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Sunday, December 16, 2012
Update from Max's visit
We had a very busy day on Friday! Max and I flew out on a 6:30 am flight (we had to be up at 4:15am...). We were running a bit late and ended up literally running to our gate, despite making it through security pretty quickly. (The nice thing about having a wheelchair is that you go through the Priority lane at security.). We made it on time and were able to be the first people on the plane. Max was great on the flight, mostly just watching movies on the iPhone. Our flight got into Baltimore so early that we had to sit on the runway and wait for the plane that had not yet taken off from our gate. We arrived about 20 minutes ahead of schedule. Eric took a later flight out of Cleveland so we had about a 2 hour wait for him. We grabbed some breakfast and just hung out (again, Max watching movies and me, struggling to stay awake!). It was nice because Eric took the carseat with him. There was no way I was going to be able to carry the carseat and push Max in the wheelchair all day. Especially since we took a cab to the appointment and had to take the carseat with us the whole time we were at Dr. Ain's office. (The carseat is a Britex Champion and it is huge!). We have one of those pull along Go Go Babyz to pull the carseat it it is a huge pain in the neck!! Good concept, bad design! Eric had a horrible time trying to unhook the seat from the carrier multiple times during the trip! There has to be a better product out there for this (any suggestions??).
Anyways, we got to Hopkins about an hour before Max's appointment and, on the advice if several parents who have been through this, I gave Max a dose of Valium before the changing of the casts. I heard it can be very stressful, especially for a 3 and 1/2 year old. After we got registered (always takes at least 20-30 minutes...), they got X-rays in his current casts. Max was really starting to melllloooowwww from the Valium so he was super cooperative:-). I was shocked when I saw the X-rays on the monitor. I guess I never realized that he would be cutting both the tibia and the fibula. (Which does make sense because the fibula overgrow and bow, but I hadn't considered it and Dr. Ain had never mentioned it...) I will attach the X-ray after this post.
Then we went to get the casts off. The fellow that cut them off was very nice and very good with Max. We put headphones on Max with his Curious George songs on and he was so calm.
After the casts were off, Max pulled his legs straight up and put his feet right by his ears and just sat like that, completely folded in half!! I guess after not being able to do that for a month, that was the most comfortable position. We got to see his incisions. They are healing so nicely. Again, I didn't realize he had 2 incisions on each leg. (One for tibial and one for the fibular access). The tibial incision is pretty big...but will be a thin scar because he used continuous, dissolvable sutures. The other incision is about half the length. We got to wash him up a bit with soapy water (his feet were STINKY and all the skin is peeling off...) before they put the new casts off. It was hard to wash him up though because he just wanted to lay with his feet by his ears! He didn't give them any trouble at all when they put the new casts on (still in Valium-induced state:-). The new casts are very festive, red and green. The only difference is that they bent his knees at about a 30 degree angle. The last ones were mostly straight with very little bend at the knees. Dr. Ain said the casts will definitely come off in 4 weeks. Yay! Halfway there!!
I have to say that I even more proud of Max than I already was. He has been such a trooper through this whole experience and then I find out it was not just 2 bones that had been cut, but 4!! And 4 healing in incisions. He is truly amazing:-)
Our flight home was very uneventful (Eric had flown out before us so was waiting at airport with the car all ready for us). By the time we got home, we were exhausted! I am not looking forward to doing that same trip again in 4 weeks but at least we know we will be coming home cast-less after that visit! Yay!!
Anyways, we got to Hopkins about an hour before Max's appointment and, on the advice if several parents who have been through this, I gave Max a dose of Valium before the changing of the casts. I heard it can be very stressful, especially for a 3 and 1/2 year old. After we got registered (always takes at least 20-30 minutes...), they got X-rays in his current casts. Max was really starting to melllloooowwww from the Valium so he was super cooperative:-). I was shocked when I saw the X-rays on the monitor. I guess I never realized that he would be cutting both the tibia and the fibula. (Which does make sense because the fibula overgrow and bow, but I hadn't considered it and Dr. Ain had never mentioned it...) I will attach the X-ray after this post.
Then we went to get the casts off. The fellow that cut them off was very nice and very good with Max. We put headphones on Max with his Curious George songs on and he was so calm.
After the casts were off, Max pulled his legs straight up and put his feet right by his ears and just sat like that, completely folded in half!! I guess after not being able to do that for a month, that was the most comfortable position. We got to see his incisions. They are healing so nicely. Again, I didn't realize he had 2 incisions on each leg. (One for tibial and one for the fibular access). The tibial incision is pretty big...but will be a thin scar because he used continuous, dissolvable sutures. The other incision is about half the length. We got to wash him up a bit with soapy water (his feet were STINKY and all the skin is peeling off...) before they put the new casts off. It was hard to wash him up though because he just wanted to lay with his feet by his ears! He didn't give them any trouble at all when they put the new casts on (still in Valium-induced state:-). The new casts are very festive, red and green. The only difference is that they bent his knees at about a 30 degree angle. The last ones were mostly straight with very little bend at the knees. Dr. Ain said the casts will definitely come off in 4 weeks. Yay! Halfway there!!
I have to say that I even more proud of Max than I already was. He has been such a trooper through this whole experience and then I find out it was not just 2 bones that had been cut, but 4!! And 4 healing in incisions. He is truly amazing:-)
Our flight home was very uneventful (Eric had flown out before us so was waiting at airport with the car all ready for us). By the time we got home, we were exhausted! I am not looking forward to doing that same trip again in 4 weeks but at least we know we will be coming home cast-less after that visit! Yay!!
Thursday, December 13, 2012
Post-op visit tomorrow
Tomorrow we head back to Hopkins for our 4 week post-op check up. Eric and I will both be able to take him, which is good because the logistics of transportation and the enormous car seat is a NIGHTMARE!! Especially with Max in casts and a wheelchair...
Our appointment is at 11:25. I assume it will involve X-rays and checking out the incisions after he takes off the casts. I am going to give Max a dose of Valium about an hour before our appointment (on the advice of other moms;) and bring big headphones so he can watch Curious George on my phone while the cut off the casts...hope that distracts him enough! (I forget, am I supposed to take a swig of that Valium before this appointment too??!! Haha!). I have been warning him the they will cut off the casts but...they will put them back on!! I have also been demonstrating how the saw will vibrate too. (While gently shaking him...). I hope I have prepared him enough.
