An exhausting day...

Nate had tons of gunk in his throat and chest this morning when Jen arrived at the PICU. He really struggled until we did his breathing treatment, got the VEST on him and then did the Cough Machine. The first set of coughs brought up a huge plug / gob of nasty stuff. It is scary and quite gross to see what comes up out of his lungs when doing the Cough Machine but it is for the best. If that stuff was to stay in his lungs, it would only cause more problems. The VEST and the Cough Machine really wear him out but it really does help him so much. We get a lot of stuff up with each set of coughs and stuff continues to drain out even after coughing him while he is lying on his side.

Our routine has been to cough him after every breathing treatment and to also do saline breathing treatments to help keep his nasal passages as moist as possible. Every time we cough him, we have one of the PICU nurses ready to bag him in case his airway gets blocked again. Sheila did have to bag him briefly after the 4:00PM cough session because a big, thick plug was in the back of his throat and he choked on it. Jen was able to suction it out and his color returned quickly.

The best part of his day was the bath that he got! Jen and I gave him a full body bath / rubdown and he really enjoyed it. It took us about an hour to do everything but it was well worth it to see the smiles on his face as we did it. He smells good and looks good for any of the cute nurses that might happen to walk by…

He had a number of visitors today…Jenny, his night nurse, was working at St. John last night so she stopped by this morning when her shift was over. Denise, another of his night nurses, was working at St. John today, also stopped by for a quick visit. Jill and Hall came up for a visit as did Grandpa Jody and Judy, who drove into Tulsa to see the little guy. Miss Sue stopped by one her way to lunch then came back to spend some time with him this evening so Mom & Dad to come home at a decent hour. I really think he was glad to see us leave because that meant no one was going to cough him anymore!

Dr. Carey said that while this morning’s chest x-ray looked bad, it did look better than yesterday’s x-ray. We all feel that he is headed in the right direction but it will be a long, slow march.

As always, we thank you for your prayers & support!

Evening Update

After a VERY ROUGH day, we thought that we'd post a few pictures of Nate from this afternoon. It continues to amaze us that he can smile and be so happy even after the day he has had.

Nate & Miss Sue enjoy his Slings:


Nate checks out Junior from Veggie Tales (Thank you to the Nelsons!)

A good picture even with his BiPAP on...

X-ray update...a long, hard road ahead

Dr. Carey made his morning rounds after Nate returned from the PIC Line procedure and the story with his lungs is not good. His lower left and upper right lobes are completely white, which means they are filled with secretions / plugs / atelectis. He most probably has some infection which is causing increased secretions and the secretions are overwhelming his lungs.

The first goal is to identify and treat the infection which would reduce the secretions. He is on 2 strong antibiodics plus he has resumed the Tobramycin breathing treatments. He is also on steroids to reduce inflamation of the lungs. Next, we have to keep the secretions flowing out of him as much as possible. He is getting breathing treatments every 4 hours followed by CPT followed by the Cough Machine. His nasal passages are full of scabs and gunk so we have started using a humidifier with his BiPAP to help moisten the irritated areas.

Intubation is a possibility but will be used only if none of the other options work.

Overall, this will be a very tough battle for the little guy and we expect an extended hospital stay.

PIC Line...Take 2

The procedure to adjust the PIC Line this morning went well and it is now in the right spot. It took longer to get him ready, transport him downstairs, move him from the hospital bed to the table and get him re-positioned than it did for the doctor to adjust the position of the catheter. He's back in his room in the PICU and should stay sedated/asleep for a couple of hours.

Thursday, November 9

Today started out OK. Nate was awake and seemed to be doing fine. However, the nurse said he didn't sleep well last night, seemed uncomfortable and fussed a lot. We got a lot of "gunk" out of his lungs and nose when coughing him. Soon he calmed down, watched TV and did his slings (and he kicked and moved really well to his favorite music!). So things were looking good.

