Tuesday, May 31, 2016

Surgery tomorrow!

Good evening to all from the PICU at the University of Minnesota Masonic Children's Hospital! No worries... we are only here for observation as Gracie gets a medication to help her heart pump more effectively during surgery. Her leaky valves are still leaking (as expected) and her very cautious cardiologist is still playing it safe. Of course, we are completely on board with anything to maximize Gracie's safety during this procedure.

We had a surprise visit from our surgeon tonight, we certainly were not expecting to see him on Memorial Day! He came by to check on Gracie and answer any questions we may still have. Our nurses were certainly surprised to see him here and they said we must be VIPs! :)  We laughed but truthfully, that is one of the reasons we choose to continue come here for treatment. There has never been a moment when we felt like Gracie was not their priority. Even if they've needed to make a change or reschedule, it is always done with utmost care and consideration for the events that follow.

Gracie has a had a good day here in the PICU today. She has been spoiled and pampered all day. From having her toenails painted to eating tons of junk food in bed, she has definitely been enjoying the attention from all of the doctors and nurses who visit. Not to mention having her Mom here to baby her. She took a walk around the unit a little while ago, enjoying a nice stretch of the legs while she's still able to.

Surgery is scheduled for 1:30pm tomorrow (2:30pm eastern time) and Gracie will have to have nothing but clear liquids by mouth after midnight, so we are tempting to keep her up late and stuff her belly in the hopes that she will sleep in a little bit tomorrow. The staff here are on board with this plan and ready to protect Gracie from anyone who tries to bust in wake her up early tomorrow. We'll see if it actually happens.... stay tuned.  :)

Tuesday, May 24, 2016


Gracie's hip surgery has been rescheduled for Tuesday 5/31. We are thankful for all of the prayers and cards she has received so far. :)  She is enjoying this extended break and is filling her days with fun and play while she still can. Please continue to keep us all in your prayers as we prepare for the surgery.
I am missing my girl so very much and I am hoping to head to Minneapolis over the weekend. I am still working on rebooking my flight, so please pray that I can do so without too much additional cost.

Much love.

Monday, May 23, 2016

Surgery Postponed...

...for a few days.

I wanted to take a moment to update everyone on Gracie's surgery. Due to some ongoing cardiac issues (Gracie has had leaky heart valves since birth), Gracie's cardiologist has requested that her surgery be moved to the large university children's hospital instead of the specialty hospital so that the cardiac team can be standing by in case any unforseen problems should arise.

*Let me just stop here and say that no issues are expected and we anticipate an uneventful procedure. However, Dr. Braunlin wants to err on the side of caution, and naturally, we do too. So it was agreed that the best course of action at this time would be to change the location of the surgery.*

This all was decided around 7pm tonight, and I was notified that the surgery was canceled as I was entering JAX airport for my flight to Minneapolis. As of right now, we are thinking that the surgery will be scheduled for next week... we hope to know for sure by tomorrow. I postponed my flight (thank you for the full refund, Ana from Southwest!), and headed back home to Lake City in tears... disappointed that I would not kiss my baby girl tonight/tomorrow.

Gracie was mildly disappointed that her mom was not coming tonight, but she was also very happy to have a short reprieve from the impeding surgery meaning more time to play, mingle, visit, and explore the Ronald Mc Donald House with new friends, and also Minneapolis with her dad. Shout out to the RMH who have provided Gracie and her dad with 2 tickets to the Minnesota Twins game Wednesday night!!

However, there is a silent and unexpected hero in this story.  I waited for the bus to take me back to the parking lot, and when it arrived, it was driven by the same man who had dropped me off about 20 minutes earlier. He gave me a strange look when he saw me again, and as he helped me with my bag he looked at me sympathetically and said, "Did you miss your flight or was it canceled?" I told him that neither had happened, but that my daughter's surgery had just been postponed and I would need to reschedule my flight so that I could be there with her. He looked at me with wide eyes and said, "Thank God you found out BEFORE you boarded that flight!"  I realized that he was right, and imagined how I would feel if I learned about this after I had arrived in Minneapolis!  Thank God for the caring and conscientious nature of Gracie's team of physicians and their determination to ensure the best and safest care for Gracie, despite the major inconvenience it surely caused. Thank God for the timing of this news and how the physicians and nurses spent their extra time after-hours to determine this course of action. And thank God that the news reached me (through the persistence of my sweet husband) before I checked my suitcase and boarded the plane. And thank God for Brian, JIA bus driver, for reminding me about the silver lining of my dark cloud this evening. I needed help looking for the bright side, and he did just that.

