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Newly Diagnosed (Read 9095 times)
Moya_Mom
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Newly Diagnosed
Sep 11th, 2010 at 9:43am
 
Need prayers from you all. Just found out that our 12 yo son has Moyamoya. He goes to Boston in Nov. for angio and surgery. Our 3yo is having open heart surg on 10-11. So overwhelmed with all I will need to do for both of my boys. Any to do lists for MM would be so appreciated. I don't know where to begin.
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mg12061
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Re: Newly Diagnosed
Reply #1 - Sep 11th, 2010 at 12:19pm
 
My gosh you should feel overwhelmed! That's a lot on your plate. Welcome to this wonderful group. Everyone is so helpfull!!  I would be happy to answer any specific questions you have (either online or e-mail), My daughter was diagnosed 8 yrs ago and had her surgery in Boston with Dr. Scott. He was wonderful as was the entire staff. She unfortunatly suffered sever strokes but luckily has not had any since ehr surgery. I'm sure you've been told to keep your son hydrated. Is he taking asprin? We tried to bring plenty of fun things to keep busy like movies, books and music. I stayed in the hospital room with my daughter the entire time. Please ask away if you can think of any questions.
Mary G.
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Moya_Mom
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Re: Newly Diagnosed
Reply #2 - Sep 11th, 2010 at 5:21pm
 
Thank you, thank you. They just placed him on a Baby ASA daily and I did not know to keep him hydrated. Will do. He has had no neuro deficits yet. His biggest complaint has been headaches and eye pain. I was not sure about staying with him the entire time as so many ICU's have strict visiting rules. I am an ICU/cardiac RN and I am filled with all the what if's and possibilities. I have to tell you that I am scared to death for my boys. I will not leave them if I can help it. I was not sure if Nathan can fly in an airplane pre and/or post surgery as we live in Pa and will have to fly or drive over 10 hours. I read that the recovery is 3-4 days post surgery. Will he have a drain or dressings after? Are there routinely neuro problems after surgery with the swelling I have been reading about? Where is the swelling after surgery located? Is their much pain after? Do they stay away from pain meds after to better assess neuro issues? Will he be able to read or watch TV after the surgery? Will he be on blood thinners? Are there cots for sleeping in ICU? When my 3yo had his first open heart surgery I had to sleep sitting in a chair or on the floor. Do they have wireless access in Boston Childrens? What kind of activity restrictions will he have after and for how long? He has 4 brothers and one sister and they are all very active. Will he be able to play with them? What should I pack for him other than entertainment items? Will he need clothes in the hospital or toiletries? What kind of follow up is necessary and how soon after will he need to come back to Boston? Please help me? Please....
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Lmom
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Re: Newly Diagnosed
Reply #3 - Sep 11th, 2010 at 9:26pm
 
Moya_mom,
Wow - you do have a lot to deal with right now.  My daughter had surgery in Texas and we live in Kansas.  It was flu season, so even though they said it was okay to fly we drove (plus the $ to fly).  Anyway, we broke the drive into two days on the way down as we didn't want to wear her out.  Also, after surgery our surgeon had us stay in town 3 - 4 days AFTER released from hospital before we drove back.  (we had friends we could stay with) She did fine on the drive.  The second surgery was the next month and we flew home that time (dad drove us down and didn't stay the whole time).  I think I preferred driving actually!  I stayed in her room the whole time both times - they let us skip ICU and go to a regular room.  She did have a stroke prior to diagnosis, but no strokes after surgery.  Lina had a lot of swelling, but not much pain amazingly enough.  The first couple of days were the worst, after that she was ready to play.  We walked a lot around the hospital - even outside a couple of times.   Best wishes for both of your kids. 
Jody
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hrsridermom
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Re: Newly Diagnosed
Reply #4 - Sep 11th, 2010 at 10:15pm
 
The swelling is aroung the eye area.  My daughters completely shut...looked like she'd been beaten up.  I was told about the swelling or how quickly it happenned.  She went from normal looking to swollen in just a few hours.  At least you won't be so startled if you are expecting it.  I also stayed the entire time, even in PICU.  Each hospital could have different rules.  I had a room at the Ronald Mcdonald house but never used it.
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mg12061
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Re: Newly Diagnosed
Reply #5 - Sep 12th, 2010 at 11:45am
 
