Posted 12/22/09
As some of you may know Jake was orginally acheduled for surgery Dec 2nd. He got very sick with the flu and we had to reschedule. Steve and Sidney were able to come with us this time. We had to reroute them at the last minute due to massive snow at JFK airport. They made it and we all will be spending Christmas together in Florida ;)
Jake had surgery yesterday, Dec 21st. He had his fixator removed and reconstructive surgery on his right ankle. Dr. Paley shortened his tibia did soft tissue repair and internal fixation on his ankle. He has a short leg cast, just below his knee, including his foot. His cast is white, not a lot of creativity within the casting department. So we WILL be decorating!
He had a rough night, very sedated and has to be on oxygen. He was asking for Sidney in the middle of the night;). He is doing a bit better today we turned the pain pump down, still on oxygen and working hard to breath. He can't get up until tomorrow when his brace for his hip comes in. I think he will look like a transformer with the brace and cast. We are hoping to be out of the hospital by Christmas eve!
It is so wonderful to have Steve and Sidney here.
Merry Christmas to all.
Love,
Derings
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Posted 10/27/09
Well, we have had a drastic change in plans. We were all set to come home Tuesday and Jake woke up yesterday with an infection in his leg. We headed back to the OR yesterday and Dr. Paley had to clean out the incision and they put in another pic line. We are still in the hospital, they want to closely monitor the wound and infection. As things look now we will not be heading home until next Tuesday...:-(
Here you'll see a picture of Jake in recovery loving life on the pain meds. That is my silly boy!
Jake and I really miss everyone one at home, especially Steve and Sidney. Thanks to Megan, Maria, Kelly, and Sheryl for helping with Sid while Grammy Love went home to get better. Grammy Love will be back on Thursday to help! I guess we will get to trick or treat in the heat!
Thanks for your love and support.
Chellie and Jake
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Posted 10/25/09
On Jake's birthday the Quantum House threw him a surprise party! It was fantastic and we are so gilled with gratitude! It was an amazing day, our son turned 5 and he was surrounded by love here in West Palm Beach and we felt all of your arms around us from Michigan to New York to Eugene and our home in P-Town!
I'm overwhelmed but not surprised by how many hearts Jake touches. I can't help but to think back on Jake's early days and well, honestly 5 feels like we have made it! This journey is scary, raw, amazing and beautiful all at the same time. What a gift!
Jake's favorite gift was that Steve flew in to surprise him. I told Jake we had a special package to pick up at the airport. He was very surprised when he saw his Daddy! Jake was sad when he left this morning (Tuesday) but knows that Steve and Sidney will be back on Saturday to help us get home on the 27th. Poor Sidney was home sick with Grammy Love, thanks Grammy Love for staying with Sid!
I have attached some pictures from the party, Jake and Steve playing the Wii and Jake at therapy standing!!!!
We love you all and thank you for your support!
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Posted 10/16/09
Well, we will be spending Jake's 5th birthday here in Florida, Dr. Paley and I had an hour long conversation and he would like to monitor Jake closely for the next two weeks. We hope to be home on or around Oct 27th. Wow...
We moved to the peds floor on Sunday. It is nice to be our of the PICU!
Monday, Jake and I fought a good fight and we were happy when that long day came to an end! We recovered with sleep and woke up swinging! Jake put a little bit of weight down on his good foot on Monday and with lots of help sat in his wheelchair. Due to a persistent fever and cough, infectious disease and the pulmonary doctors were called in. Looks like we won't be discharged until Friday...Ouch! Pin care on his fixator is unspeakable and did I mention how bad his leg hurts :-(
Round one: Hospital 1 Team Jake 1 = Draw!
Tuesday was a MUCH better day than Monday! Jake had a great time playing the Wii with his new friend Lainey (see picture above). He charmed Lainey so much that once she was discharged she came back to the hospital and brought Jake his favorite; bagel, turkey and cream cheese and a huge Lightening McQueen coloring book! Once again, showing how much of a ladies man he is. God bless Lainey's mom who started my Tuesday off with Dunkin Donuts coffee and donut holes. She also bought me a cozy sweat outfit for the freezing hospital! What a great family with open hearts :-)
Pin care=:-((((
Round two: Hospital 0 Team Jake 1 = Win for Team Jake!
