Our 1st post-op doctor's appointment went well before and during.
Dr. Nelson didn't get to see "Mr. Hyde"... but everyone else in the building got to.
It turns out that the crusty blood I was freaking out about last night is not a big deal. (Gotta stop "Googling" things and trusting what everyone else says...)
Dr. Nelson said that there have been a lot of studies on the best pin care and nothing has proven to be better than just leaving it alone. He said Josiah could take a warm shower now, and that that stuff will just wash off. He said to dry it off and leave the pins alone.
He also said the pool would be good. I asked about a bath and he said that soaking it in warm water is not good because it warm water tends to invite bacteria growth... but he said I could try chlorinating a warm bath with a Tablespoon of bleach. (what!) :-/ Never thought about pool water containing bleach, but I guess that's what it is.
So things went well the 1st few hours of our day... but then things quickly got ugly, real ugly.
Instead of having me come back in 5 days, they decided to move one strut dial about 3 days worth of turning so they could change out 2 struts at the same time. (The struts are pushing the halos apart/together thus moving the foot. When we turn a dial, it's either elongating or shortening the bar/strut. Once the strut reaches it's max length, it must be switched out for one that can accommodate greater lengths.) While the doc actually turned it, Josiah was fine. He said he didn't feel anything... When went to the tech to have the strut changed, Jo started freaking out because he thought it was going to hurt... when the guy actually switched the struts and adjusted them to the right numbers, Josiah was full-blown screaming in his face "OWWWW! YOU'RE HURTING ME! IT HURTS! OW, OW OW, OWWWWW!!!!" the entire 20 minutes it took to do the change. It is hard to know if it really hurts, or it's a mental thing with him... I would say mental, but why did he scream the entire 45 minute ride home too, and why would he still be crying out now that we're home? He had medication at 10:30, and it's 12:10 now... no more until 2:30.
So I don't know if the turning caused his foot to start hurting, or if his fear caused him to feel "pain." I was trying to calm him down because there were other kids in the room waiting for their cast change or whatever, and I know he was freaking them out. I was so embarrassed at his howling. I don't know what's wrong with me. I wasn't feeling sad for him, I was frustrated that he was screaming at this guy who was just trying to do his job. I guess I didn't believe he was actually in pain, which is exactly what Josiah screamed at me, "You just don't believe me! You don't understand!"
That shut me up.
He's absolutely right. I don't understand; no one does. Only someone who's had a TSF on, and even then, each person's experience is different. It's like comparing labor pains & birth.
I don't know what's going on with him, but I need to stay gentle, calm, & reassuring regardless.
It's just so hard.
I don't know what to do for him.
I get so stressed and frustrated... I get angry because I can't fix it and I don't know what to do.. I feel guilty for putting him through this... at this point, I regret it. I'm hoping that it's all worth it in the end, but right now I hate it because he's miserable.... we're all miserable.
Josiah nailed it on the head when he cried, "I didn't know this thing would be like this. It changed my whole life! I hate this fixator!"
God, please let it get better soon!
Thursday, June 30, 2011
Wednesday, June 29, 2011
Potential Problem
The nurse at the hospital did not remove the gauze around the pins.
I called to ask the doctor if I was supposed to remove them.
He said that I could, and that I should put new gauze on only if any pin sites were oozing.
I removed the gauze, and none of them seemed to ooze.
The next day, a few had a little bit of dried blood around them.
Since I was instructed not to clean the sites yet, I left it alone... it was dried.
Well, what I didn't realize is that these pins were oozing little by little, adding to the dried-blood "piles" around the pins.
We go to the doctor tomorrow, and I know they're going to have to clean these up because after doing some reading, I realized that these crusty things can cause infections. (Great). I feel like an idiot. I should have asked about what to do about the dried blood or put some gauze around them right away.
Definitely not looking forward to our appointment tomorrow.
I have a feeling that everyone at the office will meet "Mr. Hyde" and his howling.
Speaking of... Josiah is going nuts right now. The pin turning really hurt tonight. We should have waited longer after giving him the pain medication. I can tell he's really in pain and not just annoyed like other times. I don't know what to do besides pray for him. It's maddening.
I know he hates this, and so do I.
God I hope it gets better soon.
I called to ask the doctor if I was supposed to remove them.
He said that I could, and that I should put new gauze on only if any pin sites were oozing.
I removed the gauze, and none of them seemed to ooze.
The next day, a few had a little bit of dried blood around them.
Since I was instructed not to clean the sites yet, I left it alone... it was dried.
Well, what I didn't realize is that these pins were oozing little by little, adding to the dried-blood "piles" around the pins.
We go to the doctor tomorrow, and I know they're going to have to clean these up because after doing some reading, I realized that these crusty things can cause infections. (Great). I feel like an idiot. I should have asked about what to do about the dried blood or put some gauze around them right away.
Definitely not looking forward to our appointment tomorrow.
I have a feeling that everyone at the office will meet "Mr. Hyde" and his howling.
Speaking of... Josiah is going nuts right now. The pin turning really hurt tonight. We should have waited longer after giving him the pain medication. I can tell he's really in pain and not just annoyed like other times. I don't know what to do besides pray for him. It's maddening.
I know he hates this, and so do I.
God I hope it gets better soon.
Monday, June 27, 2011
3:30am...not a great start for day 6.
Rough night.
Josiah woke up at 3:30am to use the bathroom.
After I got him settled back into bed, he started crying uncontrollably because he remembered his dad had to go back to work.
I think it was the combination of being tired and the medication, but he was sobbing.
It made me cry to see him cry.
He hasn't cried much... mostly yelling... so to see him sobbing over his daddy going to work re-broke my heart.
