Noelle Update

So far so good with keeping Noelle at home!! :) :) This illness has really shaken things up around here. Poor Noelle has been struggling to keep her oxygen saturation levels up. There are times that she is wheezing so loudly...I can hear it all the way across the room. There are times she works so hard...her entire body moves while she breathes. It breaks my heart to see that she has to work so hard just to breathe with just an ear infection and upper respiratory infection. Thank goodness she has not come down with anything worse this season. Knock on wood! She slept a good amount of the day yesterday and when she wasn't sleeping...she was crying and fussing. I gave her nebulizer treatments every 2 hours yesterday and then last night woke up a few times to give her a boost in the middle of the night.

Over the past few weeks, we have been able to wean her oxygen. I think the pulmonologists would kill me if they knew how much oxygen she was up to now. But...she's at home and that is the best place for her. We are lucky to have the high flow oxygen at home to help manage these sick episodes.

So, thats the update for now. Noelle is hanging in there. Unfortunately, Andon is having a hard time not getting a whole lot of attention. In fact, he is screaming for attention. I'm hoping today will be better and I'll get to spend a whole lot more one on one time with him!!

Is there anyone out there reading these?? On the carepage, I could always see if people were reading...now I can't...so I'm treating this like my own diary.

Staying home has been quite the adjustment for me. I'm adjusting well I guess. I think things will be better when things at home are normal. Last week was Christmas and this week Noelle is sick. I'm hoping things will level out next week! Happy New Year!!!


Stacie :)

Lots of changes and sickness!!

Well, lots has changed at the Mikels. I recently had to quit my job to stay with Noelle. To make a long story short, it just was in our families best interest for myself or Ross to stay home with Noelle. In the long run, it makes more sense for me to stay home with Noelle. I know her entire history and am always the one taking her to the doctors. So, now it is my job!! :) I'm incredibly sad and pretty crushed to leave a job that I love and a job that I helped build and a job that I'm good at...but in the long run....this is probably the best for our family. I'm going to miss everyone at Discovery Station and hope I can keep in touch with everyone.

Andon is having a hard time with the transition to being home all the time. He misses his teachers and friends a lot and I think he is going to get bored around the house eventually. I'm going to have to keep on my toes with ways to entertain him. We will probably arrange some play dates with some of his school friends. Other than that, most likely we'll stay inside for the winter and get out again when nice weather hits. Enter cabin fever... :) :)

Poor Noelle has been having a really hard time lately. She was "off" on Christmas day and I just thought she was really overwhelmed with all the gifts and change of routine. Nope...she was getting sick. We were in the Emergency room at Fairfax from about 10pm to 4am yesterday. She was desatting and working entirely too hard. The doctor on call said it was probably best to get her looked at. So, we went in. It was a joke. The resident was the one heading up her care and had no experience with a chronic lung kid. The attending came in and literally did not touch her. They released her with the diagnosis of a "cold." Gave her a huge dose of steroids and let us go home. I was happy they let us go home but was not happy with the visit. I have never said that about Fairfax before....I honestly think it has to do with the pulmonologist that was on call last night. We are not his biggest fans and he knows it. Anyways, we followed up with Dr. Fields (her main pulmonologist that we love) this morning and he said the poor girl has an upper respiratory infection and an ear infection. She'll be on high steroids for a week or so and an antibiotic for 10 days. Noelle is a trooper. She is still working really hard to breathe and wheezing a lot...but she is hanging in there at home and that is all that matters!!! :) :)

We had an amazing Christmas Day!! It was our first Christmas at home as a family and it could not have been better. We stayed in our pajamas all day, played and just had a relaxing fun day!! Something we totally missed out on last year. We were so happy to be home all together! I'll post pictures soon!! I wish everyone happy holidays and a very happy new year!!! Here comes 2010!!!

xoxo,


Stacie :)

Noelle's Pulmonologist/GI Visits

This week has been a little hectic with doctors appointments and testing. The pulmonologist visit went great on Tuesday. Her lungs are growing right along with the rest of her body and seem to be improving little by little. From a respiratory standpoint...Noelle is very stable. YAY!!! This is a first... :)

