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Delightful Doodles

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Delightful Doodles - Page Text Content

S: Stephanie Brandt {CHW}

FC: Stephanie Brandt | Children's Hospital of Wisconsin

1: Shortly after her birth, Stephanie was diagnosed with a connective tissue disorder, Marfan’s Syndrome. However, recent genetic testing confirmed a similar, but different, connective tissue disorder known as Loeys-Dietz Syndrome. Over the course of her life, Steph has undergone corrective surgeries for clubfeet (one on the left foot and three on her right foot); in addition to two spinal surgeries (one for spondylothysis and one for scoliosis). Also, she has had a few other surgeries through the course of her life. Also early in September 2008, Steph got in a bike accident that resulted in a broken jaw, dislocated elbow, and broken thumb. Stephanie loves animals, the outdoors, photography, and typical teenage girl stuff

2: On the morning of October 13, 2008, Stephanie was at school when she began having extreme chest pain, shortness of breath and dizziness. She was taken to Children’s Hospital of Wisconsin by ambulance and was ultimately diagnosed with a severe aortic dissection. Time was of the essence, and the amazing medical staff at Children’s collorated and planned out the best possible surgical options given the less than optimal emergency circumstances. The prognosis was bleak. Steph was in the operating room by approximately 3:00 p.m. and underwent open heart surgery where most of her aorta was replaced with a synthetic one. She left the OR at about 1:00 a.m. when she was wheeled over to the cath lab for a stenting procedure to correct blood flow issues to her lower extremities. By approximately 6:00 a.m., she was in her room in the intensive care unit. Her Left vocal cord and left diaphragm paralysis have presented a few extra challenges toward her recovery.

3: Stephanie had a Caringbridge site, where friends and family could read to keep up with how she was doing. They could also sign her GuestbookThis scrapbook uses exerts from her site. | Caringbridge.org/visit/stephaniebrandt

4: October 20th, 2008 | For Stephanie's 17th Birthday: the PICU nurses decorated her walls with paint.

5: October | Stephanie's first time out of bed

6: Sunday, November 15, 2008 | It's been a long month since Steph's arrival at the hospital, but she continues to work hard at getting strong and healthy (ok, in typical teenage fashion, not always so willingly). She is getting nutrition (Ensure) through an NJ tube (tube that goes through the nose, down and then directly into intestine). She also eats pureed foods and liquids (peaches and chocolate shakes are her fav), but complains it hurts her throat to swallow, due likely to the tube. She gets OT/PT daily and walks further every day with a walker and is working on becoming less reliant on others for routine tasks. Breathing continues to improve. While she had been alternating between using her nasal cannula during the day and her ByPap mask at night. She also continues to have issues with her left lung (remains partially collapsed) and the left diaphram paraylsis does not help with her ability to get enough oxygen into that lung to clear it up. Although xrays and lab results confirm slow, steady improvement in this area too. A recent CT scan showed some continued stretching in the remaining portion of her original aorta. This was concerning enough to the doctors that another stenting procedure has been scheduled for Friday, November 21st.

8: Monday, November 17, 2008 9:15 PM, CST During the past weeks, Steph has had visits at the hospital from the Rockettes and the Packers(see pics)so this morning, shortly after she woke up, Steph asked “is anyone famous coming today?” Well, not famous, but I did happen to know that some of her friends from Tosa were stopping in after school. (Thanks for visiting Mel, Sarah & Megdespite the sudden blizzard). You girls did a great job of keeping Steph entertained and distracted from her relentless requests to “go back to bed.” As mentioned yesterday, the NJ tube did come out today. We did do some eating of real food(some rice & peas, yogurt smoothie, broccoli and spaghetti noodles), but the appetite really just is not quite there. The NG tube will likely go in sometime tomorrow to ensure she continues to receive enough nutrition to gain back the maximum amount of strength before Friday’s procedure. Steph did hurt her right thumb (remember the Sept. bicycle accident) playing catch (with a stuffed animal) during therapy this afternoonhmmm, were they real tears of pain or was she just sick of playing lamb catch? Ok, they did look real. We are hoping to get someone from the hand clinic to stop in and take a look to see if maybe she should have a splint or something??? Overall, it was a good day with maybe 2 or 3 less “I can’ts” than usual. Keep storming ahead Steph we all love you!!!!

