Tuesday, March 26, 2013
DAY 20 UPDATE-
Thank you all for your continued prayers. We arrived home Thursday night and were greeted by Home Depot and a renovated house complete with welcome sign, balloons and flowers. Friday morning we were in the Dr. office after a call from Wynter's Neurosurgeon in Philly ( Dr. Samdani) stating that the antibiotics and protocol was not working and the infected pin/ screw needed to come out ASAP. So we met with Dr. George (pediatric neurosurgeon here in Austin) and he booked an OR for that next morning. Saturday we went back in to the hospital and had the screw removed, the hole cleaned and PRAISE GOD no screw was added anywhere due to the halo being very stable. The wound is large enough to fit your finger in and we can see her skull.... Right now we are doing wound care twice a day, which is very painful for her.....And we will have to be meeting with a plastic surgeon at some point. PLEASE continue to pray for no more infections and that THIS AREA will HEAL quickly and completely! Wynter remains on her medications but is in good spirits and is as hard as ever to keep up with.
Monday, March 18, 2013
DAY 11: INFECTED PIN
We had a good weekend, Wynter is slowly getting the hang of this balancing 10 pounds on your head thing. :) She had PT again today- as you can se it takes 2 adults to chase/ keep up with her :) I WAS SO PROUD AND AMAZED this morning- while waiting to see the doctor, Wynter drew a picture of Zac and herself- adding her halo and long hair- WITH OUT any verbal cues- she did it TOTALLY spontaneously!!!! WOW!!! I love this kid! She is so smart!
Unfortunately, by saturday one of her pins started to look red, and by Sunday it was a icky mess. We bought a medical scrub to wash her head and hair in, plus a saline rinse to try to keep infection away- but we had to go back to the hospital today to start her on 10 ml of antibiotics, 4 times a day for the next 7 days. We know that the risk of infection and a fall are the TWO big things we have to battle against for the next 8 weeks...but please be praying with us that this clears up and that she does not have any future problems with it. It is painful and dangerous. Thank you!!! AS long as this clears up and does not get worse- we will be free to fly back home at the end of the week! YEAH!!! Dad and Zac left very early this morning, and caught some snow on their way out :) We are supposed to get a snow storm tonight- which I know Wynter will love- praying its gone before our flight.
Saturday, March 16, 2013
DAY 7&8- Taking it easy & having a little fun
Wynter continues to steadily do well, with small ups and downs each day. The 3" incision on her hip where they tool the bone graft from tends to be pretty painful, and requires us to change her position every 2 hours. Her body cast also tends to rub and aggravate that area as well. She is still on Oxycodone every 5 hours around the clock. We do physical therapy to help her continue to learn how to balance daily activities. She is still in her wheelchair a lot, and when she walks- she uses a walker with a very "hands on" approach :) The name of the game for the next 6 months is NO FALLS. The swelling is almost completely gone in her foot/leg- praise God- that was the scariest part of this whole thing (and obviously most painful for her). Poor girl. Honestly, she is so strong, so brave, and an amazing trooper! I couldn't be more proud of her- she teaches us all so much! Trying to keep her mind off the pain and motivated to get up and around, we have taken her to the New Jersey Aquarium, and the Philadelphia National Constitution center.....very neat experiences and she has loved it! Such a blessing to be able to have some things to distract and reward her with. We have yet another appointment on Monday for physical therapy and to see the Dr. So we should have another update then. Thank you all for your continued prayers and support! Enjoy the pics!
Tuesday, March 12, 2013
DAY 5- HARD NIGHT- - GOOD surprise!
Last night was a very hard night. Wynter did not fall asleep until midnight and then I heard her move around 2 am- and she said ouch (WHICH she has NOT said this WHOLE time!) I got up to check her - to realize that her IV line in her foot had infiltrated- basically it blew up her foot and leg- it was hard, huge, and about to bust open- I called for the nurse and began to cut off and remove the IV- Wynter was in SO much pain! I sat up- holding her leg elevated- with ice, heat, and gentle massage until 8 am. BROKE my heart for her- she was in more pain from this than anything that has been done so far- she couldnt stand touch- it is a huge setback. We got her off all IV lines, all monitors and as the day progressed, she finished her fluids, antibiotics, and everyone decided that I was well versed in how to care for all her needs and that Wynter would do better- by getting out of the hospital early and back to a more regular routine- less stress on her body. SO- they adjusted her walker, wheelchair, and carseat buckles....filled lots of medications, scheduled returns physical therapy visits and Dr. checkups- and sent us on our way. We will stay very close for the next week to ten days, before we will be able to return home. But as you can see in the last picture- Wynter is glad to BREAK OUT! Thank you Shriners Children's Hospital, local Austin Shriners, and ALL OF YOU for all your thoughts/ prayers/ and support in so many ways! You are all a blessing to us in life changing ways! God bless you all.
Monday, March 11, 2013
DAY 4: WHO IS THIS KID?
Sunday, March 10, 2013
DAY 3: walker walk and a smile!
So as the day progressed, Wynter kept throwing up-she was still dosed pretty heavy on meds but the PT did come in and bring her a walker (still don't have the chair we need though) which you see her trying out in these pics. She didnt want to use it at first- she kept taking her hands off- but she cant even sit or stand with out help, so its a lot of back work for me- especially since she weights about 55 lbs in this thing- and as of now is mostly dead weight with wires and tubes. He lung Xray today showed that her lungs were too wet, so they gave her a medication that pulls fluid off the lungs- DOWNSIDE is that it makes you pee an ocean every 5 minutes- meaning, we had to change bed sheets, her, hip dressing etc. a few times, plus get her up to go potty on the potty almost every ten minutes for several hours there. The suppository did get things flowing on the back end of things- so there is an interesting praise report :) By 8pm- they said Wynter could leave the IUC and go down to the PACU floor!! yeah! The heart monitors came off, and one IV went bad:( SO she is down to the cervical drain in her head, 2 IV's, O2 monitor, and O2 mask. YEAH! PROGRESS! When we got downstairs, they finally "caved" and took my word for it that she cant keep water down on an acidic/ bile full stomach and that she needed something to absorb all that so she COULD keep something down, That Wynter wont eat or drink if she doesnt "feel" like she can... So - I waited till they started her zofran drip (anti nausea) and gave her very small bites of pretzels, then they offered her ice cream (which she wanted- she did NOT want the fluids they offered her earlier)- then an hour later she was still asking- so they gave me permission to give her pretzels, so I gave her a few more- than a second ice cream- SHE WAS A DIFFERENT kid!!! She looked great, started smiling, was awake- waked with her walker to the playroom and back- and wanted a dress on- THEN she even looked at herself in the mirror without fear! THANK YOU ALL FOR YOUR PRAYERS!!! Pray for a calm stomach and calm night and that the worst is over!!!
"go away mom"....beginning of day 3:
"Go away mom".... Wynter decided to pull her tinker bell covers over her head and tell me to go away ( I don't blame her- as three of us had to wake her and hold her down to draw blood first thing this morning). She has now pooped out what little was in there- and continues to pee well on the potty!!!! THANK you all for your prayers. Today they are going to wean down the morphine and valium a little and try to start give her oral meds (Oxy and tylenol) and sips of water. She is still very itchy and sick to her stomach though. Physical therapy is supposed to come up today and maybe we can go for a walk in the wheelchair. If all goes well today- MAYBE by late tonight we will be back to her 5th floor room and out of ICU. We shall see. Pray that she can hold things down, and that her bowl sounds return as that is still a big concern here. THANK YOU ALL!!!
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