check up with Dr. Mike

Jonathan had his follow up with Dr. Mike yesterday. His lungs sound great! He also has a double ear infection! The dr. said kids who get rsv have a 40% chance of getting an ear infection. Poor little guy! And, of course, he has not complained at all. My little trooper!

Goin' home!!!!!!!!!!!!!

The "modified barium swallow study" was a raging success. No problems that they could see! That means we are going home today!!!! I am just waiting for the nurse to come in and officially tell me we can go home and take the nasty feeding tube out of his nose. He is such a good baby and has been such a trooper while we have been in the hospital. Hats off to the wonderful staff at Phoenix Children's Hospital!! If your child ever needs a hospital stay, I would highly recommend going to PCH. They are FABULOUS.

barium swallow study

Another speed bump in Jonathan's recovery. Since yesterday's feeding at 1pm Jonathan has been drinking from a bottle. We were so excited that things would go well and he would be able to go home yesterday. The first bottle feeding went great--no problems. During the second bottle feeding he ate only one ounce then gagged and wouldn't eat any more. Blake had the night shift last night and said he ate between two and three ounces at each feeding but did some gagging while eating. So, Dr. Bode (pronounced Boe-dee--yes, Linda, just like your dog--and I made the mistake of saying to the Dr. when asking how to pronounce his name, "You mean like a dog's name?," thinking about Garfield's dog who is actually named Odie. I'm sure the dr. hates me now.) said we will need to do a barium swallow study to see if he is aspirating his formula. They have him swallow some barium and watch what it does. I guess they also feed him different consistencies of formula to see if thickening the formula helps him to not breathe it. I personally think that is what is going on. When Jonathan eats, he swallows so many times without taking a breath that when he finally takes a breath, I think he breathes the formula. So, it might be that he needs to relearn how to eat correctly again.

Dr. Bode just came in again and, after listening to my apology about saying he is named after a dog, told me his barium swallow study is scheduled for 11:45. He is due to eat at 10:30, so it's going to be a long hour an 15 minutes. Hopefully he'll just sleep until then. The Dr. said we'll be going home today (YIPPEE!!!!!!!!!!) unless he is aspirating a lot of formula, and he doesn't think that is what is happening. If he is aspirating a lot of formula, we'll be here another couple of days at least. But I am hopeful they will figure out what the problem is with this study and we'll be on our way home today! :)

more progress

The pediatrician was in this morning. He said that our goal this week is to get Jonathan home. Finally! Yesterday they took him off the continuous feed and put him on a bolus feed--1 oz every hour in the first 30 minutes of that hour. Now they are going to jump to 3 ounces every three hours and see how he does. After that we are going to try feeding with a bottle, and he said we could try some time today if he tolerates the bolus feeds with the NG tube. We are keeping our fingers crossed. I am thinking we will be home by Wednesday--maybe even tomorrow!!

I got a nice surprise this morning. When the pediatrician left I went over to make googly eyes at Jonathan, and he gave me the biggest smile! I looked up on the internet when little babies smile for the first time as a social reaction vs. a reflex and it said 6-8 weeks. I don't care--I'm counting it as his first real smile at his mommy. Now, if you asked Blake when he smiled for the first time, he would tell you Jonathan smiled at Blake when he was a week or two old. We'll let him think that . . :)

While Still on Oxygen

This was yesterday, when Jonathan was still on oxygen.

My little silkworm

off oxygen!

Jonathan is off oxygen!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Right now his saturation level is reading 94, and he is breathing his own air. That is great news! They took another x-ray today at about 11:30, so we will see what the results are. They also took another blood gas reading and it was even better than yesterday's. When I got to the hospital today he was awake and chillin' just like normal. Our next step is feeding. We are going to try and wean him off the feeding tube. I'm not sure when that will happen, and we can go home as soon as he is eating normally. We are excited! We owe this great blessing to the many prayers that have been offered in Jonathan's behalf. Thanks again to everyone!

