 pears and a container of trail mix (the only thing I ate all day today). And, if that wasn't enough, she took the liberty to make some calls, pulling her "clout" as a Hopkins nurse, to try to ensure we see Dr. Carson tomorrow morning as soon as possible. Heather, there is simply no way I can ever repay you; I only can be grateful to God for you and spurred on by your example of what covenant friendship looks like between believers. Thank you, friend!
So, the bottom line re: Judah's status:
There does appear to be some measure of intracranial pressure going on in Judah's brain.
There does not appear to be any outward manifestations of that pressure as of yet, which is great news. This gives us an opportunity to be pro-active rather than reactive and hopefully spare Judah from any ill effects from the increased pressure in his brain.
We will be going back to Hopkins tomorrow morning to see the world reknown neurosurgeon, Dr. Ben Carson, our opthamologist at Hopkins, Dr. Parsa, and to have an MRI done in the afternoon.
Please pray that:
- Judah will cooperate for all the evaluations tomorrow.
- There will be some decisive diagnosis and plan for intervention as a result of tomorrow's tests and evals.
- Strength and grace for Lawrence and me.
- Tucker will have another great day with Heather and baby Rudy; strength and grace for Heather who is caring for Tucker.
- We will not have to admit Judah to the hospital for any reason.
Thanks so much. Feel free to call Lawrence or me on our cell phones. We may not be able to answer or return your call, but will try to if we can. Even if we can't, we appreciate your thoughtfulness and concern on our behalf.
Wednesday, May 17, 2006
I took Judah to the opthamologist today for a follow up on some findings from his last EUA which was in February. At that time, the glaucoma surgeon saw some swelling on his optic nerve and suspected intracranial pressure, although unsure whether the swelling was more attributable to the surgery. So, he recommended that we follow up with Judah's opthamologist.
We did so today, and she saw swelling on both of his eyes, confirming Dr. Congdon's findings. She suggested we contact Judah's neurologist to see how she wanted to proceed.
After being in touch with Judah's neurologist, Dr. Comi, it has been decided that Judah will be admitted to the ER tomorrow morning (Thursday) in order to have a head CT Scan done as soon as possible. Following that, he will have an eye exam and a thorough neurological evaluation. If warranted, Judah will be admitted to the hospital in order to have an MRI and possibly a lumbar puncture done on Friday. If the MRI can't be scheduled until next week and it looks like there is no emergent medical need otherwise, we will be sent home until next week when we can get the MRI and lumbar puncture.
Speaking with Dr. Comi this afternoon, she indicated that she cannot speak to the cause of the swelling around his optic nerve for certain until she sees the results from the tests and therefore cannot predict what sort of intervention may be necessary if any. She also said she's never seen this manifest in such a way in SWS patients. She is not certain the swelling is even associated with the SWS and wants to be sure she does not overlook something else that could be going on with Judah, unrelated to his SWS.
While this news is unexpected and causing us to act quickly, we are seeking to be grateful and humbly respond to this new development, knowing that this does not catch God by surprise. We're seeking to affirm the truths of which we've been reminding friends of ours recently who are going through their own set of perplexing and trying circumstances. It's as Lawrence said to me today, "We're not in a sprint with Judah; we're in a long distance run of endurance." So, I'm looking at this as a little bump in the road, and choosing for now and hopefully in a sustained way, to give thanks for the amazing mercy God has shown to us thus far in regards to Judah's health and his care.
We are going to Hopkins where he is so well cared for by many well trained, knowledgable and caring professionals who we see as a major means of grace in our lives. We are calling out for prayer and trust that God hears the cries of His people and sends mercy and grace from Heaven. We are trying to keep perspective, and not "borrow trouble from tomorrow", as my friend Karen is fond of saying.
Judah has been doing wonderfully developmentally, and outwardly shows no signs that there is anything wrong internally. Nevertheless, we are following through with the recommendations given to us by his doctors, and trust God will bring to light what is wrong and how to make it right.
Please pray that:
- There will be no trouble with our insurance covering all the expenses we'll be accruing at hospital.
- Judah will fare well with anesthesia, all the poking and prodding and the potential hospital stay.
- Tucker will do well with his babysitter all day (Thank you, Heather, for being an amazing friend and servant to our family.) Tucker has been going through a really tough time lately with separation anxiety, so the thought of leaving him again and for this length of time is breaking my heart and presents its own temptation to fear for his precious, little heart.
- Judah will not have to be admitted to the hospital, but instead be able to do the MRI and lumbar puncture as an outpatient next week.
- Grace and strength to sustain us for whatever lies ahead.
- We will continue to trust God and shepherd our boys' hearts in a way that affirms God's truths.
- We will be a witness to the watching world of the amazing grace and love of our God.
There are probably other things that should be covered in prayer, but my brain is fried at the moment. I will try to keep this updated as much as possible. Thanks for loving us and praying for us.
Monday, May 15, 2006
I try to limit his appointments to one a week at the most because it is stressful for all involved: trying to find a babysitter, leaving Tucker behind, putting Judah through the waiting and the appointments themselves and just the general drain it has on our energy and productivity here at home. However, I'm choosing to believe that God Sovereignly ordained for these appointments to fall within the same week.
