Sunday, May 28, 2017

Memorial Weekend Update

As usual, this is your pre-reading warning, this post is coming from David and not Kristi.

While this week has been difficult, it has also had some great moments to it.  It is always illuminating to look back on events and see how God's hand is at work, but unrealized until after the dust settles and we are able to see a better picture of it all.  When Grace went into the ER on Abigail's birthday and the realization set in that her heart was already showing a lot more stress upon it than it had since her echo two days earlier.  Along with this realization came the reality that a commercial flight to Boston was no longer an option; therefore, we were either going to need to take a medical flight to Boston or begin thinking about the possibility of just having surgery here at TCH.  In the past, our surgeries at Boston Children's have been vital because the philosophy behind the procedures being done on Grace was drastically different between the two institutions.  However, now we are facing a valve replacement and both institutions would most likely be putting in the exact same type of valve. Boston Children's is ranked number one in pediatric cardiology and Texas Children's is ranked number two, so it's not like we are at some rinky-dink hospital.  Therefore, it feels like God allowed all of these circumstances to happen, in order for us to consider just having Grace have her valve replaced here at TCH, which wasn't even a thought we were considering prior to this past Wednesday.  As we have prayed and thought about this decision, it seems like a no-brainer to just stay here in Texas, especially as Andrew will probably be heading to Iowa for surgery within the next few weeks, and our family will not have to be separated in three different cities.  In light of this decision, Grace will remain in patient at Texas Children's Hospital with surgery most likely happening this coming week... at least, we hope it will happen this week.  Apparently, the surgery schedule is pretty packed this week, so nobody can give us a potential date at all, but they did confirm that we need to remain in patient as we wait for surgery.  Grace is doing much better at this point, since she has been on IV Lasiks, but if surgery doesn't happen this week, then I fear we will have a stir-crazy kid on our hands.

On to Andrew, he began receiving twice daily injections on Wednesday, with hopes this will help with his pain.  Poor guy, he hates getting these injections and they seem to be rather painful, but after 5 days of having them, his pain does seem to have slightly improved.  Therefore, we are hoping to have him transition to a once monthly injection, rather than twice daily.  In addition, Andrew is now taking methadone and oxycodone for pain management.  While this seems to help, the methadone also makes him rather tired; therefore, any free moment Andrew has, whether in the car or at home, we discover him somewhere catching a quick snooze.  Also, it seems rather crazy that two of our three kids have now been on methadone... now we just pray that Abigail never is in need as well. 

In regards to Andrew's biopsy on Thursday, the Interventional Radiologist was able to get a biopsy of the tissue, but he was unable to verify if it was from the pancreas or if it was from the lymph node; however, the pathologist did confirm that the tissue biopsied was also a Neuroendocrine Tumor.  We will hopefully have the full results from the pathologist by this Tuesday.  Andrew's oncologist and surgeon in Iowa are meeting on Tuesday and we should have an answer from them sometime between Wednesday and Friday as to when they would like to schedule surgery.  It will most likely be scheduled sometime in June.  

Let's not forget about Abigail, she has been such a trooper through everything.  Honestly, it has been so helpful that many of you have come alongside of her and loved her well.  Your love and care for her has really made a difference in her outlook and ability to handle all that is going on around her.  We are thankful for her and continue to be blessed and amazed by her selfless attitude and heart.  Abigail has really kept it all together, with the exception of her birthday, but even then her sadness had nothing to do with herself.  Since Grace and I have been in the hospital, Abigail has been a tremendous member of the team in getting things done at the house: doing the laundry and folding clothes, doing the dishes, and managing Andrew's medicines when we aren't around (not without adult supervision and our instruction, of course).  She hasn't complained about the extra responsibilities, if anything, she is asking for what else she can do.  It seems like the break from soccer came just at the right time for the family craziness.  I know that I just bragged a lot about Abigail, which I didn't realize until I just finished writing this paragraph, but in all honesty, we are really proud of her and thankful for her maturity and character.  We praise God for her heart and little woman she is becoming.

Andrew was able to go on a play date with some sweet friends from our church who have created a special and unique bond with our kids.  We are thankful for Alan and Kathy Hunt!

Andrew off to the movies with Kristi's parents

While Abigail and Kristi had the opportunity to get away to a Houston Dash soccer game!

Thank you for continuing to walk with us on our journey!  We couldn't do it without you and praise God for you!  

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