Day 43 (Week 7): Recasting & The Half-Way Mark

Our second visit to Valley Hospital in Ridgewood, NJ was a little less eventful than surgery day. On the previous night, tried to keep her feeding times later than usual so that the last formula bottle she had was at around 11:40 pm to honor the fasting-after-midnight rule for anesthesia.

As on the previous occasion, we reached the hospital 2 minutes before the 6:10am scheduled time (for a 7:40am procedure) and registered at the front desk to get our visitors badges.

Once in, we settled into the pre-op room. The administrator saw us first and asked us a few questions and checked her wrist band for name etc. Interestingly, she also shared that she had been diagnosed with the same condition, same hip, at 6 months old and reassured us that later on in life she was an active participant in sports, jumped rope and had a pretty regular childhood. In her case too, there had been no family history of DDH and her two daughters didn't suffer from it either. It was nice to have someone share that with us and it definitely helps to know that in the long run getting it addressed early on really helps. 

Next we met the nurses and the hospital staff that would look after us during our stay there. We were scheduled for a 'same day surgery' so the facilities etc were slightly different this time (no pediatric ward). 

Then we met the anesthesiologist and he confirmed that she had no adverse reaction to anesthesia at the previous procedure. He also confirmed that she had been administered a pre-op medication the last time, so he would use a similar protocol. (Later the orthopediatrician shared that she would not be administered the same level of anesthesia - that is she would not be in as 'deep a sleep' because we were only recasting and cleaning this time around).

Then came the orthopediatrician. He confirmed the color of the cast and that we were going to use the Goretex liner. Also he had us sign the consent form. And we were ready.

She changed into her gown and diaper only, sat on the OR nurse's lap in a wheelchair (this time crying 😞) and was off. We headed up to the waiting area for tea and light breakfast.

The procedure was short this time, so the doc was done and up within an hour. He informed us that she was cleaned up and awake and that we would be called down to see her soon. We asked if she was sore and overly soiled and discovered (kicking myself for my ignorance) that there were three incisions and not two. She was a bit sore but within the expected range, and there had been some soiling (we had had one accident which was a beast to clean up in the 6 weeks period), but that too was within reason. He also mentioned that her hips were a little stiff from being in the cast, and that was also to be expected. Our next appointment was to be in three weeks' time. By that time we had to make a decision whether the cast removal was to be with or without anesthesia - the doc said it's easier to clean up under anesthesia and is less frustrating and stressful for the little one, but ultimately it was the family's decision. 

Soon after we got the call to go down and see her. By this time she was wide awake and majorly annoyed. She had pulled the IV out in the OR itself and was trying her mightiest to remove the sensor from her finger. She had already had 2 oz of sugar water, I fed her another 2 but she wouldn't calm down completely until she was wheeled back to the pre-op room where I could pick her up and hold her. She was also famished, so the first order of business was bottle feeding her whole milk. After which she was a happy camper again. We had to wait for a little while more until the nurses were satisfied with her post-op recovery. We were back home before noon and that included a 45-minute drive back.

The rest of the day she was back to her normal self. We were advised by the nurses to ease into feeding gradually. Which we did. But she had no nausea and was only a little tired after her day's adventure.

Questions For the Doc | Part II | First Post-Op Appointment

Our daughter had a femoral osteotomy and open reduction. Following is a list of questions we asked at her first post-op check-up which was a week after surgery.


1. Can she sit upright? Use a spica table? Go for car rides?

2. Can she take baths? Wash her hair?

3. Giving her pain meds as needed - any suggestions for how much to give or not to give?

4. Can she go on her tummy?

5. Copy of today's X-ray

6. Planning on nanny or daycare after cast change - what special instructions to give?

7. Cast change appointment - at valley hospital?

8. Can she be near cats? Dog?

9. What's next after cast change? Brace? For how long?

10. Planning an international trip at the end of the year - doable?

Questions For the Doc | Part I | Post-Diagnosis Pre-Op Follow-up Visit

1. Is there a need for a second X-Ray or confirmation test to determine for certain that surgery is needed and what kind of procedure is to be followed? (Especially, since the neurologist didn't find any muscle imbalance and said that brain function seemed normal)

Notes: At the first consult, the doc suspected muscle tightness and had recommended a visit to the neurologist to rule out Cerebral Palsy (Hemiplegia).

