Tuesday, October 2, 2007

Dealing with his Lungs

Constant Reader: First things, first. I am very sorry for the delay between posts. As you know, Shane came to visit for our anniversary (5 years!!) and then my parents and sisters came to visit. Then add in my 20 hour work week and the new 30 minute commute to get to the new Childrens Hospital... and well you get the picture. Now on to the good stuff...

Today Noah had an appointment with the Respiratory group (aka Pulmonary Clinic). It was interesting to say the least.

His appointment was at 4pm. So I left about 3:15 and got there around 3:45. I was put into a room about 4 and waited for an entire hour before anyone even bothered to come by. Now, they didn't forget about me. The door was open and people kept walking by... good thing I had my iPod Touch with me. I watched Wild Hogs so I really wasn't very annoyed. Then one of the staff comes in and does an O2 sat test. What that means, is we checked his oxygen saturation on his current level. Then we turn it off and then we see what it needs to be at to be 100%.

Since I always like to know details... those of you who are interested in knowing the details, please continue. If the numbers make no difference to you, go a ahead a skip to the next paragraph: Noah was sent home from the hospital this past time on 1/2 a liter. After a while we went down to a 1/4. He did well on that so a few weeks ago we tried an 1/8th. But I noticed after about an hour or if he ate that he looked sick and sweaty and his color was off. So I put him back on a 4th. This past week he's been sitting around 95-97% saturation on a 1/4 at the clinic visits but when we went to the appointment today he was 100. So we turned it off. He dropped to 88. We went back on a 1/4 and he went up to about 90 and that was about it. So we turned it up to 1/2 and he went up to 98. When we turned it back down to 1/4 he started to drop again. So basically what that tells us is he needs to be on 1/4 but if he goes without for a while then he needs the 1/2 to stabilize then he can have 1/4. I mention all this detail because it's funny. This is exactly what I have been doing for him. For example: I unhook him for his bath and afterward, I put him on a 1/2 for about 1/2 an hour and then back down to 1/4. It just seems he does better this way. So to actually see the numbers prove that I've been assessing his needs correctly made me feel good. (maybe I can actually do this!!!)

Anyways, after the sat test, I was told the Dr wanted him to get an X-Ray so I needed to go down to Radiology. Now, I still haven't even seen the Dr and it's about 5:30. So I head down, get the X-Ray and go back up to our room. The place is deserted except for the cleaning crew who are going room to room. The nurse then comes in and takes a history and the Dr finally shows up. It's now 2 hours past our appointment time and I am finally meeting her. (She is wonderful by the way).

What we decided was that Noah might have a few things going on. First of all, he has 2 areas (one in each lung) that are "wet" or filled with fluid and not oxygenating his blood. One of these areas has been around a long time but isn't healing. The other is a new development. This might be caused by aspirating (or breathing in) fluid when he tries to eat. He still isn't doing so well on the oral feeds and this could totally be a possibility. I also know he really chokes when he gets meds by mouth so that could be it also. So we are going to do a swallow study and see what that shows. There is also the possibility that a nerve near his vocal cords was damaged during transplant. This can cause swelling and aspirating etc. When they took pictures of his lungs with a camera down his throat (broncing) they didn't see this area because they went down his vent tubing. So depending on what the swallow study shows we may have to do this again without a vent tube. But the overall consensus was that we will probably need to back off on the oral feeding until we can get his lungs healed.

Think of it this way... Winter Viruses can be deadly for babies with healthy lungs.... Now imagine a baby with sick lungs getting these viruses or even just getting sick... Not a good picture. So Noah does qualify for the RSV shot (which I just happened to ask for yesterday) so he will be getting that. And now there is a possibility that he will need a G tube instead of an NG tube (goes directly into his stomach instead of up his nose and down his throat) since we need to back off on the oral and because the tube can irritate his throat causing more swelling. We also just need time. Because his new heart was bigger than what a heart his size should have been, it is also putting pressure on his air way and we just have to wait for him to grow into that.