more good news

The pediatrician was in this morning. He listened to Jonathan's chest and said he sounds better, that he doesn't sound as coarse. He said he would probably be weaned off the oxygen by tomorrow if we are lucky. He oxygen is at .2 liter and his saturation level is at 92/93 right now. That's not 98, 99 or 100 so we'll be keeping an eye on him today. He heart rate is normal and when the nurse listened to his breaths per minute this morning they were down to 28 instead of between 40 and 60 which is what they were at the height of his sickness. After he goes off oxygen, they will work toward a normal feed and get him off his 24-hour feeding schedule. He was still aspirating his formula a little bit when he was being fed every three hours, so they put him on a continuous feed. He doesn't cough or gag nearly as much now. The pediatrician said that if he shows tolerance as we up the volume of the feeds (3 oz every two hours on the NG tube, then 3 oz every three hours on the NG tube, then 3 oz by bottle every three hours) he won't have to do a barium study to see if he has reflux. We are hoping his gagging and coughing was due to congestion and not due to another problem--reflux. We will know for sure in a few days. As it looks right now, my prediction is that we will be home by Wednesday or Thursday. I can't wait! :)

"turned the corner"

Finally some good news! The nurse practitioner pulmonologist was in this morning to see Jonathan. She said she thinks he has "turned the corner" with this thing. Yippee! They turned his oxygen down from a 1.0 liter to .3 liter and his saturation levels are staying in the upper 90's. She also said his blood gas levels have greatly improved which indicates his exchange of oxygen and carbon dioxide is much better. She said that the blood gas reading is a better indication of progress than the x-ray. He still has yet to have his x-ray this morning, so I don't know the outcome of that yet. For the last 48 hours he has been on pulmicort and albuterol/xopanex (they switched from albuterol to xopanex), and the nurse practitioner said she thinks it's been long enough for us to see the results of the effects of the pulmicort--a reduction in the inflamation of the lungs. He seems to be doing so much better. He may have to go home on oxygen or with the feeding tube, neither of which I look forward to, but as long as he is getting better we are so grateful. Thanks again to EVERYONE who has been praying for us. I have really felt strength beyond my own this past week, and I know it is because of your prayers. We are thankful to those that have come to visit, have called or sent emails. A special thanks to my mother who has been tending Raegan all week, cleaning my house and doing my laundry. I love you, Mom!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! We couldn't have done this without your love and support.

Just a View of the Hospital Room

This is just a little view from Jonathan's room.
He was just chilling in his crib with his silky blankets.
All of the other kids in the hospital have to be jealous!!



They took out the IV but he still receives food through a feeding tube (the little yellow tube). The clear tubes in the video are for oxygen.

visitors

Some people have asked about visiting Jonathan/me. :) RSV is highly contagious, however it is not airborn. It is transmitted via saliva. The virus can live up to 48 hours on any surface. It manifests itself in adults as a common cold and is only dangerous for little children. If you wash your hands before and after your visit you should be fine (as long as you don't kiss Jonathan on the mouth :) If you would like to visit (and I would love the company--but don't worry--I am FINE), the hospital says you can come if you are over 12 and free from illness. Visiting hours are from 8 am to 8 pm. Call me for information for the hospital he's in and what room number. 480-223-2440.

feeding tube

Yesterday we visited with the pulmonologist. He advised us it would be best to put Jonathan on a feeding tube. He was aspirating his formula while eating, and it was ending up in a lobe of his right lung (which is the collapsed part). In order to better facilitate the healing of the lobe, they decided to place the tube. He eats 2.5 ounces every three hours and seems to be keeping it down pretty well. He will have an x-ray tomorrow morning to see if there have been any changes. We did see a partial good sign this morning when the nurse practitioner pulmonologist came in to do a screening--she did hear some air passing through the collapsed lobe. :) She said that hopefully by tomorrow we may see some change. They are also doing a daily blood gas read--he gets pricked in the foot--because he has had elevated carbon dioxide levels. I would imagine that is from breathing so shallowly and rapidly. Aside from that, he is resting somewhat comfortably. Keep those prayers coming!

Here he is with nurse Elyse "hangin out in his silkies" as Blake says. :)

Update

They took another x-ray this morning to see if the lobe in Jonathan's lung has re-expanded, and it did not re-expand. For the last 24 hours they suspected he did not have pnuemonia, but he does have viral pneumonia. The dr. told me yesterday he suspected that the lobe would re-expand by today. He words to me this morning were, "Well, I was wrong." The pulmonologist will be by to see him some time today. The attending dr. says he thinks they will tell us to stop feeding him formula. Apparently it is possible that when he drinks he is aspirating some and it is going into his lung. We'll see what the pulmonologist says. Poor Jonathan. The dr. said it is uncommon to have an entire lobe collapse. He still has very labored breathing and is still on the oxygen and iv. Although his progress is "slow," his coloring is good, he is eating on a regular basis (sad to say that may be a bad thing), and he is awake more. Right now he has developed a pretty good cough. That is a sign that the rsv is running its course. The dr. said he would have the cough for a good two weeks. He HATES to cough--that is really the only time he cries (other than when they suction him). He is still producing a lot of thick mucus that he cannot extract by himself--thus, the suctioning. But the cough is a productive one, and that is a good thing.