Jake started off his day with a donut and therapy dogs. This one is named Jake! (See the pictures.)
The Quantum house (where we will be staying after we are discharged) is throwing him a surprise birthday party on Sunday, his 5th birthday :-)
I want to give a big shout out of love for Sidney who I love to the moon and back who has been home sick for the last few days! Miss you love bug :-)
Thank you for all of your prayers, love and support!
Chellie and Jake
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Posted 10/11/09
Dr. Paley did a 6 hour surgery on Jake. He removed and then replaced the tightrope, which holds his hip in place, then shortened his femur and put on an external fixator that he will wear for 6-8 weeks.
So as you can imagine we have had a rough couple of days! We are in the PICU but hopefully tomorrow we will be moved to the Peds floor. He threw up again today :-( but I think we are done with that...keep your fingers crossed! They took him off oxygen yesterday but he was back on oxygen all of last night and today. He still has a significant cough. Today was a really hard day but we made a lot of progress. Jake's drains were pulled, he had a blood transfusion and they removed his pain pump! He got up today! Jake was very scared but he did it, he moved from the bed to a wheelchair and took a quick trip to the gift shop. I am so proud of how brave he was. He then asked for pizza and has been sleeping ever since :-)
These following words are from Caroline Eaton, she is Dr. Paley's patient coordinator.
"I was at a party last night and another St. Mary's orthopedic surgeon who had observed Jake's surgery was there. He told me that it was the most unbelievable, miraculous, incredible thing he has ever seen in his entire life. He went on to say that Dr. Paley's ability to see in 3D (when no one else can) in unreal"
It was wonderful to hear that, we are so grateful that Dr. Paley has given Jake the ability to walk. What a gift!
Thank you for all of your prayers, love and support. Jake is such a fighter!
XOXO
Chellie and Jake
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Posted 10/8/09
Jake will be in the ICU for several nights...he has lost a lot of blood and has a high heart rate and sounds really junkie. We may be in the hospital for 5-7 nights. This can all change depending on how he does.
Thanks for your thoughts and prayers
The Derings
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Posted 10/4/09
Since the last update Jake has been on IV antibiotics 3 times a day for close to 6 weeks now. He is still in his spica cast and starting to wear thin on patience. We were originally scheduled to return to Florida on October 12th for a check up. Jake’s surgeon called me last Friday (Sept 25th) and said he did not like the look of Jake’s most recent X-rays and wanted me to come out right away. Right away… as in the following Monday! As luck would have it Jake had the flu and could not travel. We are on the mend and released for surgery anytime after Monday Oct. 5th. Jake and I will fly to Florida on Tues, the 6th with pre-op on Wed, and surgery to follow on Thursday.
Dr. Paley will put Jake under anesthesia try to reposition his hip and put on a new spica cast! The head of Jake’s femur is not in the right position post surgically. We are hopeful but not extremely confident that this will do the trick. Due to the fact that 5 short weeks ago local surgeons repositioned Jake’s hip under anesthesia as requested by Dr. Paley. There is a great possibility that they will have to do more. We don’t know when we will be coming home but I will update as soon as I know!
As fall weather is upon us here in the NW, the sun is still shining down in southern Florida! This summer girl is thankful for 88-90 degrees in West Palm Beach. I must also say I would never give up the pain of these experiences for all that they have taught me. To be with your child who is in pain repeatedly makes you feel things very deeply and truly appreciate the things that really matter most!
Thank you so much for following Jake’s progress! He is stronger with all of you behind him.
Gratefully,
Dering Family
Posted 8/30/09
Well our arrival home has been very eventful to say the least! Jake started bleeding from his incision site last Tuesday AM. We went to an ortho surgeon at Emanuel Wednesday and Thursday. After x-rays and ultrasounds it was determined that Jake had 2 hematomas under his incision. So he had surgery Friday AM to clean them out. He also has a staff infection and we are still in the hospital as of today (Sunday). They put in a pic line in last night because Jake will be on IV antibiotics for 6+ weeks. The next step is to go back to the OR to non surgically reposition the hip and put on a new spica cast. We hope to be home by Tuesday?