From a GI standpoint...we have a long way to come. Noelle had her first visit with the GI doc and it was interesting. There is some talk that she potentially has a tear in her nissen (the nissen was a surgery done to eliminate her refluxing her formula back into her lungs or aspirating). This could be the reason that her lungs are taking sooo long to get better. She could be having some micro aspirations not bad enough to cause serious respiratory distress...but bad enough to cause the coughing/gagging/retching episodes that she has. He also threw out that she may have herniated the nissen site. I don't really know what this means yet...but will get more information on that if it becomes a reality. The other option is her gut motility being too slow (meaning her stomach empties slower than normal). The GI doc threw lots of senarios out there for her today...however, no answers will come without testing. Tomorrow, I'll have to set up an Upper GI test for her for sometime before Christmas. This will basically put contrast dye in through her gtube and xray her stomach to see if anything comes back up. This test will see if her nissen is still working properly. If the test comes back normal...she'll go on to the next test. Potential tests during the next few weeks include: Upper GI, Motility tesing,Endoscopy (she would have to be sedated for this one) and another test that I could not begin to spell. If her nissen has started to tear...then we have some decisions to make. Do we let them operate and fix it? He also brought up the possibility of getting a G-J Tube. This is a tube that would go into her intestine below her stomach...so essentially food would skip her stomach and go straight into her intestines.

The bottom line is that we were correct in assuming that the choking/coughing/gagging/ retching episodes were bad. They are really painful for her and uncomfortable. The doc says the sooner we figure out the problem...the quicker we can get her comfortable. So, thats the latest Noelle news. It's a lot to take in and hopefully will require minimal testing to figure out the problem.

Today, Noelle had her first stuffy nose!! Hopefully, it's just a cold and will pass quickly. The good news is she doesn't have a fever and doesn't really seem to be bothered by it. It took her a few hours to figure out how to breathe out of her mouth...but overall she's still doing fine. If all goes well...she should be completely weaned off steroids next week for Christmas. She has been on continuous steroids for over a year now...I'm crossing my fingers that Christmas Day will be her last dose for quite some time!! :) :) We are most thankful for spending our first Christmas AT HOME as a family!!! YAY!!! It's a huge deal!!

On a great note, I've already signed up for the March for Babies in April!! I'm super excited about putting together the Go Noelle Go Team for 2010!! Please email me if you are interested in joining the team!! :) :)

Hope everyone is ready for the holidays!!

xoxo,


Stacie :)

Gettin' ready for the holidays!!

We have had a much better December since the last post. It seems like things have calmed down a bit. Noelle is still struggling with the coughing/gagging episodes...but we are all hoping with her doctors appointment this week that the doc will figure out something. Andon is having a great December and is really looking forward to Christmas. He tries to negotiate everyday to make Christmas sooner! He is so excited that Santa comes soon!! We have been busy decorating the house, baking cookies and putting together our gingerbread house. Many of our decorations did not get put up last year as Noelle was still in the NICU and I was running up and down the road everyday. So, Andon has been really excited to decorate!!

We took holiday pictures for our Christmas card recently...So, I posted a few of the pictures that are not on our card. The kiddos looked so cute!! It was pretty tricky to get both of them to look at the camera!! haha!! Overall, we are doing well and are ready for the holidays!!

xoxo,

Stacie :)

Happy Freakin' December!!!

Although we are only 4 days into December...it has been a wild and crazy month already!! I can only hope that the month gets better from here. We have absolutely been having it out with Medicaid and our waiver program. I made a call down to Richmond to see if Noelle was eligible for more hours/services/therapy/ etc last week. To make an extremely long story short, one of the ladies down at DMAS (Department of Medical Assistance Services) thought that Noelle was not fit for the waiver we are currently in. And...because my mom and my mother in law were getting paid by the state and doing medical things (which we just thought they were "clocking out" for)...they tried to accuse us of Medicaid Fraud. We had no idea that we were doing anything wrong. This lady wanted us to get on the Tech waiver and she wanted it done...yesterday! She basically told us that if we continued doing things they way we were...we were going to be committing medicaid fraud and our medicaid could be pulled from Noelle.

