Thursday, June 30, 2011

Uncharted Territory

The doctor came in today and asked what we've done in the past when Skylar has had a fever and how she reacted. I told her we never have had a fever last more than a day and this was all new to me. She was surprised - obviously a good thing - and decided to start some antibiotics to try and attack whatever is lurking in her body.

We've run a couple of tests for different things and everything has come back negative, which I guess is a good thing, but we obviously know there is still a problem and can't find it... that's frustrating. I hate watching my little girl uncomfortable, in pain, not feeling well and standing by watching helplessly. I wish I could fix it and make it all better so she didn't have to suffer.

I'm so thankful for the staff at the TICU (Technology-ICU) here because they let me be involved as much or as little as I want. I have been doing a lot of the respiratory treatments and helping with a few other things, but it's so nice to have a staff who respects us as parents and caregivers even though we don't have a degree in nursing or a specialty practice.

Kyle came up last night to bring me dinner and bring a lot of Skylar's favorite movies from home since we're going to be staying here longer. I am so thankful we live close to the hospital and Kyle can come hang out when he's not working. Also, family and several friends have come by to bring me meals and other fun goodies - so amazing! We're so blessed.

So for now, we're preparing to camp out at the hospital throughout the weekend and see what Skylar does. We've switched her feeds back to the stuff we were on at home since it's not good to implement changes during an illness. We'll hopefully get this fever under control and see if we can bust out of here!

Hope you have a great weekend!

Wednesday, June 29, 2011

Hospital Update

Well, we were smooth sailing yesterday and thought we would be going home today... However, sometime during the night, Skylar developed a fever and was not sleeping well - and by that I mean that she was asleep, but her heart rate was still really high so it was not a restful sleep.

I've been wanting to update all morning and afternoon, but the internet has been down. So here I am.

We've been giving her Tylenol and she's been trying to get some sleep, but she's still kinda uncomfortable. We're trying to figure out the cause of it... We switched her formula last night to the big girl formula and she didn't digest it really well, but that wouldn't cause the fever. We've lowered the rate of her feeds to give her belly a break in hopes that she'll slowly adjust to the new formula and will continue to keep working back up to her normal rate. In the meantime, we have a few ideas as to what could be causing her fever, but have to do some testing and won't know until tonight or tomorrow.

I'll keep you posted.

In other news, we actually heard that there is a family near Madison, GA who might be a finalist in the Extreme Makeover so we're no longer holding our breath to hear Ty on the 10th of July. However, we're not giving up hope completely and obviously would still love for the family chosen to be us! If it's not us, you can find me at our local yogurt shop indulging in some comfort food :)

More updates soon... peace.

Tuesday, June 28, 2011

Children's Hospital Stay

So we made it to the hospital yesterday evening for our scheduled visit to get the Trilogy. Skylar had some junk in her lung (upper right lobe) when she got here, but we've been able to clear it since then. We have been using the Vest which has been awesome! I am so glad Skylar's chest barely reaches the minimum requirement!!! Our pulmonologist stayed late to make sure we got settled in well and set us up for the night - Kyle and I can't even express our appreciation and respect for Dr. Brooks.

I LOVE Children's Scottish Rite Hospital of Atlanta. Seriously, I can't imagine being anywhere else when we need medical help. I feel so bad for families who don't have a great children's hospital close to them. I've heard awful stories of nurses being jerks, doctors giving bogus information, parents not being allowed to stay with their children overnight... and worse. Our stay has been wonderful so far and we're extremely grateful for a staff who respects our requests and is extremely friendly and helpful. Skylar misses Nurse Natalie though :)

We were slightly concerned that Skylar might be coming down with something, but it looks like teething is just causing a major secretion increase (which means more work clearing it) but it is manageable. The other thing we were hoping to get taken care of was Skylar's g-tube replacement in her belly. When we got her g-tube placed a little over a year ago, her surgeon told us they last about a year - sometimes more, but usually a year. The awful thing is that with most SMA kids, they just yank them straight out of their belly with little or no pain medication since anesthesia isn't an option due to their respiratory fragility. I am so thankful that other SMA parents warned me about this or I would have freaked if they tried to do that to Skylar! 

After talking to GI, her g-tube looks good still (even after a year and three months) so we're going to ride it out and see how long we can make it last. The doctors have said they've seen some last up to three years so we'll be praying we are one of those cases. They told us what we need to look for as far as deterioration and also explained what to do in case it falls out at home so there's not an extreme emergency. I am pretty confident we can handle it, however, I have also learned to expect the unexpected and pray. 

We're switching up her nutrition a little bit before we go home to make sure she tolerates the new formula. It's similar to what we were using, but the toddler version of it and a different brand name. I think we can get this covered under medicaid since a prescription is required, because every time you get more specialized with formula, the price goes up! I'll try to update again soon when we get to go home.

