My precious little Maddie...A surgical update
March 2, 2011 at 10:10pm
So...I have been thinking about writing this message all day but I am having trouble finding the energy to do so. I think I am just emotionally exhausted and putting everything into words makes me even more so. First of all, Maddie is doing GREAT!! She will be 4 years old in a little over a week and is just as happy and active as any other kid her age. As some of you know, we have been diagnosing and trying to 'treat' her sleep apnea for almost a year. Unfortunately, she is not tolerating the CPAP and therefore we have been left to look into other options to help with the sleep apnea, b/c left alone, we could start to see a decline in her development as well as other health issues due to continued loss of oxygen night after night.
Ok, now I need to do a little backtracking...last October we had an appt at the dentist and found out that Maddie had a few cavaties that needed to be addressed. Sounds simple enough, however, in Maddie's case this turned into quite a fiasco. The problem is that Maddie's mouth barely opens, we can't even get a toothbrush in her mouth to brush the insides/tops of her teeth, hence the cavities. The dentist said that she couldn't even get the tools needed to fix the cavities in her mouth due to the small opening. We then met with the oral surgeon who did a scan and found that on the left side of her jaw there is a bone that has fused a part of the upper and lower jaw together, and thinks this may be the reason her mouth doesn't open very wide. He told us we could schedule surgery and he could go in and 'unfuse' the bone, therefore allowing her mouth to open more, and at the same time, the dentist could get in and work her magic as well. Okay, sounds like a plan, we scheduled surgery for January 28.
While all this was going on we were doing everything in our power, bribing with toys, tv, whatever it took to try to get Maddie to wear her CPAP mask but were having NO luck. When Maddie can take the mask off and turn the machine off, there's not much else we can do! We had a follow up appointment with her plastic surgeon at the beginning of January and he expressed his concern with her sleep apnea saying that it's one of the worst cases he has ever seen in a child her age (that's always good to hear as a parent, eh), and that vs the surgery we had planned at the end of the month that we needed to address her apnea before anything else, bottom line is, her breathing trumps everything else!! Dr. B said we had a couple of options. 1) Do a tracheostomy. This will completely resolve the sleep apnea, but unless we want to leave the trach in indefinitely... 2) Perform another jaw distraction. Maddie had this when she was about 5 weeks old. It's really hard to explain exactly what this is, but if you are interested, this website has a pretty good description and video http://www.pedsent.com/surgery/swfs/distraction/distraction.htm. After going over our options, we decided to go with the distraction, the thought of having to put a trach back in my child indefinitely just didn't sit well with me! Dr. B went ahead and got us scheduled for surgery for May 10, but in the meantime, he wanted to discuss this with Dr. H (who follows us for Maddie's sleep apnea), and also Dr. P (ENT). He wanted to make sure they thought this was the best option as well and would give us the highest chance of success for treating her sleep apnea. Dr. Hassan got back with him right away and said she was on board. It took about a week or so to hear back from Dr. P, and his opinion threw me for a loop. Of course, it took us almost 2 months to get in to see him and hear what he had to say. This appt took place this morning and is the reason for the complete emotional breakdown I have been having all day. He says that his concern is that b/c she already has breathing issues, he feels it's too risky to go into surgery/anesthesia with an already compromised airway and b/c of this he recommends putting a temporary trach in. I knew from my conversation with the NP back in January that this is what he was leaning towards, I guess I was just in denial. I had convinced myself that we could get through the distraction b/c it meant that she wouldn't have to have a trach again, and now she has to have BOTH.
Utterly distraught is how I feel about all of this. Making decisions is hard enough, but making them for your daughter, especially ones that are going to rock her world are just cruel! I see where Dr. P is coming from and agree, but it doesn't make it any easier. Trust me, the last thing I want to do is have her go into surgery, have airway problems, start to lose oxygen, and have it be downhill from there. I guess the good thing is that the tracheostomy and the distraction can be done at the same time. Dr. P will do the trach first, and then Dr. B will do the distraction. Looks like she will be spending a minimum of 10 days in the hospital, the first 5 in the ICU. I hope this gives us enough time to learn all we need to so we can properly care for our little girl. I am a ball of nerves, emotions, you name it. I have asked myself many times today, "Is this the right thing to do and is this the right time?" And yes, I know in my heart now is the time. I don't know how much longer we'll be in Michigan, but we are here now. We have established care with all the important specialists, and we are fortunate to be at a great hospital with such amazing doctors.