9: A visit from the Rockettes

10: Packer pictures go here

11: Monday, November 17, 2008 | During the past weeks, Steph has had visits at the hospital from the Rockettes and the Packers(see pics)so this morning, shortly after she woke up, Steph asked “is anyone famous coming today?” Well, not famous, but I did happen to know that some of her friends from Tosa were stopping in after school. (Thanks for visiting Mel, Sarah & Megdespite the sudden blizzard). You girls did a great job of keeping Steph entertained and distracted from her relentless requests to “go back to bed.” As mentioned yesterday, the NJ tube did come out today. We did do some eating of real food(some rice & peas, yogurt smoothie, broccoli and spaghetti noodles), but the appetite really just is not quite there. The NG tube will likely go in sometime tomorrow to ensure she continues to receive enough nutrition to gain back the maximum amount of strength before Friday’s procedure. Steph did hurt her right thumb (remember the Sept. bicycle accident) playing catch (with a stuffed animal) during therapy this afternoonhmmm, were they real tears of pain or was she just sick of playing lamb catch? Ok, they did look real. We are hoping to get someone from the hand clinic to stop in and take a look to see if maybe she should have a splint or something??? Overall, it was a good day with maybe 2 or 3 less “I can’ts” than usual. Keep storming ahead Steph..we all love you!!!!

12: Steph's friends Melanie, Meg, and Sarah.

13: Wednesday, November 19, 2008 | Direct quotes from Steph: “Hi everyone and thank you for all the notes. I love reading them everyone is so nice! Thank you Pastor P. for the visit.”Hopefully Steph will soon be willing to type in her own journal updates, but for now, at least she is reading her own guestbook. The NG tube did go in today and she complains it hurts. She also claims PT works her too hard! Hmmm, despite her protests it is certainly working because in addition to all her PT/OT work today, she took a good 5-10 min. walk with her nurse, Beth, in addition to a wheelchair ride out of the ICU down to the cafeteria with mom (and Beth) to buy popcorn. Oops, we ran into Dr. Jenson (jaw drremember bike accident) on our way back from the cafeteria and had to assure him the popcorn was for mom and not Steph. Again, we cannot say enough how grateful we are for all the love, generosity and prayers everyone out there continues to shower us with! God bless you all!!!

14: Thursday, November 20, 2008 | Today turned out to be a bit of an upsetting day for Steph. Perhaps a little pre-surgery/procedure funk..which by the way is scheduled for noonish tomorrow, 11/21/08 and is expected to last about 3 hrs.For most of the day, Steph refused to eat or drink, did not want to get out of bed and/or do PT/OT. After a lot of coaching (ok, begging really) she did ultimately accomplish most of what she should have, but did very little eating or drinking. They started her IV fluids early and upped her feeds through her NG tube. Early evening was better spirits-wise and included hair washing, new braids, fresh clothes, etc. Unfortunately, shortly after her labs were drawn tonight, Steph vomitedso on to another change of bedding, clean clothes and a new dose of evening meds. It is now 10:00 p.m. (this hospital computer’s time is off and won’t allow me to change it?), and Steph appears to be sleeping peacefully. My hope and prayers tonight for you dear daughter are for a restful slumber filled with sweet dreams. Luv you...

15: Friday, November 21, 2008 | This morning got off without a hitch. My prayers were answered.Stephanie really slept well and woke up in a very good mood. For some reason, she decided it was fun to say “Luigi,” and would keep repeating it, smile and say, "isn't that fun to say?"and this even before any “happy” medicine.The happies wore off a little by the time we got over to Froedert (she cried twice), but was given some “pre-sedation” medication and was pretty much asleep by the time they were ready for her in the lab. She got into IR/cath lab at about 12:30 p.m. We were told it would take 3-5 hours for the procedure and, as with any procedure, it is not without its risks. However, we know she is being well cared for over there by some of the best docs available...we have a lot of faith in them all. It is currently 2:45 p.m. Will update you as soon as we can. Keep praying!

16: Friday, November 21, 2008 | It’s 4:25 p.m. and we are back in PICU room 22! Everything went great. We were told at the outset that there was a risk for paralysis, but when they extubated Stephanie, she wiggled her toes!!! She popped her eyes open when we got back into her room and she asked, “Am I done yet?” and she wiggled her toes again for the doctor!!! However, not completely out of risk yet for paralysis. Proper blood pressure maintenance will be key now; but so far, so good.In my original journal note I thanked the medical staff at Childrens, but failed to metion the miracle workers at Froedert, too. We are so fortunate and blessed to have the best of the best.Man this has been a long week. Thank you everyone, again, for all your support and prayers. God bless you all!

17: Sunday, November 23, 2008 | Okay, so Stephanie’s sweating, fidgeting and restlessness last night was likely a drug withdrawal from one her meds that was stopped. It was like watching restless leg syndrome to the ninth degree! Can honestly say, hope to never witness that again I know first hand, Stephanie didn’t like it so much either. She is finally sleeping soundly; and she will be sad to find out that she slept right through Pastor Kuehl’s visit this morning. Hopefully after this nap, she will be ready to face the day and work hard at getting strong. It is rumored that if all goes well in the next couple of days, Stephanie may even be able to leave the PICU sometime later in the week. Let’s pray for that event.

