You may or may not know this, but Maya loves to chew on things. It may be a habit as a parent you would be inclined to break, however for many reasons we have not kept Maya from this habit. What we do try to control is WHAT she chews on, however, that can be a challenge as well. Due to Maya NOT eating orally, we REALLY encourage her to put stuff in her mouth. If a child never eats and does not put things in their mouth they become "orally adversive"...meaning they won't put anything in their mouth, and will gag or vomit or cry if you even try to put something in their mouth. Maya does not like you putting stuff in her mouth, but does enjoy exploring orally on her own.
On to my story of last night. We were driving to my brother-in-law's house, home of the "Big Cousins", Katya and Sonya...a favorite destination point for us and our girls, plus they just got a new puppy! On the way there, Maya was chewing on the collar of her jacket (not something I love for her to chew on, but I was sitting in front and she is in the way back). About a block from Uncle Kurt's house, I notice Maya was choking...it took me a second to realize this was not just a coughing fit, like she has after eating sometimes, but she was scared, coughing, and crying, and her color was fading. Dean pulled over, I quickly pulled off the cap of her trach, which thankfully gave her an open airway to breathe through (with the cap on she breathes through her nose and mouth like we do). She was moving air, but still very uncomfortable, crying, and coughing a ton. I soon noticed that where she had been chewing on her jacket the top 2-3 teeth of the zipper and the tip top of the zipper (not the part you pull) was missing, and it was inside of Maya somewhere. We started to notice blood from her trach, so we quickly drove to Kurt's and called 911 (we were too far from the hospital for me to feel comfortable driving).
After an assessment from the Firemen who arrived, they called the ambulance. Dean got his 2nd drive in an ambulance...I still have yet to have that experience. Oddly enough, Maya clamed down just as the pulled into the ER at Mary Bridge Children's hospital here in Tacoma. With Maya's condition we skip the wait in the ER waiting room, and are very quickly seen. (a nice perk!) They did an X-ray to see if the zipper piece went into her lungs, which would definitely cause a terrible pnuemonia. The x-ray came back normal, and the doctor seemed to believe she swallowed it. The zipper piece would not show up on X-ray -it was plastic, but had it entered her lungs, she would have shown some definite changes in her lungs, as the body tried to fight it. So poor Maya cannot swallow thin liquids properly, but I guess she can swallow a zipper...silly girl...let's try some food next time...okay?!?!?
Maya was discharged after 2 hours (our fastest ER visit yet, and the only one we have been sent home from), and now we just monitor her to make she she did not aspirate her own saliva from all that coughing, into her lungs, which could cause pnuemonia too OR perhaps we will see a zipper piece in her diaper in the next day or two. So far she is just fine, went to school and is now on her rocking horse, bouncing and rocking away...I think she is going to be just fine.
As for Addy , she had a wonderful evening playing with her BIG Cousins and the new puppy...Thanks again Kurt for helping us out last night!
We invite you to share in our family's journey. Our oldest Daughter is a pure delight and also happens to have CHARGE Syndrome and has been through numerous medical procedures. She has two little sisters who adore her and bring endless amounts of energy and joy to our family. These are our stories.
2/25/08
Portland
Last weekend we had a fabulous long 5 day weekend in Portland with Grandma and Grandpa Royston. The weather was fabulous so we played at many parks, went to the zoo, and my dad even turned down the hot tub, so we could take a dip in the hot tub... enjoy the pictures. Click on My Montage to view the slide show of pictures.
My Montage 2/25/08
My Montage 2/25/08
2/8/08
The Ultrasound
So Maya and Addy will be welcoming another sister into the family. Three little girls...can you believe it?!?! Dean and I are thrilled to have 3 beautiful little girls. We can keep all the girl clothes, decorations, and toys...and hopefully Maya's clothing will continue to last through two more rounds of girls:-) Dean is definitely out numbered, but he adores his girls, and honestly was not sure what he would do with a boy. As long as our girls play "ball" , "chase", and make forts with him...he will be a pretty happy Daddy!
So far baby girl looks healthy and is measuring right on track for her June 17th C-section date. (due date is officially 6/24) She was quite a squimer and almost did not cooperate for us, as we were trying to discover her gender. She also was doing some lovely "head-butts" into my bladder, which may explain my need to go to the bathroom a TON! We will have a fetal echo-cardiogram done in about a month, which will hopefully rule out any heart defects. Here are some specific things they looked for on the ultrasound today, 4 heart chambers, a well developed right and left kidney, normal brain size, no cleft lip or palate...unfortunately, there are many things that Maya has that will not show up on an ultrasound, but is sure good to know that there is nothing wrong with what the doctors looked at today, and for that we are VERY thankful.