UGH...deep breaths...I've been trying to remind myself to do this all day! I'm not sure this 'note' will make sense to everyone, it is a lot of info, and I'm not promising that I have used all the proper medical terms or explanations, but I tried the best I could! I'm also sure I left a crap load of information out! I know we will all get through this, and if you haven't gotten a chance to really know my daughter...she is a FIGHTER!! So as with everything else we have been through as a family, we will come out on top and be stronger, better people in the end. Life definitely has it's ups and downs, and while we may not always like them, they are there, so all we can do is keep moving forward and know that everything will work out!
Ok, now I need to do a little backtracking...last October we had an appt at the dentist and found out that Maddie had a few cavaties that needed to be addressed. Sounds simple enough, however, in Maddie's case this turned into quite a fiasco. The problem is that Maddie's mouth barely opens, we can't even get a toothbrush in her mouth to brush the insides/tops of her teeth, hence the cavities. The dentist said that she couldn't even get the tools needed to fix the cavities in her mouth due to the small opening. We then met with the oral surgeon who did a scan and found that on the left side of her jaw there is a bone that has fused a part of the upper and lower jaw together, and thinks this may be the reason her mouth doesn't open very wide. He told us we could schedule surgery and he could go in and 'unfuse' the bone, therefore allowing her mouth to open more, and at the same time, the dentist could get in and work her magic as well. Okay, sounds like a plan, we scheduled surgery for January 28.
While all this was going on we were doing everything in our power, bribing with toys, tv, whatever it took to try to get Maddie to wear her CPAP mask but were having NO luck. When Maddie can take the mask off and turn the machine off, there's not much else we can do! We had a follow up appointment with her plastic surgeon at the beginning of January and he expressed his concern with her sleep apnea saying that it's one of the worst cases he has ever seen in a child her age (that's always good to hear as a parent, eh), and that vs the surgery we had planned at the end of the month that we needed to address her apnea before anything else, bottom line is, her breathing trumps everything else!! Dr. B said we had a couple of options. 1) Do a tracheostomy. This will completely resolve the sleep apnea, but unless we want to leave the trach in indefinitely... 2) Perform another jaw distraction. Maddie had this when she was about 5 weeks old. It's really hard to explain exactly what this is, but if you are interested, this website has a pretty good description and video http://www.pedsent.com/surgery/swfs/distraction/distraction.htm. After going over our options, we decided to go with the distraction, the thought of having to put a trach back in my child indefinitely just didn't sit well with me! Dr. B went ahead and got us scheduled for surgery for May 10, but in the meantime, he wanted to discuss this with Dr. H (who follows us for Maddie's sleep apnea), and also Dr. P (ENT). He wanted to make sure they thought this was the best option as well and would give us the highest chance of success for treating her sleep apnea. Dr. Hassan got back with him right away and said she was on board. It took about a week or so to hear back from Dr. P, and his opinion threw me for a loop. Of course, it took us almost 2 months to get in to see him and hear what he had to say. This appt took place this morning and is the reason for the complete emotional breakdown I have been having all day. He says that his concern is that b/c she already has breathing issues, he feels it's too risky to go into surgery/anesthesia with an already compromised airway and b/c of this he recommends putting a temporary trach in. I knew from my conversation with the NP back in January that this is what he was leaning towards, I guess I was just in denial. I had convinced myself that we could get through the distraction b/c it meant that she wouldn't have to have a trach again, and now she has to have BOTH.
Utterly distraught is how I feel about all of this. Making decisions is hard enough, but making them for your daughter, especially ones that are going to rock her world are just cruel! I see where Dr. P is coming from and agree, but it doesn't make it any easier. Trust me, the last thing I want to do is have her go into surgery, have airway problems, start to lose oxygen, and have it be downhill from there. I guess the good thing is that the tracheostomy and the distraction can be done at the same time. Dr. P will do the trach first, and then Dr. B will do the distraction. Looks like she will be spending a minimum of 10 days in the hospital, the first 5 in the ICU. I hope this gives us enough time to learn all we need to so we can properly care for our little girl. I am a ball of nerves, emotions, you name it. I have asked myself many times today, "Is this the right thing to do and is this the right time?" And yes, I know in my heart now is the time. I don't know how much longer we'll be in Michigan, but we are here now. We have established care with all the important specialists, and we are fortunate to be at a great hospital with such amazing doctors.