I keep telling Eric to remind me to ask about putting Max's feet in the sink to wash them before they put the casts on again. He hasn't had his feet washed in a month and they are stinky!! And the skin is all peeling off... It's not pretty!
I hope to hear good news that the bones are healing nicely and I hope to see nice straight legs under those casts;-)
I will update after our appointment. We fly back in tomorrow afternoon.
Our appointment is at 11:25. I assume it will involve X-rays and checking out the incisions after he takes off the casts. I am going to give Max a dose of Valium about an hour before our appointment (on the advice of other moms;) and bring big headphones so he can watch Curious George on my phone while the cut off the casts...hope that distracts him enough! (I forget, am I supposed to take a swig of that Valium before this appointment too??!! Haha!). I have been warning him the they will cut off the casts but...they will put them back on!! I have also been demonstrating how the saw will vibrate too. (While gently shaking him...). I hope I have prepared him enough.
I keep telling Eric to remind me to ask about putting Max's feet in the sink to wash them before they put the casts on again. He hasn't had his feet washed in a month and they are stinky!! And the skin is all peeling off... It's not pretty!
I hope to hear good news that the bones are healing nicely and I hope to see nice straight legs under those casts;-)
I will update after our appointment. We fly back in tomorrow afternoon.
Wednesday, November 28, 2012
12 Days Post Op and doing great!
Well, it's been 12 days since Max had his surgery and we have been doing well. We arrived home last Tuesday after a very uneventful flight and settled back into life with casts;-) Max has been doing super. He seemed very sad on the day we got home. I think he realized how the casts on his legs were going to keep him from moving and running around like he is used to doing at home. He has adapted like a pro though! He spends a lot of time sitting on the couch and watching his favorite Curious George movies but we have also been coloring and playing with play doh too! He still loves to play with Emmi and Aiden and I know he is looking forward to being able to tackle Aiden again soon...it is one of his favorite things to do with his big brother!
Pain has been an issue on and off, especially the first week and especially at night. We were giving him the tylenol and oxycodone only on demand and he was using it anywhere from every 6-12 hours. I started dropping the tylenol because it didn't seem to do as much and I was getting very concerned about how much tylenol he had been taking so I just was giving the oxycodone with or without the valium. Muscle spasms do seem to be the biggest issue because when he gets pain, he screams out and kicks his legs and then settles a bit and does it again. I assume bone pain would be more constant and he really has had no constant pain at all. The nights seem to be when the muscle spasms are the worst,when he relaxes his legs and sleeps. The meds seem to kick in after about 20-30 minutes. He has not needed any meds since 4:30 yesterday morning:-) He is a little messed up on bedtimes though. He didn't go to bed on Monday night until 2am and last night it was 12:45am before he finally fell asleep. He has been sleeping in until 10:45-noon then...this has been challenging! He has been sleeping in our bed with me and every time he rolls over or changes position, I wake up....Needless to say, I am exhausted:-( The meds never seemed to put Max to sleep. The valium will make him very mellow and VERY CHATTY!! Haha!
Max's casts are starting to get very loose at he tops. When he does get pain, he wants me to put my hands down the top of his casts and keep them there (not so far as to get to his knees or anywhere near his incisions though!). This seems to help his pain out a lot. He hates taking the meds so he prefers this method of pain control before having to pull out the big guns (oxy and valium). We were told by Dr. Ain to schedule for a follow up to have the cast changed out in 4 weeks. They are getting so loose that I think we will call and see if he wants us to fly out there earlier. That will be a quick day trip that Max and I will make. Then we will fly out again 4 weeks later (8 weeks post op) to get the casts take off for good (hopefully!). He told us to prevent Max from walking for a week or 2 after the casts come off and then he can start to build his strength up to walk again. They want him to be walking 4 weeks after the casts come off. If he is not, then they may recommend PT. I have a feeling Max will be running as soon as possible!
Max and I have pretty much been homebodies since we got home. I have not tried to take him out yet. We have a wheelchair, which is perfect for him, but weighs about 100 pounds!! (not really but it feels that way to me!). We should be getting the handicap parking permit paperwork from Dr. Ain's office in the mail any day now, which will help (especially in the holiday season). I have not even been able to make it to the store for groceries during the day. We have had some wonderful friends bringing us dinner at night which is so great!! I so appreciate all their kindness and the meals have been fantastic:-)
So, that's the update in a nutshell. Just trucking along, hoping that at the end of all this, Max has some new straight legs to show off!! I am so proud of that little boy! He has handled this surgery and recovery better than most adults would. He is one tough little guy and I adore him!!
Thank you all for your kind thoughts and prayers. We feel so blessed to have such great friends, other POLP's and complete strangers keeping him in your prayers!! Social media and blogging is an amazing way to share and receive:-) I plan to add some pictures so you can see Max's amazing little smile!
Pain has been an issue on and off, especially the first week and especially at night. We were giving him the tylenol and oxycodone only on demand and he was using it anywhere from every 6-12 hours. I started dropping the tylenol because it didn't seem to do as much and I was getting very concerned about how much tylenol he had been taking so I just was giving the oxycodone with or without the valium. Muscle spasms do seem to be the biggest issue because when he gets pain, he screams out and kicks his legs and then settles a bit and does it again. I assume bone pain would be more constant and he really has had no constant pain at all. The nights seem to be when the muscle spasms are the worst,when he relaxes his legs and sleeps. The meds seem to kick in after about 20-30 minutes. He has not needed any meds since 4:30 yesterday morning:-) He is a little messed up on bedtimes though. He didn't go to bed on Monday night until 2am and last night it was 12:45am before he finally fell asleep. He has been sleeping in until 10:45-noon then...this has been challenging! He has been sleeping in our bed with me and every time he rolls over or changes position, I wake up....Needless to say, I am exhausted:-( The meds never seemed to put Max to sleep. The valium will make him very mellow and VERY CHATTY!! Haha!