Through all of this, I am amazed at how I have been getting feelings about certain things--I know it is Heavenly Father prodding me to do certain things. For example, when I got here yesterday morning his oxygen was turned down to .7 and he was really having to fight to breathe. I had the thought--he shouldn't have to work so hard to breathe if he is struggling to overcome pneumonia. I explained that to the nurse and ask that she turn up the oxygen. She did and a few hours later, the dr. agreed with my decision. How did I know that? I have NO experience with this kind of thing. Another example is with Jonathan eating formula. I kept asking if it would make his mucus thicker. The nurses and dr. all said no but it turns out that the formula might be causing problems with the fluid in his lungs. I could list so many other little things like that but suffice it to say how thankful I am for the promptings of the Holy Ghost! I need to live my life in such a way I can stay in tune to those promptings to help Jonathan the best way I can.

Jonathan has had a great nurse--Brenda. Today is her last 12 hour shift, and we will be sad to see her go. He has had such wonderful treatment here. We are so thankful for good health care and good insurance. We are so blessed!

Yesterday I spoke with the social work manager for PCH and she asked me if I would be interested in serving on the parent advisory council for the hospital. I told her I would love to, depending on the time committment involved. They are supposed to call me. We'll see what happens there. . .

Thanks to everyone for your continued prayers. Our family has felt the strength of united faith and prayers in our behalf. We are so grateful!

More complications

We found out yesterday Jonathan has a lobe in his right lung that has collapsed. Ironically enough, he seems to be doing better. He has awake times where he seems quite responsive and he is eating. He still has labored breathing and requires oxygen. And of course, to top it all off, Raegan woke up this morning with her eye swollen, "Mama, I have a pink eye."
Here is a picture of Jonathan taken yesterday during one of his awake times. That is the face he makes when he is content. :) Such a cutie!

Did I ask if things could get worse?

Well, Jonathan has developed pnuemonia. Poor little thing! He is taking two antibiotics, so hopefully that will help him get better sooner. They told me he will be in the hospital for a week to ten days from today. It looks like we are in for the long haul--and he is in for an even longer haul. Right now he is still on oxygen--1.5 liters and has an iv. He did eat almost 40 ml's of formula last night, and that is a good sign. Please keep those prayers coming!

In the ER one more time

OK so this is the fourth time we have been in the ER since December. I was in two times, Raegan once, and now it's Jonathan's turn. Poor little guy. He has RSV. He will be in the hospital for a few days. At least he is not coughing so much. And he is resting peacefully. He is on oxygen and an iv. He will get to go home when he is eating normally (which he is not doing--eating, that is) and when he can keep his oxygen levels up on his own. I have no idea how he got RSV. He wasn't held that much, we didn't take him hardly anywhere. Raegan was only allowed to touch the top of his head or his feet. We used hand sanitizer and washed our hands incessantly. HOW? Of course, I have a cold, so I am sure I was the one to give it to him.

I learned something about babies I did not know. They do not breathe through their mouths. The only breathe through their noses which is why having a cold is so dangerous for them. If their nose is plugged, they can't breathe. And that is Jonathan's problem. When we got to the ER last night, his oxygen level was at 66%. It makes me absolutely SICK to think what would have happened if we had waited even until the next morning to do something. I felt like I was in a movie--or maybe the show ER. When the triage nurse measured his oxygen, (which score I did not know at the time) she said "Follow me." The next thing I knew, my little baby was on a big white bed in the ER with about 10 people around him doing a so many things. The nurse was talking to me in such a calm voice and I wanted to scream, "WHAT IS THE MATTER WITH MY BABY?" They talked about so many possibilities and even mentioned a spinal tap to check for spinal meningitis. I felt like I was going to pass out--I think I was having a relapse from my surgery reaction. Anyway, the test results came back positive for RSV. At least we know what is wrong now and just have to wait for it to run its course. He is still having labored breathing and that is a problem. They also said this RSV could trigger asthma. I am praying he not have any side effects from this virus. I am so thankful he is in such good hands. I am not as anxious now that I know what is wrong.

So sorry if this seems like I am rambling. I haven't slept much in the past few months and it shows. Thanks to everyone who is praying for our baby. He will get better soon.

Raegan Loves Her Baby Brother

Here are a couple pictures I really like.