I met with Dr. Carey and he suggested putting in a "PIC" line instead of the IV that's in his foot. He said Nate is going to be here a while longer and the IV should only be in for about 3-5 days and it was already getting red and irritated. The "PIC" line is an IV cathedar that is threaded through a vein into his chest and can be in for a long period of time. They can draw blood from it and do meds through it. It seemed to make sense to me. The nurse informed me he would have to be sedated for the procedure. We had to sign a Consent Form. I hate Consent Forms. To me, they mean "CAUTION: SOMETHING TERRIBLE COULD HAPPEN DURING THIS PROCEDURE!". But we knew it had to be done. The nurse said it's really no big deal, the only thing that could go wrong is it would not be threaded correctly and go into his neck instead of his chest (which is not good). OF COURSE, this is what happened!!! They did a chest x-ray and it showed it was not threaded correctly. So, tomorrow, another procedure. He has to be taken down to another unit, sedated, and they will ultrasound the cathedar and put dye in him to trace it. Of course, I also think he could develop a blood infection from this........but we PRAY that doesn't happen! So another Consent Form.......

Also, the chest x-ray showed his lungs look worse than they did yesterday - BOTH OF THEM! They are both getting air flow, but both sides looked whiter than yesterday's x-ray. His nose is totally scabbed and swollen. We think this is due partially to the fact that he has been on a lot of oxygen and on the bi-pap 24/7 and it's drying out his nose. We've had a lot of problems with his nose in the last six months, but it seems to be worse now. We are going to bring our bi-pap from home with the humidifier to see if it helps any. We think some of the problems we've been having with his nose over the past six months, as far as scabs, huge mucus plugs and swelling, might be due to serious sinus problems or allergies. Before he is discharged from the hospital, he will have a CAT scan of the sinuses and an allergy test. Hopefully, we will get some answers.

Other than all of the above, Nate has remained in good spirits and is handling all of this like a champ. He's had two major traumatic experiences in the last four days in which he almost died; he has bruises all over his body because they've stuck him so many times; his nose is practically swollen shut and bloody; he has to be coughed and have his sore nose suctioned out; among many other unpleasant things; and he just takes it as it comes, puts up with all of it, and when it's over, he's smiling and looking at me with his soulful, loving eyes. I will NEVER be as strong as he is. Here I am, 36 years old, and my 3 year old is teaching ME what life is really all about. His strength, toughness, determination, and happiness continue to amaze me. Whenever I get down and think times are tough, I look at him and think........GOD IS GOOD AND LIFE IS GOOD!!!!

Again, thanks for your continued support and prayers. We don't know what we'd do without all of you. Nate especially thanks you................

A better day...

This update will be short since we're going to try to get some decent rest tonight!

Nate had a good last night. He slept soundly until 4:00AM when they had to do some lab work on him. He finally fell back asleep by 6:00AM and slept until almost 11:00AM!

This morning's chest x-ray showed some slight improvements. It appears that the mucus plug is gone and that the lung is beginning to slowly re-inflate since it was not as "white" as it was on Sunday. He still has diminished airflow in & out of the lung but we are extremely glad to see any improvement in his x-ray. The right lung has some "haziness" to it so we'll keep an eye on that side and hope that it does not turn into a problem.

He was in a pretty good mood most of the day...a little cranky around 6:00PM when he just wanted to be left alone. Jennifer, Hal and I stood at the door talking and just kinda "ignored" him for a little while. He quit fussing and was quite happy just watching us and the nurses at the Nurses' Station for a while.

No major episodes so all in all it was a better day....

A rollercoaster day...

When Jen arrived at the PICU early this morning, Nate was having a difficult time. He was fussy, irritated and had lots of junk in his throat and lungs. She repositioned him and the Respiratory Therapist (RT) started his breathing treatment. Once we got him coughed and suctioned out his nasal passages, he seemed to be in better mood and the rest of the morning went pretty well.

Dr. Carey made his morning rounds and we got to review Nate’s chest x-ray with him. The left lung shows a slight improvement but there is some “haziness” in the right lung. He still has diminished airflow on the left side but the slight improvement was something to be happy about. We’ll do another x-ray in a day or so.

He took another late-morning nap which was interrupted but us having to use the Cough Assist Machine on him. We have been “coughing” him after every breathing treatment in order to help get out some of the gunk that is down in his lungs. Earlier in the day, we had talked to Sharon, the PICU nurse, and Jo Anne, the RT, about all of the mucus and junk that we suction out of Nate’s nasal passages and how much this concerns us. Jo Anne offered to show us a way to “flush out” his nasal passages rather than suction them out.

