One "Hip" Momma

still more journal entries .... almost caught up! WEDNESDAY, AUGUST 06, 2008 11:53 AM, CDT We had Jack's appointment with his amazing surgeon, Dr. Joughin, yesterday to follow-up after his last surgery. 5 hours and an MRI later .... Jack is scheduled to return to surgery August 22nd.  He is still doing amazing ~ much, much better than his Momma is this week. For the most part I feel very positive about 'all this' but yesterday just wasn't one of those days. Dr. Joughin was frustrated & worried about Jack's last surgery. Dr. Kiefer didn't exactly follow through with her wishes which, in the end, may give or poor dude longer in his cast. He fought the MRI again & she was unable to read it! From what she can 'kind of tell' from the 'fuzzigram' (I love her !!) was that Jack's hip is 'in the right area' but looks placed too far back which wouldn't place any pressure, which wouldn't encourage any growth ..... or if there is pressure ~ growth in the wrong place. She is also in agreement with us .... we do NOT want Jack taken out of his cast & put into a brace if there is ANY chance of it not working. In her words you just do not 'mess around with a case this severe' UGH !! Follow that up with the first 2 hipbabies in spica casts I have met personally ..... getting theirs off, parents walking out with their castless children cheering 'I am so glad we will never have to come back again' & a very tired, worried Momma ..... yup. I am feeling much better again today though :) We'll know Jack's time August 21st .... we'll let you all know so you can send sweet Jackjack happy thoughts & strong 'GROW, BONE, GROW' vibes :) Love you all, Rich & Steph  ps ...... guess who started crawling Monday !!!!!   TUESDAY, JULY 22, 2008 04:54 PM, CDT Jack is still doing really well :) This cast has been giving us some trouble but hopefully with the additional trim it got today at our 10 day follow-up, this week will be better. Jack's hip is in a good spot for growth & is holding steady. There still is no sign of new bone growth & we need to go in for an additional appointment in 2 weeks when our surgeon returns from holidays. We really need to have those bones start growing over the next month ..... please .... GROW, BONES, GROW. His right hip, his 'good' one, is also in a good position but has absolutely no new bone yet. Our next appointment is to decide how to move forward with Jack's treatment. Thank you for holding tight with us ..... this is still going to be a long journey but we couldn't do it without the strength we get from those that love us!! Much love, Rich & Steph   FRIDAY, JULY 11, 2008 02:22 PM, CDT We are home!! Jack did great today! He's sleeping comfy in his own bed :) He did really well last night & actually slept from 12 - 5! That is the first time he's slept that long in 6 weeks .... little monkey! His hips are looking good, his new cast is bright green & his right leg in only half casted !!It feels sooooo good to see his little leg again :) His left leg is now at a strange angle ~ almost a little towards the back but his hip was stable when Dr. Kiefer changed his cast. This angle puts more pressure on his acetebelum to encourage that bone growth! Follow-up is in 10 days with another xray to double check the placement but so far it's looking great!! I'm going to sneak in a nap while Jack is & I'll update with pictures & more information later. What a good day :) Love, Rich & Steph THURSDAY, JULY 10, 2008 01:47 PM, CDT Hi Everyone, Jack's surgery has been scheduled tomorrow for 8:40 with check-in at 7:45. This worked really well last time .... he didn't have too long to be hungry! Again, no food or milk after midnight & nothing after 5:30. It has really helped having Ben & Hannah home this week .... I don't have much downtime to worry :) I'm just praying this gets easier every time we go in... he's just so small. We are really really really hoping this second closed reduction works so we can avoid the longer open reduction. We still will not know until after Jack's surgery tomorrow whether or not he will be recasted. Ben & Hannah have been really excited that Momma has finally let them sign Jack's cast .... so are their buddies !! It's filling up quick :) Please send Jackjack deep sleep thoughts so the night is easier on him, Love to you all, Rich & Steph   TUESDAY, JULY 08, 2008 04:09 PM, CDT Hi Everyone, I've added an update to our blog & will do another after Jack's surgery this Friday ..... http://web.mac.com/stephkilbride Hope everyone is well. Love you all, Rich & Steph   SATURDAY, JUNE 21, 2008 09:29 PM, CDT Hi Everyone, I've been working on a new blog over the last couple of days to make it easier to keep everyone updated on Jack. Pictures & updates are available in the same place :) I'm also hoping to use it as a resource for other parents of 'hip-kids'. I've started adding info & will be able to add pages to help answer the 'how do I' questions that there aren't many answers for online! http://web.mac.com/stephkilbride Jack's feeling better & it is definitely the heat that's making him feel yucky .... needless to say, the fans are now out :) Love you all, Steph & Rich   WEDNESDAY, JUNE 18, 2008 07:13 PM, CDT We got the call today .... Jack's next surgery will be on July 11 with Dr. Keefer. Our 'regular' surgeon, Dr. Joughin, will be away on a much needed vacation & they both agree that surgery can't wait until she returns due to his hip moving. Jack's doing great but has been a bit under the weather the last few days .... not sure if it is the heat or a bug :( Much love, Rich & Steph   MONDAY, JUNE 09, 2008 07:21 PM, CDT Jack was a super trooper today!! Have you ever felt like you climbed onto a ride that you thought you were brave enough to ride & once you got on, & had no choice, REALLY wanted off?? That is how I would classify our day ... Jack's follow-up appointment was this morning at 9:45. I was thinking it would be a 15 minute 'everything looks great' appointment & we walked into the house tired, but happy to be home, at 4:00 this afternoon! Jack's xray this morning showed that his hip had shifted :(  This lead to an MRI, followed by a CT scan, with meetings with Dr. Jaughin in between. I'm sure they were tired of seeing us by the end of the day!! Jack did great with the xray .... not so good with the MRI, which made us 'need' the CT. I was scared too .... how noisy is that MRI machine?? Especially when you are 1, wrapped tight, held down by velcro & stuck in a noisy tube where you can hear your Momma but not see her for 15 minutes!! Needless to say Mr. 'you're a strong little monkey' kicked & wiggled so much they couldn't read the MRI... even with extra enhancement :)  The CT takes pictures quicker, even if Grandma could hear poor Jack all the way out in the waiting room & he kicked all the way through, & thankfully worked without sedation!! In the end, his left hip has shifted (hopefully due to reabsorbed tissue!) but is still in a good spot. Dr. Jaughin will not have time to do Jack's next surgery before she leaves for a much deserved month off, so a colleague will do Jack's next surgery during July. Brenda will call with the date as soon as she has it. Jack's still doing great ... our hardest time is at night. He's up every 1 1/2 - 2 hours & this is 'normal' for these little ones. I've been given strict instructions to 'leave the laundry in the dryer & to nap when he does' by the experts ... I'm starting to think that sounds pretty good :) I've added some not so good pictures of Grandpa's special spica chair due to the rain & really weird lighting in our home! I'll get better ones once it stops raining & I can get the amazing gift out on the deck to show you how it works !! Much love, Rich & Steph SATURDAY, MAY 31, 2008 10:09 PM, CDT

