Improving Fast

Tony is improving fast at the hospital. His CMV numbers are going down. The infectious disease doctor said he has seen numbers in the hundred of thousands. Tony's are about 564, so that is really good. The symptoms of the C. diff are also subsiding now that they have him on the stronger medicine. They are just trying to get his nausea under control so that he can keep more food down. They are considering sending him home tomorrow and just having a nurse come to our house daily to give him the anti-viral for the CMV. We are hopeful!

There and Back Again...

We received a call Monday night around 7 from one of Tony's doctors. He informed us that Tony's bronchoscopy had come back positive for CMV pneumonia and that we would need to go to the hospital immediately for treatment. Unfortunately, the oncology floor had no available rooms, so the doctor told us to go to the Emergency Room and they would find us a room. We went to the ER and I was very uncomfortable because there were a ton of people and I knew Tony's chances of getting yet one more illness was increased. Tony wore a mask while we waited to get called back. When we finally got called back, then insisted on doing all of the tests that Tony already has had done...several times. He had to get an xray and an EKG, and blood tests. It was frustrating because we already knew what was wrong and what he needed as treatment. A room up in the oncology unit finally opened up around 1 in the morning. We got him all settled and he finally got the medication he needed. A special thanks goes out to the Glenn's who so wonderfully stayed at our apartment and watched Jack (he was sleeping) until I was able to come home at 1:30. 

On a positive note, the new oncology floor is finished so Tony is in a brand new room. It is super nice!

CMV is something that a huge percent of the US population already has. Our bodies just fight it off. But because Tony's immune system is down, his body is not able to fight it off. They medicine they give him only stops it from getting worse. They don't have anything to get rid of it completely. That is why it was so important we got him to the hospital to begin the treatment. (I have to remember that when I feel frustrated about the long night in the ER. Tony needs sleep to get better too). So the medicine will stop it from getting worse as his body slowly tries to fight the virus. 

He has had a score of doctors coming in and out of his room. He has a doctor assigned to him from the ER. He has his regular oncology doctors, and he has an Infectious Diseases doctor. This morning he had several "almost" doctors come in and "practice" on him, but he was really tired and didn't want to answer the same questions over and over and over, so hopefully that won't happen again. 

We are not sure when Tony will be able to come home again. (the ER doctor says one thing and the oncology doctor is saying something else). But we are really hoping that they can get him feeling better. He is pretty miserable with all the symptoms from both the CMV pneumonia and the C. Difficile (which effects his digestive tract. It is what is causing all of his nausea as well). 

To end this update, I would just like to ask for everyone to pray for Tony. This has been such a long road of feeling sick, and he needs the extra strength you all can give him. Thank you always for all of your love and support. 

A Superhero's Breakfast

Tony has been so tough through this whole thing and I thought he deserved a superhero breakfast this morning. Tony.....you are Superman!

And Jack couldn't decided between his push toys this morning, so he decided to push both.

The Bronchoscopy

So...this has been quite the thing. We were originally told that the procedure was yesterday. So, we showed up at the hospital after rescheduling our whole day and getting a babysitter for Jack. Then the hospital told us that we had the day wrong. We were not exactly thrilled about that and found out it had been a miscommunication between the doctor's office and the hospital. But alas, we carry on. Luckily, Autumn is awesome and came back to watch Jack today. We got to the hospital at 10:30. They checked us in and then we waited (normal hospital procedure. Haha ). They brought us back and started filling Tony's info into the computer and making him sign all the documents. They explained what they would be doing and ok'd the sedation. (They took him to what they call "The Twilight Zone". Haha. He was not fully out, but still pretty out of it).  

They started by making him breathe through this thing. It numbing stuff for his throat. (He had to not eat or drink anything for 12 hours before, so by this point his throat felt pretty dry, and this did not help). 

After that they put this stuff up his nose that then drained down the back of his throat. It was a more powerful numbing solvent that tasted AWFUL! Tony almost threw up (but he didn't really have anything in his tummy TO throw up). Then they asked me to wait out in the lobby while they did the procedure. This was the doctor's notes on the procedure:

The bronchoscope was passed through the oral cavity; it was extended to the pharynx, larynx, trachea, right bronchial tree, and left bronchial tree. The views were excellent. The patient's tolerance of the procedure was good.

