Hello dear prayer warriors! It has been an eventful day and I'm finally getting a quick few minutes to send you updates for prayer needs. . .
After I shared last with you, the Lord poured His answer to your prayers in the form of grace, even if just for a couple hours. . . it was precious! After I typed the post, I tried to sneak her oxygen on as the alarms continued to ring off. She woke up and my hopes quickly waned. . . however, our precious little girlie was so sweet and allowed me to put the oxygen on even though she said that it made her feel sick. Then she sweetly kissed my head as I sat at her bedside with my head laid down beside her on the bed. . . and then she drifted off to sleep for about 1.5 hours! The alarm continued to go off here and there but with our Scripture lullaby CD on, it was enough to drown out enough noise for two exhausted girls to get a little sleep. I slept from 5-6 am. Hope awoke at 6 am with the nurse's assessment. She pulled off her oxygen and with in a minute or two, she began to throw up.
Hope's nausea continued for the rest of the morning including another large emesis. And with all of this, even with oxygen, Hope's oxygen saturations continued to fall. It made no sense to force her to wear something that seemed to be doing nothing for her and Hope felt it was making her sick. But raising the oxygen saturation levels became the priority as her sats dipped down into the 70's. Her lips turned a purplish blue colour. Unsure of what else to do other than oxygen via a face mask which Hope absolutely refused, the suggestion was made to turn down the Morphine in case it was causing the oxygen levels to drop. So after thinking about it, I went to the nurse and said that we would go ahead and try decreasing her Morphine.
But in God's grace, while we waited in the room, my mom and I had Hope do some nose breathing and saw it make a difference with a little deeper breaths (although she complained of more pain with breathing deeper) and so felt that we were missing the boat if we turned down the Morphine. . . the issue was not the low oxygen saturations, but the full picture of increased severe pain, heart rate in the 140's, now a full blown brutal headache, and the nausea/throwing up which caused a lot of pain in her abdominal area where her pump once was. We felt that the real issue was poor pain management and asked for pain management to come and assess Hope, and also for an additional pain med option on top of Tylenol and the Morphine to try to get on top of the pain, so Hope could take deeper breaths and thus higher oxygen saturations. By the time the pain management nurse came to offer her assessment and help, we were able to get Hopey to swallow a Tylenol pill and keep it down, she was given Toradol (Ketoralac) IV push, she allowed the oxygen face mask to sit by her face, and we had started Hope's favorite Scripture lullaby music CD. . . before the meds could even have started working. . . Hope settled and everything started to improve. Her lips pinked up, her oxygen levels came up, her heart rate went down, and she rested with pain at a more tolerable level. The pain management nurse was in support of all that was done and agreed that pain management was the real issue to be addressed. So they ordered all those pain meds to be given on a routine basis for now.
Trevor was also with us by this time and we all breathed a huge sigh of relief and thanks as Hopey settled and the crisis was now under control by about noon. She has had a good rest of her afternoon. She is not looking as well nor feeling as well as yesterday. She is quite puffy today from head to toe, but especially her face and neck. She is having a lot more abdominal pain and also significantly increased swelling to the old pump site. . . it has just grown worse and worse as the afternoon has continued. The nurse and I will be looking at it again in a few minutes and then deciding whether to call the doctor/nurse practitioner to come take a look. . . we would like to see this happen as it seems strange to have such significant swelling starting almost 24 hours post op now, and with the increased pain as well. **Update. . . when we checked again just minutes ago, the swelling was down to just the size of the circle where her pump used to be again, as it was this morning. The resident is still going to come take a look so we're thankful for this improvement and for the resident's feedback.
Hope's oxygen levels were good for a while but slowly have started to drop again, along with an increasing heart rate. Her nausea remains under control with the anti-nausea med she was given, but she has only had a portion of the fluids that she was drinking yesterday, so her IV fluids needed to go back up again. She is frustrated as she feels hungry but we don't want to rush her tummy when it's still so uncertain. Hope is not due for more of the Toradol until 7 pm, so I'm praying that the Tylenol she can have in a few minutes will stop the oxygen levels from continuing to drop, and heart rate from continuing to climb, even as she is resting/sleeping right now. . . her alarms are ringing off continuously again.
We would appreciate your continued prayers for our girlie. We were hoping for a better day today, but we are thankful for the Lord pouring His grace and mercies over us, as He always does! One of those graces and mercies has been the precious hospital friends that we have made over this past 2+ years, that have so sweetly stopped by to visit with Hope and catch up. . . some of them have not seen her for a year or two, and so listening to her talk was quite the joy for them! She remembered every one of them and was super thrilled to visit and catch up with them! How precious of them to stop by and take time to come and visit Hope and encourage her with hearts that still care so much! One of her past therapists even sent a taped video message for Hope to hear since she was not able to come in person. . . Fiona and Logan were two of Hope's longest therapist relationships and they are very dear to us all, but especially Hope. . . she beamed as she quickly identified her Fiona's Irish accent and voice, and when she heard her Logan's video message. . . such sweet girls! The little boy in the room next to Hope spent his first day at Hope's old rehab school here at the hospital called Gordon Townsend School (GTS). When he came back from school with the GTS nurse, sweet Rachel, he brought a card that all the GTS staff and he made for Hope with sweet messages and Hope got to visit with her buddy Rachel. We got to catch up with the wonderful physical therapist that was the first to get Hope into a pool and Hope remembered the fun things they did during therapy in the pool! The sweet Contos girls also came and lovingly read to Hope for hours as she rested and soaked in a favorite activity to distract her from the pain and frustration of lying flat for so long! God has so powerfully blessed us with the people He has lovingly placed around us throughout this journey. . . including each and every one of YOU!!!
I'll share just one last thing with you, before I run to care for Hope. . . another very special visitor today was Sara, one of the music therapists here at the children's hospital. Sara would come and spend special one on one time with Hope in her room when she was so sick and completely unable to communicate or interact with us. Sara, who is a beautiful talented singer and musician, would sing special songs with Hope and Hope would try everything she could to try to even just make a noise to sing along with her. . . that was about two years ago, and now. . . wow, has God ever done an amazing work in our precious girlie and how He used this special young woman to reach Hope with heart and music at a time when Hope was so trapped inside her severely injured brain and body! I thought it would be really sweet to share the video we have from a couple years ago and then a video from their visit today! Those will be at the end of this post. Thank you again, dear ones, for your sweet continued prayers and notes of encouragement! You are such an incredible blessing to us as we wait and trust in the Lord through this time in the hospital! You are so very loved!!! : )
First Video is of Hope and Sara back in 2012 when Hope was still in the hospital. . . she was not able to talk at all back then and it was hard to know how much she was understanding or interacting with you. . . although Hope listened intently and tried so hard to just make noise with Sara as she sang. Hope not only was taking in this experience with great enthusiasm and joy as it ministered to her desire to interact in spite of being trapped inside, but Hope also remembers these times with Sara with great tenderness and detail. A great reminder to always speak to someone, like Hope was back then, assuming that they are hearing you and it really matters!
This second video is from today when Sara stopped by to visit Hope in the hospital again, about 2 years later! Hopey was in pain and nervous, but you can still tell how much she loves Sara and her beautiful voice and music and sings along with her! Hope remembers the words to these songs from when she sang with Sara! Incredible and precious!!!
And the third and final video, also from today's visit with Sara, is a precious finale to the special relationship these two have and the gift that God has given us in music and how it can reach into the hearts and minds of people, even those trapped in their mind like Hopey was 2 years ago! Hope still calls both of these beautiful songs, "Sara's Songs!"