A good Day

So today was better than yesterday and my mood has lifted a bit. Perhaps it was just the sunshine or having Dean here all day, or the news I got this morning that Maya is indeed releasing enough CO2 (from her blood work yesterday...something her Drs have been concerned about), but overall Maya was better today as well. We spent a lot of time outside, and for whatever reason Maya's secretions were so much better outdoors. Sure, there were moments of leaving her alone for 10-15 minutes in the living room eating her food, while I got something done, and returned to a girl soaked with saliva...but it was less that yesterday. We never even used the suction machine today...probably could have, but she got what she needed out of her mouth, and there were rarely secretions just gurgling in the back of her throat. Maya was in such a better mood today as well (perhaps it was because she got such a good night of sleep)...she walked all over the backyard checking out trees and ivy and an occasional swing on the glider and slide down our slide.We took the girls to the dog park with Maya in the stroller, and I think she laughed at every dog she saw...what a delight! As I type this the little girls are dancing about the living room and Maya is making the happiest little noises watching them :-) My Mommy heart is happy today with the knowledge that most certainly tomorrow will be different, and trying my best to be okay with that.

Lots of secretions and CPAP

Secretions and CPAP just about sum up Maya's state of being currently, and boy I did not expect this anatomical change in Maya to be so challenging for me. Maya is doing well and her energy is about normal, but the poor girl has to put up with me suctioning her mouth and suctioning her nose and forcing CPAP on her over and over and over again...it is a shock that she forgives me and still yearns for mommy snuggles and attention....the truth is she handles it all from me way better than nurses or doctors, and for the most part she is breathing comfortably and is relatively happy. I am just overwhelmed at all her care...it reminds me of early baby hood life with Maya...needing her at least in ear shot so I can hear if I need to attend to any choking on unmanageable secretions and not being able to take her anywhere public. I must remember that this is a season and it hopefully won't be this way forever. Maya has heart surgery scheduled for March 22nd and until then Maya is in isolation...happpy to have healthy visitors, but otherwise we are getting VERY comfortable at home all day long. My mom will be out to help every other week until surgery so that the little girls and I can escape from the home, drive to preschool, go to the Y, go to the park, or go grocery shopping...or who knows maybe give Dean and I a chance to talk. We wake up and he is off to work, he comes home and it is family time, then bed/ CPAP time and somewhere about midnight I hand off Maya to him and go to bed while he listens for her (I cannot get any sleep listening to Maya, so I am so grateful that Dean can). I am pretty weary and discouraged, and am grateful for my optimistic hubby (he is taking this all in stride and is very proud of Maya and thinks she is doing great without her fistula (hole))...we will just have to wait and see what the future holds, and it is impossible to make any predictions at this point. We are grateful that her stoma is closed and heart surgery is just around the corner. As for now, Maya does not have a hole or trach in her neck, she has VERY thick hard to manage secretions, but her saturations are great day and night, and CPAP is a huge struggle to keep on her...Maya has learned that she only gets to watch Signing Time if she wears her CPAP. We had a great moment 2 nights ago where we got CPAP on her after she was sound asleep...she wore it for about 1 hour...sigh. That has been our greatest success thus far. We certainly hope for improvement.
Thanks for all your prayers, keep 'em coming!
Marty

Still at children's

Maya continues to keep things challenging. Yesterday she had some gurgly breathing that bothered her main Dr, a fever, and some vomitting. We still are unsure as to what the cause of it all is. The Drs still think it could be pain from the procedure and honestly tylenol is helping , and the Drs...think that she may not be having a strong cough for a couple of possible reasons...it hurts (and Tylenol does seem to help)or she is not inhaling enough air for a productive cough. She has had a few good productive coughs today, but they would need to get stronger for her to have the hole closure long term. she is not up to walking a bunch and we cannot determine if that is because she does not feel well or if it is because she is not getting good oxygen/CO2 exchange...her SATs have been great and so have her other vitals...just hard to say at this point...no one is overlu optimistic at this point. Only time will tell. Her Dr.s are pushing for heart surgery as soon as possible, but the scheduling for surgery is out 4-5weeks still...and in order for her to make it with her hole closed until then, she needs to NOT get sick...so she will most liekly be isolated until a few weeks post heart surgery...of course healthy visitors would be welcomed to our home:-) Not sure if we will leave tonight or tomorrow morning or later at this point, my best guess is if she does not get worse, she will go home in the morning...as there is not a whole lot the hospital can do for her at this point, and we will have much better luck with CPAP at home.