Usually they go through the nasal cavity, but the opening wasn't quite big enough. The tube that they stick down his throat is a little bit bigger than a pen. They went between the vocal chords and into both sides of the lung. They found some "secretions" in both lungs and suctioned them out (to be tested). They also sprayed some saline solution and sucked it out. Then they took a little brush and to another little sample in his lungs. Luckily, they did not have to cut out a piece of his lung, so it wasn't a full biopsy. They had enough stuff just from the secretions to determine what is causing the pneumonia. Once they started the actual procedure it only took 26 minutes.  

When I was able to come back into the room, Tony was still pretty out of it. The thing around his head is actually his oxygen level tester. His hands were too cold, so the machine wasn't getting an accurate reading. They had to give him oxygen through his nose because he was partially sedated and not breathing deeply enough on his own. They also had him hooked to a heart monitor. After the procedure was over his heart did a weird beat. The machine starting freaking out and then printed the abnormality.  The doctor was worried that it would happen again, so they decided to keep him for a while and call down a cardiologist. They did an EKG and a blood test. Luckily, everything came back normal so they let us take him home. (They were considering keeping him overnight). He also was still not getting enough oxygen on his own, so they had to slowly taper off the oxygen until he was awake enough to remember to breathe deeply. So, they let us go and we got home just before 3. Tony then napped for most of the day (after drinking quite a bit of water). He wasn't allowed to eat or drink anything until 2 hours after the procedure, which was actually before we even got home. 

We will have results from the test in 3 to 14 days. 

And these are the pictures of his lungs. They look kind of gross. If you are easily grossed out, then don't scroll down. 

The picture above is of his vocal chords and going into his trachea. The vocal chords are the white strips on either side. (You can see the one on the left clearly).

This is in his trachea and showing the right and left bronchial trees. (The right and left lung).

This is in his right lung. You can see how many times it branches. The branches get smaller and smaller and smaller. It is actually really cool. I have never seen in a lung like this before. 

Again, sorry if that grossed anyone out.

In other news, we got word back from a different test they did last week. It came back positive for c. difficile. It is a bacterium that effects the digestive tract. It is the reason why he has been so nauseous and has no appetite. You are most likely to get this if you are in the hospital for a long period of time, have a weakened immune system, or are on antibiotics for a long period of time. So.....check, check and check. But now that we know he has it, they prescribed him a medicine to treat it, and hopefully get rid of it. It happens because the natural bacteria that usually fight this sort of bacterium in his body are gone due to all the antibiotics he has had to take for....pretty much everything. 

My Little Man

                          We woke up to snow on the ground yesterday. Jack loves to stand at the window and watch it fall. (He bangs on the window panes).

Two days ago I let Jack feed himself completely by himself. He usually eats the finger foods on his own, but I control everything that involves a spoon. But it was almost bath time, so I stripped him down to a diaper and gave him all the control. He picked up on it really quick. There was definitely still a mess, but his bib caught all of it. (Thanks for the awesome bib Channa). He would dip the spoon, and then stick it in his mouth. (He always got too much on the spoon, which is why half of it ended up down his bib.

One of Jack's favorite things is to be dropped onto the bean bag. And we think it's hilarious because his hair gets super static-y. His is pretty good at getting himself off the bean bag too. He did a pretty great summersault yesterday. Definitely an acrobat. 

And this is Jack's new favorite way to use his pink push toy. I was quite impressed he figured it out all on his own. Close enough, I guess. Haha. What a kid!

Not Done Yet

Tony had a CT scan yesterday to check on the pneumonia. They said it looks better in some places, but worse in others. So, tomorrow they will be doing a biopsy of his lungs to figure out exactly what is going on and so that they know exactly how to fix it. The biopsy is called a Bronchoscopy and is a 2 hour procedure where they insert a small tube through his nose and go into his lung and retrieve a small piece of his lung. Then they will be able to tell what exactly is going on. If it is a fungus, they will know exactly what kind of fungus it is and be able to treat it better. We are certainly not excited about the procedure, but we are excited that he will hopefully begin to get better. He is sick of coughing. Mostly, he is just sick of being sick. It is no fun, and it has been a long road for him. 

Jack has been a trooper and has adjusted his schedule to fit around doctors appointments and everything else. He is such a great kid. Also, he can now walk with me only holding onto one of his hands. So I think he is less than a week from walking on his own. Let the craziness begin. 

Pneumonia Update

Tony is starting to feel a little bit better. The antibiotics seem to be working. He has to go to the doctor's office every day to get the antibiotics through an IV. That way they know exactly how much he is getting. (They don't want him to throw up a pill and then not now if he got it or not). He definitely still has a cough, but he can tell that it is beginning to clear up. So we are grateful for that. Keep him in your prayers. Thank you!