UGH...deep breaths...I've been trying to remind myself to do this all day! I'm not sure this 'note' will make sense to everyone, it is a lot of info, and I'm not promising that I have used all the proper medical terms or explanations, but I tried the best I could! I'm also sure I left a crap load of information out! I know we will all get through this, and if you haven't gotten a chance to really know my daughter...she is a FIGHTER!! So as with everything else we have been through as a family, we will come out on top and be stronger, better people in the end. Life definitely has it's ups and downs, and while we may not always like them, they are there, so all we can do is keep moving forward and know that everything will work out!
Gosh, that seems so long ago and was Maddie not the cutest little thing in that picture!? Hard to believe how much she has grown and how much has changed in a little over 2 years! And while we have had plenty of ups and downs along the way, once again, Maddie came out on top as a stronger, braver little girl that I ever imagined she could be. She truly is my little hero and I am the luckiest mommy in the world to call her my daughter!!
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| First family pic with a trached Maddie |
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| Our last family pic with a trached Maddie :) |
So, back to present day. On Friday, August 30th we reported to the hospital for what Maddie hopes is her last surgery (as do we). Poor thing is so aware each and every time she has an appointment or surgery. She is the type of kid who wants to know every little detail about what is going to happen and so we had been over the plan with her numerous times so she knew exactly what to expect. We got to the waiting room and hung out for a little bit before going back to the Pre op.
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| Hanging out with daddy before going to Pre op |
Surgery itself was quick, probably had a consult with Dr. Passamani within an hour after they took her back. First off, he did end up putting a tube in her right ear as there was a descent amount of fluid present. Secondly, he said the bronchoscope looked good and he saw no reason why she couldn't be decannulated. This my friends, was music to my ears!! So after hanging out in post op, we were finally taken up to the PICU where we would stay put for the next couple of days. The only bad part about this was that since we were dealing with airway issues, Maddie had to stay hooked up to the monitors and we couldn't really venture out of the room. Normally when we are in the PICU she is in pain and recovering from surgery, but this time she alert, awake and ready to be entertained. I gotta say, the Child Life Department at the hospital is phenomenal and they brought Maddie all sorts of activities to help keep her busy throughout our stay. Maddie spent time doing crafts, playing games, watching movies and enjoyed visits from Grammy, Miles and her friend Kira to help pass the time.
Everything went as planned and as the doctor had layed out for us. Night one in the PICU, Maddie remained trached and capped so they could monitor her oxygen, respiration and heart rate. The ENT made rounds in the morning, looked over her stats from the night and determined that she did GREAT and that we could decannulate!! The moment we had waited so long for was here and gone in a matter of minutes...quick, easy and painless!! Here's a link to the video of the doctor taking her trach out: http://www.youtube.com/watch?v=4Pz6svZJV10
We spent one more day and night in the PICU and had thought we would then be moved to the regular floor to be monitored for another 24 hours, but to our surprise, when the doctor made his rounds on Sunday morning he said she was doing so well that they felt comfortable discharging her. So, by the time I made it up to the hospital by 9:30am or so, Ian and Maddie were packed and ready to go home!! Also, gotta say we had some of the most amazing nurses this weekend in the PICU and we can speak from experience that not all nurses are created equal but we lucked out as they were all great this time around!!
And with that, another chapter has closed on Maddie's little journey! Who knows what the future holds but we are hopeful that this marks the end of hospital stays and surgeries for a long time. My amazing little girl has endured more than I ever have and she deserves a break!! We would like to send great big virtual hugs, kisses, high fives and thank yous to everyone who has followed our adventures these past few years. I am so thankful for such supportive friends and family who are always there for us! THANK YOU ALL!! XOXO
We spent one more day and night in the PICU and had thought we would then be moved to the regular floor to be monitored for another 24 hours, but to our surprise, when the doctor made his rounds on Sunday morning he said she was doing so well that they felt comfortable discharging her. So, by the time I made it up to the hospital by 9:30am or so, Ian and Maddie were packed and ready to go home!! Also, gotta say we had some of the most amazing nurses this weekend in the PICU and we can speak from experience that not all nurses are created equal but we lucked out as they were all great this time around!!
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| Trach Free outtakes!! |
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