Wednesday, October 26, 2011

At home

Sorry I didn't get to this sooner! Sam was released from the hospital Monday, and we were happy to come home. She responded well to treatment and as of yesterday has not even coughed. Amazing! It has been so nice for the past couple days to just be back in our normal routine. I was sitting here watching the news and saw the huge snow dumping storm that hit Denver over the past 24 hours. I find it interesting that Dana +/- Sam and I were supposed to be driving back yesterday. I believe the Lord was saving us from that drive and the bad roads from the weather by keeping us here. I wish it wasn't pneumonia and the pediatric ICU that was needed to keep us here! Maybe its just my need to know the "why", but I do believe God has a plan in everything even when it doesn't make any rational sense to us. Whether it was the weather/roads He was protecting us from or some other reason, we still trust that God is in control.

Sam in now scheduled for surgery Wed. Nov 23. We will be leaving the 21st-flying this time to avoid any hang ups due to potential bad roads that happen this time of year. We are praying that Sam does not catch any of the numerous cold/flu bugs that also are part of this time of year. We really do just want to get her surgery behind us, so we can move forward. Thanks again to all of you for your prayer and support. I won't be posting much in the next 3-4 weeks unless something major comes up, and then I will start up again when we head to Denver.

Saturday, October 22, 2011

No more tubes!

At least in Sam's face! This morning my baby got to get rid of her feeding tube and her air tube. So now I get to just look at her cute little cheeks and nose. Her bacterial culture is officially negative, so we dropped to just one antibiotic-the less irritating one to her vein! Its been a pretty low key day-Dana went to the house and was out for a few hours. So me and Sammy just hung out in our room. Got a visit from Grandma and Grandpa Blankenbaker first thing this morning and from Great grandma Marjie late in the day. It was a day filled with smiles and coos and R & R-all good things. It makes the bummer of not being at home a little less. I sure do miss my Charlee and Tyler though-saw them briefly yesterday. It's gong to be hard when we are in Denver for a week or so. My posts are getting shorter-this is good-it means there's only good news!

Friday, October 21, 2011

Our own room!

Yep, we are out of ICU! My little Sam is doing even better today. We are now in room 454. She only has to be bothered every 4 hours now instead of 2! It's nice to have a little privacy as well-not that it was terrible in ICU since we were the only ones there-but I don't have to worry about bugging anyone. Her stats have been staying normal even as the air has been decreased. Still no bacterial growth so that's good! She also got to go back to eating on her own. No more feeding through the tube! She was very happy about that-she sucked it down in no time.

Bonus! The respiratory therapist just came in and got the ok from the doctor to turn off her high flow air. If she does good then we can get all the tubes off her face which would be great! She is so cute this afternoon-smiling and cooing at me! My li'l Punkin Pie!

Thursday, October 20, 2011

Getting better!

Today is another day of improvement for Sam. Her vitals remain stable and she looks pretty good for a baby with lots of cords/wires/tubes attached to her. She has gained 1/2 lb since arriving so that's very good. Her oxygenation levels are remaining very high so she is being weaned from her air flow. If she continues at this rate, we should be moved out of ICU and into a private room tomorrow. That's where we will finish out the rest of her week long stay. The viral tests came back negative and we are still waiting on the bacterial cultures but they haven't grown anything yet. In light of her heart disease and high blood pressure that have been present since birth, she is at higher risk of getting RSV and if she got it, could end up in a pneumonia situation again. So since it's negative at this time, they gave her a shot of antibody against RSV today. I guess it's very spendy but prevents them from getting the RSV or at least lessens the symptoms. Its basically a super vaccine-instead of her body creating antibody to the vaccine, its just straight antibodies. Poor baby had to get that shot in the muscle so she's a little sore, but hanging in there.

I spoke today with the Childrens Hospital about rescheduling surgery. We have set up a tentative date of November 23-yes the day before Thanksgiving. That is 5 weeks out and we will just have to make sure everything is cleared with the cardiologist here in town.

We had several visitors today which is always appreciated. We can't say enough how much it means to have SO many people praying for us and for our little Sam. We know she is well covered! I'm hoping that when I update tomorrow it will be from our own room! Goodnight for now!

Wednesday, October 19, 2011

Brighter day!

After a very rough night, I'm so very happy that Sam is doing much better today. I did go in after my 3 hours of sleep this morning to find she had pulled one of her IVs out. She is such a determinted little bugger! Her vital signs are stable, her color is much better, and she is acting more like herself. She will smile at me when I'm talking to her and she even gave me a couple coos! Music to my ears! They did put a feeding tube in her because of the risk of aspiration if she nurses, and she is tolerating it pretty well. We called the Childrens Hospital in Denver and canceled our surgery appointment for Friday. We are now looking at 4-6 weeks before we get to have that done. Bummer-I was looking forward to getting it done and moving on. Guess we just have to wait a little longer. I have spent most of the day sitting in a recliner holding the little pumpkin. She is happiest with mommy, so I'm happy to do it! She has all kinds of lines and tubes-makes moving her around quite the challenge but we manage. Her bloodwork shows changes consistent with a bacterial pneumonia and the preliminary viral panel is negative so that is most likely. Shes on a combination of good broad spectrum antibiotics, so should kill what ails her. When they placed her feeding tube today, they took an xray to make sure it was into her small intestine. So we got to see her lungs again and they already look better after just 12 hours. Amazing! God is still caring for my little peanut and watching over our family. Hope to have some culture results tomorrow and home in a couple days!

