Sooo, we left off that Amirah maybe have asthma and she had a rough night but was doing better with the breathing treatments. Well the day after I posted that, in the early morning hours, Amirah told the doctors and nurses that she didn't have asthma....she had a plug in a her trach!
You may be asking how she told them? Well she de-cannulated herself! (De-cannulated means she removed her trach) When the trach came out they put a new one in, and when the looked at her old trach the realized there was a pretty good size dried mucus plug in it. After they put in the new trach she breathed MUCH better.
Since that day she has being doing much better. The still gave her a 5 day treatment of steroids, and are still giving her some Pulmacort and Abuteral. When she first started having her "episode" they were giving her these breathing treatments every 2-3 hours. The doctors didn't want to just stop treating the asthma, so they just started slowly weaning her off the medications. now she gets them 2 times a day and they do seem to help keep her airways nice and open.
One other kind of scary thing happened last Monday. I was there for her bath time and the nurse was my helper as I did all her cares. At the end of the bath we had to clean her neck and change her trach ties. You really need two people to do this part because one person has to clean and put in the new trach tie, while the other person holds onto the trach and make sure it doesn't come out with its not tied on. So, I was cleaning her right side and had hooked the new trach tie into the trach (which isn't exactly easy, imagine trying to thread a big needle, a plastic needle and much bigger, while Amirah is squirming and pulling underneath her chubby non exhisistent neck) and then the nurse, trying to be nice and having me do all the "hard" stuff, started moving her so I could do her other side. As she moved her her trach came out... the nurse tried to slip it back in as she realized it was coming out, but it didn't work. So, we calmly laid Amirah down, the nurse at the same time grab the new trach from below her and pressed the emergency call button. I was standing there calming soothing Amirah and holding her still and her head back so the nurse could get the new trach in. Within a 30 seconds of the alarming being activated 15-20 staff came running into the room. I quietly stepped back to let a doctor in, but the truth is we had already solved the problem. We had accidentally de-cannulated Amirah but had gotten her new trach in all in less than a minute. Me and her nurse had actually stayed so calm during the whole thing that when the other nurse heard the emergency call go off she walked out of the room to help respond to it and saw all the people running toward the room she just left. While it was a little scary while it happened I am glad that it happened. It was a great learning experience for me and while I am pretty sure if it were to happen again at home I might be more scared I am pretty sure I could handle it. The other thing it taught me was when we are cleaning and changing her trach ties we won't move her around but each do a side.
I had made the decision when we found out she wasn't going to Blythdale on July 8th to start being more involved with her daily cares while I was visiting her. So pretty much since that day while I am visiting her I do everything for her. The physical therapist starting call me Dr. Mommy because she was blown away with everything I can do for her.
Last Sunday while we were visiting with Amirah we were told that by her nurse that day that she was extremely impressed with all that we could do with Amirah. She told us that she had never seen parents be as involved with their child's care as much as Andy and I are, especially for a "special needs" situation. It felt shocking really. I mean what choice do we have....she said we had other choices, she's seen parents not be involved at all (hardly visit) or only observe (stand and watch the nurses do all the work). As we talked about it more I could understand it a little more. These other parents felt what we are feeling... angry, sad, "why me" kind of feelings. I guess the big difference is our own attitude. Andy and I could choose to sit and wallow in are hard times and go on with our day to day lives. Or we could do what we are choosing to do and that is to accept our situation (a situation we have no control over) and truly make the best of it.
It makes both Andy and I feel good to know that we know how to take care of Amirah. It makes us feel more like "regular" parents. We know it makes Amirah feel good to have us do this with her. She always does better with us and calms down more quickly when we are there. And she almost always gets into Andy's arms and snuggles into is chest and passes out! You can almost her a giant sigh coming from her as she relaxes in his arms.
I think that's all for now. Sorry this blog has turned into so much about how me and Andy are doing and less about Amirah.
(Andy writing) Hello Amirah Nation! I hope you are all doing well. I just wanted to quickly comment on some of the things Jo has said. As you can imagine by now, the NICU is an extremely difficult place to be in. All the babies that are there have a major issue in one form or another. It's sometimes very difficult for Jo and Myself to see a baby in the room, only to be go home within a week or two. It's extremely difficult seeing that when we see the child on the same equipment that Amirah has been on or is on. With that said, we knew from the start that we have been very, very blessed that we are able to be so close to Amirah.