I'm glad your getting some helpful information. I can tell you about our experience but of course not all kids have the same experience. Kathleen had swelling after the surgery but it went down rather quickly. She had a dressing over the incision,the stitches were disolveable so we didn't need to get them removed. They shaved only a strip of hair and it grew back quickly. We did have a problem removing the glue from the EEG. BCH was great about pain managment and keeping ahead of the pain. It was only a coupld days before she was on just tylenol. There shouldn't be any neurological deficits after surgery unless they ahve TIA's or strokes.Kathleen had a severe stroke after the first surgery but this was due to the fact that she was very unstable at the time of her surgery. She was experiencing strokes that were getting closer together and more severe. She had one the day before surgery. Most kids are up and going very quickly and home in less than a week. BCH had chairs that folded out similar to a bed in the rooms. They also ahve parent sleeping rooms that you can put in for ahead of time (there can be a waiting list). you can probably get a lot of information on their website too. I stayed with Kathleen until she was put under. There was never a minute that I wasn't allowd to be right by her side. I'm not sure about the wireless internet. They had computers for patient use. AS for entertainment... I brought movies (plus they had a lot of them there to use) music, books, whatever your son enjoys. maybe magazines, puzzle books,  Ipod, handheld games, etc.  I don't believe there are activity restriction assuming there are no complications. We were told to not let her hyperventilate.  Many patients fly both before and after surgery. They have tioletries but he may want some of his own that he's used to using (and for yourself). Kathleen didn't really need clothes just something to wear home.She was fine wearing the hospital gown(she was only 5 at the time)Your son may want his own PJ's to wear. I brought clothes for myself and my hysband. You can do laundry there if need be. We were there for almost 2 weeks so my husband did laundry once. Kathleen is still on asprin for the rest of her life we've been told. I'm not sure what the follow up is now we went back for 2 follow up visits and now only follow up with our local neurologist unless there's a problem. Kathleen has not had any more strokes or TIA's since the surgery. What we deal with mostly are the affects of ehr strokes. I hope I answered your questions. Let me know if you have any more. I can safely say that your son will be in the best of hands at BCH. The staff there are the best and very much on top of everything there is to know about moyamoya. Please keep us posted and ask away any questions you have.
Mary G.
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katieSD
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Re: Newly Diagnosed
Reply #6 - Sep 14th, 2010 at 9:32pm
 
Hi Moya- Mom!  I want to wish you and your son the best of luck. He will be in good hands Smiley  I just had the sugery one month ago.  I traveled a 5 hour drive to have mine done.  The drive home is ROUGH to say the least.  I would advise to take your 10 hour drive in multiple days probably three.  The five hour drive was almost more than I could handle and I had a 7 day hospital stay. Also have some oversized dark sunglasses for him for the ride home (the sunlight gave me a headache).  Your son will be tough, you will be suprised at how tough he will be.  You will be amazed at how much he will be able to handle.  For me the first couple weeks too much going on at once (like the TV & people talking at the same time) was more than my brain could comprehend and it frustrated me and gave me a headache.  I don't know if this is true for everyone, just somthing to think about when preparing.  The most important thing is just going to be being there for him, encouring him when he sturggles and praising him for every victory he has.  I don't think anyone can be 100% prepared but you will do the best you can and you will do a wonderful job Smiley  I'll be praying everything goes well!
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hrsridermom
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Re: Newly Diagnosed
Reply #7 - Sep 14th, 2010 at 9:54pm
 
Just want to add that the sunglasses can't put any pressure on the incision.  May some of those big ones that people wear after they get their eyes dilated.  They might not fit tightly on the face.
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katieSD
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Re: Newly Diagnosed
Reply #8 - Sep 14th, 2010 at 10:08pm
 
I mean ride.. not drive.  just want to make it clear I didn't drive Smiley One thing about choosing to drive verses flyinging.  If for some reason you were to have to stay longer. (I was suppose to only stay 4 days and ended up staying 7 it's a lot easier on the travel plans... hopefully though you will be out of there in no time)  I know the most frustrating thing for me is you can't really plan much when it comes to sugery.  There is so much that is left open ended. Oh and from a paicent/ daughters point of view, there may be times when he may want to be alone... or for you to just sit quietly in the corner not saying a word and that's ok.  With me my headache was so bad at times that my mom's clicking of the keyboard on the computer was more than I could handle... but how do you tell your loving mother you don't want her in your hosptial room? You don't, you just cover your head with the blankent and groan a lot.  I'm just letting you know your probably going to have to read into his emotions a little bit.. if he's cranky suggest goign the the waiting room to get some coffe or ask him if he wants somthing from the cafeteria or vending machine (if allowed) and when you come back in 10 to 20 minutes he may be sleeping. For me it was hard to feel like I could sleep when my family was in the room.  And rest is super importat in the recovery. There are also gonna be times he's going to need you there at the drop of a hat at his bekon call.  There was one night I had my art line clot up and they were taking it out  on one arm and putting in an IV on the other arm at the same time and I was just crying from all the pain wishing my mom was there... the next time I had an IV go bad... I didn't care that it was 2am I called my mom and said come to my room now, didn't even give her a reason. So I guess what I'm tryig to say is if he kicks you out of the room at any point, or acts like he dosn't want you there it's not becuase he dosn't love you and it's not becuase he dosn't need you.  I wouldn't want you to take anything like that personaly it's going to be hard on him and he may need some time alone to deal with his emotions, just talking from experince. But he's an almost teenage boy so I don't know maybe he will be differnt Smiley  You will figure it all out as you go!
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joshandmom9770
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Re: Newly Diagnosed
Reply #9 - Oct 5th, 2010 at 10:22pm
 