So far baby girl looks healthy and is measuring right on track for her June 17th C-section date. (due date is officially 6/24) She was quite a squimer and almost did not cooperate for us, as we were trying to discover her gender. She also was doing some lovely "head-butts" into my bladder, which may explain my need to go to the bathroom a TON! We will have a fetal echo-cardiogram done in about a month, which will hopefully rule out any heart defects. Here are some specific things they looked for on the ultrasound today, 4 heart chambers, a well developed right and left kidney, normal brain size, no cleft lip or palate...unfortunately, there are many things that Maya has that will not show up on an ultrasound, but is sure good to know that there is nothing wrong with what the doctors looked at today, and for that we are VERY thankful.
2/5/08
Please keep us in your thoughts and prayers
The Kelly Family is doing great! However, we want to keep you all informed of some huge events coming up in ourlives. This Friday, Feb. 8th we will have our ultrasound. My anxiety regarding this exam is soley focused around the health of this new baby. While I have no reason to expect any concerns to show up on the ultrasound, Dean and I will be overwhelmed enough by a typical healthy baby...the thoughts that come to the surface of my mind regarding the possiblity of a health issue cause moments of fear and worry. I must say for the most part we are peaceful and excited about baby #3...this being our last, we are savoring these special moments that only happen once (back pain, waking often at night from discomfort, over-tiredness...heehee, actually it is the flutters in the belly that are the most fun, and Addy patting my now emerging tummy and saying "baby", eventhough she has no clue there is really a baby in there.)
On another note, Maya has a HUGE day on March 19th. She will have a sleep study, where she will sleep all night with her trach plugged. We have done small trials at home for 30-45 minutes where she has done fabulously well, but 12 hours is a MUCH longer time. IF Maya passes the study and is able to tolerate the night with her trach plugged, the trach will come out...if NOT, who knows. My emotions ARE SO READY for her trach to come out, for her to graduate from needing nursing, and for our home to be occuppied with family (and of course visitors). However, there is the reality that she may have sleep apnea issues, or that her airway could collapse some. Also keep in mind that we are NOT allowed to let Maya sleep all night with her cap because it is dangerous. She is having to breathe with a tube blocking a portion or her airway, which means she has to push air around the tube to reach her nose and mouth. It will be MUCH easier for her to breath with the tube "out " of her airway. So this is a big deal. She needs to pass this study to get her trach out, and it is really hard to know if she will be successful.
Maya has NEVER been stronger or healthier. When her trach cap/plug is coughed off during the day, she tries to put it back on, as if she know she is supposed to breathe through her mouth and nose and NOT her trach. She is sick less frequently than Addy (who is also rarely sick). She has more energy to walk around and play than ever before. So I believe she is at her best...so we better give this a try. While I am not expecting her to pass with flying colors, I have never been more excited to have her trach out, and to figure out life without nursing. YES! It will have its challenges, and YES! we will have more work to do, BUT Maya WILL be a different kid without her trach, and we will have more freedom to go places with her, and she will have to learn some independence (as things have always been done for her)...AND honestly I believe it is time for some independence.
Please keep this Friday and March 19th in your thoughts and prayers. You are all such a source of strength for our family. I am SO grateful we do not have to journey our road of life without you all!
On another note, Maya has a HUGE day on March 19th. She will have a sleep study, where she will sleep all night with her trach plugged. We have done small trials at home for 30-45 minutes where she has done fabulously well, but 12 hours is a MUCH longer time. IF Maya passes the study and is able to tolerate the night with her trach plugged, the trach will come out...if NOT, who knows. My emotions ARE SO READY for her trach to come out, for her to graduate from needing nursing, and for our home to be occuppied with family (and of course visitors). However, there is the reality that she may have sleep apnea issues, or that her airway could collapse some. Also keep in mind that we are NOT allowed to let Maya sleep all night with her cap because it is dangerous. She is having to breathe with a tube blocking a portion or her airway, which means she has to push air around the tube to reach her nose and mouth. It will be MUCH easier for her to breath with the tube "out " of her airway. So this is a big deal. She needs to pass this study to get her trach out, and it is really hard to know if she will be successful.
Maya has NEVER been stronger or healthier. When her trach cap/plug is coughed off during the day, she tries to put it back on, as if she know she is supposed to breathe through her mouth and nose and NOT her trach. She is sick less frequently than Addy (who is also rarely sick). She has more energy to walk around and play than ever before. So I believe she is at her best...so we better give this a try. While I am not expecting her to pass with flying colors, I have never been more excited to have her trach out, and to figure out life without nursing. YES! It will have its challenges, and YES! we will have more work to do, BUT Maya WILL be a different kid without her trach, and we will have more freedom to go places with her, and she will have to learn some independence (as things have always been done for her)...AND honestly I believe it is time for some independence.
Please keep this Friday and March 19th in your thoughts and prayers. You are all such a source of strength for our family. I am SO grateful we do not have to journey our road of life without you all!
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