The first appointment is with his opthamologist, Dr. Abrams, on Wednesday. This is to follow up on some findings of concern from his last EUA for his eyes. She needs to dilate his eyes and check for swelling on his optic nerve. This requires a lot of cooperation that I have yet to see Judah offer. I'm setting my expectations low and anticipating that she'll recommend he be put under anesthesia to get a good look at the optic nerve. However, I'm going to ask God and ask you to ask God for a miracle: that Judah will sit still and give Dr. Abrams a good look into his optic nerve. Also, pray there will be no notable swelling as that may indicate intracranial pressure.
The second appointment is with Judah's dermatologist, Dr. Cohen, for a laser treatment on his face. Please pray that my good friend, Heather, and I will be able to apply the numbing cream as quickly and with as little stress to Judah as possible. Pray that Tucker will nap well at Heather's house while Judah and I are gone. As always, pray that I will wisely and with compassion shepherd my sons' hearts through these circumstances and that God's Spirit will fall upon them to give them peace. Pray that the treatment itself will be effective and that Judah will not blister too badly.
Thanks so much for your ongoing prayers on our behalf. We are always in need of them and greatly lifted up by them.
Monday, May 08, 2006
I wanted to give ya'll an update on Judah's most recent EEG and neurological evaluation. Dr. Comi was pleased with Judah's development and concluded that there were no outward signs of seizure and/or stroke activity. His EEG confirmed her evaluation as well. THANK YOU, LORD! However, she did measure his head to be a half centimeter bigger than the last visit, which isn't that much of a jump except that Judah's head is already within the large adult sized head category. Additionally, there were some findings during Judah's last EUA for his eyes that Dr. Comi asked me to follow up with a.s.a.p.
So, after several phone conversations with a couple of Judah's doctors, we have an appointment scheduled for next week, and I will let you in on more of the details of that and ways you can pray for us next Monday.
Today, I wanted to write another post on behalf on my friend, Emily, whose daughter, Alivia, remains undiagnosed but now with outward signs of the apparent infection or disease within. Please continue to pray for James, Emily and Alivia Haughery and feel free to "stop by" the blog Emily has been keeping for the most recent updates.
Some time after Judah was born, I began exposing myself to literature and personal stories about the real and sometimes grave outcome of Sturge Weber Syndrome on one's life. What was also being brought to mind was the reality of my father's death, a man who loved the Lord and lived to serve Him yet died nevertheless of a malignant brain tumor despite our faithful prayers and fervent hope that he would live. I felt too well acquainted with the reality that God sometimes does allow our greatest nightmare to turn into reality, and I hesitated to hope and pray for better outcomes for my son.
At the same time, I knew there is no room in a believer's heart for bitterness or mistrust of God's goodness. He has proven His love for us on the cross and promises furthermore to give us every good thing (Romans 8:32). I did not know how to face the hard truth that Judah could have a very difficult lot assigned to him while also hoping in God and praying to God for a better outcome for his life. It was in the midst of this struggle that God led me to Romans 4, verses 18-21.
In hope he [Abraham] believed against hope, that he should become the father of many nations, as he had been told, “So shall your offspring be.” 19 He did not weaken in faith when he considered his own body, which was as good as dead (since he was about a hundred years old), or when he considered the barrenness of Sarah's womb. 20 No distrust made him waver concerning the promise of God, but he grew strong in his faith as he gave glory to God, 21 fully convinced that God was able to do what he had promised.
As I read this, I felt like Abraham's life was answering my heart's struggle.
He believed against hope.
He faced the facts.
He was 100 years old.
He saw that Sarah's womb was as good as dead.
Abraham did not ignore the reality of his situation, just as I and anyone who walks through any measure of suffering or hardship should not and cannot ignore the reality of our circumstances.
However, the passage also says that
Abraham, in hope, believed God's promise.
He did not weaken in faith.
He did not waver through unbelief.
He gave glory to God.
He was fully persuaded that God had the power to do what He promised.
Now, it was clear what God had promised Abraham: that through his seed, he'd become the father of many nations. God sent an angel to Abraham to reveal this promise. However, God did not send an angel to reveal any specific promises to me regarding Judah's health and well being. As I wrestled with the Lord, I began to see that the promises I wanted to hear from God appealed more to my flesh than to God's glory. I wanted God to promise me that Judah's brain would be alright for his entire life and that Judah would not lose his eyesight. I wanted God to promise me that Judah's skin would clear up and that he would someday marry a woman who would love him for everything he is and everything he's not. I wanted God to promise me that my son would have friends who would care for him, support him and love him unconditionally.
As I searched the scriptures, I did not find God promising me any of these things. But what I found was better. I found that God's promises offered hope and healing to something deeper, my soul. I found that His promises invited me into a reality where He is glorified and I am most happy when that is true. As I searched through His Word, desperate for promises to sustain my soul and to help guard my heart from bitterness, I found that I have so much to be thankful for and that no matter what the outcome may be for Judah, I can have hope and peace and humbly resign to God's choice for us. I found and continue to see that God knows better than me.
It is not wrong to pray for Judah's complete physical healing, and in fact we do so every night before we tuck the boys into bed. It is not wrong to hope for all the things I mentioned above. But, for me, I had to come to the point where I could, along with Abraham, face the facts of all that Judah's SWS might mean for us while not wavering through unbelief and not weakening in faith. I had to come to the point where I could regard the promises of God found in His Word and bring glory to His name by humbling resigning to His gracious and merciful ways with us.
If you are in the midst of trying circumstances, my prayer is that wherever you are in the process of facing the facts, you will REGARD THE PROMISES of God, BE STRENGTHENED in your faith and GIVE GLORY to GOD, fully persuaded that God has the power to do what He has promised.