EXTREME UPDATE*** Extreme Makeover Home Edition is coming to Georgia in 12 days!!! Again, we have no clue what family is chosen and where they will be building, but we're hoping they show up at our door on July 10th! Regardless, they will be helping a family in need so if you want to get involved and possibly be on tv, check out the GA Build website. They're having a pep rally THIS THURSDAY at 7PM in Madison, GA with Vince Dooley, the Falcons cheerleaders, the builders for the GA build and the camera crew from Extreme Makeover. More details are on the GA Build Website. 


Thursday, June 23, 2011

Super 19

Skylar turned 19 months old on the 19th this month which was pretty exciting. Not only was it her "birthday" but it was also Father's Day and Skylar had a special present saved up for her Daddy! That's right, we finally have the beginnings of a tooth poking through - her top front right one!!! I can't wait for it to come in more :) Kyle has been such a great dad and it's such a blessing that we both were able to celebrate a second Mother/Father's Day with Skylar. We thought SMA was going to rob us of that, but Skylar is such an amazing little fighter. Kyle has actually been traveling the whole month and has only been home on weekends (which is partly why I have not posted anything in a while). He has been working so hard to keep up with his job, the high work demand and time commitment, and I am so proud of him because he's doing such a great job!!! I know it's hard on all of us when he travels, but we're so thankful that he has a good job that pays the bills and allows us to have good insurance. Here's Skylar in her "Sweet Like Daddy" dress that I altered to fit her better :) The sewing is coming along great and hopefully I can start making things from patterns soon!

I feel like the two weeks leading up to Skylar's 19 month birthday were rough. Our nursing company dropped the ball and didn't re-apply for more nursing hours soon enough so we had a lapse in coverage for a couple of days until more nursing help was re-approved. Thankfully, our nursing company worked their butts off to try to push it through as fast as they could so we only had a few days without Nurse Natalie instead of weeks. Normally it wouldn't be too bad, but because Kyle was gone traveling, it was a much bigger deal. Medicaid surprisingly got the paperwork approved first so they are covering our nursing now! 

We're finally in the next step of getting the Trilogy bi-pap approved and hope to get in the hospital in the next week or so to adjust the settings and make sure Skylar gets what she needs. We're really excited about the new company supplying the equipment because they seem very customer service oriented and are friendly. We've had some bad experiences in the past with two other companies which makes my life a lot harder because I have to make phone calls, get upset and argue with people to make things right. I am hoping for a lot less of that. It seriously baffles me sometimes how certain companies can stay in business!

Anyway, for the past two weeks, Skylar has been struggling with something. A week ago, we had an extremely scary night when I was doing a normal treatment with Skylar and "coughing" her with the cough assist machine. Normally, I would say this machine saves her life on a daily basis and is the mac daddy piece of equipment when it comes to emergencies. However, last Thursday, I was using the cough assist and Skylar's oxygen saturation was dropping at an alarming rate... 70s, 60s, 50s, 40s, and with each second she turned whiter and whiter. We hit the 20s while I was still coughing her and I slightly panicked. Her heart rate started dropping as well and I think I said, "Stay with me" or something like that while trying to figure out what to do next. The cough assist usually moves anything blocking her airway, but I wasn't getting anything when I suctioned her. I was at a loss. I quick turned the bi-pap on threw the mask on her face. Slowly, her oxygen started coming back up, but the color took a little bit longer to return to her body. That night, her oxygen kept dipping into the 80s (which causes the alarm to go off) every two hours or so. I knew there was still a big mucous plug in there waiting to show it's ugly face again. Thankfully Kyle was going to be home the next evening and could help me over the weekend.

As Kyle was unloading his car on Friday, instead of opening the door to hug him and tell him hi, I flung open the door and yelled "I need your help now!" Skylar was dropping again and I needed an extra set of hands to get the oxygen tank flowing in case she dropped so low again. We've been much more aggressive with her treatments (chest PT, nebulizer meds to help open her airways, etc.) since then and Saturday we were able to get some of the chunks of mucous out of her lungs. I think today I got the last little bit that was clogging her airways because her oxygen level has been much better. We're still not where we were, but hopefully we can recover fully soon. We also just got approved to trial a "vest" that will help shake mucous loose and will become a part of our daily routine. Usually kids have to be 20lbs, but Skylar's not quite there... However, her chest diameter is at the minimum requirement so we're going to test it out and see how she tolerates it. My friend with Cystic Fibrosis has been using a vest for a long time and it's helped her tremendously so I am actually kind of familiar with it!

Skylar's been on bi-pap the past two weeks, pretty much non-stop, because we thought she might be fighting a sinus infection or a cold of some sort. It very well could be, but I also think that her teeth has something to do with it. Now that the front one is wiggling it's way through, I am hoping the others will figure out how to bust through as well. Skylar has over 10 teeth that are seriously ready to come through and it must be so painful - especially when you can't pick up stuff to chew on and ease the pain. We're giving her children's Motrin now and have been massaging her gums for some time. We'll see what happens!