At that same time, Jackson woke up. I got him back to sleep within 30 minutes, but it took Josiah several "talks," prayers, and hugs over the span of 90 minutes to fall back asleep. I fell asleep around 5am, and Jackson was up for the day at 6:15am.
ZOMBIE MOM.
Josiah didn't want any pain medication when he woke up at 7 to use the bathroom.
I cautioned him that if his pain "reached the top of the mountain" it would take awhile for the medication to "catch it," but if we give you medicine now, while the pain is still flat, the medicine will just cover it up and it won't hurt."
He said he didn't need it, and I didn't give it to him because I thought maybe it was feeling better.
Well, an hour & 1/2 later, when he was really awake, he started screaming "Oowww! Mommy! Mommy! It's hurting!!!! It's hurting!!!! Mommy!"
So I gave it to him, but I knew it would take over 30 minutes to help.
Great way to start out the day--- exhausted, and having your child screaming in pain.
Praying the day gets better from here, that Josiah is able to be comfortable, and that sometime I can catch a nap.
Josiah woke up at 3:30am to use the bathroom.
After I got him settled back into bed, he started crying uncontrollably because he remembered his dad had to go back to work.
I think it was the combination of being tired and the medication, but he was sobbing.
It made me cry to see him cry.
He hasn't cried much... mostly yelling... so to see him sobbing over his daddy going to work re-broke my heart.
At that same time, Jackson woke up. I got him back to sleep within 30 minutes, but it took Josiah several "talks," prayers, and hugs over the span of 90 minutes to fall back asleep. I fell asleep around 5am, and Jackson was up for the day at 6:15am.
ZOMBIE MOM.
Josiah didn't want any pain medication when he woke up at 7 to use the bathroom.
I cautioned him that if his pain "reached the top of the mountain" it would take awhile for the medication to "catch it," but if we give you medicine now, while the pain is still flat, the medicine will just cover it up and it won't hurt."
He said he didn't need it, and I didn't give it to him because I thought maybe it was feeling better.
Well, an hour & 1/2 later, when he was really awake, he started screaming "Oowww! Mommy! Mommy! It's hurting!!!! It's hurting!!!! Mommy!"
So I gave it to him, but I knew it would take over 30 minutes to help.
Great way to start out the day--- exhausted, and having your child screaming in pain.
Praying the day gets better from here, that Josiah is able to be comfortable, and that sometime I can catch a nap.
Sunday, June 26, 2011
5 days in... Rollercoaster of Emotions
Today is Sunday, June 26th, and we're 5 days into our correction.
Our current computer-generated prescription of turning is 40 days.
Every night we turn the knob on each of the 6 struts.
The struts (the up & down bars) are causing space to lessen on the outside of the left foot, and create more space on the right side of the left foot.
At the end of our 40 days, the foot should be brought "over."
After that, we will get another computer-generated prescription to bring the foot "up."
It is the same idea behind the serial casting all clubfeet babies go through, but the fixator eliminates much of the human error involved and obviously holds the foot in position much better than plaster ever could.
These past 3 days since we've been home have been a roller coaster.
I'd say at least half of the day, Josiah is just fine. He plays his Wii, watches TV, colors, and naps.
We've had a few family members come visit with him, and he's done fine while they're here.
I think it's a good distraction.
However, the other half of the day he is yelling out (often very loudly) that something hurts.
It is heartbreaking, at first, to hear your child in pain. Feeling helpless is an awful.
We try to calm him down, reason with him, explain that the pain will get better, etc.
We pray over him, asking for God to touch him....
but often nothing helps.
Besides pain, he also complains that it itches, which is understandable. The multiple pin sites have all started scabbing. Skin itches when it heals. He has also complained about his toes. His big toe is pinned straight. If you hold your big toe still, you realize that it's pretty hard to wiggle the others.
This is maddening for Josiah right now.
You may have noticed that I said it was heartbreaking "at first." That is because after several hours, over a few days, if you're like me anyway, you start to get more frustrated than sad. I want to yell back, "Stop yelling at me! There's nothing I can do!" It's embarrassing to admit... this lack of patience... but to my defense, I'm exhausted. Between helping Josiah use the bathroom/give him meds through the night and Jackson waking up to be nursed, my sleep is very broken.
Don't get me wrong. I feel horrible for him. I am heartbroken, but my reactions have not always been as calm and as gentle as I would have hoped.
He's angry because he's in pain and doesn't know what to do, and I'm angry because he's in pain and I don't know what to do.
I have to figure out how to stay calm and collected, even when I'm feeling frustrated and flustered.
I emailed Dr. Nelson about Josiah's pain, and asked what else we could do for him. (He amazingly emailed me back within an hour or two. Have I mentioned how much I love this guy?)
He actually doubled his pain medication from 5mL to 10mL. That has helped today tremendously. He has not screamed about pain at all... just the itching/toes. We've been giving him 5mL of Tylenol with codeine every 2 hours instead of the same dose every 4 hours.
Other than that, we try to keep it elevated, though sometimes he's more comfortable laying on his side or bending his leg at the knee, and just letting the leg rest on the frame of the fixator. If he's comfortable, that's all the matters to me.
One thing I am so glad I decided to do is to grab that "urinal" bottle they use at the hospital. It is a million times easier to help him go in that thing than to lift him into his wheelchair, wheel him to the bathroom, get his pants down, and lift him on the toilet. As it is, we do that a few times a day when he says he has to go #2... unfortunately, the pain meds constipate, and he has not been very successful in that department yet. That'll be my next email to the doctor: what should we give him and when does it become a concern? It's already been 6 days.