Max's casts are starting to get very loose at he tops. When he does get pain, he wants me to put my hands down the top of his casts and keep them there (not so far as to get to his knees or anywhere near his incisions though!). This seems to help his pain out a lot. He hates taking the meds so he prefers this method of pain control before having to pull out the big guns (oxy and valium). We were told by Dr. Ain to schedule for a follow up to have the cast changed out in 4 weeks. They are getting so loose that I think we will call and see if he wants us to fly out there earlier. That will be a quick day trip that Max and I will make. Then we will fly out again 4 weeks later (8 weeks post op) to get the casts take off for good (hopefully!). He told us to prevent Max from walking for a week or 2 after the casts come off and then he can start to build his strength up to walk again. They want him to be walking 4 weeks after the casts come off. If he is not, then they may recommend PT. I have a feeling Max will be running as soon as possible!
Max and I have pretty much been homebodies since we got home. I have not tried to take him out yet. We have a wheelchair, which is perfect for him, but weighs about 100 pounds!! (not really but it feels that way to me!). We should be getting the handicap parking permit paperwork from Dr. Ain's office in the mail any day now, which will help (especially in the holiday season). I have not even been able to make it to the store for groceries during the day. We have had some wonderful friends bringing us dinner at night which is so great!! I so appreciate all their kindness and the meals have been fantastic:-)
So, that's the update in a nutshell. Just trucking along, hoping that at the end of all this, Max has some new straight legs to show off!! I am so proud of that little boy! He has handled this surgery and recovery better than most adults would. He is one tough little guy and I adore him!!
Thank you all for your kind thoughts and prayers. We feel so blessed to have such great friends, other POLP's and complete strangers keeping him in your prayers!! Social media and blogging is an amazing way to share and receive:-) I plan to add some pictures so you can see Max's amazing little smile!
Tuesday, November 20, 2012
Monday, November 19, 2012
Sunday, November 18, 2012
Doing super!!
Yesterday was a long but uneventful day. Max was remarkably comfortable. He spent the day watching movies and napping. He ate some, not his usual appetite but it's coming along. He's drinking fluids well. No pooping yet...not surprising with all the narcotics though. I dread that though. Not sure how to handle that with casts that are up to his butt!! The covering peds orthopedist yesterday was not concerned about how high his casts are...but, he's not the one taking Max home. They come right into his groin crease to his scrotum and all the way to his little butt cheeks...I am very worried about rubbing and chafing. We will see what Dr. Ain says on Tuesday. They did say that Max's osteotomies (cuts in the bones) are very high on the tibias and the long casts are needed to help stabilize. Some kids have their cuts down lower and even down by the ankles...makes sense but will be challenging with these super high casts. The rounding peds Ortho team was great. (Sometimes the rounding teams, especially on the weekends, are clueless.) Dr. Tes was the attending and was very knowledgable and answered all of my questions. Again, I am impressed!
The nurse and Eric and I gave Max a sponge bath last night and washed his hair. He didn't love it but looked so much more comfortable afterwards. We changed his bedding and brushed his teeth and hair. He looked so handsome;-). He ate some of a subway turkey sub and watched Toy Story 3. Eric left for the children's house about 10 and we gave Max a dose of Valium about 11:30. He haven't had any other Valium since 8:30am yesterday. They had stopped his basal rate dilauded yesterday morning and we only pushed the button for a bolus twice all day. He has been on Tylenol and ocycodone every 4 hours and it has been working well:-). He fell asleep and slept very soundly until the 4am meds and then woke up. He was complaining of a lot of back pain and was literally writhing around in bed, not crying but saying "it really hurts". :-(. He finally fell asleep after an hour. We had pushed for a bolus of dilauded so that may have helped. I think (as does Ortho) that it is positional. He has been laying on his back since surgery... Peds Ortho came around about 6a and pulled the drains out. He didn't even wake up (actually, it's 7:48am and he's still sound asleep). They are very pleased and are getting all of our stuff ready for discharge. The whole time he was here, the pain management team has managed his pain medications (these are anesthesiologists). We met them yesterday and they (also) were great. (Actually, the doctor grew up in Youngstown and went to NEOUCOM (my medical school). He was 2 years ahead of me...small world!) I need to ask them for specific instructions on what they recommend as a pain regimen after discharge. I would hate to go home and have him start with a lot of pain... We will get the prescriptions filled here today.
I ordered Max his pancakes for breakfast. He was asking all last night for them! Hopefully they will be here by the time he wakes up. He will be so excited when the IV comes out today:-). I'm still explaining to him that the casts come home with us...he's hoping those will be gone today too!! We are headed back to the Children's House until we leave on Tuesday.
Thanks again for all your prayers and thoughts and good wishes! We appreciate each and every one:-)
Think BIG!
Sent from my iPhone
Michelle M. Platz M.D.
The nurse and Eric and I gave Max a sponge bath last night and washed his hair. He didn't love it but looked so much more comfortable afterwards. We changed his bedding and brushed his teeth and hair. He looked so handsome;-). He ate some of a subway turkey sub and watched Toy Story 3. Eric left for the children's house about 10 and we gave Max a dose of Valium about 11:30. He haven't had any other Valium since 8:30am yesterday. They had stopped his basal rate dilauded yesterday morning and we only pushed the button for a bolus twice all day. He has been on Tylenol and ocycodone every 4 hours and it has been working well:-). He fell asleep and slept very soundly until the 4am meds and then woke up. He was complaining of a lot of back pain and was literally writhing around in bed, not crying but saying "it really hurts". :-(. He finally fell asleep after an hour. We had pushed for a bolus of dilauded so that may have helped. I think (as does Ortho) that it is positional. He has been laying on his back since surgery... Peds Ortho came around about 6a and pulled the drains out. He didn't even wake up (actually, it's 7:48am and he's still sound asleep). They are very pleased and are getting all of our stuff ready for discharge. The whole time he was here, the pain management team has managed his pain medications (these are anesthesiologists). We met them yesterday and they (also) were great. (Actually, the doctor grew up in Youngstown and went to NEOUCOM (my medical school). He was 2 years ahead of me...small world!) I need to ask them for specific instructions on what they recommend as a pain regimen after discharge. I would hate to go home and have him start with a lot of pain... We will get the prescriptions filled here today.
