Wow! Maya is just doing amazingly well! The transition to "no-trach" has actually gone about as well as it possibly could. It has been ONE WEEK, and we have not had any major road blocks. She is actually doing better at night than she did with her trach...she is not needing ANY oxygen, AND since the night nurses do not need to mess with her so much (she had a lot of tubes and wires to keep her from tangling up in), she is sleeping through the night well. So, what are some new things about Maya??? She definitely snores at night, though I must say it is a pretty darn cute snore! She has a hole in her neck, that the doctors hope will heal up on its own in about 3 months, or she will require stitches. I thought maybe with the trach out she would get less of those "glaring stares" from people, but no, now she has a hole in her neck that really gets even more of a glaring stare! We have tried to use bandages, but they just fall off...so Grandma Fran sewed up some clothes to fit her trach site that are held on with paper tape that we use at school or church. But really it is best to keep it open so that it can heal. Oh well, despite the small hole in her neck, most people still say she is really cute...which is definitely TRUE! Maya also likes to make funny sounds with the hole...oh Maya, you silly girl! Otherwise, we still have nursing care this month, Maya is attendding school now full time and the staff is learning to care for her feeding and medical needs for next fall when they will not have a nurse with Maya. Best of all, Maya is loving the great weather and has a ton of energy!
Our lives are changing too! We no longer travel with nearly as much stuff as we used to. We do not have to lug around her enormous suction machine, extra trachs, and trach dressings, saline, humidified noses, passimier valves, caps, and suction catheters, AND we do not have to do trach tie changes every single morning. Dean smiled so big on Sunday as we loaded the mini van for church with one very small diaper bag for Maya. We are also planning on going RV/ camping this weekend and it is so wonderful to think of packing for Maya! We used to have to bring a ton of nighttime equipment when we went overnight places...before we bought our mini-van, we had to take our car and truck when we went to Portland. Now all Maya needs are a few Oxygen tanks (if she needs them), a few nasal canulas, her feeding pump and food, and her monitor...now that should be much easier. My packing list for Maya used to be 2 full columns long (12 pt font) on the computer. WOW...what a change!
Now we are preparing for life without nursing care and baby Teya (I think this is the spelling we will now go with) Nicole. We have already decided that her name means "peaceful sleeper", even though we have not found that definition in any book. There is very little to get ready, just cleaning the house and making sure that the baby clothes are ready to go...it is nice to have a lot already in the house. So you can begin to pray that our family will get some sleep this summer...I think it may feel like 2 babies at night for awhile once we lose our night nurses in July, until Teya sleeps better and we get used to Maya's machines at night time (she still feeds at night and has a monitor that will make noise at times when she rolls around or wakes up, and of course if she is having breathing or heart trouble.)
Thank you all so much for all your prayers and support for Maya. This really is a HUGE step for her! More independence from equipment and nurses ALWAYS being around her, and also just a higher quality of living. We are so grateful that Maya has done so well this week!
5/19/08
5/13/08
Maya's trach is still out after a night's sleep!
GO MAYA GO! We are so proud of our little girl. It is like she has transformed into a new person over night. Her neck is clear (other than an occasional bandage to cover her hole in her neck), and her energy is through the roof! Unfortunately, she did not sleep very long last night (from 8PM-2:30AM), so neither did Dad! However, while she was asleep she did NOT need ANY oxygen, snored pretty good, but never seemed to show any signs of distress. My brother reassured me that his kids snore too! That made me feel a bit better. We really do NOT know what a typical night's sleep will look like yet, but we are fortunate enough to have nursing care for 16 hours a day for a month and then 8 hours (for the night shift) for another month before we lose our care all together. This will give us a real good idea of Maya's progress/ challenges with her trach out before we are on our own.
The biggest concern is that Maya will start to struggle for air as the hole in her neck heals. We can tell that at times she does push air through her neck because it make funny sounds, which I kind of think she likes...the little stinker:-) However, most of the time she is breathing through her nose and mouth VERY comfortably, and like I said before her energy has been amazing...MORE than normal. I am not sure if she is just excited to have her trach out, if her breathing is easier, or what...but she is a happy camper and that is what is MOST important!
We will let you know how our adjustment goes, and how Maya sleeps over the next few days and transitions back to school. Dean just said to me, "I keep wanting to put Maya's cap back on her trach because I can hear her moving air in and out of her airway." We are VERY excited and hope that Maya stays healthy and continues to do great with her trach out!
If you click on the picture below, you can view Maya's hospital experience in pictures.
My Montage 5/13/08
The biggest concern is that Maya will start to struggle for air as the hole in her neck heals. We can tell that at times she does push air through her neck because it make funny sounds, which I kind of think she likes...the little stinker:-) However, most of the time she is breathing through her nose and mouth VERY comfortably, and like I said before her energy has been amazing...MORE than normal. I am not sure if she is just excited to have her trach out, if her breathing is easier, or what...but she is a happy camper and that is what is MOST important!
We will let you know how our adjustment goes, and how Maya sleeps over the next few days and transitions back to school. Dean just said to me, "I keep wanting to put Maya's cap back on her trach because I can hear her moving air in and out of her airway." We are VERY excited and hope that Maya stays healthy and continues to do great with her trach out!
If you click on the picture below, you can view Maya's hospital experience in pictures.
My Montage 5/13/08
5/12/08
Maya's trach is OUT!
Although today went very slow, we are VERY happy with Maya's progress. We arrived for our 9:15AM appointment with the ENT Clinic. Before we had her trach removed we wanted her to have another round of BoTox to help with her secretions. That took 2 and 1/2 hours to get prepared for (I think mostly because this is only one of the first few times they have done the BoTox in the clinic versus in the Operating room.) Dean and I helped hold Maya while the Doctor injected her 4 times (under the chin), and Maya was certainly NOT very happy. Immediately following the BoTox injections, the Doctor simply pulled out her trach tube...and it was no big deal at all! She continues to be doing well, maybe starting to get a bit tired, from everything, but we could not be happier. Her energy level has been terrific, and she even did alright with our attempts at giving her her inhaled medication through her nose and mouth instead of through her trach. While there have been some serious tears today, there has been many more wonderful happy kicking moments, where it is obvious that she is okay with all that has happened to her today! I think she is also really enjoying having Mommy and Daddy ALL TO HERSELF today. So TONIGHT will be the big test for Maya. We are hopeful that she will do just fine sleeping without her trach for the first time since she was 2 months old...GO MAYA GO!
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