Jack is doing GREAT today :) I'm not entirely sure if it's due to the fact that I am in desperate need of 24 hours sleep or that Jack has already adjusted like a trooper ... but it is very, very hard to believe he just had surgery 48 hours ago !! He did really well without his milk from midnight on Wednesday and I also feel very blessed that we were the first surgery! It would have been an even harder wait if Jack was upset from being hungry. I was able to take him right into the O.R. until he was asleep at 8am & he was in recovery by 9:30!! Dr. Jaughin is happy with how his hip is 'docked' right now. Due to his left hip never being in the socket, the tendons & muscles holding it in place are, naturally, longer. When his hip was pulled down & placed in the socket, the tendons (which would now be too long) slipped between the wall of Jack's hip socket & the ball of his hip. It is our greatest wish that this extra tissue gets re-absorbed by his body & that the bone of his hip socket grows ~ GROW, BONE, GROW. We have to take this 'surgery by surgery' right now. Dr. Jaughin will need to do an open reduction *if* the extra tissue remains because the proper amount of pressure won't be on his hip socket .... which is important as it stimulates the bone growth. Our follow-up is June 9th & we will find out the date of Jack's next surgery at that appointment (we do know it will be the last week of June). Jack had some unhappiness once he was awake .... okay a full, very long, hour & a half of unhappiness, due to the anaesthetic & as 'white haired poppa' pointed out ~ 'I wouldn't be so happy either if I went to sleep & woke up with that contraption on my legs!' but has done amazing ever since!! We had a good night on the unit, only waking every 4 hours for medication & vitals & were let loose by 12 on Friday :)  Around 5 pm yesterday we had more excitement as we realized that the outpatient pharmacy had sent us home with someone else's medication & I had already given Jack 2 doses !! After a very panicked (& yes angry!!) call & return to emergency, it was determined that LUCKILY the medication was an anti-inflammatory for colitis & Jack was stable, well under the therapeutic limit & could only be helped by the anti-inflammatory ... I am too scared to even start with the 'what ifs' so I have given the little hamsters in my head very strict instructions to stay off of their wheel!! Jack was finally given some pain medication & they were able to track down the little girl who wasn't getting the meds she needed .... I only hope she got Jack's codeine & not something that could hurt her! I know ~ I am still shaking my head too!! We have had an excellent day, just being home, sitting in the sunshine & enjoying some quiet. Jack got an extra special, unbelieveable, still makes me cry at the amount of love that went into it, gift today. My wonderful Dad, after seeing the tables that the hospital sends home, went directly to the lumberyard, had to come back to the hospital for his wallet in Mom's purse, and has stayed up for 2 days to make Jack the most amazing spica table we have ever seen. He has a created a 'rocking horse' for Jack with strong Arabians running on either side, where he can sit like any other little boy to eat, play, rock & just be. I cannot put into words the freedom this gift has given Jack ~ or what it means to us to see the first genuinely happy smile from our little boy. It is beautiful. I am a very, very lucky girl. We are a blessed family. People ask me how we stay strong & my only answer is 'because we are so loved'. Thank you all for loving us, praying for us & keeping us in your thoughts. It means the world to us. Lots of love, Rich & Steph