I ordered Max his pancakes for breakfast. He was asking all last night for them! Hopefully they will be here by the time he wakes up. He will be so excited when the IV comes out today:-). I'm still explaining to him that the casts come home with us...he's hoping those will be gone today too!! We are headed back to the Children's House until we leave on Tuesday.
Thanks again for all your prayers and thoughts and good wishes! We appreciate each and every one:-)
Think BIG!
Sent from my iPhone
Michelle M. Platz M.D.
Saturday, November 17, 2012
My child amazes me...
It is 4:57am and Max has been awake since the nurse came in at 4am to check his vitals and give him some Valium and Tylenol. He is very comfortable and extremely chatty!!
Yesterday was not nearly as bad as I had anticipated. Immediately post op in the PACU was hard. The cast is enormous and the bar between his legs is literally made of if a piece if wood..looks like something made in shop class! Max was pretty groggy and wanted water, but overall seemed comfortable. He wasn't in PACU for long because he had no issues and came out of anesthesia without any problems. He even had a Popsicle down there (they gave him a purple one...probably not the best choice because his purple lips made him look totally cyanotic to the nurses on the floor...we had to keep saying "purple Popsicle" everything a new person came in!)
He moved up to the floor and I posted a picture of him being transported. He had his monkeys and George was propping up my iPhone so he could watch Curious George on it:-). He was so quiet and content.
When we arrived at 9S, the reception was amazing. Our nurse, Jess, was so great! She helped get him transferred to the big bed (that I can sleep in with him:-) and got him all comfortable. She was here until 7p and was truly a fantastic caregiver! He had periods of crying and pain and he HATED the casts but mostly he hates the IV board on his left hand that is covered with a sock. He flaps that around like a bird trying desperately to take flight when he is agitated (and you have to watch out, I got smacked in the face a few times!). He was pretty uncomfortable for a few hours and pushing the PCA button only gave him about 10 minutes of relief, so they ended up increasing the continuous basal rate on his pump, which made a huge difference. We rarely have to press the button for a bolus of dilauded. He is also getting Valium every 4 hours for muscle spasms, which helps immensely with when he gets agitated with the IV and casts. I would have thought he would snooze after getting the Valium, but instead he gets very mellow and extremely chatty!! He talks and talks and talks about anything and everything and is happy as can be (we all need to get some of that good stuff!).
Last evening he was way more comfortable and ate some green beans, grapes, applesauce and a few bites of Mac and cheese. He got a bit nauseous and threw up a little so he got some zofran, which helped. He has been peeing like a champ in the hand held urinal. It takes 2 of us, one to lift him straight up and one to hold the urinal. He has very little discomfort being picked up. He gives big hugs while being held:-). He's watched a ton on George movies and finally settled into sleep around 11p last night. He slept very soundly until 4am. The overnight nurse, Kirstie, is also amazing. He loves her! She has been in every hour, on the hour to check on him. I got some sleep in the pull out couch (after he fell asleep I was able to sneak over there. He prefers me right next to him in his bed. I love the snuggles but it's not the most comfortable! I am in his bed now and he fell back asleep:-). He needed a couple of boluses of dilauded since 4 (he can get one every 8 minutes) because he was saying I was on his legs, which I was not, so I new he was having some pain. He doesn't cry with the pain, he just says "owwww."
I am assuming the Ortho team will be here any minute (it's 5:25 now). Dr. Ain is not on call this weekend so we won't see him until Tuesday in the office. I am very concerned that the casts are up too high on his legs. They are almost up to his butt cheeks and I'm afraid that when he sits for long periods of time (which he will be doing a lot of) this will be very irritating. The nurse called the Ortho team last night to check on the casts and 3 residents came by. They were very nice but, having been a resident, the main goal of the covering residents is to keep patients alive overnight and defer everything else to the primary team in the morning. First of all, they were adult Ortho covering for peds (which is fine). They pretty much just assessed him for compartment syndrome (bad potential complication of this surgery) making sure the casts weren't too tight (which they weren't) and deferred to the primary team. I still think the casts need to be cut down. We'll see what they say shortly.
The goals of today are to get him off the PCA pump and on oral narcotic pain meds and Valium. He's already eating and drinking well. He is an amazing patient. Despite what happened to him yesterday, he lets them do anything to/with him without so much as a peep. He talks to the nurses, smiles and takes all the oral medicine they give him in syringes like a champ!! (Although he HATED the stool softener...he may refuse that one today!). I just look at him and am amazed by his bravery and charm. I was afraid having the surgery he would become scared that it would make him fearful of people examining him but he is the same extroverted, charming little boy as he was before. He is truly amazing to me:-). I absolutely adore him...even more than I already did! I am sure he will handle the next 8 weeks in casts like a pro:-).
Eric went back to the Children's House last night so he will come in today nice and rested and I will try to grab a snooze on the couch here. Max is a mommy's boy though and really doesn't want me out of arms reach (which I love!)
So, that's the up to the minute update. Thank you all for your prayers and support! We so appreciate it!!
Think BIG!
Sent from my iPhone
Michelle M. Platz M.D.
Yesterday was not nearly as bad as I had anticipated. Immediately post op in the PACU was hard. The cast is enormous and the bar between his legs is literally made of if a piece if wood..looks like something made in shop class! Max was pretty groggy and wanted water, but overall seemed comfortable. He wasn't in PACU for long because he had no issues and came out of anesthesia without any problems. He even had a Popsicle down there (they gave him a purple one...probably not the best choice because his purple lips made him look totally cyanotic to the nurses on the floor...we had to keep saying "purple Popsicle" everything a new person came in!)
He moved up to the floor and I posted a picture of him being transported. He had his monkeys and George was propping up my iPhone so he could watch Curious George on it:-). He was so quiet and content.
