Sunday, January 17, 2010

Update #21

Marcus had a couple of procedures this last week. He had a Barium Swallow Study on Thursday(1/14), and a Broncoscopy and a CT scan (of his lung area) on Friday (1/15). They went pretty well. We did get some information, and the lab results from the tests will be available by the end of next week.

We found out that Marcus has silent aspirations and is getting milk and formula and maybe medicine in his lungs. He doesn't cough or give any indication that he is doing it, so we had no idea.

So as a result, all of his food has to be at least "nectar thick" now. I am not supposed to nurse him anymore either (which makes me kind of sad). He also can't have any juice, or water or formula that is not thickened. He does fine with thicker foods - baby food, baby cereal, etc.. We are going to try to be strict about this for a while and see if this helps his lungs to get healthy. He is doing well. Thanks for your prayers for him. We appreciate them very much.

Sunday, October 18, 2009

Marcus Update #20

Hello again. Well... we had an unexpected hospital stay this last week. Here's the story... Marcus caught a cold from Aliyah on Monday and was handling it very well until Wednesday night, when he started breathing really fast and his heart rate was around 170 even at rest. So we called the nurse, and the pulmonologist, and ended up taking Marcus to the ER here in town at about 11 pm. They kept us for a few hours and did tests (flu, RSV, Pneumonia -chest x-ray, blood work) and everything came back negative. His white blood cell count was a little high though and he had a fever by this time. His breathing was still really fast, and his heart rate was also still fast. So at 2:30 am we climbed into an ambulance and took a ride to Phoenix Childrens Hospital.

We arrived at 4 am, and went through the same tests in their ER. Then Marcus was admitted to their PICU. They did their stuff and we got to sleep around 6:30 am. Not much sleep obviously. The pulmonologist saw Marcus a couple of times and I asked many questions. Anyways... we came home yesterday (Friday) evening, so weren't in very long at all. Here is an explanation of what is going on with Marcus's health right now...

The pulmonologist explained that he thinks that Marcus has scar tissue on his lung tissue, which is causing the blood to not be adequately oxygenated. he said this could be from having been born early, been on a ventilator, and having had pneumonia a few times. He said the tissue does regenerate, but he needs to stay healthy for a while. He also wants to have a CT scan done on Marcus's chest, and a swallow study done when he is healthy again. This cold he got seems to have turned into broncialitis this time. He is doing very well now. He is on quite a few more medications now to try to help his lungs.

So now I guess we need to be praying for Marcus's lung tissue to regenerate and be healthy. Please pray that he stays healthy through the winter. Thank you for your continued concern for and prayers for our son, Marcus. God bless you. Kim

Friday, October 9, 2009

Marcus update #19

Hi.. I wanted to let you all know how Marcus's heart cath. went on Monday and also explain to you the best I can what they found.

So.. the test itself went well with no complications. I was able to stay with him until he was asleep. It took about 3 1/2 hours. Marcus then was in the recovery room for another 3 hours.

They found that Marcus's heart is doing well and is not causing his oxygen need. A lot of head scratching and a lot of tests went on. "Nope that's not it, hmm what could it be? Let's try this test." What they think is causing the oxygen need, and the recent increase in his need, is his lungs. There seems to be a problem with the exchange between his capillaries and his lung tissue. Basically what I understand is that his blood is not being properly oxygenated on it's trip to his lungs.

What's next? We have an appointment with the pulmonologist on October 26th at Phoenix Childrens Hospital to discuss this further. The cardiologist group is going to discuss Marcus's condition at their meeting this month, and we will be following up with his cardiologist soon too (no appointment scheduled yet).

I will continue to keep you informed about what is going on with Marcus. I'll try to add more pictures next time. Marcus is doing well, getting stronger, and growing - he is almost 16 lbs now. He is fighting off colds better each time - he had one a few weeks ago, and it was really not a big deal this time. No breathing treatments, no pneumonia, no hospital.

Thanks for your prayers. We appreciate them very much.

Tuesday, September 15, 2009

Marcus Update #18

Well... Marcus has his heart catheterization scheduled for October 5th. This test is to try to determine why he still needs oxygen. They will have to put Marcus to sleep for this test. They will put the catheter into his femoral artery, and will pass it all the way up into and through his heart into his pulmonary artery. There they will check the pressure. This is about all I know about it. Marcus will need to be in the hospital overnight. The test will be done at Phoenix Childrens Hospital. We appreciate your continued prayers for Marcus. Thank you.