2. What is the procedure that will be adopted for her hip correction? Is it closed reduction?

3. At what angle will the cast be set and how will it impact recovery and care?

4. Will the cast cover both legs fully? Only her right leg is affected.

5. How often will the cast be changed? After changing, will it cover both legs fully again?

6. We want to order the Gore-Tex cover, how do we go about that?

7. What are her pain management options?

8. Will she have IV during/after surgery?

9. On the day of the surgery - will she have to check in the night before? 

10. After the surgery, will she have to stay there overnight? Or will she be discharged by evening?

11. Will her room at the hospital have beds for parents to stay overnight with her?

12. If she will be discharged the next day, at what time will she be discharged the next day? Will the hospital provide a checklist for checkout? 

13. Will the hospital provide a Spica cast compatible car seat?

14. Will the hospital nurses provide guidance on Spica cast care?

15. Will you be able to provide a List of local support groups for Spica cast/hip dysplasia in toddlers?

16. What preparations should we make at home for post surgery care?

17. If the incision is covered by the spica cast, how will we know whether it is healing properly?

18. What happens if the Spica cast gets damaged before the change appointment?

19. What preparations do we need prior to surgery (besides all clear from pediatrician the week before)? Is there a checklist?

20. How long will she be in the Spica cast?

21. What happens after the Spica cast is removed? Will she need Braces? Something else, etc

22. Will she need physical therapy after the cast comes off? How soon should we expect her to be able to start walking again?

23. Any diet restrictions after surgery? For how long?

24. What if pain medication not enough? How do we get a refill?

25. Can she sleep between us on a king bed after surgery?

26. How long after the cast comes off can she go back to daycare? 

27. What instructions if any should we give to the daycare providers?

28. What will be the schedule of follow-ups after surgery?

29. Please share the Neurologist's report with us.

30. If possible, can you share contact details of parents of other hip dysplasia patients operated by the doctor.

Day 31 (Week 5): The Jiggly Wiggles (Fighting That Itch)

It started about two days or so ago. We call it the jiggly wiggles. I noticed that she was wiggling her whole body and not looking too happy. Her grandpa pulled out a memory from his childhood when he was in a cast and noted that she was probably very itchy!

At first it wasn't so bad, occasional and passing. But today I spent a whole hour tapping/knocking her cast (it's supposed to help) and trying different positions for her to get comfortable enough to fall asleep. I also sent her Dad to the pharmacy to buy some Benadryl. The thing with Benadryl though, it's not recommended for children under 2. But we're going to call the doc tomorrow to get his recommendation. Until then tapping/knocking her cast and changing positions is all we can do.

I did some research and here's a list of things that hospitals recommend for itching when in a spica cast. Hoping that some of these tips work!

(The following passage courtesy of the Children's Hospital of the King's Daughters)

Itching: (Children with Gor-TEX lined spica casts usually do not have problems with itching.)

• DO NOT let your child scratch or put anything into the cast. This may cause a sore or infection.
• DO NOT use powder or lotion inside the cast.
• Keep your child cool. Heat and sweat can make itching worse.
• Blow cool air into the cast using a blow dryer on the "cool" setting held twelve inches away. Do not use the warm or hot settings, it may cause burns.
• Give Benadryl to your child for itching. You can find it at pharmacies and some stores. Follow the directions on the label.
• Gently tap/knock on the cast above the area that itches.

UPDATE

We got permission from both the orthopedic pediatrician and her regular pediatrician's office to use Benadryl Allergy. We had to get the dosage and directions from her pediatrician - once a day, 1.5 ml. I think it is VERY IMPORTANT to get the pediatrician's guidance, because the orthopedic SHOULD NOT (as good practice) advise on dosage etc since they do not know your child's history. 

We only had to use the Benadryl once - and frankly the results were a bit disappointing. She stopped itching so much in a couple of days. And the best remedy turned out to be 'distraction'. 