Before she "crashed" two weeks ago, we were able to get some pictures of her with the goodies I won from the Gwendolyn Strong Foundation Mother's Day Giveaway. Her teeth are making her unhappy, so sorry for the not so happy face. It was really fun to get a box full of items for me and Skylar. Some of the stuff is not pictured, but we're enjoying all of it! Thanks so much for all of the vendors who donated to make a special giveaway package and help raise money and awareness for SMA!!!

It's so fun to observe her becoming such a big girl. She's about 34 inches long now and would be up to my hip if she could stand up!!! Her hair is developing into a pretty awesome mullet (I don't have the heart to cut it!!!) and she just looks like a little girl instead of a baby. I am so excited to see the rest of those teeth - I know she'll look even older!

For Skylar's 19 month birthday, Kyle, being the awesome dad that he is, built her a swing for her room!!! We have been trying to figure out how to make a swing/hammock for Skylar that would support her so she could still lay down and keep her body flat, but something that would move like a swing that could hang from our ceiling. Well, Kyle made it for his little girl on Sunday and it's awesome :) We still have one last finishing touch on it before we post pictures, but I'm so thrilled Skylar can swing now!!! We're working on logistics with her on the bi-pap machine while swinging, but it's so fun! 

EXTREME UPDATE*** Extreme Makeover Home Edition is coming to Georgia in 17 days!!! They announced it on their facebook fan page last week. We have no clue what family is chosen and where they will be building, but we're hoping they show up at our door on July 10th! Regardless, they will be helping a family in need so if you want to get involved and possibly be on tv, check out the GA Build website.

More to come soon - I just had a moment to get you up to speed on things. Hope more can follow shortly. Peace.

Wednesday, June 1, 2011

The First...

Since it's the first of June and the first post of the month, I thought it only appropriate to share a "first" that we experienced this past week. No teeth yet - don't get too excited. 

Tuesday, Natalie and I were getting ready to give Skylar a bath but noticed her stomach was really bloated. We brought her to the bathroom and massaged some gas out. You could tell she immediately felt better and was breathing better and so we decided it was time for her bath. We put her in, and like we always do, Natalie started washing and massaging her legs while I did the same with her arms and body. I was just washing her face and hair when I heard a bubble sound. Skylar had farted in the tub before, which caused Natalie and I to jump back and start laughing, but this time, some nice diarrhea came out as well. That's right. Our first poop in the tub! I knew it was only a matter of time... In fact, I might have been sad if Skylar had passed away without ever doing that. It was one of those things that I knew wasn't going to be an easy clean up because we can't just stand her up out of the mess and hose her down, but it's just one of those "mom" moments to experience. Our girl is getting so big!!!

We had our first consultation from the company who will be providing the trilogy just to make sure we don't have a hazardous house and have working outlets. It's was actually pretty funny, but I'll spare you the details because I think you had to be there. We're hoping the paperwork goes through smoothly and we can get approved for the Trilogy (our new bi-pap) soon. Then we can get checked into the hospital to make sure all the settings are right and will hopefully be much more mobile with Skylar. 

Skylar is way ahead of her parents with technology, yet again. Skylar got a super awesome iPad last year, while Kyle and I still have old school flip phones. Kyle and I have a big square box of a tv that was the first "flatscreen" as far as the screen technology goes yet it weighs 100 pounds and is huge even though it was super cool when I first got it. There's a built in DVD and VHS player - do you even remember those? It works and so we can't justify getting rid of it. Anyway, Skylar got her first TV last week - a super sleek LED 22" HD flatscreen with a built in DVD player :) The mini travel DVD player that we used daily to watch movies from her bed finally quit on us and we decided it was worth the investment to upgrade for Skylar and our daily enjoyment of movies. It's amazing!!! Worth every penny! In the few days we were without one, we moved to the living room because Skylar would have her little meltdowns until we were watching movies. At least she knows what she likes! See the new mounted tv below!

You can see that I also updated her room with some wall decals (a present for Skylar's birthday) that I actually put on the plain white doors in the room. It has added so much more color! I hope Skylar enjoys looking at the new things in her room. We're always looking for creative ways to change things up and keep her attention. 

The first Extreme Makeover location for the season was announced - it'll be in Pennsylvania. Still hoping they bring that bus to Atlanta... Maybe they'll keep the same trend as last season and start in the northeast and move on down the coast... Not losing hope. 

Anyway, don't forget to leave a comment if you're interested in ordering a Skylar Project t-shirt. We're still working with vendors, but we'll need to give them an estimate of how many to print for the first round. Thanks! 

Hope you're staying cool in the summer heat. Peace.