Maya's surgery

So far Maya has tolerated her stoma closure and botox injections well. Grandma Fran came with me since Dean is not feeling great and should not be at Childrens with a temperature of cold like symptoms. He and Grandpa who also has a cold are managing the littles, and Grandma and I are actually a bit bored already...which is a good thing! We now just have to see how sleeping tonight goes...will she keep her saturations up and will her sleep apnea not be worsened with the closure??? We have to wait 48 hours before we try to put CPAP on her so she needs to make it 2 nights first. She has had some low heart rates, but nothing anyone is overly concerned about given her current heart condition. She IS getting a bit bored and tomorrow may be a long day for whoever is with her, she is already sitting up, kicking like carzy, and tired of the 3 signing time dvds I brought...will need to get more tomorrow...can't decide if we want to try some CPAP in the hospital before heading home or not...I for one am anxious to be back home, and really I think Maya will be as well. Tomorrow I will meet with the home health respiratory nurse to get a little more CPAP training and ideas to help Maya tolerate it, as that is our next big endeavor with Miss Maya...OH PLEASE OH PLEASE tolerate your CPAP MAYA!!!! May see the cardiologist tomorrow as well and potentially and talk about setting a date for surgery. Please pray for a successful night of breathing for Miss Maya!!!

Surgery tomorrow

I do think Maya will in fact have surgery tomorrow (trach stoma closure adn botox to her salavary glands to prevent excessive secretions) at Seattle Children's, but I am always shocked how procedures and the "getting ready process" for our family never seems to go too smoothly. About 2 and 1/2 weeks ago Maya caught a rspiratory virus...she was fine for a few days and then all of the sudden she was at the ER with a 102.2 temp and we were concerned about pnuemonia. She was sent home and then we kept her out of school for about a week trying to get her better, and give her nebulizer antibiotic treatment to keep her from getting really sick and to kill all the bacteria prior to surgery. So she is well, but germs seem to be all around us this time of year. In order to prepare for surgery these days it is not all about Maya anymore, there are preparations made for the younger two sisters. While Teya is super easy going and finds transitioning to the grandparents and back to parents as caregivers and even a play date thrown in here or there, to be a piece of cake...it is not the same for Miss Addision. Addy's 3 year old emotions are quite sensitive and it is hard for ANY change to occur in her life that may change the routine and structure of her day. She has started a night time routine of her own that we are not excited about...it is called wake Mommy and Daddy up 4-5 times a night and see if they will come lay down with me. And with two nights to go before the granparents take care of her we could not wait any longer to nip this habit in the bud. We decided to try the work of the ever popular "Super Nanny"...no more long time cuddles at the side of her bed or comments about how much we love her and oh if I could actually sleep on the floor of your room I would, but I can't...and really I am not sleeping at all when you wake me up 4 times a night, etc... So at 1:30AM when Addy awoke me for the 2nd time, I said very calmly put her in her bed and stated "good night Addy, it is time to go to be", then I retreated to the couch where I waited for her return. Sure enough merely seconds later she came pitter pattering across the kitchen for me, and there was no more talk, just taking her by the hand and escorting her to her bed OVER AND OVER AND OVER, then Dean took charge until Teya woke up (Let's just say for over an hour Addy was screaming and wailing,,,it was amazing Teya slept through that much of it), and then I took over while Dean settled Teya down in the pack n play in our room. Then it was my turn again...I love how Addy slowly turned silent and just pattered down the stairs where I intercepted her and then without one look in her eye or one word, I took her hand and led her back upstairs to bed. Inside I just kept thinking how proud Super Nanny would be of me and all sorts of weird thoughts that go through your head at 3:00 in the morning. I made it to 3:30, and switched with Dean who at this time was feeling crumby and was worried he was getting sick...ughhh, and he did one more escort with Addy to her bed and at 3:50 the house fell silent and we all got 2 hours of sleep...then of course Dean was up for work and starting Maya's food and of course Addy was up at the crack of dawn too. AHHHH! the joys of parenting. Well, we have one more night of training Addy to bed before poor Grandma and Grandpa take over (My mom has reassured me that training will continue in our absence). And the funniest part of it all is that I am so excited to "get away" with Dean and get a whole night sleep while Maya is carefully cared for in the Seattle Children's ICU tomorrow night....perhaps that is wishful sleeping, as I am most concerned about her night time sleep without her stoma (trach hole) open...but over 12 hours hanging out with Dean, may be a nice change of pace....I guess we have to look on the bright side of everything right? And if this procedure goes well, Maya may tolerate CPAP and avoid having her trach replaced. Maya checks in tomorrow at 12:00 and is scheduled for a 2:00 procedure. We appreciate all your prayers for Maya to tolerate sleep in particular with her hole closed, and that maybe we could be home as soon as Thursday or Friday.