Day 22: 2nd Post-Op Check-Up

We had a great 2nd post-op check-up. Her femur bone and hip are in place as they should be and the cast is still nice and stiff.

We checked with the doc about her discomfort over the last two days from what appears to be gas. He didn't seem overly concerned about it. (We have been giving her gas drops and trying to burp it out of her before she goes down for the night.)

He also lifted all restrictions which means she can now sit upright (in a spica chair, in the lap, in my arms etc) and can go on her tummy for easier diaper changes. 

We are penciled in for March 16th for a cast change. The doc's office is going to place the order for the goretex liner (highly recommend it, it's not that expensive). But Dr Konigsberg also said that we can come in earlier for a change if she seems too uncomfortable. 

All in all a good check-up!

Day 15: Diabolical Diarrhea

Diarrhea and blow outs are a Parent's worst nightmare. But when your baby is in a hip spica cast, it takes on an almost calamitous quality.

After an 'easy' (?) two weeks period of straightforward (??) diaper changes, we hit our first hurdle today. I am kicking myself for thinking prunes purée a good dinner option for her. Those jars are going to be shelved until she gets out of that cast (sorry hon!). She had her first diaper blow out. We were getting by on a newborn size for the inner diaper, but not today. Given that she's still always at a less-than-45 degrees angle, the diarrhea rode up her cast, fortunately on the rear side. 

The clean up took forever. But with the help of a chopstick and lots of gauze sponges, we finally cleaned the inside of her cast and most of it out. The rest of it dried out over the next few days and was cleaned up during the next few diaper changes. I was careful to be very gentle and didn't let the area get red or sore. Phew! about sums it up!

Day 14: Entertaining My Bored Toddler

She is mostly recovered from her surgery, but still has restrictions. She is not allowed to sit up straight or be on her tummy. So her play options are limited. She was a very active toddler before the surgery, so keeping her occupied and entertained while she's in her cast is important and difficult! It's also important for me as her Mom to find ways for her to play by herself or with someone else without depending on me constantly for comfort. I think I've found a couple of solutions that work well for short periods of time that are not TV or iPad related (yay!). Admittedly though, we still spend a lot of screen time, and I don't see a way around it at least for now.

The Moms on the Hip Dysplasia USA support group pointed me to a couple of Pinterest boards for DIY sensory bins. They're great if your toddler is allowed to sit up straight by themselves. Plus I don't have the energy to contemplate the clean up required for a box full of sand - I'm a lazy Mom! I did use those ideas though to create a couple of colorful boxes to put things in for her to play with. All it took was a cardboard diaper box or a plastic wet wipes box and colorful duct tape. It's been quite the success!

Bonus points for leftover colorful duct tape rolls which make very pretty bangles :).

A chalkboard and some colorful pieces of chalk are always entertaining. Though she doesn't have the concept of drawing down yet, it provides an opportunity for a few minutes of independent play. It's not half as entertaining as the sensory box though!

Day 9: Washing her hair

The doc has said that she cannot have baths, but sponging is ok and so is washing her hair. Fortunately, both were easy to set up. 

We sponge her everyday using warm water and a Konjac bath sponge. Once in a while we wipe her down with the Mustela no rinse cleanser, which not only does a great job with cleaning her but also leaves behind a gentle fresh scent. We can do this at the changing table itself, so it needs no additional set up. 

Washing her hair is a slightly different story. In the master bathroom we have 'his and her' sinks and a just-wide space separating the two. We have a portable changing pad (part of a nursery essentials set that she got as a gift at birth). So i laid that down between the two sinks, tucking one end under the tap of the first sink to secure it. I put her down on it on a bath towel and had another towel at hand to help dry her hair after washing. I secured her to the pad using the straps that come with it and handed her a bottle or tube of lotion of some kind to play with. I pulled her head slightly out holding her head securely with one hand. Then running the hot and cold water and using her bath mug, I shampooed her hair as usual. It was pretty straightforward and simple once I got down to it. Here are some pictures to show you how it was done.

