13 April 2010

We're Still Here

Sorry for the delay in posting. Not a whole lot has happened since my last post. Nathan is still in the hospital. I kept thinking we were going to be able to take him home but it looks like now we will probably be here another week. :( They are transitioning him to a blood thinner that he can take orally as opposed to the IV drip that he is on. While they do that, they need to wean him off of the drip and check his blood everyday. They don't want his blood to be too thin and risk bleeding or too thick and risk clotting. Apparently, this takes a while. Well, for Nathan it is taking a while.

Nathan no longer has the chest tube in. It didn't come out the conventional way though (which would be for a doctor to take it out). No, as is typical fashion with Nathan, nothing is typical. He ended up rolling around while sleeping and it CAME OUT! I was sleeping too (it was about 3:00AM) and the nurse apparently heard the "drainage box" (don't know the official term) bubbling when she came in. They use water pressure to drain the fluid and if the water is bubbling, there is air which means something was disconnected. Well, something was disconnected - the tube was disconnected from the chest! So, they had to pull it out the rest of the way and put a lot of pressure on the opening to stop the bleeding. Normally, they would have stopped his blood thinner before taking it out so they were concerned with potential bleeding. Everything ended up being fine, thankfully.

Nathan is doing well otherwise. He is getting out of his crib everyday now and walking and playing. His leg muscles are somewhat weak from being in bed so much so we have to hold on to him while he is walking around. It's still cumbersome because he is still attached to an IV and some other monitors but we are making it work. This is good for his lungs, especially. Friday and over the weekend he had some fluid in his lungs and since he wasn't walking much, it was just settling there (as opposed to coughing it up). So, they had people from respiratory come in and pound on his back and chest. Lets just say that Nathan didn't like that at all. I don't blame him either. They were doing it every 4 hours and I was actually really upset that they had to wake him to do this. He would just scream and scream. It doesn't actually hurt but who knows what he was thinking or what defenseless position he felt himself in. So, Richard and I were extra diligent about getting him up and moving so that they would stop it. Eventually though, Richard told them they had to do something else because he's not a typical child. He's had a rough start at life and we're not sure what his first 14 months involved before he resided at New Day (where he was WELL care for). Soon after, they stopped it and we were all very happy.

We are on day 32 of being in the hospital. It is HARD. And at many times feels like we will never leave. It's hard to not be at home together, not having home-cooked meals, not being able to clean the house, not being on a schedule, not being able to enjoy the nice weather we've had, being in one room most of the time and so much more. I know it sounds like I'm complaining but it's all the little things you take for granted that you end up longing for when you can't have them. On the flip side though, there have been many blessings that have come out of having to be in the hospital. By God's grace, we have all had our health and until you spend any length of time in the hospital, you don't really know what goes on inside the walls you so often just drive by. People are really hurting. One boy, who thankfully has been able to go home, scarcely had a visitor, even from his parents for the week or two that he was here. There's a little baby next door who is about 8 months old and has been here nearly her whole life. Parents crying in the hall in the wee hours of the morning while doctor's try to help their child behind closed doors. Richard and I are blessed to know what goes on inside hospital walls because now we know how to respond in the future when someone we know has to do this. We know that a visit from a loved one is a breath of fresh air. We know that the company who donates ice cream makes life here seem a little more normal. Little things make a huge difference.

Besides just knowing how to respond when we hear of people in the hospital, there are other blessings as well. We have met some amazing people here. Some of our nurses have made this experience a lot less difficult - even enjoyable at times. They have touched our lives and are people we won't soon forget. Nurse Sylvia we've had only once (the day Nathan had his brain abscess drained back in February) but she is one of our favorites. She comes by and checks in on us all the time and makes us laugh. She is so great with both Nathan and Isabel. Nurse Courtney is lots of fun too and has been a great source of information. She has also been a comfort when things seemed very overwhelming. She was the one who took Nathan out on the deck before his heart surgery going above and beyond to make things nicer for him. She also gave me a precious token of inspiration that someone gave her many years ago and I was surprised and deeply touched. We love Courtney and we are excited when we find out she has Nathan for the day. Isabel has even said that she was her friend. :) There is also another Nurse, Scott, who first thought of putting Nathan in the wagon. There are several more whom we adore (Eloisa, Liz and Laurie just off the top of my head) but I won't continue on and on. It makes things better (much better) to be surrounded by such great people. Oh, and one of the doctor's here printed out lyrics from a song by Phil Wickham and gave it to me one night. It is about being safe in His arms and the One who holds the world also holds your heart. She said it reminded her of Nathan. I LOVED that she did that. Another blessing.

God has blessed us for this journey as well, too many to count but here are a few:

-Richard works from home so he is able to work from the hospital too. I can't even imagine how difficult this would have been if he had to go out to work. His company has been great too about Richard working a few irregular hours.

-We can bring Isabel to the hospital all day with us. Up until one week before Nathan was admitted in January, siblings under 18 were banned due to H1*N1.

-Nearly all of the "major" things that happened to Nathan happened in the hospital (seizures, dangerously low oxygen levels (turning completely blue), internal bleeding). I cannot stress enough how blessed we were to have immediate care for Nathan as these things happened. It's a miracle that I am very thankful for.

-None of us have gotten sick while Nathan has been hospitalized. If you're sick, you can't be in the room with the patient. Thank You, God!

So, even though this is hard and I was discouraged to learn we would not be going home soon (very discouraged - just ask Richard) it isn't all bad. God is in control and I'm so thankful that He has us in a place where we are surrounded by such great people and that they are taking good care of Nathan. I'm still looking forward to going home though. :) Hopefully, soon.


ChuckBone99 said...

I'm still praying for your family everyday! as are the other guys in Richard's Mens Group! You've been through so much, and our God is full of grace, mercy, who strengthens us and gives us peace. He has a plan, and His plan is for good for those who love Him and are called according to His purpose!! You and Richard are great examples of how to walk through seasons of life by faith and not by sight.

Alycia said...

Dear Kelly,

Thank you for your update! We were wondering what was happening with Nathan. SO glad to hear that he is doing well! We will pray that his blood gets to "just the right thickness" so you all can go home.
We will continue to pray for your family.
(Adahlyn's Mama)

 Kelly said...

Thanks Chuck! Your comments are very thoughtful and we appreciate them so much! More importantly, thanks for praying! They are sustaining us!

Alycia, thanks for your praying as well and for your encouraging words. I wanted to let you know that when we picked up Nathan from New Day, we spent some time in his preschool class. I got to see a lot of the kids and absolutely loved Adahylyn! She is such a SWEET girl. She was really into the music and dancing. You are adding a precious gem to your family! Congrats!

Alycia said...

Thank you Kelly!

I'd love to have you read our blog... it is private though, and i will have to send you an email. If you send me your email, i'll gladly add you, and you can follow our journey! :)
my email is