Hi good luck to your son with his surgery !! My son who was 12 when we had surgery , like yours also just had headaches and pain around his eye before we got diagonised , he was in ccu for 2 days then moved to regular neuro ward , the swelling around his eye scared the beejeebers out of me , they may have told me about it but it slipped my mind !! Just dont let it freak you out , it is normal , Josh had his surgery done at sick kids hospital in Toronto , Ontario , they admitted him the night b4 surgery to hydrate him , once he went to neuro ward the lights bothered him and noise , , he did experience a fair amount of pain but they kept him comfortable , he really wasnt up to much convo and or visitors , definetly no tv , suprisingly he was more alert right after surgery in ccu , and asked for a tv to watch the news , lol , i think once the good pain meds wore off , he had less energy , he also had some nausea when they started getting him mobile , but from what i have read each kid is different , he was a little unsteady on his feet  with stairs and stuff and did require some physio,if i can answer any other questions or if your son wants to ask my son some ?? please let me know , Joshs 1 year anniversary surgery is on nov 24 , and it is great to have my son not suffering the headaches and stuff any more, and back to his usual self !!
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joshandmom9770
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Re: Newly Diagnosed
Reply #10 - Oct 5th, 2010 at 10:28pm
 
and in response to what Katie said , since i did not read it before her advice is 100% correct , Josh was moody , cranky , and irratible , as well as dealing with the surgery , he is prolly dealing with puberty and all the other fun stuff , that pre teens have to deal with , my son sometimes just wanted me to lie beside him , so you may be on a roller coaster ride while hes in  the hospital , but i think the less people around after surgery but be most helpful to your sons healing process !!
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Moya_Mom
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Re: Newly Diagnosed
Reply #11 - Oct 7th, 2010 at 4:20am
 
Thank you all for the wonderful information.  We have been on such a roller coaster ride with the two boys needing so much at the same time.  Nathan will have his angiogram today.  I am sure he is so ready to get some information that will tell us the next step from here.  Our insurance has denied our wish to go to Boston with Dr Scott to handle the care of our son.  We have been sent to a Dr Stephanie Greene at the local Children's Hospital here.  She seem to be very confident in her ability to care for Nathan.  We will see what the angio shows and maybe get Dr Scott to give us a second opinion on those results.  Our 3 year old will have his heart surgery on the 18th now as their was a scheduling conflict.  I am sick with worry for my boys.  I don't think I will ever take the health of a child for granted again.  Nor will I ever not take the time to pray with my heart for a sick child and their families as I have done for all of you who have taken the time to help my family along the journey.  I will post more as we know more. 
Colleen
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joshandmom9770
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Re: Newly Diagnosed
Reply #12 - Oct 7th, 2010 at 9:46am
 
Will be thinking of you today !! also prayers have been said !!!
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Moya_Mom
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Re: Newly Diagnosed
Reply #13 - Oct 11th, 2010 at 6:52am
 
Nathan did really well with his angio.  They have put him on the schedule for the pial synangiosis surgery for tomorrow.  We are a little rattled here trying to get everything ready to go.  He has 4 brothers and one sister.  We are staying positive that he will get through this surgery without complications and come back home safe and healthy.  I have read all your advice and suggestions.  Thank you for they have helped me to prepare myself and him for the next couple of weeks.  I will post again after the surgery.  Glad to hear your doing so well after a year.  That puts a big smile on our faces here. Smiley
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Moya_Mom
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Re: Newly Diagnosed
Reply #14 - Oct 12th, 2010 at 7:30pm
 
Nathan had his surgery today on the left.  Thank you all so much for all the great advice on what to expect post op.  It is really helping me to understand how best to help Nate recover.  He is in some pain but they are managing it well.  He is stable for right now and sleeping.
Thanks again. Wink
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Re: Newly Diagnosed
Reply #15 - Oct 13th, 2010 at 6:13am
 
So glad to hear surgery went well. Thoughts and prayers for you and your family.
Pam
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Erinmom2
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Re: Newly Diagnosed
Reply #16 - Oct 13th, 2010 at 9:35am
 
Oh my you are a busy lady!! I totally know what you are going through. My 6 month old had open heart surgery the week before my son had his stroke. We got out of the hospital with Eli when 2 days later we were back in with Malachi and hi stroke. It was hard, very hard. But I knew I had to stay strong for my kids. You will make it through this, it is just a vapor when it come to looking at the big picture. My 2 year old has his Moyamoya surgery in Boston this past june. He is doing great!!! Hope you can find time to snuggle your kids and find a way to ease your mind. Let me know if you have any questions! Hugs from IL
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Re: Newly Diagnosed
Reply #17 - Oct 17th, 2010 at 1:43pm
 
So glad the sugery went well!!!  I'm sure he will be strong in his recovery Smiley  I hope and pray all goes well with you and both your boys!  I can't imagine how hard it is watching them in pain.  You are doing an amazing job at taking care of them I'm sure.
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mg12061
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Re: Newly Diagnosed
Reply #18 - Oct 18th, 2010 at 9:27am
 
Thanks for the update. I'm so glad surgery went well. Many mnay prayers for both your boys.
Mary Grace
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