Monthly Archives: January 2009

Jan 2009 Myrtle Beach trip

Jocelyn has been doing so well. We decided to come down to Myrtle Beach to see Shane’s dad who we haven’t seen in a while and Shane’s niece also who will be here and we have not seen her and her family in almost 3 years. She and her family are being re-stationed and will be 12+ hours away. Overall has been a great visit. It was very good to see everyone. It is amazing how the time goes by so fast. We had ourselves quite a scare yesterday. As I went to lay Jocelyn down for a nap….. She had finished eating about a 1/2hr. to 45 min. prior, she was very tired, but junky… I coughed her to clear her airway before putting her on bipap. It seemed to make her more junky and from being so tired she was then very upset. After giving her several coughs we noticed that she still seemed to have something blocking her airway. She then spit up which is very unusual, and her oxygen levels continued to drop. We continued with coughs and at some point had to switch back and forth between that and the amboo bag. It was very scary. Her oxygen just didn’t seem to want to come up. We stayed below and around 50 for a while. Finally we called EMS. Of course not many are familiar with SMA. The guys that came to help were very nice and helpful. They were very understanding and willing to except that we didn’t want to blast her with oxygen, we were only going to use it if absolutely necessary. You see we are pretty positive it was a mucus plug and it was just hard to get out. Of course her being full from recently eating and very tired didn’t help. So we got her numbers back into the low 90′s and they suggest we bring her to the hospital and let them check her out. We figured it may not be a bad idea since it felt like she had low oxygen for a long time. Time wise I really can’t recall exactly. I do know it always feels so much longer than it is though when we do have little episodes. But this probably was close to 20 minutes or more that we had been trying to get it up. Her oxygen would come up then go down, up then down. Aggghhh… But we did get it up. So not knowing where I was they asked me which hospital. Hmmmm…… I didn’t know. I just said they must have pediatrics. So we went to Grandstrand???? So needless to say they may have some type of pediatrics maybe a floor or just the ped. that was on sight but when I walked in the door I knew by the look on the nurses face that this was not what I expected. Knowing what I know now we may could have just put her on bibap at the house and maybe had the EMS there in case she went back down. She really just needed a nap. Especially after all this. So anyway now we sit at this hospital with a staff that has heard of SMA. I was a little worried at first. But I have to say thank you Lord! He was right there with us and by Jocelyn’s side the whole time. It is a good thing that I have learned that it is not worth getting upset when they don’t have what you need or are not really equipped to handle the situation. The doctor that worked with use was wonderful. They took and x-ray, did the prick of the foot to check levels and let us put her on bipap and let her take a little nap. I felt very strongly that she needed to sleep on bipap. He was o.k with that. They came back to say that the x-ray looked clear, it was taken while she was on bipap but he said he was pretty confident that she was o.k. The blood test all came back fine except for the white blood cell count. Which was at the time 3x’s elevated which does indicate possible infection. Weird…. no other signs….. he did say that the stress from what had happened can elevate it at first and that it could possibly not be and infection. Hmmmmm….. so we did agree to put her on an antibiotic for now. I will get home and have her checked again to see if she needs the antibiotic but we would rather be safe then sorry. We are so thankful that Dr. Tarboro let us hang out in that room and monitor Jocelyn. The other option would have been to transport her from there to Duke. I know they don’t let me ride with and I don’t think I could have handled that. How do you hand over your care for your child to strangers that have “heard” of SMA? They are “trained” to handle…….. Not what I do on a daily basis. I would have been a nervous wreck that something that would have been normal daily routine for me could have been a mess with us not being present. I was very nervous that we were going to have to discuss this option further. Thank God we didn’t have to. Turned out their adult pulse ox thing was not giving and accurate read. What was originally saying 92-94 on their screen, while on bipap, turned out to be 97. When she woke up the plan was to observe, cough, and decide what was best for her. She woke up in a good mood. She was playing and the doctor asked what we thought. I would like to take her home is what I said. Thank God for such a kind, understanding doctor because he said that would be o.k if we truly felt that was best for her. He said we know her best. He contacted Duke throughout the day. Before we left they wanted to do a blood culture to check for the infections but they were all o.k with letting us bring her home. We are so thankful. So far she has been o.k. We watched her closely last night and are heading home today. Please pray for safe travels with no unexpected complications. It is about 31/2 to 4 hours to get home. I will keep you updated on how she is doing. Thank you!

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2009 Happy New Year

Well hello to all of you! We hope everyone is having a great start to a new year! So far so good around here! We have just been keeping busy. Shane has been busy at work, Jocelyn had to get back into the routine of therapy. She was able to get a little break over the holidays. Along with therapy she was fitted for new AFO’s for her feet. We also had a visit from Karen our assisted technology person. That is always a great visit. She always has such great ideas. We are working with the computer as Jocelyn enjoys here computer games. She does pretty well with the switch. We have learned how to use the switch along with other activities such as reading and are learning how to use it for conversation too. As you can probably tell she is still not talking. She will make sounds but mostly with her mouth closed. She does try to “sing” to some of her favorite shows.(Absolutely adorable) We say she grunts and hums I guess. But she still isn’t even 2 yet. We are exploring ideas for ways to communicate. Not that we are giving up her ability to speak but we want to make sure she doesn’t get frustrated as she will want to tell us something and can’t. We are going to try some of the symbols from boardmaker to see how she does with that. But most of the communication boards are difficult for her to activate due the the amount of pressure needed when you push the buttons. Also we are looking at some eye gazing activities to see how she does with that. We will see how it goes. As for me……. I am good! I have to say I/we are often overwhelmed by the amazing generosity, love, and thoughtfulness of so many of our family,friends, and even people we barely or may not have even met. It is amazing. I don’t even know where to begin or how I/we could even express how thankful we are to have so many wonderful people in our lives. We just pray that each and everyone of you will be blessed just as we have. We pray that one day we will have the opportunity to touch others lives like you have ours. We would would jump at the chance to help someone to feel as you have made us feel.I don’t know that there are words to express how much it means to us. Love to you all!!!!! Thank you!

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