I completely realize that I am speaking Greek to many of you. But the bottom line is the waiver qualifies Noelle for Medicaid. Medicaid pays most of if not ALL of our out of pocket medical expenses. Our private medical insurance covers $5,000 worth of home equipment per YEAR. Noelle goes through $6,000 per MONTH in just oxygen equipment. Thus, losing medicaid would mean that we would be forced to institutionalize Noelle. Then, if that happened...most likely...I would have to be institutionalized in a mental kind of way!! :)

So, Needless to say, Ross and I were stressed to the max. Not eating or sleeping!! We talked a lot with several advisers that helped us make a decision and then we finally told the lady at DMAS that we really did not want to be on this Tech Waiver because we did not feel it was in Noelle's best interest to have complete strangers in our house for 16 hours per day. We told her we wanted to stay on the EDCD waiver which we are on now. She tried to threaten us that our hours would be reduced and tell us that it was not the right decision. Whatever! She can have her opinion all she wants....however, she doesn't have a special needs kiddo at home! She has no idea what Noelle looks like, she has no idea how cute Noelle's smile is when she plays! Quite honestly...I think she could care less.

The bottom line is that things will relatively stay the same for Noelle. Ross is going to have to work a lot from home until all of this blows over. I had to take off yesterday and today to handle these issues. There is so much red tape with government funding and programs. Having a special needs child should be enough to handle, let alone having pushy caseworkers that think they know what is best for OUR child. We have submitted all of the necessary paperwork and will get an answer from the state in about 2 weeks. We are crossing our fingers until then!

Not to mention, the past few days have not been great ones for Noelle. She is having a really hard time with the coughing/gagging/retching episodes which she has been starting to desat from. I have no idea what the deal is...but I'm having a really hard time getting the nutrition and liquids she needs in her each day. The only way to stop these episodes is to stop her formula going in....which puts her further and further behind for the day. I called the pulmonologist about this today and he was able to call the GI doc and get us in faster. So...we'll see. Noelle will see the GI doc week after next. Hopefully, she quits this coughing craziness and she is okay until then.

I am absolutely exhausted and drained after this week. I have never been so stressed out before about fighting for Noelle. I still think about that lady saying "Medicaid Fraud" to me....and my heart just sank. We are very honest people and will do just about anything for the good of our kids. However, trying to cheat a system which literally feeds our daughter and gives her the air she breathes is ridiculous!

On a great note, our Christmas Tree is up, the house is decorated and the weatherman is calling for snow tomorrow!! Sorry for the ranting and raving....I'm not sure if this post makes any sense at all!! Hope you followed....haha!


Stacie :)

Another Diagnosis for Noelle

After a routine trip to the pediatrician...Noelle was diagnosed with Ataxic CP today. I'm not surprised or shocked...but seeing the diagnosis on paper reminded me about how thankful we are that she is even here. After I googled the information on that form of CP...I'm totally shocked that I never figured it out before. I've been looking up information on CP for months now. BUT...all of her doctors had convinced me that she had low/no tone and that was opposite of CP. The pediatrician was shocked today to find out that no one had offered this diagnosis for her.

The main symptoms for this type of CP include extreme low muscle tone and tremors. We have been talking about her tremors since the NICU. Her low tone has always been an issue. Even some sites talk about "jumping eyes." This makes me wonder if she really has the nystagmus (sp?) or if it has been a symptom of the Ataxic CP all along due to the lack of oxygen during her early days.

Here is the great news. Having this diagnosis for Noelle means that she will be able to get more services, more OT/PT and hopefully nursing hours during the day to help my mom and mother in law. It is sad to be excited about such a diagnosis. However, we/I have been waiting for answers to predict some shred of the future with Noelle. It is nice to know that something is going on....and this gives me something to work on. Helping Noelle comes first...whatever that involves!!

