27 April 2010

Walking and Talking

Thankfully, we are still home. AND we are still LOVING it of course. :)

In the past week Nathan has had appointments with both his cardiologist and neurologist. His heart is doing great. The doc even said it sounded "really good." Yay. That appointment was Friday. Today we saw the neurologist. On Thursday evening we noticed that Nathan wasn't walking as well as he had been. We've since discovered that he is walking on his heels and not using his toes. I had him tip toe to see if he could use his toes and he was able to do that. His neurologist said it could be medication-related since he was put on a new one the day he was discharged. If it gets worse, he will have to be admitted so he can get an MRI done. He was scheduled for one on Monday the 3rd but the doc wanted to see if I could move it up and I was able to do so. He will have it this Friday. Hopefully, nothing new is going on. Also, we are praying that his abscess continues to shrink! I am believing that it is.

We also have to set up appointments to have him evaluated by Physical and Occupational Therapy.

Given that, Nathan is doing well. He is trying to talk a lot more now. He is stringing words together which is go great. He still needs help with pronunciation so he will probably need a speech therapist but we're enjoying his attempts to communicate. I asked the neurologist about his speech and she said it's probably a combination of his strokes and brain abscess. Tonight he even tried to say his own prayer before going to bed. It was cute.

On an unrelated note, we got Nathan a bike helmet yesterday. He will need one for when we take him and Isabel in our bike trailer. He LOVES it. He wore it most of the day and took it off to go to bed. He doesn't even know what it's for (I don't think) but is content to wear it around the house because Isabel also has one that she wears. We're hoping we can go for a ride before the week is up. I can't wait to see how he likes being in the trailer. He also likes riding a little tricycle we have. He just puts his feet on the pedals but doesn't pedal. He also doesn't steer well but just takes in the sights. Thankfully, the bike has a handle where an adult can push from behind. This works out WELL. Hopefully, I can get a few pics soon.

Well, that's it for now. I will update once we have the results of the MRI - probably on Tuesday.

Take care.

19 April 2010

We're Home!!

Nathan was discharged on Friday! We made it home around 4:00PM. Since then, we have been busy filling prescriptions and figuring out his medicine as well as getting the house in order. His home care nurse came by Friday night and went through everything with us which I was thankful for.

On Saturday Nathan pulled off part of the dressing for his central line while he was supposed to be going to sleep. He scratched off a whole the size of a quarter that just so happened to expose the insertion site! This was after 9:00PM and we had to have a nurse come out and change it. When she left, she gave us a nylon sleeve to pull up over his tummy to deter him from grabbing at it. He's also inherited a pair of socks over his hands and arms and a good wrap in a blanket when he goes to bed. We want to ensure that he doesn't do anything to land himself back in the hospital prematurely. Thankfully, the dressing was the only thing that he pulled off.

We are definitely enjoying being at home! It's so great to spend time together here, to sleep in our own bed and do all the things that we normally take for granted.

Nathan has another MRI on May 3. The following day we will have appointments with infectious disease and the neurosurgeon. We are praying that the abscess continues to shrink. If it continues to shrink at the current rate, I estimate that the abscess should be gone by July. We've decided that we are somehow going to celebrate when the abscess is gone and he is off his IV antibiotics. What a joyous day that will be! We are trusting that God will hasten his healing and that he will need no additional surgeries before his next heart surgery which will probably be sometime towards the end of the year.

Thanks again for all your support and prayers. I hope that the next couple weeks are uneventful in terms of Nathan's health and that I have GREAT news to report after his next MRI.

15 April 2010

An End In Sight?

It's possible that Nathan could be discharged tomorrow! We are being cautiously optimistic but I can't help but be excited about the prospect. Tomorrow Nathan would have been in the hospital 5 weeks. It's been a long road. I met a mom here yesterday and I was trying to explain some of the things that Nathan's gone through over the past couple months and when you try to summarize it, it sounds completely overwhelming. You just list one health issue after another and it freaks me out that he has gone through so much. He's had seizures, a brain abscess that led to emergency brain surgery, pulling out his PICC line, a stroke, heart surgery and internal bleeding (among countless other less serious issues). And, after all of that he still seems like a normal kid. We are so thankful that he has no neurological issues from his abscess or stroke. He's just doing amazingly well all things considered. I actually don't think he could be doing better given the circumstances.

I will let everyone know once we are finally home. Please know how much we appreciate every prayer said on Nathan's and our behalf. Thanks for taking the time to lift us up in prayer. We could never have done this, and kept our sanity, if not for our faith in Jesus and for the prayers of all of you that brought us peace in very stressful situations.