Westchester Medical Center, and particularly the Children's hospital, is a Tri- Regional medical center, in which other hospitals can send there patients to them when they require extreme critical care, or something that falls under a specialty that a local hospital can not handle. There are 15 major medical hospitals in the tri-state area that can fly a child by helicopter to the Hospital within 15 minutes. When Jo and I go to the hospital, it is not uncommon to see cars in the parking lot from as far away as Pennsylvania or Massachusetts. There are parents that have to drive two and three hours in order to see there child. Jo and I find it difficult enough to get there every day, and we are only 20 minutes away, assuming there is no traffic. However, the Tappan Zee Bridge seems to have a accident every single day, and I simply can not remember the last time we went where we did not sit in stop and go traffic either going there or coming back. A 20 minute trip can easily become a hour or more.
I can easily understand why other parents may not be as involved in there child's care as we are. The NICU is intimidating. When your child first arrives there, you can barely touch them, you can't hold them, they have what looks like a thousand tubes and sensors coming out of them, and it seems if you even look at them to hard, their systems start to crash. You have no idea when your child will come home, and to be honest, when it first starts you are trying very hard to push away thoughts of your child not surviving. Its hard to be there and see other parents in the waiting area weeping, not knowing what there situation is, but at the same time completely understanding.
I was told very early on that parents tend to do one of two things. They tend to be there almost non stop, or they are there, then they have very few visits until they come home. I can understand this. Its mentally and emotionally draining. Jo and I decided early on that we would do whatever it took to bring Amirah home as soon as possible. That means that she might come home, not fully healthy, and if that is the case so be it.
A few months ago, we told you that as Amirah gets older, and we continue with this process, we would talk about how Jo and I feel, and how it effects our lives. We want you to understand the emotions about what is happening, because other wise, this blog is a pretty crappy medical site about a preemie. We don't want to sound like we are complaining. However, I want to share with you why I think it's important that we discuss this with you.
When Amirah was first born, numerous people would ask me how she was doing, and they understood the mental and emotional pressure that we are under. Now, 6 months later, I think a lot of these same people really have a hard time wrapping there head around the numerous challenges Amirah is facing. I sometimes suspect (although I could be completely wrong) that some of these people can not understand how a child can look so cute and healthy, yet still be so sick, especially after all of this time. It's beyond frustrating when I walk into work, and someone I haven't seen in a 2 or three weeks ask me "So how long have you had her home?" or remarks in surprise "She is STILL in the hospital!?!" My supervisor last week was literally stunned when I had to explain yet again how sick she really is, and how difficult it is to continue with daily life with a child in the hospital. I had to explain to him how she has great days, even weeks, then has set backs that erases all of that hard earned work. He wasn't even aware that she was still there! Yet others I talk to, tell me about the scary time their child went to the hospital for one ailment or another, and state "I understand how scary it is!", not realizing this isn't 100 degree fever, or a bad cold, or a broken bone. I try not to really discuss it anymore when at work, and I actually almost dread being asked about Amirah. It sometimes feels like others think I am making it sound worse then it is, or that they are asking as if I expect it of them. Jo has stated feeling this as well from people. If there is ANYTHING I could stress to you, it would be the desire to wake up, go to the hospital, and find Amirah is fully healthy, and ready to come home, and that we can began being a normal family. There is nothing more we desire then to turn this blog from Amirah's struggle for life, to a simple blog of the cute things babies do, with pictures and videos and normalcy. However, the universe for its reason has saw fit to have the three of us go through this process instead.
So, I want to stress while this blog is about Amirah, as her parents and primary caregivers we feel we have to discuss how we are doing emotionally and mentally. We hope that by in sharing how we feel, we may better be able to handle this, and provide insight into the difficulties, stress, and yes joy, of having a child with special needs.
I want to thank Liesel yet again for al the love and support she send our way. I meet Liesel on line while I was in the Navy, and while we have never met, I am happy to say she is one of the closest friends I have. There are others, but she constantly lets us know that she believes in what we are doing, and that we have a huge network of support and love, and that there are a LOT of people that are thinking about and praying for Amirah on a daily basis. This, more then anything, is what this blog is about. We have to remind ourselves constantly that we are lucky, for while Amirah is a special needs baby now, in five years the possibility remains very strong that she will just be a normal five year old girl.
So, while this blog is about Amirah, we will continue to discuss the three of us, as a family. I hope you understand why we feel the need to do this. Thank you ALL for your support.
Love is Always,
Andy