When we arrived at 9S, the reception was amazing. Our nurse, Jess, was so great! She helped get him transferred to the big bed (that I can sleep in with him:-) and got him all comfortable. She was here until 7p and was truly a fantastic caregiver! He had periods of crying and pain and he HATED the casts but mostly he hates the IV board on his left hand that is covered with a sock. He flaps that around like a bird trying desperately to take flight when he is agitated (and you have to watch out, I got smacked in the face a few times!). He was pretty uncomfortable for a few hours and pushing the PCA button only gave him about 10 minutes of relief, so they ended up increasing the continuous basal rate on his pump, which made a huge difference. We rarely have to press the button for a bolus of dilauded. He is also getting Valium every 4 hours for muscle spasms, which helps immensely with when he gets agitated with the IV and casts. I would have thought he would snooze after getting the Valium, but instead he gets very mellow and extremely chatty!! He talks and talks and talks about anything and everything and is happy as can be (we all need to get some of that good stuff!).
Last evening he was way more comfortable and ate some green beans, grapes, applesauce and a few bites of Mac and cheese. He got a bit nauseous and threw up a little so he got some zofran, which helped. He has been peeing like a champ in the hand held urinal. It takes 2 of us, one to lift him straight up and one to hold the urinal. He has very little discomfort being picked up. He gives big hugs while being held:-). He's watched a ton on George movies and finally settled into sleep around 11p last night. He slept very soundly until 4am. The overnight nurse, Kirstie, is also amazing. He loves her! She has been in every hour, on the hour to check on him. I got some sleep in the pull out couch (after he fell asleep I was able to sneak over there. He prefers me right next to him in his bed. I love the snuggles but it's not the most comfortable! I am in his bed now and he fell back asleep:-). He needed a couple of boluses of dilauded since 4 (he can get one every 8 minutes) because he was saying I was on his legs, which I was not, so I new he was having some pain. He doesn't cry with the pain, he just says "owwww."
I am assuming the Ortho team will be here any minute (it's 5:25 now). Dr. Ain is not on call this weekend so we won't see him until Tuesday in the office. I am very concerned that the casts are up too high on his legs. They are almost up to his butt cheeks and I'm afraid that when he sits for long periods of time (which he will be doing a lot of) this will be very irritating. The nurse called the Ortho team last night to check on the casts and 3 residents came by. They were very nice but, having been a resident, the main goal of the covering residents is to keep patients alive overnight and defer everything else to the primary team in the morning. First of all, they were adult Ortho covering for peds (which is fine). They pretty much just assessed him for compartment syndrome (bad potential complication of this surgery) making sure the casts weren't too tight (which they weren't) and deferred to the primary team. I still think the casts need to be cut down. We'll see what they say shortly.
The goals of today are to get him off the PCA pump and on oral narcotic pain meds and Valium. He's already eating and drinking well. He is an amazing patient. Despite what happened to him yesterday, he lets them do anything to/with him without so much as a peep. He talks to the nurses, smiles and takes all the oral medicine they give him in syringes like a champ!! (Although he HATED the stool softener...he may refuse that one today!). I just look at him and am amazed by his bravery and charm. I was afraid having the surgery he would become scared that it would make him fearful of people examining him but he is the same extroverted, charming little boy as he was before. He is truly amazing to me:-). I absolutely adore him...even more than I already did! I am sure he will handle the next 8 weeks in casts like a pro:-).
Eric went back to the Children's House last night so he will come in today nice and rested and I will try to grab a snooze on the couch here. Max is a mommy's boy though and really doesn't want me out of arms reach (which I love!)
So, that's the up to the minute update. Thank you all for your prayers and support! We so appreciate it!!
Think BIG!
Sent from my iPhone
Michelle M. Platz M.D.
Friday, November 16, 2012
After doing the arthrograms in the OR, Max will be having both legs done today.
I guess that's a good thing...if they both need to be done, better now under anesthesia at the same time then having to come back again... Now we wait longer... The nurse said Dr. Ain had the OR booked until noon so hopefully he will be out by then. They will call back in and hour and a half with an update...
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Michelle M. Platz M.D.
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Michelle M. Platz M.D.
Here we go...
We are staying at the Children's House (like the Ronald McDonald House) and so far, it has been great. We got in last night about 6p and they had a group bring in a home cooked meal. It was potato soup and rolls with salad and grapes. Eric and I enjoyed it but Max was not a fan of most of it. He ate a few grapes and a cookie;-). Then we went to the playroom and Max was in his glory!! I posted a video of it last night but I'm not sure if it worked. We played for a while then I gave Max a quick bubble bath and got him in his PJs and was hoping to get him asleep at a reasonable time. We turned off the lights at 9pm but Max was wide awake!! He was in bed with me and was literally jumping and rolling all over the bed and all over me. He was tossing his monkeys (he has Curious George and a monkey from Aiden) all over the place! And he was full of hugs and kisses for me!! Finally, around 10:30, the movement in bed started to slow down and he fell asleep... He slept pretty soundly, which i am happy about. Our alarm went off at 4:45 and he was looking around by 4:50 and wide awake, which was surprising! He was hungry and not pleased that we couldn't give him anything:-(.
We walked about 2 blocks to get here from the Children's House. It was brisk but not to cold out. Max wanted to wear his cute feeted PJs instead of clothes and his winter hat. He looked adorable:-).
He made friends in the waiting room with another little boy who also loves Curious George:-). They got to play together in the playroom after we got all gowned up too. He was very happy and smiley (as usual!).
Then, about 7:25, the teams descended upon us! The anesthesiologist and CRNA were first. They were truly wonderful and I felt very relieved! While they were in with us, Dr. Ain and his nurse popped in. Then the Ortho resident and the OR nurse came in. It was a bit chaotic but I was thoroughly impressed with everyone we came in contact with. The resident told us that there will be a resident, fellow and Dr. Ain in on Max's case. Max was so good despite all of the doctors and people touching him. He never fussed or cried once.
I got to gown up and carry him back to the OR. That was difficult...walking in to the OR with all of the equipment and bright lights didn't even phase Max. He sat up on the bed like a big boy and smiled:-). Dr Ain was sitting in the room and we chatted a bit. I had been preparing Max at home about the face mask that would put him to sleep. He knew that when they put it on him, he was supposed to take deep breaths and that's exactly what he did! Until he realized he didn't like the smell and struggled just a bit... It took about 45 seconds and he was out...he heard me repeating "I love you Max" over and over as he went to sleep. It is so hard to see your baby put to sleep and essentially helpless...I am confident he is in good hands though and I said many prayers in the OR for God to be present. I am confident He is.