To God be the glory.

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.

06 April 2010


If you read my previous post, you will know that I was pretty discouraged last night. After I had finished my post, one of the nurses came in and told me that they planned on keeping Nathan's breathing tube in because the abscess hadn't shrunk and they were going to see if the neurosurgeon would want to do the surgery today (again, this wasn't the official reading). From their perspective, it didn't make sense to take it out if he was going to have surgery because they would just have to put it back in. I was so sad. I just cried because I really hoped that Nathan wouldn't need this surgery again.

I went to sleep pretty late and every time I woke up I couldn't go back to sleep right away. I just begged God that the doctor's were wrong and Nathan wouldn't need this surgery. When the neurosurgeon came in this morning, he told me that the abscess went down and therefore he wasn't going to do anything!! He said Nathan should have another MRI in a month. I was in utter shock and almost started crying right then. I initially thought it couldn't have gone down that much because two separate doctors told me that the abscess hadn't shrunk. Well, it went down 7mm!!! The abscess went from 3.9cm to 3.2! I am lifting up praises to our God because I KNOW in my heart that God answered the prayers of everyone who has been praying for Nathan. I called Richard this morning and was crying because he didn't know any of this. I didn't call him last night because he was already alseep. I figured I would call him once a decision was made on whether Nathan would have surgery (the neurosurgeon gets in very early). One of the doctor's even let me see the MRI photo's. One from the last MRI and one from this MRI and I could tell that it was smaller and as one nurse put it, I don't even have a trained eye!

So, I have a different perspective today. I am in awe of the goodness our God has bestowed on Nathan and all of us actually. And so very, very thankful.

Nathan is still recovering from the chest tube insertion. He still has it in and it is draining. They are keeping him off his blood thinner until it stops. I am not sure when we might go home but we are over the biggest hurdles right now. It might be possible we could go home by the weekend. We will see. :)

Thanks so much for your prayers.

05 April 2010

Two Steps Forward, One Step Back

Well, Nathan was doing really well after his surgery. On Thursday, they took his breathing tube out and on Friday they took his chest tube out. The chest tube was in to drain blood/fluid caused by the surgery. Nathan's oxygen levels were in the mid 70's and even in the 80's while sleeping. He had pink lips and tongue, pink nails and fingertips. It was so great seeing him like that.

We also had a great Easter where he got to go for a ride in the wagon (he LOVES the wagon). He sat on the sofa in our room for several hours and we played some games and read some books. His cardiologist was even talking about him being able to go home soon (providing that the MRI would show the abscess shrinking). We were all really excited. Even the nurses were all coming in to see how great he was doing. We even got Nathan to walk some (with help). Our nurse encouraged him to get up and stop sitting on his bum all the time. :) He protested at first and then realized he liked walking. :) It was all so special and unfortunately, not to last long.

Today, Nathan's oxygen levels went down. He also started bleeding out of the wound where the chest tube was. After a chest x-ray, they determined that he had fluid inside his chest, right around his left lung. So, they needed to put him back on the breathing tube and put the chest tube back in to drain the fluid (his oxygen levels went down because his left lung was under pressure because of the fluid). They were hoping that the fluid was blood and not lymph fluid and that actually turned out to be the case. After that procedure was done his oxygen levels went up.

The main reason for the fluid in his chest was due to the fact that he is on a blood thinner and asprin. His blood couldn't clot and help his body heal from the surgery. It is quite the balancing act to treat him to prevent clots (and thus another stroke) and still be able to heal. He is off his blood thinner right now and they are going to give him blood. He looked so pale today - no color in his lips or fingers, not even pink.

An hour after the chest tube was put in he went down for his MRI that was scheduled today. He actually just got back not too long ago. Two doctors came in and mentioned from what they could tell the abscess hasn't shrunk anymore. They are not the ones who will do the "official" reading so I'm hoping that maybe it's gone down just a little. The neurosurgeon mentioned to Richard that he wanted to see it go down by 5mm. That seems like a lot but we were praying for that. I don't know what they will say tomorrow but we've just conceded that Nathan might be here for another abscess drainage. We prayed and hoped that this wouldn't be the case and a part of me is still hoping Nathan can avoid this risky surgery.

Today was a hard day for me. I feel like as soon as Nathan starts to get better, something happens to set him back. It's hard to watch over and over again. Sorry to sound so discouraged. I will hopefully have a better perspective tomorrow.