Sept 2, 2014 -- As the Night Closes

Hello dear ones!  Let me try to give you an update on the last several hours since you last heard from me. . .

We were paged to come and meet the surgeon at about 3:15 pm, however he didn't come out to talk with us until closer to 5 pm.  It was a long couple of hours, waiting and wondering what was going on.

I'll start with the surgeon's report.  He was happy with the surgery overall.  However there was a period of great concern.  As they placed the rods and straightened the spine, Hope spine was so flexible that the first correction they did set off the spinal monitoring alarms. . . her spinal cord was not happy!  They backed off the correction and gave her body a rest to settle and started checking her limbs for spinal cord damage. . . arms were good, but her legs were not!  Hope has a large bruise and the skin scraped right off the bottom of her right foot where they were trying to get a motor response (movement) to pain or reflex response.  They got nothing.  Once the spinal monitoring settled, they attempted a lesser correction, which was successful with no alarms!  They settled for the lesser degree of correction, and finished up the surgery.  However Hope's lower limbs were still not showing the response that they wanted to see.  

Hope actually came out of surgery and to the recovery room at 4 pm.  She took an unusually long time to wake up, which actually is normal for our Hope!  The surgeon continued to explain that he had also waited to try to assess her lower limbs further.  However, he told us that after that hour wait, he would only half check the box, and we would need to still wait longer to see if we could check the box all the way.  The surgeon also told us that they would have to watch her closely for bowel obstruction due to pressure from the superior mesenteric artery.  Again time would tell.

Blood loss was able to be controlled with simply giving her the retrieved blood cells she lost and they were able to collect.  So no blood transfusions were given.  But the news that you all must be waiting to hear. . . and thus the reason I saved it for last  : )  . . . how much did Hope correct in her spine and in her pelvis?  Her pelvis was close to a 30 degree pelvic obliquity. . . she sat on one bum cheek only was how crooked her little pelvis was.  And now. . . Hope corrected to a 12 degree obliquity!  If Hope had been under 15 degrees, then they would not have fused her pelvis as well, so the surgeon was very happy with this outcome.  Finally, Hope's spine was about 126 degrees, 110 degrees at it's very best when she sat up with all her might, prior to surgery.  The surgeon had hoped for a correction to 50 degrees until feeling more stiffness in her spine in June. . . he then changed his hope/expectation to 60 degrees.  Although significantly less, surgery is still considered the only option for a scoliosis curve of 55 degrees or higher.  So I'll be honest, that 60 degrees felt like a big bummer for all that she would be going through, and a higher possibility of revisions.  Well. . . prayer warriors, Hope's spine corrected safely to 35 degrees today!!!  We are thrilled!!!  We don't know what that first correction attempt was, we just know it was even less than 35 degrees, and we feel that it is evident our God touched her spine and granted her flexibility one last time!!!  Prayers matter and God answered mightily today!  The surgeon said that it is his hope that she will not need any revisions down the road with this amount of correction.  Praising God for His grace and mercy on the first of many outcomes to be from this unwanted surgery!

They called us in to come be with Hope after talking to the surgeon at about 5:30 pm, and she was transported to the ICU at about 6 pm.  Settling into the ICU went well, and although extremely groggy and barely audible and understood, Hope was a complete dollie!  Every other thing she said was, "I love you mommy!  I love you daddy!"  I wish I had a recording of how precious it sounded!  She was also full of thank you's to the nurses.  She said she was not in pain, but after a game of 20 questions to figure out what it was. . . "Is something wrong?"  Nod Yes!  "Is it something that I can see?"  Nod Yes!  "Is it on your body?"  Shake No!  "Is it on your legs?"  Shake No!  "Is it on your head?"  Nod Yes!  "Oh, is it the oxygen prongs in your nose?"  Nod Yes!  This girl hates nasal prongs. . . always has and always will.  She kept pulling them off, and finally I asked if we could instead switch to a blow by mask.  It worked just fine, and a very happy Hope removed her oxygen prongs for the last time!  : )  She has done well since with this.  She didn't even need the mask until pain medication was started, but it is working well at this time!  Huge praise as this has been a big issue in the past!

Things seemed to be going well for about an hour, but things stayed busy with lots of assessments and activity.  But as time continued, Hope started to worsen on several fronts.  I'll quickly review these and where things are at now, so you can keep them in prayer, as well as praise the Lord for those that He has settled now. . . 