From speed bump to brick wall

Its 2am and I should be sleeping, but I can't. I have just settled into my lovely room on the pediatric floor of St Vs hospital-yes in Billings, not Denver. My poor little Sam is sleeping contently (after hours of crying from being poked and prodded) in the PICU. Let's back track a bit shall we...

Today was going well-I was very productive getting things ready for us to hit the road to Denver. We were on task to get a good nights sleep and head out after dropping Charlee off at school. Sam had been doing great-happy and alert. Smiling and cooing as she does all the time now. She did have that little cough-about 2-3 dry coughs every hour or so, but she appeared unaffected by them. I fed her at 6:30pm and she was up and alert for an hour or so, then fell asleep. When I went to wake her up for her final feeding before tucking her in for the night, I noticed her color was not good. She looked cyanotic (blue) and when I picked her up she was very warm. I took her temp and sure enough she had a fever-101.2. I offered her the bottle and she wasn't interested in eating at all. In fact it caused her to cough and now the cough was very moist and didn't sound good at all. Shortly after that she coughed a couple times, gagged and spit up a good amount of frothy bloody liquid. If I never have to witness/experience that again, it will be too soon.

Needless to say, we shoved our sleeping kids in the car, packed Sam in her seat and headed for the ER. I was a bit of a mess by now-all I could think about was that the cardiologist said this was the exact scenario we were trying to avoid by getting her heart surgery done before cold/flu season. She can't be on oxygen or it can push her into congestive heart failure. This is not good when you have respiratory disease/pneumonia. I know enough to know that her poor color and the fluid noise in her cough, she had serious airway issues-let alone the stress on her heart. For the first time since she came into this world I was terrified that we might lose her. We dropped the older kids at Grandma Kathys house and kept going. Our usual team of support met us there-my parents, my brother, and Theriaults. They are the people we wake up when things hit the fan. We spent very little time in the ER as they wanted us up in ICU asap. Once up here (4th floor-pediatrics), the poor baby got picked on a lot. IV catheter, blood draw, urinary catheter. And just as a side note, despite not being well, she is one strong little goober. She was hard to contain-think alligator role. At least her color was looking much better at this point and she didn't cough up any more blood. After all that I looked over the doctors shoulder as he evaluated the chest xrays. I knew what he was going to say-yep pneumonia within about 60-70% of her right lung field. we have to get through this ordeal before we can get back to fixing her heart. Of course for now all we need to focus on is getting her through this. If she doesn't maintain her status she is at now, which is acceptable, they will have to intubate and put her on the ventilator. I am really praying that doesn't need to happen. The doctor sent out blood work to determine if its viral vs bacterial-this will take a couple days. He expects she will be in the ICU at least 2-3 days but likely longer. So if you need to find me-I will be here.

I find it interesting...this morning when they bumped her surgery to Friday, I figured it was God's way of giving her one more day to clear up the dry cold cough. But now I see that it was all about us not leaving town last night. If we had started down the road-this would have all taken place about Sheridan. That is not where we would have wanted to be when an ICU was needed. I still wonder why God didn't just take the cough away or heal her heart defects, but His will is perfect and His ways are not our ways, so I just have to trust Him. My fear has subsided but concern still remains. I don't like set backs and changes in plans especially when the health of my baby is on the line. I have to pray for faith and trust-that God is still in control even when I have none in the situation. Sam will still need open heart surgery in the near future, but the specifics are now up in the air. I'm just focusing on getting her through this and then we will take the next step.

Thanks to all our friends, family and acquaintences for your prayers and support. We will continue to need it. Please continue to pray for our little Samantha-that she recovers from the pneumonia quickly and without complication. And pray for us, that we don't stop trusting our God! After all, He did create her and she is His child. We know she is in His hands and He has a plan in all this. Good night for now. I will keep you all posted.

Tuesday, October 18, 2011

Speed bump!

Woke up this morning running! I have a list very long of things to get accomplished before leaving tonight. First stop-take Charlee to school. Second stop-take the dog to be boarded. Doing good so far. On my way back home I got a call from the Children's Hospital. They explained that there was a baby born yesterday that needs emergency heart surgery and they were wondering if they could have Sam's spot on Thursday. They could reschedule her for Friday. One day is not so bad. Besides then we can drive during the day and we still have plenty of time. The other minor detail is that Sam started with a cough yesterday-not good! She is happy and bright, but if that cough is not gone in the next 24-48 hours they won't do surgery. That makes Friday better as it's one more day for her to get rid of it! So that's our new plan of attack. Keep praying for her that her cold symptoms miraculously disappear in time for her to have surgery Friday! If anything major changes, I'll let everyone know.

Monday, October 17, 2011

Getting Started

Hello everyone! This is my first attempt at keeping a blog, but I figured it would be an easy way to track Sam's journey. We are leaving for Denver tomorrow night after Dana gets off work. We will be driving at night to allow for the fewest stops since Sam won't need to eat. She is after all sleeping 8-9 hours every night-not bad for 9 weeks! We have appointments most of the day Wednesday and surgery on Thursday. I am busy getting ready for everything: kids packed, us packed, house clean and ready for carpets to be cleaned while we are gone, lining out family and friends who are watching our house and kiddos here. So with that in mind, not going to write much today-just getting the process started. :)