One traumatic event was the removal of the gauze that was around eat pin site. I knew it wasn't going to hurt, except for where the blood had dried to the skin, attaching the gauze... but the pain of that would be minimal. However, the FEAR of the POTENTIAL pain is what has caused us a lot of grief. Josiah is 6. He has not endured much pain in his life (thank God), but he is unbelievably afraid of pain. He screams like you wouldn't believe at the THOUGHT of us doing something that could hurt. THAT is very frustrating as a parent. You know you have to do it. You know it's not going to hurt, but you can't make him believe you until he just sees for himself. It's very stressful.
Another thing I hadn't considered were the side-effects of the pain medication. I read (and have found to be very true) that Tylenol with Codeine brings mood swings, anger, and sadness. It causes your emotions to feel exaggerated. Boy have we experienced this side effect! Josiah is like Dr. Jekyl and Mr. Hyde! One minute he is saying, "Thank you mom for taking care of me," and the next minute he's yelling, "Don't touch me! Get out of here! Leave me alone!" I'll ask if he needs anything and sometimes he'll say, "No, thank you mom. I'm ok," and other times he says, "No! Geez, I'm FINE mom!"
I sigh and walk way knowing that he is going through so much more than I've ever been through and that a lot of it is the medication talking.
Our first doctor appointment is on Thursday, June 30th. They will be changing one of the struts. I fear Josiah will freak out about that "potential pain," though there is no reason the strut change should hurt... but they will be handling his foot/fixator so that has the potential for a "freak out." Be in prayer about that, would you?
John goes back to work tomorrow. It's a bit daunting to realize I will have 3 very dependent children all to myself... I'm specifically thinking about the 3-children simultaneously screaming that John & I experienced over the weekend, and not wanting to endure that alone!
But I know we'll all survive.
They're my babies! I'd do anything for them.
Besides, I wouldn't want anyone else taking care of them anyway. ;)
Things to know about the hospital & initial days at home:
But then I put myself in his shoes, and think a few years down the road... as a teenager/adult, if his feet were very turned, and if he was walking on the outside of them, would he be angry that we hadn't done something to help him? I think he would.
I pray this is all worth it and pays off for him in the end.
Our current computer-generated prescription of turning is 40 days.
Every night we turn the knob on each of the 6 struts.
The struts (the up & down bars) are causing space to lessen on the outside of the left foot, and create more space on the right side of the left foot.
At the end of our 40 days, the foot should be brought "over."
After that, we will get another computer-generated prescription to bring the foot "up."
It is the same idea behind the serial casting all clubfeet babies go through, but the fixator eliminates much of the human error involved and obviously holds the foot in position much better than plaster ever could.
These past 3 days since we've been home have been a roller coaster.
I'd say at least half of the day, Josiah is just fine. He plays his Wii, watches TV, colors, and naps.
We've had a few family members come visit with him, and he's done fine while they're here.
I think it's a good distraction.
However, the other half of the day he is yelling out (often very loudly) that something hurts.
It is heartbreaking, at first, to hear your child in pain. Feeling helpless is an awful.
We try to calm him down, reason with him, explain that the pain will get better, etc.
We pray over him, asking for God to touch him....
but often nothing helps.
Besides pain, he also complains that it itches, which is understandable. The multiple pin sites have all started scabbing. Skin itches when it heals. He has also complained about his toes. His big toe is pinned straight. If you hold your big toe still, you realize that it's pretty hard to wiggle the others.
This is maddening for Josiah right now.
You may have noticed that I said it was heartbreaking "at first." That is because after several hours, over a few days, if you're like me anyway, you start to get more frustrated than sad. I want to yell back, "Stop yelling at me! There's nothing I can do!" It's embarrassing to admit... this lack of patience... but to my defense, I'm exhausted. Between helping Josiah use the bathroom/give him meds through the night and Jackson waking up to be nursed, my sleep is very broken.
Don't get me wrong. I feel horrible for him. I am heartbroken, but my reactions have not always been as calm and as gentle as I would have hoped.
He's angry because he's in pain and doesn't know what to do, and I'm angry because he's in pain and I don't know what to do.
I have to figure out how to stay calm and collected, even when I'm feeling frustrated and flustered.
I emailed Dr. Nelson about Josiah's pain, and asked what else we could do for him. (He amazingly emailed me back within an hour or two. Have I mentioned how much I love this guy?)
He actually doubled his pain medication from 5mL to 10mL. That has helped today tremendously. He has not screamed about pain at all... just the itching/toes. We've been giving him 5mL of Tylenol with codeine every 2 hours instead of the same dose every 4 hours.
Other than that, we try to keep it elevated, though sometimes he's more comfortable laying on his side or bending his leg at the knee, and just letting the leg rest on the frame of the fixator. If he's comfortable, that's all the matters to me.
One thing I am so glad I decided to do is to grab that "urinal" bottle they use at the hospital. It is a million times easier to help him go in that thing than to lift him into his wheelchair, wheel him to the bathroom, get his pants down, and lift him on the toilet. As it is, we do that a few times a day when he says he has to go #2... unfortunately, the pain meds constipate, and he has not been very successful in that department yet. That'll be my next email to the doctor: what should we give him and when does it become a concern? It's already been 6 days.
One traumatic event was the removal of the gauze that was around eat pin site. I knew it wasn't going to hurt, except for where the blood had dried to the skin, attaching the gauze... but the pain of that would be minimal. However, the FEAR of the POTENTIAL pain is what has caused us a lot of grief. Josiah is 6. He has not endured much pain in his life (thank God), but he is unbelievably afraid of pain. He screams like you wouldn't believe at the THOUGHT of us doing something that could hurt. THAT is very frustrating as a parent. You know you have to do it. You know it's not going to hurt, but you can't make him believe you until he just sees for himself. It's very stressful.