Post-op Check-up: First Week

Today was the first post-op check-up at Dr Konisberg's office. The x-ray looks great, and the cast is still nice and stiff. The restrictions are still on - so no sitting up straight (no spica table), no flipping over on the tummy. But she can go for short car rides, so we may work that into our daily schedule. 

All in all a good check-up. To quote the doc 'It's great that her only complaint is that she's bored!'. Next check-up will be on the 23rd - which will be the halfway mark for her first cast!

Day 5 Recovery: A few lessons learned

She tends to have an accident in the middle of diapering on the changing table. But the goretex liner is doing its job in saving the cast hopefully. Since I can't flip her over yet, have been taking the weight of the cast on my upper body and using the mirror to do the diapering. Her swelling's down quite a bit, but we're still using the newborn size for the inner diaper. 

Brought the jogging stroller out into the living room, and her granddad has been giving her rides in it within the house to entertain her. It is the right size to help keep her supine. We also brought her folding papasan-shaped chair and bean bag out to the living room. Together they help keep her at the right angle (less than 45 degrees) with her smallest pillow to support her back. It's helpful when feeding. 

She's taking in slightly more food at a time. 4oz jar of baby food or a 4oz tub of yogurt - but not both in one meal. Strawberries about 3 + 3/4th of a cheese stick for breakfast - some examples.

She's still a bit clingy. She has this weird habit of needing to play with my hair to fall asleep. So often have to lie down next to her. Can't wait for the doc to ok sitting upright for short periods of time so we can use her borrowed spica table for playtime and meals. 

Her intake of Motrin has reduced as well and we seem to be waiting longer between doses during the day. These young children have magical regenerative powers!

Day 3: Recovering at home

Day 3 began rather uncomfortably but turned into a great recovery milestone. She developed a high fever in the night that the pain meds brought down, but it worried us as we weren't sure if it was some kind of infection that was causing it. The fever was gone in the morning and some of her appetite returned. Also she did well with just Motrin for the rest of the day, so we were off Tylenol Codeine already. Another big win.

During the course of the day (including midnight onwards) she had 3 bowel movements. The stools were hard, softening just a little every time. I tried to feed her papaya, but she wasn't interested. It's usually one of her favorite fruits. The swelling went down just a bit, but we were still using preemie diapers on the inside.

We had some of the strangest bed arrangements. Before the surgery she slept in the playard in our room. We were planning on continuing that arrangement with the addition of a wedge pillow. But the playard had to go, it was too low and the cast had added a lot of weight. We used the playard mattress as the base on our bed since our mattress had too much 'give'. We placed it against the headboard and changed the direction of sleeping to across the bed. Dad went down on the floor on an air mattress while I was next to her on the king bed. Then we used a lot of pillows to position her. Because of the femoral osteotomy, we weren't allowed to sit her upright. And her position had to be changed every few hours to give her relief. We were taught the 'turn and roll' method to change her position so her weight was properly distributed as we moved her. So she was allowed three positions: on her back and on each side, tucking pillows for supporting the leg that would end up hanging in midair. We used the same technique when we moved her to the living room floor and used the recliner couch's sides instead of the headboard for added support.

The turn and roll method:

Tuck one arm just under the cast of the torso and the other under the bum between the legs. Turn and roll towards yourself so that the leg closer to you rests on the bed and the other leg hangs in midair. Tuck pillows behind the back to hold the position. Then tuck more pillows under the hanging leg to ensure it is fully supported.

Lifting her also got easier but it was a workout nevertheless. Changing her diaper single handedly was still difficult as I wasn't allowed to flip her over to get to the bottom. So one person had to help with positioning the diapers, cleaning the bottom etc. 

I did sponge her exposed areas clean in the morning and tried to get the tangles out of her hair with a Mercier brush (those things are magic!) Changing her clothes was easier than I had expected, but I had to be careful not to lift her by her arms and shoulders so as not to have the weight pull down on her stitches.

She began to get bored due to the inaction. So keeping her entertained was tough. I think I'd invest in a lot more interactive book apps on iPad/iPhone. Apps by 'Fox and Sheep' are beautifully designed and the Stella and Sam story pack too. I highly recommend them. The highlight of our day was playing pillow toss with her, the grandparents and I. She had a complete blast!