So, we are in the waiting room now...procedure officially started about 8:20. I assume we will know within the hour if he has decided to do both legs.
Max picked green for his cast color:-). I can't wait to hold him after he's all done! Thanks for all the prayers and thoughts!! I'll update soon.
We walked about 2 blocks to get here from the Children's House. It was brisk but not to cold out. Max wanted to wear his cute feeted PJs instead of clothes and his winter hat. He looked adorable:-).
He made friends in the waiting room with another little boy who also loves Curious George:-). They got to play together in the playroom after we got all gowned up too. He was very happy and smiley (as usual!).
Then, about 7:25, the teams descended upon us! The anesthesiologist and CRNA were first. They were truly wonderful and I felt very relieved! While they were in with us, Dr. Ain and his nurse popped in. Then the Ortho resident and the OR nurse came in. It was a bit chaotic but I was thoroughly impressed with everyone we came in contact with. The resident told us that there will be a resident, fellow and Dr. Ain in on Max's case. Max was so good despite all of the doctors and people touching him. He never fussed or cried once.
I got to gown up and carry him back to the OR. That was difficult...walking in to the OR with all of the equipment and bright lights didn't even phase Max. He sat up on the bed like a big boy and smiled:-). Dr Ain was sitting in the room and we chatted a bit. I had been preparing Max at home about the face mask that would put him to sleep. He knew that when they put it on him, he was supposed to take deep breaths and that's exactly what he did! Until he realized he didn't like the smell and struggled just a bit... It took about 45 seconds and he was out...he heard me repeating "I love you Max" over and over as he went to sleep. It is so hard to see your baby put to sleep and essentially helpless...I am confident he is in good hands though and I said many prayers in the OR for God to be present. I am confident He is.
So, we are in the waiting room now...procedure officially started about 8:20. I assume we will know within the hour if he has decided to do both legs.
Max picked green for his cast color:-). I can't wait to hold him after he's all done! Thanks for all the prayers and thoughts!! I'll update soon.
Thursday, November 15, 2012
Wednesday, November 14, 2012
Headed to Baltimore tomorrow
Max's wheelchair was delivered tonight and he loved it!! Emmi was driving him all around the house in it:-). It fits him perfectly although they are going to swap this one out in Baltimore for a reclining chair that was requested per Dr. Ain's office.
I am getting very nervous as we are leaving for Baltimore tomorrow afternoon. Leaving Aiden and Emmi home will be hard. I know they will have a fun time having sleepovers with their buddies but I will miss them! I am getting very anxious about surgery on Friday morning. So far Max is healthy as a horse but I still have concerns of a fever popping up out if the blue, like last time. I know we are in great hands at Hopkins and with Dr. Ain... I just want to be in the other side of this surgery and in the healing phase. Max is such an active 3 year old boy that the idea of him not running and climbing and dancing around for 8-10 weeks makes me sad... But I know we are doing the right thing for him to be able to do all those things as he gets older.
We appreciate any and all prayers this week and while he is recovering!! I will keep the blog up to date with how he is doing.
I am getting very nervous as we are leaving for Baltimore tomorrow afternoon. Leaving Aiden and Emmi home will be hard. I know they will have a fun time having sleepovers with their buddies but I will miss them! I am getting very anxious about surgery on Friday morning. So far Max is healthy as a horse but I still have concerns of a fever popping up out if the blue, like last time. I know we are in great hands at Hopkins and with Dr. Ain... I just want to be in the other side of this surgery and in the healing phase. Max is such an active 3 year old boy that the idea of him not running and climbing and dancing around for 8-10 weeks makes me sad... But I know we are doing the right thing for him to be able to do all those things as he gets older.
We appreciate any and all prayers this week and while he is recovering!! I will keep the blog up to date with how he is doing.
Friday, November 2, 2012
Friday November 16th is the new official date unless...
So, at this point, we have been given a new surgical date of Friday November 16th...5 weeks from the last surgical date. Eric has called many times about getting this date moved up and so far, no luck. They did say that if there is another cancellation prior to the 16th, they will call us. This would give us very little time to get packed, get a flight and have a plan for Aiden and Emmi. Also, this could come at a time when Eric is out of town for business....and the biggest fly in the soup is if Max picks up another illness (which would be totally typical for a 3 year old in November!). So, we are hoping for a call earlier because I am losing sleep over the possibility he will end up sick again. I wish I could put him in a bubble and keep all the germs out! He has been out of school since the end of September and certainly cannot go back now. I know he loves being home with me but he always loved playing with his friends at school too. I will keep you all posted if we get in any earlier :-)
Thursday, October 11, 2012
Still waiting for next surgical date...
Max is feeling a bit better today. No fever yet. He started on antibiotics yesterday after seeing our pediatrician. I really feel that this is likely just a new viral thing, but he has had a lingering cough (although mild) and congestion for the past several weeks so we chose to treat just to be sure. It is going to be nearly impossible to keep a 3 year old healthy for the next month. They seem to pick up every germ that flies by! He will be out of school that whole time for sure though. Stomach flu has hit the house this week though and I really hope it leaves quickly! Max has not gotten it but had a huge vomiting episode last night after a coughing fit:-( I just need to get this surgery on the schedule soon so I can begin planning (again!!). I will let you know when we know. We are supposed to call tomorrow and hopefully we will find out!
Monday, October 8, 2012
Well, it's going to be a no-go...
Tonight Max's temperature is 103.3. There is no way they will take him to surgery on Wednesday... Meeting with Dr. Ain in the morning to come up with plan and hopefully schedule for next time. His nurse called me tonight and said that sometimes anesthesia requires that you wait 1 month.Ugh:-(. For some reason, this surgery wasn't meant to happen this week. We'll see what they say in am. We are going to fly home tomorrow afternoon.
Meanwhile, Max just took a bath, got his hair washed and is snug as a bug in a rug watching The Lorax, which is his favorite movie. We have it at home but I just paid $13.99 + tax to rent it in the hotel!!! Ugh! He's happy so I'm happy. He just rolled over to give me a hug and he is SO HOT :-(.
I'll update tomorrow with the new plan.
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Michelle M. Platz M.D.