Another thing I hadn't considered were the side-effects of the pain medication. I read (and have found to be very true) that Tylenol with Codeine brings mood swings, anger, and sadness. It causes your emotions to feel exaggerated. Boy have we experienced this side effect! Josiah is like Dr. Jekyl and Mr. Hyde! One minute he is saying, "Thank you mom for taking care of me," and the next minute he's yelling, "Don't touch me! Get out of here! Leave me alone!" I'll ask if he needs anything and sometimes he'll say, "No, thank you mom. I'm ok," and other times he says, "No! Geez, I'm FINE mom!"
I sigh and walk way knowing that he is going through so much more than I've ever been through and that a lot of it is the medication talking.
Our first doctor appointment is on Thursday, June 30th. They will be changing one of the struts. I fear Josiah will freak out about that "potential pain," though there is no reason the strut change should hurt... but they will be handling his foot/fixator so that has the potential for a "freak out." Be in prayer about that, would you?
John goes back to work tomorrow. It's a bit daunting to realize I will have 3 very dependent children all to myself... I'm specifically thinking about the 3-children simultaneously screaming that John & I experienced over the weekend, and not wanting to endure that alone!
But I know we'll all survive.
They're my babies! I'd do anything for them.
Besides, I wouldn't want anyone else taking care of them anyway. ;)
Things to know about the hospital & initial days at home:
- if he doesn't volunteer it, ask you doctor who you can get a hold of for quick answers about problems that arise 24/7.
- don't' be afraid to ask about adjusting pain medication if you feel it's not working
- for surgery, see if the nerve block is an option. I think it saved us a ton of narcotics & agitation in the hospital
- bring home the urinal (and bedpan for emergencies).
- have the nurse change the surgical gauze before you leave, and it would be best do do while the child is sleeping! (*update- use a squirt bottle of warm water with a T of bleach. Squirt some (gently) on the gauze before removing... much easier!)
- you'll be fitted with a wheelchair & walker before leaving the hospital. Make sure you understand how it works before letting the equipment rep leave. If it's not a good fit, let them know and they will switch it out (deliver it to your home).
- take care of your back! You will be using it a lot!
- everyone told me, and now I understand: the 1st week is HARD. It is painful for your child, yes, but what I didn't think about is how much of an adjustment it is on EVERYONE in the family. The other kids have already had to wait or cry frequently because Josiah needed something. Attention has shifted. My once "big helper" is now in need of big help. It is a hard thing for him to deal with mentally... it's all beginning to sink in how much help he needs, how he won't be able to do X, Y, Z... it's a bit depressing; however, he will not be as bed-ridden in a few weeks as he is now. Once his body's adjusted to the fixator, he won't be in pain & he'll be able to get around a bit more. We are going to make a big calendar to cross off the days. I try to remind him of why we're doing this, and how much straighter his foot will be... how it will be easier to run for soccer and baseball. How he'll be able to jump better, run faster, etc since he won't be walking on the outside of his foot.
But then I put myself in his shoes, and think a few years down the road... as a teenager/adult, if his feet were very turned, and if he was walking on the outside of them, would he be angry that we hadn't done something to help him? I think he would.
I pray this is all worth it and pays off for him in the end.
Saturday, June 25, 2011
"Insider Knowledge"
I found this blog: The Clubfeet Cure when I first started researching the Taylor Spatial Frame.
It gave me a great amount of knowledge about what to expect.
Though some things have already been different in our experience, I wanted to make sure anyone searching knows about this other mom's blog. She wrote it after they were done ( I think).
Many of the things she discusses were also described to me by another mom of one of Dr. Nelson's patients (a 5 year old boy who is also going through this right now).
Another place with insider knowledge is on Facebook. There is at least one clubfeet group I know of there: Born with Clubfeet.
I'm hoping that this blog will be come a source of insider knowledge as I will try to document our experience as it happens... the good, the bad & the ugly.
It gave me a great amount of knowledge about what to expect.
Though some things have already been different in our experience, I wanted to make sure anyone searching knows about this other mom's blog. She wrote it after they were done ( I think).
Many of the things she discusses were also described to me by another mom of one of Dr. Nelson's patients (a 5 year old boy who is also going through this right now).
Another place with insider knowledge is on Facebook. There is at least one clubfeet group I know of there: Born with Clubfeet.
I'm hoping that this blog will be come a source of insider knowledge as I will try to document our experience as it happens... the good, the bad & the ugly.
The 1st 48 hours post-op.
- When I shared it with Jo he said, " oh, I've heard that before! I think its a God Rocks song. Then he sang it :)
On the way to the hospital, we say a cloud in the sky that looked like out-stretched arms & a head with "wavy hair." Josiah said Jesus turned himself into a cloud to remind us that he's with us. I agreed, and told him about how God did the same thing for the Israelites, to lead them through the desert.
We arrived at the hospital right at 6am. It was as gorgeous sunny day already, so it didn't seem so early. Inside, it was very quiet and empty. 3 other families road up the elevator with us, all headed to the Children's pre-op area. Josiah got in some scrubs, and settled onto the bed. The friendly nurse took his vitals, and showed him how to work the TV. Surgery was set for 7:30am.
My mom & John's mom arrived at 7am. Josiah was calm, and in good spirits, playing his Leapster.
At 7:15, the nurse came and gave him some medication to make him very "calm" so that when they took him back, he wouldn't be scared. This medication made him loopy! It was actually pretty funny because he was out of it. He was asking me why there were two Mickeys on the screen. :) He could barely operate his mouth!
Unfortunately, at about 7:45, Dr. Nelson came to inform us that a little girl was bitten by a pitbull, and in surgery, so we got bumped for about an hour. I worried that the calming meds would wear off while we waited.
While Dr. Nelson was there, (and since we were delayed), after asking him several questions about the operation and the recovery, I decided to ask him what he wanted to do eventually with the right foot (since he said he didn't think it was severe enough to use the TSF). He looked at it and mentioned a surgery... and then said, "Y a know, I be we could get a good result from casting it. Since he'll already be immobile for a few weeks, we could cast in now in surgery if you want." I said, "Well, you're the doctor, if you think that'd be worthwhile, ok."