1.  Nausea and vomiting. . . Hope began to throw up, and has continued to throw up.  She was give medication for nausea at 4 pm and was just able to have it again a short bit ago, but she continues to have nausea and vomiting.  Please pray for this to resolve quickly, especially as continued problems could be a symptom of bowel obstruction as we were warned.  It also can just be a symptom of anesthetic and all she's been through.  This is also a concern in regards to keeping her anti-seizure medication down and keeping seizures controlled.

2.  Thirsty and sore throat. . . Hope is desperately thirsty, especially to quench her sore throat.  Although she has a couple faint bowel sounds, it is not enough yet to progress her to even clear fluids, so she is not allowed to drink at all yet.  She is only allowed a wet mouth swab, which mom is using lots to do mouth care to help.  Although this is for sure better than nothing, it just doesn't cut it.  And even small amounts of water from the mouth swab are not being tolerated as she continues to vomit.  Please pray that her bowel sounds will come back and that nausea/vomiting will subside and then maybe tomorrow she can at least start on some ice chips and sips of clear fluids.  This was one of the fears that Hope expressed to the surgeon this morning. . . that she wouldn't be able to eat or drink for a really long time.

3.  Mucous, mucous, mucous. . . Hope was so congested in the recovery room that the recovery nurse was convinced that she was sick prior to surgery.  When we confirmed that she really was not, but that Hope has a long history of issues with excessive mucous production, from birth through present.  And it still is another theory of what might have happened that sad Dec 14, 2011, as she was having major issues with it then too.  Hope can barely talk, and so coughing is next to impossible, but I wish you could have heard that girlie try her heart out to do so!  She put the 50+ year olds that I used to take care of on the heart surgery unit look like "wimp-olas!"  Okay, yes, that's another made up "Heather" word!  ; )  I asked for suctioning and have continued to work with her on doing her best to bring it up and then helping her with the suction, and she is definitely better now, although still needing occasional help to continue to keep up.  She is at high risk of her lungs filling with fluid and so is fluid restricted at present.

4.  Low blood pressures and weak pulses. . . speaking of fluid restriction. . . as much as the surgeon does not want her to receive too many fluids, her blood pressure was so low, her heart rate elevated and her pulses unpalpable, and even difficult to find with the doppler ultrasound machine.  So the ICU docs decided to go ahead and give a conservative fluid bolus to try to help.  Her blood pressure is still borderline, but has quit dropping.  Her heart rate has come down a little, and her pulses are at least being found on the doppler machine more easily now.

5.  Dreaded blood work pokes. . . Hope is very pale and even her lips go from bluish purple to white (actually white!).  So they ordered blood work and were unable to draw it off her two IV lines.  So she had to get a poke, which turned into two pokes when the first attempt failed after a digging expedition.  But Hope was super duper brave, and the lab technician was wonderful, and God's grace saw her through this major fear of Hope's!  Praising Him for this!  Also praising Him that the results all came back relatively normal with nothing too concerning.  Her hemoglobin, although low, is well above the number she needs to avoid a blood transfusion.

6.  Arterial line lost. . . Hope's arterial line was leaking blood, as well as not working accurately for monitoring her blood pressure.  So after a long procedure of trying to clean and redress the site, which involved a lot of tearing off oodles of tape. . . which if you don't know this about Hope, is rated 10 out of 10 for pain, above most other types of pain such as a mashed/sawed up spine!  And after all she went through to have it re-done, it only continued to spasm and leak blood and not work for monitoring her blood pressure accurately.  So in the end they just had to remove it, which meant another long bout of tape removal. . . ouch!

7.  Vertigo returns and seizures hover. . . Hope started having pretty bad vertigo, even with eye nystagmus involvement (or back and forth rapid eye movement).  She also felt like she was going to have a seizure.  However, even though she has thrown up after every mouth swab, she was able to keep her anti-seizure medication down for 1 hour, 20 mins before throwing up again, so that was great, and hopefully she got the majority of the dose.  The vertigo does seem better now, and she has not complained of near seizures for a while!  Thank you Lord for this protection for her, and praying this will continue.

8.  Pain pain go away, and don't come back another day!. . . although Hope originally complained of very little pain, thanks to the effective epidural, already around 7 pm, Hope started to complain of pain. . . not excruciating though. . . she rated it 5 out of 10.  With the epidural beginning to wearing off significantly at about 6 am, they decided to start pain medicine, so she has a Hydromorphone infusion that has been started.  Thankfully it has been effective for pain control at this time, even with being rolled.  And also wonderful is that her oxygenation has stayed good with the blow by mask support when sleeping!  Please continue to keep pain control in prayer as tomorrow will likely be a much harder day in that regard as the epidural wears off.  And with higher narcotic doses comes the potential for other unwanted side effects.