As she was showing us this technique, Nate started to struggle and Jen could immediately tell that some of the saline solution and some of the junk from his nasal passages had gone down his throat. Before we could suction out his mouth and throat, he aspirated (inhaled) some of the stuff and proceeded to get choked. His O2 saturation plummeted and the PICU nurses came running since his airway was blocked again. He started turning blue and his O2 saturation level had dropped to the 20s in a matter of seconds so they proceeded to bag him and suction his throat until he got back into the 90s. The RT and I quickly put on the BiPAP but O2 level proceeded to drop so once again they started bagging him. They were finally able to clear his airway so we put the BiPAP on and he was able to maintain the needed O2 level.

Needless to say, it was another scary incident. Just when we think that things are beginning to improve slightly, he has another setback. I will say that it was amazing to watch them work on Nate and that Jen & I learned an important lesson on how to bag him more effectively.

Thanks for checking up on the Little Man and please keep those prayers coming!

PICU Update 11-6-06

Nate had an OK day today. He took a mid-morning nap but is still WAY behind on his sleep. It is still very hard to hear any airflow in his left lung and we continue the breathing treatments and CPT to help break up the plug. Tomorrow they will take another chest x-ray and we’ll have a better idea of how the left lung looks. He seems to be coughing more than normal so hopefully that is a sign that he is getting some of the secretions up and out.

He was very tired and cranky when we left the PICU this evening. He had labored breathing and his heart rate was higher than normal. We hope that it is just due to the fact that he was extremely tired and not something more serious. He had been fighting going to sleep for over an hour and could hardly stay awake during Veggie Tales.

Once again, we THANK YOU for your prayers, your support, your phone calls, your e-mails, your messages and your visits to the PICU. Nate, Jen and I are very lucky to have such a great support system and we hope all of you realize how much we appreciate it!

Extra prayers are needed for Nate...

Some additional prayers are needed because Nate is currently in the PICU at St. John Hospital after a major crash this afternoon.

To make a very long story much shorter…About 12 Noon, he started having difficulties while Jen & Linda were coughing him and suctioning out his nose. He started to choke, his O2 saturation level dropped into the 60s and he started turning blue pretty quickly. We went through our standard procedures of bagging, coughing, suctioning, breathing treatment, using The VEST to help break up the secretions and getting him on the BiPAP several times.

Finally about 1:00PM, he seemed to stabilize so we started another breathing treatment and turn him on his side to let the secretions drain out. About 10 minutes later, all hell broke loose…Jen could tell that he started to choke so we started to suction but his O2 saturation level plummeted. We took off the BiPAP and started to bag him while Linda called 911. Even though we continued to bag him, his O2 level kept dropping and ultimately registered 0 for between 2 to 3 minutes. His heart rate stayed between 40 to 60 beats per minute but nothing we did could get his saturation level above 0 and we really thought that we were going to lose him. Finally, just before the Bixby Fire Dept. arrived, we were able to suction a big glob of mucus from his throat and his saturation level started to rise slowly. By the time EMSA arrived, his O2 saturation level was in the mid-80s and his heart rate was rising as well.

We transported him to the ER at St. John while the Paramedic and I bagged him the entire way. After getting an x-ray and talking to Dr. Carey, we moved him to the PICU. His left lung still has a mucus plug in it and is pretty much collapsed since there is minimal air in it. As we left the PICU tonight, the nurse was able to hear some very faint breath sounds on the left side. He will continue to get breathing treatments through out the night and CPT to try to dissolve the plug. He will be in the PICU until the plug is gone and his left lung re-inflates. He is also on antibiotics to fight of any infections that he might have plus some steroids for his lungs.

Once again, Nate continues to amaze us. We really thought that he was not going to make it since his O2 saturation level stayed at 0 and we could not get it to come up no matter what we did. Luckily, he is one tough little boy and has so much “fight” in him.

We thank you for your prayers and support and ask that you say a few extra ones for him over the next couple of days. We’ll keep you posted…