Well, then he left and we didn't get to talk to him again about it.
While Dr. Nelson was there, (and since we were delayed), after asking him several questions about the operation and the recovery, I decided to ask him what he wanted to do eventually with the right foot (since he said he didn't think it was severe enough to use the TSF). He looked at it and mentioned a surgery... and then said, "Y a know, I be we could get a good result from casting it. Since he'll already be immobile for a few weeks, we could cast in now in surgery if you want." I said, "Well, you're the doctor, if you think that'd be worthwhile, ok."
Well, then he left and we didn't get to talk to him again about it.
The anesthesia team came by to discuss a new option for Josiah. It was a nerve block in the groin area that would block pain for that leg. Using an ultrasound, they'd find the correct nerve, and block it. They'd do this right after surgery to control pain for the 12 hours post-op, which are the most painful. This would reduce (or eliminate) the need for narcotics. We said, "Sign us up."
- Tuesday at 10:19am the "calming meds" were given. He kept saying, "I'm a Christian boy, and I have a Christian doctor. God is going to ta ke care of me."
- Tuesday at 11:56am
- Tuesday at 1:00pm: Got a text to come meet th e doctor. On our way up.
- Tuesday at 1:45pm Jo is resting comfortably in recovery. The doctor & I briefly discussed casting the right foot in addition to the surgery on the left. I was surprised that it is a full leg cast! Should have figured it would be. Sec ond guessing that now. May have him cut it off
When we got to go see Jo, he was in the main hospital recovery room, so there were several older people there who had just had surgery. Uncomfortable environment to be in.
Josiah was not upset or crying, he was resting comfortably. When I said his name, he opened his eyes and tried to talk, but because of the tube they p ut down his throat during surgery, he couldn't talk. This upset him. I explained why his throat was sore and told him not to try to talk. I told him that his surgery was all done and that he did really good. I checked that he was not in pain, then told him to just close his eyes and rest.
Josiah was not upset or crying, he was resting comfortably. When I said his name, he opened his eyes and tried to talk, but because of the tube they p
I was so thankful we did the nerve block. This eliminated the need to give him narcotics which often make people (especially children) agitate d and disoriented.
I was actually relieved when i saw the fixator on him. It was smaller than what I had imagined. Plus, the pin sites were wrapped in gauze, so we didn't have to actually see the "wounds."
I was actually relieved when i saw the fixator on him. It was smaller than what I had imagined. Plus, the pin sites were wrapped in gauze, so we didn't have to actually see the "wounds."
We got moved to a room at 2:30pm.
He was doing very well, and I was surprised that he could move that foot around.
He was not happy about the cast, and neither was I. Besides being a full leg cast, it was very bent in order to get correction on the foot. I realized that this was absolutely impractical and too much to deal with. Unfortunately we wouldn't see the ortho team until the next morning, so we'd be stuck with it for the night.
My mom, mother in law & sister all stayed with us during the surgery, said hello to Josiah, and then went home at about 3pm.
We settled into our room.
One thing that was a challenge was using the bathroom. He had to use a bedpan and hand-held urinal. We figured out the best way to get him "into position," but it was still difficult and #2 proved to be impossible... the meds constipate.
- Tuesday at 7:50pm
- Wednesday at 7:13am: We made it through the night. Jo's pain is manageable w the meds he's given. No tears yet! (Well, except for when I tried to leave him to go to the bathroom!)
- Wednesday at 12:48pm Dr Nelson came by after one of his surgeries. Love that guy! :-) He had his resident cut off Jo's cast. He explained pin turning to us. Same time PT showed up w walker and wheelchair. Jo hopped down the hall. Not easy for him, but impressive! Orders have been written, equipment ordered =should be going home by 5
The resident who cut off Jo's cast needs to work on his bed-side manner!
He came in without saying a word, and turned on the circular saw thing. Of course, Josiah started freaking out. I said, "Jo, it won't hurt you. It's just loud and it will shake your leg as it cuts the cast. That tool doesn't cut skin."
The doctor said, "Actually, it can cut skin... but..."
What the heck! Ugggg. Anyway, thankfully Dr. Nelson came in right after that so we could talk to him and not this guy.
As mentioned in my FB update above, Josiah got out of bed and hopped out of the room and down the hall with the walker. It was hard for him, and he's never been a good "hopper" anyway, but the Physical therapy guy was very impressed.
- Wednesday at 1:07pm
- Wednesday at 2:47pm Jo, starting to cry. Me: What's wrong buddy? Is it hurting again?
- Wednesday at 4:08pm: Watching DVD while waiting to be discharged.
We had to wait a long time to be discharged, mainly because we were waiting for insurance to approve the wheelchair & walker. Hindsight is 20/20. I would have just told them to figure it our and deliver them to the house. We could carry Josiah into the house or use a stroller. Very frustrating waiting around for nothing when we could have left at 2pm!
- Wednesday at 6:38pm: FINALLY on our way home
We got home and it was nice to see my smiling 7 month old! I missed him! That was the 1st time I'd ever spent the night away from him, and it was the longest I'd ever been away (38 hours: Tues @5am to Wed @7:15pm)
My mom arrived shortly after with Ava, who I was also happy to see. She was such a sweetie! She was very concerned for Jo. She kept asking, "You ok Jo? Jo ok? Jo have owie?" She gave him lots of hugs.
My sister Kim also came at that time to deliver a box-spring and help us fix up his room.
Josiah had a loft bed, and so we had to take it apart, and put the box spring & mattress on the floor. That makes it just the right height for him to sit on the edge & eventually get up with a walker. We also rearranged some things in his room and brought in the lazy boy recliner to his room.