Meanwhile, Max just took a bath, got his hair washed and is snug as a bug in a rug watching The Lorax, which is his favorite movie. We have it at home but I just paid $13.99 + tax to rent it in the hotel!!! Ugh! He's happy so I'm happy. He just rolled over to give me a hug and he is SO HOT :-(.
I'll update tomorrow with the new plan.
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Michelle M. Platz M.D.
So...surgery or no surgery...that is the question...
Max finally woke up about 10:45 and still felt warm. He was happy and smiley though, but he most always is. We got ready and grabbed some food from downstairs and headed out for a bit to pass the time. He was delightful, but still felt warm and looked a bit under the weather too.
So, we met with anesthesia this afternoon. They took his vitals and , sure enough, he was 100.7. Definitely a fever... His pulse ox was 99% and he still felt warm. We met with an anesthesia physicians assistant who noted the fever and cough and became very obvious that this was not good. He was almost apologetic, saying a fever and cough in a child for an elective surgery is not a good idea I explained that I am a physician and I understand the situation. He did a very thorough exam and went to talk to the attending physician. While he was gone, I texted Eric that the surgery was likely off and to call Dr. Ain's office (our surgeon), to see when the next available surgical date is. We are a bit crunched for time to get this done with all the things going on in the next 6 months. He texted back and said that they talked to Dr Ain and he wants to see Max at 8am tomorrow. By the time the PA came back in, he already knew Eric had called Ain's office (that's pretty quick communication!!). The attending surgeon had wanted Dr. Ain to see Max before any official decision is made. I want to do what is best for Max. If we need to reschedule, we should. So, Eric is either flying in tonight or first thing tomorrow to be here to meet with Dr. Ain. I am going to go buy a thermometer so I can keep track of his temperatures tonight. Hopefully he won't have any more fevers. I will defer to whatever decision anesthesia makes.
Stay tuned. We will know more tomorrow, although if he coughs all night and continues with fevers, it will be an obvious no to surgery.
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Michelle M. Platz M.D.
So, we met with anesthesia this afternoon. They took his vitals and , sure enough, he was 100.7. Definitely a fever... His pulse ox was 99% and he still felt warm. We met with an anesthesia physicians assistant who noted the fever and cough and became very obvious that this was not good. He was almost apologetic, saying a fever and cough in a child for an elective surgery is not a good idea I explained that I am a physician and I understand the situation. He did a very thorough exam and went to talk to the attending physician. While he was gone, I texted Eric that the surgery was likely off and to call Dr. Ain's office (our surgeon), to see when the next available surgical date is. We are a bit crunched for time to get this done with all the things going on in the next 6 months. He texted back and said that they talked to Dr Ain and he wants to see Max at 8am tomorrow. By the time the PA came back in, he already knew Eric had called Ain's office (that's pretty quick communication!!). The attending surgeon had wanted Dr. Ain to see Max before any official decision is made. I want to do what is best for Max. If we need to reschedule, we should. So, Eric is either flying in tonight or first thing tomorrow to be here to meet with Dr. Ain. I am going to go buy a thermometer so I can keep track of his temperatures tonight. Hopefully he won't have any more fevers. I will defer to whatever decision anesthesia makes.
Stay tuned. We will know more tomorrow, although if he coughs all night and continues with fevers, it will be an obvious no to surgery.
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Michelle M. Platz M.D.
Why all the posts and details?
So, I have obviously been writing in much detail about our trip so far. I told all our friends and family that I would keep them up to date regarding our trip, surgery and Max's recovery through my blog. It is much easier than texting everyone all the details or repeating the story over and over.
Thanks for reading and thanks for all your well wishes and prayers:-)
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Michelle M. Platz M.D.
Thanks for reading and thanks for all your well wishes and prayers:-)
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Michelle M. Platz M.D.
Rough night...and we haven't even had surgery!
It's 9:23 am and Max is still asleep. It was a rough night. Our room service took forever to her here (they wrote our room number down wrong when I called so we got it on the house) and Max was bouncing off the walls. We didn't eat till 11pm:-(. When we finally got all tucked in, he was all over the place and didn't fall asleep till after midnight.
He has been fighting a cold for several weeks now. It started with a croupy cough at night only and a yucky nose only if he sneezes. I had him checked by the pediatrician last Monday and we saw our ENT on Thursday. Both said his ears looked great and his lungs were clear. Yesterday though, his cough became more persistent (it had been getting more frequent) and he sounded very hoarse and if he sneezed, you needed a box of kleenexes to mop up the mess! After he finally fell asleep, he started coughing non stop...for about an hour. To the point where he started to vomit. So, we had to get up (at 2am) and get him cleaned up and settled back down. He was so sweet and lovey despite the coughing and the vomiting:-). Then I noticed he felt pretty warm. I was convinced he had a fever:-(. Finally he fell back asleep and I was obsessively putting my hands in him trying to figure out if he did in fact have a fever. That would probably change our plans of surgery this week...I am not convinced he did. Maybe a low grade. We'll see how he is today. After all that coughing at 2am, he hasn't coughed since. He had several episodes where he was very restless and kicking and rolling all around but he fell back asleep. Max is a great sleeper. He may sleep till 11! Needless to say, I hardly slept at all. And like a cruel joke, at 5:58am, when I was actually sleeping, the hotel alarm clock went off...that was super!!
So, I will have to see what anesthesia says today. This is an elective surgery so they may chose not to do it because he gas this viral respiratory infection, especially if he is truly getting fevers (I usually pack thermometers and Tylenol for the kids but I packed really light for our plane trip because Eric can bring the rest when he drives up tomorrow). I can't even think about having to make all the arrangements we have has to make to get here and get this done again...I am not going to think about that... I am staying positive! At the same time though, I don't want them to take him to surgery sick if it is not safe...
Prayers for no more coughing and no fevers would be greatly appreciated:-)
I'll write more later!
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Michelle M. Platz M.D.