9.  Low urine output. . . Hope has had very low urine output from the get go.  We have done various trouble shooting based on past experience, but not much improvement at this point.  The surgeon/doctors are not super concerned at this time, as they are limiting fluids, but if it continues, then it will become a big issue.  Please keep this in prayer!

10.  Hope's lower limb motor movement. . . Hope still has no reflex response and also cannot do some assessment tasks, however, some of these things we believe are somewhat brain injury related, as we remember seeing it in the past too.  Although she cannot wiggle her toes on command, we do see her moving her toes when not trying to.  So that's a start.  She is moving her legs now, but her right leg is considerably less so, in movement/coordination and in strength.  Please pray for this to improve and that there will have been no spinal cord damage!

Just a few final things to share.  Hope's back incision looks good so far.  It is starting to swell a bit and has some drainage but is not too concerning at this time.  She was able to start being rolled onto her side at 10 pm tonight, and she has tolerated this wonderfully!  So thankful!  The only bummer is it tends to make her feel sick and she will throw up.  But once settled, she is quite comfortable lying on her side.  She is being assessed and turned every two hours, so sleep is not really happening, more of little rests in between, especially with blood pressures every 30 mins and all the alarms that continue to go off for her blood pressures.  The surgeon will be by tomorrow again.  Tomorrow will hold a lot and so I am praying that we can both get a little bit of sleep through all the interruptions, assessments and alarms.

Overall, dear ones, I am thankful. . . thankful that the surgery is over and now we start the recovery. . . thankful that God has answered prayer, and even though it was a "no" to being miraculously healed, His hand over her is so evident, and we are quite certain, her story is still being written with more joys and triumphs and miracles to come!  The doctor was assessing her tummy tonight and it suddenly struck me how incredibly flat her little tummy was again. . . no more jutting out left rib cage!  When she rolls, there is no curved up ribcage into the hip bone!  Can't wait to see what it looks like when she is upright!  Can't wait to see how much our girlie has "grown" over night!  She's gonna be excited about that!!!  I'm thankful that a surgeon who told us that she would never walk again just a few months ago, now told us today that although their are no guarantees, it will be interesting to see where she goes from here.  I'm thankful for precious family and friends who cared for us today in so many different ways (near and far!), and especially for faithful prayer warriors!

I'm thankful that although it's been a busy, up and down day, Hope over all is doing very well. . . especially as I meet and talk to ICU doctors and nurses who remember us well from the day Hope first arrived fighting a losing battle and her many returns, especially the whole Baclofen pump rescue for a little girl who was yet again knocking at death's door.  They can't believe where she's at now!  One ICU doctor told me how great it was for them to see outcomes like Hope's story, so they can know that sometimes kids can get better. . . THIS much better!  An ICU nurse told me that he was the one that ran the temporary ECMO machine here in Calgary that saved Hope's life and got her safely to Edmonton.  He said he remembers Hope well, and that she was indeed the second surgery that Calgary had done in putting a patient on ECMO.  He said if it had happened much earlier that year, then she wouldn't be alive today.  He admitted they have learned much since then, and that Hope was part of that learning process, but to see where she is at now!  He said his memory of that night and of her is burned into his brain forever.  An ICU resident was reassuring me that they do not give Codeine at all to children at this hospital, when I listed it as an allergy. . . I smiled and said, "I know. . . that's because of what happened to Hope and the medical review that ensued."   It is humbling to be reminded of how many people God has made a part of Hope's story, and how much He has used her life to impact others, even to impact healthcare!  

I will share one last thing with you and then end with a picture of Gabs and Hope before they said goodbye tonight.  I told you in one of my update posts today that one of the last things Hope told me before going into surgery was that she was still hoping and praying that God might see best to heal her back before the doctors eyes, so that surgery would not happen, and her back would remain whole and flexible.  I told you that I asked her if she would still love God if she woke up and that was not the case.  She had answered, "Yes I will!"  As we stood beside Hope's bed in the recovery room, trying our very best to understand what she was trying to say, but not making out most words with out a lot of guessing and yes/no questions, I finally figured out what she was trying to ask.

Mom:  "Oh, are you asking what happened?  Did you have the surgery and is your back fused?"

Hope:  Nods more furiously than she has for anything yet, amidst the extreme grogginess!

Mom:  "Oh sweetie!"  As my eyes well up with tears and my heart sinks for a moment. . . "They did the surgery and your back is fused.  I'm so sorry honey. . . but do you still love God?" 

Hope:  Nods her head as she works hard to also mouth the word, "Yes!"

I am thankful!!!    : )