Experience at the hospital: Femoral Osteotomy & Open Reduction

We've just gone through an open reduction and femoral osteotomy on my 17-month-old. Happy to share any stories. Have tried to keep a record of the experience on Facebook intentionally.

Here are some of the potentially helpful salient points:

We were scheduled for a 7:30 surgery and had to reach the hospital for pre-registration at 6:10 am. To prep for the surgery, I made sure she ate later the previous night. 8:00 pm solids dinner, 9:30 bottle of 8oz formula, 11:45 another 8oz bottle. For some reason she woke up at 2:45 am and stayed awake until the car ride at 5:00. We should've gotten more sleep during the previous day.

We reached on time despite the inclement weather. She was in good spirits, my little curious girl. After registration, we went down to the pre-op area. We had the room to ourselves so she had fun exploring the odds and ends there. The anesthesiologist and the ortho surgeon came in to talk to us just before the surgery. We changed her into her very becoming hospital gown. They gave her what seems to be a stronger dose of Tylenol codeine. The OR nurse put her in her lap, in a wheelchair and my happy girl went whee-ing into the OR.

Prior to the surgery the doctor and the nurses confirmed the consent form we had signed at the doc's last appointment. The form effectively informed us that: the doctor would try the least invasive of procedures starting with a closed reduction, an open incision and/or an osteotomy to get the bone and socket to fit as they should, an arthrogram may be performed to check the tissues surrounding the joint, and it would be followed with casting that will be left on for about 6-8 weeks.

We left her and went to the waiting area. It had a phone where the nurses could ring up status updates - it was sometimes attended by a staff person and sometimes we had to receive the calls ourselves. The area also had a general status board indicating 4 stages: registration, pre-op, intra, recovery. Each OR patient was assigned a unique number that you could look up on that board. This was pretty much useless to us as we were going to be with her through all but the intra (in the OR) stages. 

Our optimism led us to believe we'd be out of there very quickly, that it would be a simple closed reduction. The surgery effectively began at 8:00 a.m. We received our first update call at 9:00 to let us know the doctor had to do an open incision. It was two hours later that we received our next update - by then we had guessed he had had to cut the bone. In the end, including casting, the procedure took about 4.5 hours, before the doc came out to see us. 

The doc explained the procedure he had had to use. It was an open reduction with femoral osteotomy. He also explained the she'd still be in the cast only for the 3 months. We would not be able to sit her upright for a few days to ensure there's no weight on the incision. And she couldn't be on her stomach until he cleared it too. But he was very happy with the outcome of the surgery. Usually even after surgery the femur bone can easily come out of the socket, but in her case it was sitting nice and snug. Also post osteotomy her leg lengths were good almost equal. So the prognosis was very positive. But given the invasive procedure she would have to stay overnight. 

At the Valley hospital you cannot 'book' a private room in advance. Though our doctor had informed them and reserved the potential need for one, when the time came it was a long wait before we were moved to the pediatric ward. Her surgery had taken place in the general OR and recovery was in the general recovery ward. So the nurses were not specialized. They were awesome and helpful, but no real help. I was beginning to feel concerned about receiving much coaching - especially with the diaper changes et al. Frankly I think the information I received from Moms on support groups has been more useful. Also, the UK NGO Steps has some of the best resources out there on the Internet. Their YouTube channel has highly informative videos by regular parents caring for babies in a spica cast.

I didn't get much sleep during the overnight stay. It took me a while to realize that she would find her own way to deal with the muscle spasms. It wasn't until the next day that I stopped jumping up every time she cried out in her sleep. Disney channel was a big help as was Stella and Sam on the iPad/iPhone. My iPhone 6 plus was the perfect size for her to maneuver herself. I've a lot of friends and family spread out around the world who were really concerned and wanted updates. I used Facebook very effectively for this, so I didn't have to give them individually.

I have to say my post emergency C experience from the time she was born was a huge help. The whole hospital stay experience seemed very familiar to me as a result, as did her pain management protocol.