So...we are thankful! Thankful for some answers, knowledge and hope. Only God knows what the future truly holds for Noelle...and I'm okay with that!!

xoxo,


Stacie :)

November Craziness!

Hey all!! Yay!! Pictures!!!!! The top picture is a picture of Andon at Lowes last weekend doing the Kid Clinic!! The middle picture was taken today waiting at the pulmonologist and the bottom picture was Noelle on her birthday. Look how far she has come!!

Just checking in again. We have been trying our best to stay as healthy as possible. I just wrote the last update on the carepage...and it was hard to shut it down. Noelle was having some desatting issues over the weekend and early this week. The pulmonologist on call increased her steroids and she seems to be doing better.

Andon on the other hand, always seems to have issues after Noelle gets a lot of attention. I think we need to have some one on one time with him this coming weekend. He even told me the other day that he didn't really like Noelle and wished she would go back to Grammie's house. That breaks my heart to hear. I wish I knew how to find great way for the two of them to play together like real siblings. The poor kid has had a cough for about 5 weeks...so I'm hesitant to let him get too close to her.

Noelle had her monthly visit with the pulmonologist today. It was an overall good visit. My fear is that they have no idea what the future holds for Noelle. I think initally, the docs thought that she would eventually come off of oxygen and the feeding pump...and I think everyone is having second thoughts about that now. The pulmonologist referred us to a GI specialist. With her coughing/choking/gagging issues and inability to increase her feeds...the pulmonologist and nutritionist at the office are out of options on how to increase calories and intake for her. He would like for Noelle to see the GI specalist in the next few weeks.

On a great note, Noelle received her H1N1 shot today and did not even cry!! :)

The neurologist just 2 months ago told us that we should expect to see a huge improvement in her language development and gross motor skills soon. She is slowly progressing...but is no where near where she should be for even her adjusted age. To have a 17 month old that can't crawl or even put weight on her hands and knees makes you think twice about her gross motor development. She is too weak to even hold herself up. All the docs agree that Noelle should have more PT/OT/Speech therapies...but how do you get this without paying a fortune for each visit? How do you accomplish this with two working parents? How do parents feel when they know what they should be providing to their special needs kid...but can't go about getting it for them? Its tough...and I wish I had the answers.

I'm in a little bit of a mood today. I wish I had the answers...I wish I knew which direction to go in next for Noelle and the entire family. Coming to the realization that we may be dealing with these issues forever....is hard. Finding a way to deal with them, cope and move on is even harder. Sometimes I still feel guilty and responsible for Noelle and her issues. I know it was not my fault and could not be prevented....I know it is normal to feel this way sometimes...but I thought it would get easier with time. I just have to move on.........

Next week is Thanksgiving....the Mikels have so much to be thankful for. I'm ready for the holidays at home!! :) :)


xoxo,

Stacie :)

Welcome!!

Welcome to our blog!! This is something new for me. I'm sure it will take me a while to figure out. Thanks for the suggestion Lisa!! To follow the story of Noelle and her premature birth and life in the NICU...feel free to log onto our Care Page at www.carepages.com Page Name is "Mikels." From now on, I will most likely update here instead of on the care page. Some things just need to come to an end. The care page was mostly about life in the NICU and Peds Floor. This will be a new beginning of life outside of the hospital. I think now that Noelle is 16 months old...it is just time to move on!! There is a lot to be said about struggling to raise a family with a child with special needs. It can be so rewarding and so hard all at the same time.

I'm going to try better to keep up with our blog and do frequent updates on our whole family. I'm sure much of it will revolve around Noelle. Our live is pretty crazy most of the time. Trying to juggle a family of four, work, commuting, house, bills, dogs, etc...is not that easy. But it's fun and NEVER boring!

I also want to post lots of pictures. I would love to get pictures up soon of Noelle and all of her equipment so everyone can see our set up! It is pretty interesting! With the holidays coming up, life is sure to stay busy!! Thanks for following us and supporting us through all of lifes adventures!


xoxo,

Stacie :)