Everyone left, and we got Josiah settled into this room.
He wasn't due for medication until 9pm, but he started crying and yelling in pain at 8:15.
It was hard to see him like that, knowing there was nothing we could do.
Everything had gone so well up to that point, I had hoped we'd be the exception.
I finally gave in and gave him meds at 8:30, knowing it'd take another 30 minutes to kick in.
Eventually it did, and Josiah fell asleep.
Friday, June 24, 2011
Operation Eve
June 20th, 11:30pm.
I should be in bed.
It's after 11pm, and I have to be up on the way to Loma Linda Children's Hospital at 5am.
But, I can't sleep.
I have not really let my mind process all that is about to happen, and honestly, I don't think I can do it thoroughly now. I don't want to.
The bottom line is Josiah is having surgery.
I think the hardest part of this operation is that it's not done when we leave the hospital... it's just the beginning.
When he had surgery at 6months old, handing my baby over to the nurses was extremely hard for me. I broke down.
But when we got through that day, and the few days in the hospital, it felt like we had made it through the hard part.
His wounds were covered in casts. I couldn't see what they'd done....
With this one, his foot will be exposed. We will see the pins going through his skin, drilled into his bones. I will have to clean them daily. We will be turning knobs to move the bones. To be honest, it turns my stomach.
I've gotten varied testimonies from moms who've gone through it. One said her son did fine with relatively no pain after the 2nd week. Another mom just told me it was torture for her daughter each night. That same mom just told me that after 2 years, her daughters foot has started to relapse.
THAT is my biggest fear... that all this will be for naught.
Now, I can't say her experience will be ours... her daughter may have problems more severe than Josiah... but no one can know for sure with clubfeet if this or that will be the end-all-be-all procedure.
I do know that this one sounds promising, and that it's the least invasive of our options.
I know that there's no good time for this kind of thing, though, the younger the more malleable the bones.
I posted on FB the other day that I haven't lost any weight since April 23rd.
Upon consideration, it's no coincidence that we found out about Jo's surgery in April.
I've literally pushed any real thoughts about what we're going to deal with out of my head... and I honestly think I've been numbing my stress with food.
Usually I nip emotional eating in the bud. I will occasionally splurge, but usually restrict it to the weekend. I have been giving in to indulgences much more frequently these past 2 months.... I am really, really going to have to start tracking daily, and not just in my head.
I need to actually feel my emotions, and let my mind process instead of stuffing it down.
Anyway...
Josiah is doing remarkably well. He has not acted fearful at all when discussing surgery.
The 2 things that made him tear up was when he asked if I was going to stay with him at the hospital, and when he found out he had to get blood drawn (which he did great with when it came down to it!)
This has been a wonderful opportunity to put our faith into action with him...
I am praying fervently that he experiences God's peace, and that he would have no pain... what a testimony he could have--- I want him to experience God's touch for himself. I want him to know that it was God who helped him.
He keeps saying, "I'm a Christian boy. I know God is going to help me."
I'm afraid if he does have a lot of pain, he'll doubt the Lord's power...
My biggest fear is him being fearful and in pain.
That breaks a mama's heart.
My Jesus... please. Please spare him pain. Keep him safe in the surgeons hands. Bring him through safely. Guide Dr. Nelson and give him wisdom. Anoint every single person who comes in contact with Josiah. Guide their hands, their eyes, their words... Protect my boy, Lord, our boy. I know he belongs to you, and you have great plans for his life. I know you will hold him in your hands. Give him peace and comfort, and joy! Let his little light shine brightly for all around him.
Help John and I, and everyone he sees, to be a strength to him. Help me to keep it together.
Be with Jack & Ava while I'm away, and their caregivers. Let all go smoothly so I can focus on Jo.
Lord, please, protect Josiah. Cause everything to go smoothly. Take away any pain or confusion Josiah may have. Help us to remember our witness.
Thank you for Dr. Nelson, for his heart, for his faith in you. Be with him and his team tomorrow.
Help me rest now Lord, knowing that you are in control.
Amen.
I should be in bed.
It's after 11pm, and I have to be up on the way to Loma Linda Children's Hospital at 5am.
But, I can't sleep.
I have not really let my mind process all that is about to happen, and honestly, I don't think I can do it thoroughly now. I don't want to.
The bottom line is Josiah is having surgery.
I think the hardest part of this operation is that it's not done when we leave the hospital... it's just the beginning.
When he had surgery at 6months old, handing my baby over to the nurses was extremely hard for me. I broke down.
But when we got through that day, and the few days in the hospital, it felt like we had made it through the hard part.
His wounds were covered in casts. I couldn't see what they'd done....
With this one, his foot will be exposed. We will see the pins going through his skin, drilled into his bones. I will have to clean them daily. We will be turning knobs to move the bones. To be honest, it turns my stomach.
I've gotten varied testimonies from moms who've gone through it. One said her son did fine with relatively no pain after the 2nd week. Another mom just told me it was torture for her daughter each night. That same mom just told me that after 2 years, her daughters foot has started to relapse.
THAT is my biggest fear... that all this will be for naught.
Now, I can't say her experience will be ours... her daughter may have problems more severe than Josiah... but no one can know for sure with clubfeet if this or that will be the end-all-be-all procedure.
I do know that this one sounds promising, and that it's the least invasive of our options.
I know that there's no good time for this kind of thing, though, the younger the more malleable the bones.
I posted on FB the other day that I haven't lost any weight since April 23rd.
Upon consideration, it's no coincidence that we found out about Jo's surgery in April.
I've literally pushed any real thoughts about what we're going to deal with out of my head... and I honestly think I've been numbing my stress with food.