18: Monday, November 24, 2008 | Visit from baby Aiden, Carleen, and Grandma

19: Picture of me and Karly goes here

20: Thursday, November 27, 2008 | Yes, it is true, Stephanie is out of PICU! It has been quite the journey filled with many peaks and valleys that included her initial all nighter in the OR and cath lab upon her arrival on October 13th through the morning of the 14th, two additional trips to the OR and two additional trips to the cath lab. Wow, Stephanie, you have defied the odds and are still shouting, “here I am, now leave me alone,” albeit in soft whisper. Well, after 44 nights in PICU, Stephanie is now on the 4th floor, room 444 J

21: Karly | Beth | Karly and Beth were Stephanie's primary nurses in the PICU. They were both very different. Karly was more laid back, while beth was high strong. Stephanie loved them both, very much.

22: Stephanie had two main PT/OT girls.(Colleen and Stacy) She never liked PT/OT. But, thanks to them she got stronger every day. | Stacey

23: Steph visiting Namine. Namine is a friend of the family through church, she too was in Children's Hospital at the time Steph was

24: Stephanie's good friend Haley came to visit and watch a movie

25: Stephanie often took trips down to the PICU to visit her old nurses

26: Stephanie's friends Melanie and Amanda came for a visit

27: Wednesday, December 3, 2008 | Sarah and I only got to visit briefly with Stephanie last night (dad was already there), because shortly after we got there, they took Steph down for a sleep study. Basically, want to evaluate her breathing, etc. while asleep to determine if there is really any benefit to requiring Steph to wear the BiPap mask at night (still a concern with profusion in that left lung due to the left diaphragm paralysis). Anyway, hope to know the outcome of that study sometime today. And lets hope the answer is No because her poor nose/face is soooo sore from wearing it!Stephanie now has a goal chart with specific eating/drinking requirements by hour and by datethank you Carly! The reward, if every block is filled in between yesterday up to Friday, December 12th, Carly has agreed to take Steph to see the movie Twilight (Stephanie has been pretty bummed that she missed going to the midnight opening premier of this movie on 11/21). Okay, I wasn’t exactly clear if any of this idea has been shared with the docs or not, but I’m cheering/praying for the 12th (if not sooner!!) for a release date.

28: Sunday, December 6, 2008 | Pictures of going home here

29: Wednesday, December 10, 2008 | Just a quick updateStephanie did have her EGD (upper endoscopy) procedure last night. Should have the results from that in a couple days. On the down side, during the procedure, they accidentally pulled out her NJ tube. However, on the much better up side, Steph seems to have gotten back an appetite and, in fact, has eaten a McDonald’s cheeseburger for breakfast yes, I did say cheeseburger for breakfast! Let’s HOPE this is a turnaround point and that there will be NO need to put a feeding tube (of any kind) back in. Stephanie has already called me 2 times this morningpauseok, now make that 3. She sounds upbeat and positive (despite the fact that she says she is bored), was bragging a little about “eating” and said several times, “I just want to come home!” She is still on for the movie date with her former PICU nurses (Carly, and I hear Beth now, too) for this Friday.Home is getting close!

30: Sunday, December 14, 2008 | Hello all. Sorry for the update delay. Stephanie loved the movie (and the mall) on Friday (thank you Karly and Lindsey for convincing Dr. Earing it really was a good idea)! We are still on for going home on Tuesdaystill doesn’t seem real! Going to have a little goodbye cake/party in PICU (thank you Beth) that day, too.

31: Sunday, December 14, 2008 | Hey everyone I got to go home to my dad’s house today for 6 hours. Boy does the time fly. I didn’t do anything big. I got to see and hold my bunnies. They haven’t changed a bit. They got to eat some salad and carrots. I also snuggled with my dad and sister as we all watched whale wars together. I had a great time. Before I knew it my mom was there to pick me up. I cried a lil when it was time to leave, cuz I didn’t want to leave and go back to the hospital. But anyways, my friend Haley is coming over for a lil while to watch a movie. So that should be fun. Counting down my days till I go home. 2 days to go. =]

32: Friday, December 19, 2008 | And HIS will be done WE ARE GOING HOME TODAY! (pause to wipe tears of joy) Praise God and thank you everyone, our prayers have been answered. Mind you, Stephanie has A LOT of very strict requirements/expectations to meet in order to stay home, plus we have a follow up appointment with her cardiologist first thing Monday; but, tonight Stephanie will sleep in her own bed for the first time in 68 days. Merry Christmas and God bless everyone!!!

35: conclusion goes here

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  • By: stephanie b.
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  • Title: Delightful Doodles
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  • Started: almost 6 years ago
  • Updated: over 5 years ago

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