Thank you again for all the love sent out way.
Chellie and Jake ;)
Posted 8/22/09
We were discharged from the hospital late Thursday afternoon! The picture here is Jake being silly on pain meds! Filling Jake's prescriptions took me on quite a ride, 4 different Walgreens to be exact. We had a follow up with Dr. Paley on Friday, the appointment was very long but worth the wait. They took his cast off, replaced the lining and decided to make it removable! Jake can have the cast off 1 time per day for gentle stretching and a BATH! He has a really painful night last night so today we had to change all his meds around again...back to 3 more Walgreens! Everyday is different, we are trying to take it as it comes. Jake is asking for Sidney and Daddy a lot. Overall West Palm Beach has been better than Baltimore....Oh how I appreciate the Pacific NW.
Chellie, Jake and Grammy Love!
Posted 8/19/09
They had a rough night but things are better this morning, if all continues they will get out of the hospital tomorrow.
Posted 8/18/09
Jake is being very strong and I am so proud of him. Having said that he is tiring of all the doctors, nurses, and constant medications. The plan is to get him off IV meds today, so far this has been unsuccessful! His cast is an issue, it smells very bad from sweat and urine, but then I guess all little boys do. They would need to put Jake under anesthesia to go a new cast so this is not an option. Jake is able to get up in his wheelchair 2-3 time a day and go visit the playroom to play the Wii. We saw a flash of his silly personality yesterday and he smiles when he can. His spirit is still strong. Sidney misses him but is enjoying horse camp this week. XOXO
Chellie, Jake and Grammy Love
Posted 8/17/09
So happy for a new day! After reassigning a few nurses things are looking good. Jake had a very good night, his pain is persistent but under control. Looking at one or two more nights in the hospital.
Posted 8/15/09
Jake had a better night last night but he woke up in a lot of pain. After he was comfortable and Grammy Love was here I went for a run! His nurse said "Go...I think that would be good for you...Go! ;) When I got back we decided to change his pain management. We had to do a new IV which was miserable for everyone :( We are in the process of taking out the epidural, this allows us to take the catheter out as well. So now he is on a pain pump, which is working much better, he has been sleeping for 3 hours! He is my little SUPERMAN! Thanks for all the love, support and prayers.
Gracefully,
Chellie
Posted 8/14/09
Jake's pain has been hard to control, we are all working hard to find the right combination to make him feel better. His drain came out on it's own yesterday and they want to keep the epidural in another day. We got Jake in his wheelchair yesterday and make it down to the playroom. He wanted to play the Wii, so I asked him if he wanted to play by himself or against me and he looked at me and said "well Mom, but you're not very good" After that comment I had to play against him and I beat him for the first time ever. I guess he has to be in a body case and full of pain meds for me to win but hey, a win is a win.
Posted 8/13/09
They moved us out of the PICU yesterday and on to the pediatric floor. Jake wanted to get up and lay in his wheelchair, so 2 nurses and my Mom and I made the transition. He went back to bed and was sound asleep after some good pain meds and valium. We had a bit of a rough evening. Jake was having a LOT of pain that the drugs would not quiet. Dr. Paley came up and said to split the cast to alleviate the pressure from the swelling. It worked and he was able to sleep (10:45 pm) Jake's bravery and courage is so beautiful to me. Godspeed little man!
Posted 8/12/09
Jake and I went to sleep around 4:30 am and slept for about 4 hours...which was great! He has a pain pump that he is managing by himself paired with more IV pain meds when needed. He is getting a blood transfusion because he lost a lot of blood yesterday. He loved seeing the therapy dogs this morning. He was a little teary when he talked to Dad. We are still in the PICU but things are good.
Posted 8/11/09
Jake went into surgery @1:30 but Dr. Paley did not start until 2:30. (eastern time) Jake did very well waiting 5 hours, when they came to get him he was very scared. I was in the room when they put him under and gave him 50 kisses. Dr. Paley may not do the same procedure on this knee as he did on the left but he is reconstructing his left hip and ankle. We shall see...I will keep you posted. I don' t know how long this surgery will be...
Thank you for all of the support.
Love,
Chellie