Usually I nip emotional eating in the bud. I will occasionally splurge, but usually restrict it to the weekend. I have been giving in to indulgences much more frequently these past 2 months.... I am really, really going to have to start tracking daily, and not just in my head.
I need to actually feel my emotions, and let my mind process instead of stuffing it down.
Anyway...
Josiah is doing remarkably well. He has not acted fearful at all when discussing surgery.
The 2 things that made him tear up was when he asked if I was going to stay with him at the hospital, and when he found out he had to get blood drawn (which he did great with when it came down to it!)
This has been a wonderful opportunity to put our faith into action with him...
I am praying fervently that he experiences God's peace, and that he would have no pain... what a testimony he could have--- I want him to experience God's touch for himself. I want him to know that it was God who helped him.
He keeps saying, "I'm a Christian boy. I know God is going to help me."
I'm afraid if he does have a lot of pain, he'll doubt the Lord's power...
My biggest fear is him being fearful and in pain.
That breaks a mama's heart.
My Jesus... please. Please spare him pain. Keep him safe in the surgeons hands. Bring him through safely. Guide Dr. Nelson and give him wisdom. Anoint every single person who comes in contact with Josiah. Guide their hands, their eyes, their words... Protect my boy, Lord, our boy. I know he belongs to you, and you have great plans for his life. I know you will hold him in your hands. Give him peace and comfort, and joy! Let his little light shine brightly for all around him.
Help John and I, and everyone he sees, to be a strength to him. Help me to keep it together.
Be with Jack & Ava while I'm away, and their caregivers. Let all go smoothly so I can focus on Jo.
Lord, please, protect Josiah. Cause everything to go smoothly. Take away any pain or confusion Josiah may have. Help us to remember our witness.
Thank you for Dr. Nelson, for his heart, for his faith in you. Be with him and his team tomorrow.
Help me rest now Lord, knowing that you are in control.
Amen.
Worries before surgery
Here come the worries & the what-ifs...
I rapidly went from:
"Yes! We found an awesome surgeon & the best option we've heard of yet to help treat Josiah's club feet"
to
"OMG, how are we going to do this? What about getting dressed, will undies fit over that? what about going to the bathroom, getting in &; out of the car, going out! (how can I push a wheel chair & a double stroller?), what about keeping the 6 exposed puncture areas clean.. I read they ooze, what if he's in pain? how can I stay at the hospital with him while I'm nursing Jackson? What if there are complications? What if something goes wrong?
I laid in bed last night- head spinning... and I just had to cry out to the Lord to take it all and let me sleep. I don't want to put my baby boy through this. I thought back to his 1st surgery at 6months old and how much my heart ached when they took him from my arms... and how I cried at the sight of him post-op with ginormous casts on, whimpering & crying out as he came-to.... but the Lord also reminded me of how we got through it... and how well Josiah actually did. He handled the surgery and castings so well. We got through it.
And man o man... things could be SO MUCH WORSE. There are so many people I know who are dealing with much harder & more critical situations. I feel guilty for my worry.
But he is my baby boy...
and I really don't want to see him in pain.
Dr. Nelson gave the mother of a current patient my number. She called me and confirmed some of my fears, and alleviated others. She said the first 2 weeks were rough. Her son was in pain and had a hard time just being comfortable. After that, though, she was pleasantly surprised at how well he was able to get around with it and how he went back to his normal self.
We will put all this out of our mind until June 21st and just enjoy ourselves while we're all able to!
I rapidly went from:
"Yes! We found an awesome surgeon & the best option we've heard of yet to help treat Josiah's club feet"
to
"OMG, how are we going to do this? What about getting dressed, will undies fit over that? what about going to the bathroom, getting in &; out of the car, going out! (how can I push a wheel chair & a double stroller?), what about keeping the 6 exposed puncture areas clean.. I read they ooze, what if he's in pain? how can I stay at the hospital with him while I'm nursing Jackson? What if there are complications? What if something goes wrong?
I laid in bed last night- head spinning... and I just had to cry out to the Lord to take it all and let me sleep. I don't want to put my baby boy through this. I thought back to his 1st surgery at 6months old and how much my heart ached when they took him from my arms... and how I cried at the sight of him post-op with ginormous casts on, whimpering & crying out as he came-to.... but the Lord also reminded me of how we got through it... and how well Josiah actually did. He handled the surgery and castings so well. We got through it.
And man o man... things could be SO MUCH WORSE. There are so many people I know who are dealing with much harder & more critical situations. I feel guilty for my worry.
But he is my baby boy...
and I really don't want to see him in pain.
Dr. Nelson gave the mother of a current patient my number. She called me and confirmed some of my fears, and alleviated others. She said the first 2 weeks were rough. Her son was in pain and had a hard time just being comfortable. After that, though, she was pleasantly surprised at how well he was able to get around with it and how he went back to his normal self.
We will put all this out of our mind until June 21st and just enjoy ourselves while we're all able to!
The Beginning & How we arrived at using the Taylor Spatial Frame.
When I was 20 weeks pregnant, during that first "big" ultrasound, I asked the sonographer if everything looked good, and he said, "I'm not allowed to say." I thought, well that's weird... if everything was ok, he would have just said, "Yes, I think so, but the doctor has to look it over." Why worry the preggo, right? It turns out that everything wasn't ok. My lil' boy's feet were severely twisted. Usually this happens with spina bifida cases, but thank the Lord it turned out his was an isolated case (nothing else wrong). It still sucked.
When Josiah was born, his feet looked like this:
(Geesh... he was not screamin' pink baby you want to see! He wasn't breathing well, and they took him to the NICU right after this...)
These two pictures were taken at 6 days old, right before we went to meet Dr. Hohl, the pediatric orthopedist. At the first appointment, Dr. Hohl told us that we would have to start casting Josiah's feet & legs to stretch/mold his feet into the correct position. We would change casts every 10 days.