He has been fighting a cold for several weeks now. It started with a croupy cough at night only and a yucky nose only if he sneezes. I had him checked by the pediatrician last Monday and we saw our ENT on Thursday. Both said his ears looked great and his lungs were clear. Yesterday though, his cough became more persistent (it had been getting more frequent) and he sounded very hoarse and if he sneezed, you needed a box of kleenexes to mop up the mess! After he finally fell asleep, he started coughing non stop...for about an hour. To the point where he started to vomit. So, we had to get up (at 2am) and get him cleaned up and settled back down. He was so sweet and lovey despite the coughing and the vomiting:-). Then I noticed he felt pretty warm. I was convinced he had a fever:-(. Finally he fell back asleep and I was obsessively putting my hands in him trying to figure out if he did in fact have a fever. That would probably change our plans of surgery this week...I am not convinced he did. Maybe a low grade. We'll see how he is today. After all that coughing at 2am, he hasn't coughed since. He had several episodes where he was very restless and kicking and rolling all around but he fell back asleep. Max is a great sleeper. He may sleep till 11! Needless to say, I hardly slept at all. And like a cruel joke, at 5:58am, when I was actually sleeping, the hotel alarm clock went off...that was super!!
So, I will have to see what anesthesia says today. This is an elective surgery so they may chose not to do it because he gas this viral respiratory infection, especially if he is truly getting fevers (I usually pack thermometers and Tylenol for the kids but I packed really light for our plane trip because Eric can bring the rest when he drives up tomorrow). I can't even think about having to make all the arrangements we have has to make to get here and get this done again...I am not going to think about that... I am staying positive! At the same time though, I don't want them to take him to surgery sick if it is not safe...
Prayers for no more coughing and no fevers would be greatly appreciated:-)
I'll write more later!
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Michelle M. Platz M.D.
Sunday, October 7, 2012
Made it to Baltimore!
Well, we made it here. It was an uneventful flight, although a little bumpier than I like at times (I like NO bumps!). Max was a champ. He played games and puzzles on the iPhone and looked out the window. He was happy as a clam the whole flight. This was the first flight he has been on without a car seat. He didn't love the seatbelt, but I think it was because he was being very wiggly! The toughest part was that we got off the plane and had to de-board onto the tarmac and grab our luggage and go back up a flight of stairs back into the airport. Well, I had to carry him and 2 bags down the steps and get a 3rd bag and the stroller and go back up the stairs...this was not going to be easy. I debated my options...take him to the top and leave him and run back down to get the bags (that sounded like a really bad idea!!) or leave him down and carry the bags/stroller up and run back down and get him (equally bad!!). A very nice airline worker must have seen me debating and came over to help me and carried the stroller up for me. It was still a challenge to get the 3 bags and Max up but we made it! (although I was huffing and puffing at the top!).
We finally made it to meet with the car service to take us I the hotel. Another issue. He came bearing the oldest and most unsafe carseat I have ever seen. It would not strap in and moved in all directions after strapped it! Worse than that, the part of the 5 point harness that is supposed to be at the armpit level would not lower and sat directly over his neck. If the driver hit his breaks, it would crush his trachea... I was not putting him in it! The driver even agreed the seat was unacceptable. So, after many calls from the driver and Eric (from home) another driver with a more acceptable (but still not super) carseat came to pick us up. We got in at 8:15p and were not en route to the hotel until 9:40p... Max was a CHAMP!! He sat in his stroller curbside with the iPad and his headphones watching muppets;-).
So, as I write this, it is 10:53 and we are waiting for some room service food. Max is starving and wanted PB&J. If it doesn't get here soon, he will be asleep! We meet with anesthesia tomorrow at 1:30 so we can sleep in (and we will!). That is all we have in the schedule tomorrow.
I'll write more soon! Goodnight!!
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Michelle M. Platz M.D.
We finally made it to meet with the car service to take us I the hotel. Another issue. He came bearing the oldest and most unsafe carseat I have ever seen. It would not strap in and moved in all directions after strapped it! Worse than that, the part of the 5 point harness that is supposed to be at the armpit level would not lower and sat directly over his neck. If the driver hit his breaks, it would crush his trachea... I was not putting him in it! The driver even agreed the seat was unacceptable. So, after many calls from the driver and Eric (from home) another driver with a more acceptable (but still not super) carseat came to pick us up. We got in at 8:15p and were not en route to the hotel until 9:40p... Max was a CHAMP!! He sat in his stroller curbside with the iPad and his headphones watching muppets;-).
So, as I write this, it is 10:53 and we are waiting for some room service food. Max is starving and wanted PB&J. If it doesn't get here soon, he will be asleep! We meet with anesthesia tomorrow at 1:30 so we can sleep in (and we will!). That is all we have in the schedule tomorrow.
I'll write more soon! Goodnight!!
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Michelle M. Platz M.D.
Friday, September 21, 2012
Starting to blog again!!
Well, it's been a LONG time since my last entry! I am going to try to keep this updated more frequently now! We are headed into a very busy time!
Max turned 3 in July. He is still the happiest, smiliest kid ever:-). He is talking up a storm and is extremely smart and inquisitive! Emmi just turned 6 this past week and started Kindergarten this year. She is loving it! Max and I miss her terribly while she is at school though! It has been the 3 of us paling around during the day for so long! Aiden is in 4th grade, almost 10 years old! He is so sweet and so very handsome! So far, he is doing great in school. The homework is very time consuming this year but I think he is taking it all in stride and doing very well.
We have a lot coming up in the next several weeks. Emmi is having her birthday party and we are having our annual Halloween party for Aiden and his friends. All on the same day!! Both are costume parties and, despite the work that goes into putting on the party, I love it! Then, 2 days later, Max and I leave to head to Baltimore for his pre-op appointments for his surgery. Max is having his left leg, and possibly his right leg, straightened. His left leg is very bowed, and although it is not causing him any pain or disability, his entire knee joint shifts out to the side with each step he takes (this is called a lateral or a fibular thrust). This is the reason they recommend surgery. Our surgeon recommended surgery in February, but after getting 2 other opinions around the country, we decided to hold off a bit. The left leg and knee has definitely worsened in the meantime. This is a pretty big surgery for our little guy and I am extremely anxious about it... Please keep Max in your prayers. His surgery is October 10th. After surgery, he will be in cast(s) for 8 weeks, non-weight bearing. That will be hard since he is so active! I will keep everyone updated on his progress through this blog.
Well, I am going to post a few pics of Aiden and Emmi and then it's off to bed:-)
Tuesday, February 21, 2012
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