So friends, stay tuned for an update on when the surgery will be! Also thank you to all who are participating and sharing the Get Well Cards for Gracie page. She and her dad bought a map of the world tonight along with some push pins. She has no idea why yet... :)

I'll post an update soon... please continue to keep us in your prayers.

Sunday, May 15, 2016

Almost 2 years...

...has passed since my last post here. With the connections and ease of Facebook, its difficult to remember to post here. I apologize to those who still come here looking for updates and information.

Happy MPS Awareness Day! May 15th is designated MPS Awareness Day every year! To celebrate, show support for our kids, and raise awareness of MPS we wear #PURPLE! I hope all of our friends have purple on today!

Gracie is now 8 years post-Stem cell transplant for Hurler's Syndrome. Thankfully her engraftment has remained at 100% donor cells after all of these years. We still think of and pray for the anonymous donor mom and child whose umbilical cord cells have flourished in Gracie's little body, giving her a new chance at life.

During the past few years our focus has shifted from saving and extending her lifespan to ensuring the highest quality of life possible despite the damage the Hurler's has done to her body. At age 4, she had double carpal tunnel release of both wrists and 2 trigger digits released from her right hand. So far, her hands have remained stable although she does seem to get tired if her school assignments require extensive writing. Our current issue centers around her hips. Gracie has malformations of both hip balls and sockets caused by her disease. This issue is very common in children with Hurler's and so this is a problem we have been monitoring for quite some time. Over the last year or so, we have noticed Gracie becoming more stiff after sitting for extended periods and after sitting indian-style especially. We have also seen changes in her gait, indicative of some potentially serious threats to her mobility. During her orthopedic appointment last summer, it was discovered that there has been some movement of the balls of her femurs out from the hip sockets. The malformations of the sockets do not hold the balls in properly which is why this is happening. As you can imagine, this present condition can eventually cause severe and debilitating pain, dislocations, and an inability to walk at all. Obviously, we must address this problem soon.

On May 25th, Gracie will undergo surgery to repair these issues. This surgery will very long, very extensive, and carries some very significant risks. Hurler children are notoriously difficult to intubate and are prone to airway swelling if they have breathing tubes placed. Gracie has had numerous surgeries in her short life, and thankfully (knock on wood), her airway has never seemed to be a problem. However, we still have some concern since she has not been under anesthesia for several years, and has seemed to have had more trouble with her asthma more recently. There is also a small chance that a spinal cord accident can occur during the surgery which could cause loss of sensation and paralysis. This has happened only a handful of times, and most recently to a child only a few weeks ago, so we are definitely feeling some stress about this upcoming procedure.

We are praying that Gracie will be able to have both hips done at the same time, utilizing 2 very skilled surgeons, however, we will not know for sure if this will happen until the surgery has started and the extent of her damage has been assessed. Of course, we would like to do them both together to avoid at least 2 additional surgeries. The first surgery is to repair the hips, and the second would be within a year or 2 to remove the corrective instrumentation. Of we have to do each hip separately, we will go from having 2 surgeries to 4, and Gracie's quality of life over the next few years will be affected tremendously by doubling both surgery and recovery time frames.

As I am writing this, Gracie and her dad are on Day 3 of their long journey from Florida to Minneapolis by car. I expect them to make it to the Twin Cities sometime this afternoon. Starting Monday, Gracie will begin her regular yearly follow-up appointments. She will undergo many tests, MRIs, and see all of her specialist physicians who have monitored her care since before her transplant. She will also begin work-ups for her surgery. While she is very much looking forward to seeing her wonderful doctors again, she is getting very anxious about the upcoming surgery. We have attempted to be very honest with her, explaining that she will be in pain, and unable to walk or do things for herself for a while and that she will have to work very hard to get better, but that this will hopefully make her able to get around much more easily and without pain. She is the toughest and bravest girl in the world and we have every confidence that she will once again give Hurler's Syndrome a good kick square in the teeth before she continues to dance her way through life with smiles and joy like she always does.

We are so thankful for our family and friends, far and near, who continue to support, pray for, and love our sweet Gracie. Please also pray for all of us through what will be yet another challenging adventure, for Gracie's baby brother Hank who misses his sister very much and will likely not see her for at least a month, for Dr. Walker- Gracie's orthopedic surgeon, for Jim (Gracie's dad) who will be with her through the entire difficult process of recovery in a place far from home, and for me- the Mommy who will be home working to maintain the health insurance and heartsick to be away from my baby when she needs me. I will be flying up for the surgery itself and staying a few days afterward, but I am not sure when I will be able to return for another visit. However, I am truly thankful for my job and the wonderful people I work with who are so supportive of me.

We'll try our best to keep the blog updated for you to follow along. Keep an eye on Facebook for updates as well. Much love to you all.