So, as of right now, it doesn't seem that he will be getting off the O2 anytime soon. But at least we will have a better plan of attack and at least have a plan before we come home so we don't have to start all over. I was also told that all the Respiratory Dr's at Primary's came from Denver Childrens so she knows them all and they are great. So that's good.

Other than that.... we are just plugging along. Waiting for October to end so we can be home. Noah really is doing good. He has his struggles still. But I couldn't be happier. I can deal with a slow recovery because at least I have my baby here to recover. I have no doubts that he will heal completely and get over all this stuff. It's just going to take some time.

But for those of you who are reading this from Utah (aka Family, Friends, etc) With Noah being immune suppressed AND having sick lungs.... our protection from germs needs to be even more diligent. While we have missed you all so very much and we absolutely can NOT wait to see you, please keep Noah's Health in mind. We respectfully ask that you post-pone your visit if you are sick, think you are getting sick, or have recently been around anyone who is sick (even if the cold seems minor). And then when you come to the house, please make sure that washing your hands is the first thing you do. Hand Sanitizer is now our best friend and a requirement to hold Noah. I hope no one is offended by these "rules" but they were given to us by his Dr's. And since even a small cold could lead to devastating events, we have to keep Noah's best interests in mind. I am sure you all understand. I plan on doing my absolute best at keeping Noah at home for the entire winter so if we aren't able to come to an event, please forgive me. He has been through so much that I just can't imagine him having to be sick or hospitalized again....

The count down to coming home begins.... 23 days to go.

Much Love,


  1. Crystal,
    I'm so happy to finally see an update!! As you know, I'm a total junkie when it comes to reading your blog as well as all the blogs you have linked to yours. I'll become part of the blogging world soon, YAY! I'm glad to see a plan of attack for Noah and also to hear that you'll have excellent dr's here in Utah as well. As for the g-tube, all I can say is my friends that had to have their daughter get one said that even though it was more invasive, they prefer this one so much more than the tube down through the nose and throat etc. She also said if you ever have any questions to feel free to email her. (so let me know :) As for you needing to be very cautious with little Noah once you return to Utah, I hope EVERYONE completely understands that and that no one gets offended. I can't see why anyone would. You gotta do what's best for your little miracle and we need to honor those requests and be very mindful of our health and also what we've been exposed to. Ok-there's my novel. Can you tell I'm totally bored not having you around? Love, Jen

  2. To day is day 22 for me. 22 is a great number! Not as great as 2 will be, but I will take 22 for today. Dad and I miss you all.
    Love Mom and Dad

  3. I love our G-Tube and wouldn't change a thing about it. Kayden had his tranpslant right in the middle of cold and flu season and he was banned from public functions all winter long. It was a long haul but so worth it. From now on we are all required to get a flu shot! No flu mist since it is the live virus so we all have to get a shot! yucky! good luck! and you will find that the g-tube is so much easier.

  4. Hi Crystal,
    You have published a fantastic blog for all to see what wonderful progress your family has made! I love your blog! Thanks for keeping us all updated, and informed. We pray for you, and if there is anyting you need, please call us! or email.
    Liz & Dan Merrill

  5. Remember 2 years ago... we didn't go anywhere. It was horrible to not have people visit. It was hard when we would go to sunday dinner and have people be sick. We missed a lot. It just becomes a part of life.... Make sure you have check with your insurance company about synagis. Since it is so much mone they might tell you no they won't cover it. Even if you "qualify" they don't care. So you may have to petition them. We had to petition last year.

  6. Never, Never, Never justify telling people to wash their hands or not come over. I would post a sign on your door that kindly tells people to leave the germs outside. We can not risk little Noah getting ANYTHING. So...never feel guilty...you are the mom...period. I am so glad that your end is near. How exciting to sleep in your own bed, and Noah and Lilly in theirs!

  7. Oh, Crys. Thanks for popping over to my blog so I could see your marvelous story.

    I'm sorry you're experiencing Colorado for this reason. I hope you're feeling very welcome and taken care of here.

    My healing thoughts for Noah. I hope his progress continues at light speed.



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