THURSDAY, MAY 29, 2008 11:34 AM, CDT

Hi Everyone, Jack is out of surgery & is hanging in there with his new legs :) His right is in good position & his left is in place but there is quite a bit of tissue we are hoping will be reabsorbed as the new bone grows. Next cast change will be the end of June & it looks like it will definately be a 6 month journey. He was not impressed when he woke up but he's in better spirits now .... we'll fill everyone in more after we arrive home tomorrow afternoon. Thank you so much for your prayers & wishes ... they help us stay strong! Lots of love, Rich & Steph

WEDNESDAY, MAY 28, 2008 11:09 AM, CDT

Hi Everyone, Jack's surgery is scheduled for 7:40 tomorrow morning with 'check-in' at 6:30 .... mmhmm - that's what I said too! We are happy that he will get his new legs early & apologize to our neighbours that Jack wakes when he find out he can't have his bottle of milk every 3 hours during the night :) Surgery will be about 2 hours long & we should be home by Friday night .... we'll update after we see Jack in recovery. Lots of love, Rich & Steph

WEDNESDAY, MAY 21, 2008 04:10 PM, CDT

Hi Everyone, There were no cancellations for tomorrow, May 22nd, so Jack's surgery will be next Thursday, May 29th. We should know his surgery time by next Tuesday. He's doing really well & we've been contemplating a name change as he adjusts to crawling & just happily causing trouble to ..... Denis :)  We'll let you all know of the time when we get the call. Lots of love, Steph & Rich

TUESDAY, APRIL 22, 2008 03:31 PM, CDT

Hi Everyone, We've had a very busy week! Dr. Jaughin called last Thursday to let us know Jack's surgery had been delayed due to damage done to his lungs from the pneumonia & RSV. The chemicals they use, to keep Jack asleep, would have increased his risk of asthma & pneumonia. We are (now) thankful they decided to delay his surgery but it was hard to believe they had waited until the day before! Not only do we have to emotionally prepare again but the poor family we 'bumped' to have Jack's surgery wouldn't have had to prepare again either... grrrrr ! We have a new scheduled date of May 29th and we are on the cancellation list for May 22nd. I am hoping to get the call for the 22nd because that is a very special date in our house! Hannah had her open heart surgery May 22nd & she has done so well that it would be an extra special day if Jack got his 'new legs' on that date too !! We are very happy to see those chubby legs for another month & that Jack has extra time to explore his world.  We'll keep you all updated with Jack's surgery date as well as his many appointments this month. Love to you all, Steph & Rich