Oh boy did I cry... I had PPD, and I'm sure now that the whole feet-thing was one of the biggest causes.
Here he is after his first casting... broke my heart.
So we went through 5 months of casting. (Imagine having a baby with casts from toes to thighs... it was not fun... but we got through it.
Josiah was a champ. He never seemed to be in pain or uncomfortable... even when it was June & 100 degrees! (*this, by the way, I attribute to much prayer! God was with Josiah in all of this!) After 5 months of casting, we got his feet to this:
They were relatively straight (pointing forward) but not able to flex up right. The casting became ineffective because Josiah started kicking and wiggling his casts out of place. Dr. Hohl (and a second opinion doctor) came to the conclusion that surgery was necessary. In September, when he was 6 months old, Josiah had surgery. It was the most heart breaking day of my life (I always feel like an ingrate/whiner/baby when I say this because I know parents who's kids have cancer, leukemia, major handicaps, etc.... I know there are so many worse things in the world... that said, in my lil' world, it was the worst day of my life up to that point. Handing a baby over to someone so that they can cut him open is horrible).
He had a Posteromedial Release on both feet.
Surgery went great. Josiah did amazingly well. The first day was the worst, then he seemed to go right back to his happy self. Again-- God was with us. 6 weeks after surgery, they put him back under, took the pins out, changed the casts, and did another operation to correct a unrelated problem (Hypospadia- that was so sad for him too! Poor guy). The only good thing after surgery was he got these blue, all fiberglass casts (no plaster) so they were super lightweight.
After another 6 weeks, on December 9th, when he was 9 months old, the casts were removed for good. His feet were perfect. We praised the Lord:
He was finally able to take baths, wear footsie pjs, go in the pool, wear shoes, and just bend his legs! He learned to crawl at 11 months, and was fitted with ankle-foot orthotics like the ones below to hold the correction achieved during surgery. They hindered his learning to walk, however, so we stopped putting them on until he learned to walk at 18 months. I praised the Lord for his faithfulness.
He also had a Dennis Brown bar at night to turn his feet out. (look at the wood on the crib... stupid bar chipped the heck out of his beautiful crib)...
When he turned 2, he got new AFOs for walking, and they fit inside these orthotic shoes. He'd been wearing versions of these AFOs from age 2 to 5.
At 4 years post-op. Josiah's feet were still remarkably better than where we started; however, like I've discussed in previous blogs, his feet still turn in, especially the left.
(You can see the different between a "normal" foot (baby Ava's) and Josiah's... the one on the right in the picture is his left foot. It curves. This is called metatarsus adductus. (The metatarsal bones are the ones connected to your toes (what you'd see looking down at the top of your foot). Adductus means turned toward the mid-line of the bodyIn the summer of '10 Dr. Hohl diagnosed him with tibial torsion. He wanted him to either wear these cables everyday all day which "might" correct it or have surgery.
After seeking out 3 more opinions, it was adamantly decided that he did NOT have tibial torsion and the surgery Hohl wanted to do was absolutely unnecessary.
The consensus was to leave him alone.
The bones are very small and still growing. All the surgical options at that time involved cutting tendons and bones.
Out of the 3 doctors we saw, Dr. Berenstain from Cedar Sinai was the one we liked the best, but soon after that appointment, we found out he moved to NY.
I decided in January of 2011 that I should establish care with a new ortho so that when the time was right, we would already be connected to someone we trusted.
I went back to Loma Linda because there was a new orthopedic surgeon there, and I was hoping he was at least nicer than the one we saw there before.
His name is Dr. Scott Nelson, and as soon as he walked in, I knew this was the one.
He actually looked at Josiah first, smiled, and shook his hand.
Most doctors walk in, and often talk to their nurse or residents as if you're not there.
Dr. Nelson is very personable. He explains everything clearly, he does not talk down to you or make you feel that you're wasting his time.
We discussed Josiah's previous treatment and misdiagnosis. He said it was a very common mistake to do tibia torsion surgery to "correct" residual clubfeet.
He discussed with me the "Fowler method" of correction that the previous doctors had discussed doing. This is essentially cutting a wedge out of one side of the bone, pushing the foot over, and sticking that piece of bone into the other side, creating a support (wedge).
He explained the problem with this surgery is that kid bones are so small and soft that as the feet grown, the wedge does not do a great job keeping the foot straight. Often follow up surgeries are needed, but hard to do due to the invasive-ness of that surgery.
He explained to us a relatively new way to treat clubfeet using the TAYLOR SPATIAL FRAME (TSF aka "the fixator.")
The frame is fixed to the bones of the foot & tibia. Using computer imaging, this frame mimics the deformity, then, it generates a "prescription of adjustments" that will bring itself back to the neutral (correct) position, taking the foot along with it.
Each night, the frame is adjusted (like turning the key on your mouth spacer for braces) by turning 6 knobs. These are done in millimeter increments... very quick & supposedly painless turns.
Just like the Ponsetti method of casting, this frame puts the foot in specific positions in a specific sequence. First the foot is brought over laterally, then brought up vertically, gradually stretching tendons, and causing bones to grow in the straighter position.
This was the least invasive surgical option we have heard of. There is no cutting of the tendons or bones, or even large incisions. It has had successful results, though because it is relatively new, the longest case study for Dr. Nelson is 4 years.
The truth of the matter is no clubfoot correction is forever.
Clubfeet is written in the DNA. We will always be fighting against it.
With that in mind, we felt that this would be the best option because it leaves the door open for future surgery if needed without creating scar tissue, stiff bones, etc.
Dr. Nelson recommend that we do this operation as soon as possible because the bones are tendons are most flexible the younger the child. Also, post-op will be harder on us the bigger Josiah got.
Surgery date was set for June 21st.
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