Monday, August 31, 2009

Marcus update #17

Hello again. Sorry it's been soo long again. Things have been kind of crazy this last month with Marcus. We've had a couple of echo's, some blood work, some chest x-rays, 2 trips to the ER, and one weekend stay in Phoenix Childrens Hospital.

There is still no word on why the pericardial effusion came back. It has gotten smaller, but Marcus is still on the lasik (medicine). We are also now dealing with another mystery, which was the reason for his recent hospitalization. He has an increased need for oxygen. We are mainly working with the cardiologist on both of these issues. We have not had the heart cath. yet, but when I spoke to the doctor on friday, he sounded like we would be moving forward with that soon. That may give us an answer to the oxygen question. I think that we were all hoping that the effusion would be resolved first, but that doesn't seem to be happening yet.

I know that this isn't much information, but I just wanted to let you know what was happening. Marcus is doing well otherwise. He is healthy and happy and growing just like he should be. He weighs about 14 pounds now. I will update again as soon as I get some more information. Thanks again for your prayers.

Friday, July 31, 2009

Marcus update #16

Hi. We had the echocardiogram that I mentioned in the last update today, and spoke to the cardiologist. They are pretty definite now that the VSD is closed. They are also pretty definite that the ASD will not close without surgery. There is not a rush on this and we will probably do it sometime next year - maybe in the spring. There is also some mitral valve thing(that's a medical term, I think :) ), that they are going to fix at the same time. This surgery involves opening up his chest and stopping his heart. They said that if it all goes well he would probably be in the hospital for about a week.

I have to admit that my heart kind of sinks when I think about this. I wish that my baby didn't have to go through all of this. And I guess I wish that I didn't have to either. I know that the Lord is using this child in many ways in my life, as well as in the lives of my husband and children, and even those of our friends and family.

The fluid around his heart is still there. The blood work showed normal thyroid function, so it is still a mystery, why the fluid returned. The doctor prescribed some medicines to try this week, and wants to see another echocardiogram next week. We will be able to have that done at the hospital here though this time. He will know by then if the medicine is helping or not.

The doctor also wants to do a heart cathetorization soon to check the internal pressure in the pulmonary artery and try to find out why Marcus still needs oxygen. This test involves incerting a probe thing(another medical term) in his femural artery (at the top of his leg) and making it go up through his heart into his pulmonary artery. He would obviously have to be asleep - anesthetized - for this procedure. He sounded like he wanted to do that soon - within the next few weeks. This would be done at Phoenix Childrens Hospital.

I think that's it.

Thanks for your prayers for Marcus. We greatly appreciate them. We also appreciate people letting us know that they are praying for Marcus. It is very encouraging. Please also let us know if there is ever anything that we can do for you, or anything that we can pray for for you.


God is great and prayer is powerful!

Thursday, July 23, 2009

Marcue update #15

Hi. It's really late but I really wanted to get this out so people could start praying for Marcus in force again.

The cardiologist found fluid around Marcus's heart again today (Pericardial Effusion). He had it when he was born and had to have a needle stuck in his chest after birth to have it removed so his heart could function. It was not there in March, but is there now. He is not sure why. He has ordered a repeat echocardiogram for the end of next week down at Phoenix Childrens Hospital, and there is a chance that they may have to try to remove the fluid again.

He has also ordered some lab work to try to find out what has caused the fluid to return. One thing he is checking is Marcus's thyroid. I tried to have the labs done today, but they couldn't get it. They tried for over an hour, 3 different people tried. They stuck him 3 times and got nothing. It was a long day.

And there was a bit of good news - Marcus's VSD(Ventrical Septal Defect - hole between the lower cambers of the heart) looks like it is totally closed. His ASD(Atrial Septal Defect - hole between the upper cambers of the heart) however is still really open. If this doesn't close soon Marcus will have to have open heart surgery to repair it. That is obviously something that I would rather not do if possible.

I will be at Phoenix Childrens Hospital with Marcus tomorrow afternoon at the appointments I told you about in the last update, so I hope to get the lab work done while there tomorrow. They have a lot more experience drawing blood from babies - I know it from experience. They are great!

I will update you when I know more. For now please pray for Marcus. This is pretty serious. He is otherwise very healthy right now, and very happy. He is about 12 3/4 lbs. and about 25 in. long now.

Thanks. Kim