Dear Son ICU Update III

Things have gotten progressively worse over the past few days. As you may recall, Dear Son had surgery on Monday to replace his Vagus Nerve Stimulator with a new model, since the battery ran low. For the surgery, they gave him heavy sedation and Dear Son was unable to process his own secretions (saliva). As a result, he developed a mucous plug in the brochial tubes and his right lung collapsed. Dear Son was admitted to the ICU, placed on a non-rebreather, with 15 liters of oxygen. He was given Vancomycin and Zosyn to help fight the infection.

This photo shows the in re-breather (not sure of the spelling). This allows for a high concentration of oxygen to be delivered to the patient.

On Friday, the chest x-ray was worse, showing there was more fluid in both lungs. Most of what has been problematic for me, is trying to understand exactly what is happening. They cultured the lungs and found out it wasn't a MRSA pneumonia. Since it wasn't a MRSA pneumonia, they discontinued the Vancomycin. Some of the data seems pretty good at times however the chest x-ray doesn't seem to follow. They can not seem to stabalize Dear Son. They have conversations almost daily with regards to intubation with the dilemma being that the ICU Attending Doc feels if he is intubated, he won't be extubated with Ped Neuro Doc disagreeing-he does think he can be extubated. The ICU Attending has been very clear that she does not believe he can be extubated and she said that she does this every day. On the flip side, Ped Neuro Doc knows Dear Son best, he has followed him since he was ten weeks old. His judgement is excellent and he has always been right on where Dear Son is concerned. I also wanted clarity with regards to what exactly was causing his issues; They explained that it was the collapsed right lung along with the infection that was made worse by the fact that he is non-ambulatory.

I also needed some clarity with regards to the oxygen. They are using this in re-breather and in the past they had used the Bi-Pap and C-Pap machines. They explained how the Bi-Pap and C-Pap machines work, pumping oxygen into the lungs and the problem is that Dear Son is so weak that if he were to cough, trying to clear out some fluid, the force of the machines would push back causing him to aspirate into his lungs.

Another issue is that of platelets. His platelets are low and he has had issues with recurring fevers all week. Once the fever goes away, a few hours later, he has a low grade fever and then it rises. We repeat this exercise daily.

Friday night, Dear Son struggled all evening and throughout the night. I contacted the nurse in the middle of the night and asked him to call the doc because Dear Son was working so hard to breathe. His respirations were 40-44 breaths a minute. The doc took a look and said he was fine. I told the nurse that the doc was wrong and that Dear Son was in distress. I usually am not this bold however I do know when Dear Son is in distress and what is normal for him. I don't profess to know the meaning of all of the data however I do know what I see.

On Saturday morning the chest x-ray arrived and was worse. It wasn't only worse, it was horrible. The ICU Attending wanted to do deep suctioning of Dear Son's lungs and I disagreed because they did this while he was on his back and I was certain if they did this, he would aspirate more by choking on his own vomit. In the end, they attempted it and he vomited twice on his back and they suctioned it out. They stopped doing it after that and just used the pressure vest. Ped Neuro Doc came by and said the chest x-ray was, "absolutely horrible". He was extremely concerned. Later that night, I saw the chest x-ray and was flabbergasted. The entire left lung was filled with fluid and 75% of the right lung. The x-ray findings read that there was, "a complete opacifaction of the left lung and a partial opacifcation of the right upper and lower lobes, worse than the previous study". The impression was that it was a worsening of the lungs most likely due to "increased retained secretions".

By Saturday evening, I was feeling pretty down. I had contacted everyone all week and asked them to pray for my Dear Son. He was on many prayer lists. I worried about Mother's Day because it was on Mother's Day of 2006 that he nearly died of the MRSA pneumonia. They did a blood transfusion that day and some three weeks later he recoved. I love my son so much and the last thing I ever want is to have Mother's Day be the anniversary of his death.

On Saturday, they increased the chest pt to every two hours along with changing his positioning. By this time, his eyes were swollen shut, he had been unconscious since Tuesday and unresponsive since his surgery on Monday. His left foot was swelling and they weren't certain why. They increased the Lasix to get rid of the fluid which was somewhat problematic since he wears a Scopolamine patch to dry up his secretions. The patch dries up all secretions and doesn't allow a person to sweat and Lasix does the opposite-it pulls the fluid from the body. I felt bad for Dear Son.

Today, the x-ray was a lot better. Both lungs showed improvement with some clarity on the top of each lung meaning some fluid had subsided. The problem though is that now they feel that he has chronic aspiration meaning he aspirates all the time on a daily basis and occurs when he is lying down. Dear Son can't sit up much anymore so this is a huge issue. In additon, they have recommended we see a pulmonary specialist after the hospitalization is complete to see what equipment I will need in the home to care for Dear Son.

Perhaps the saddest part is that this will always be a recurring issue for Dear Son. As he gets weaker, he will probably get to the point at any time where he needs a trach. I don't think I can do this as I have a very weak stomach and I think it would break his spirit. I asked them if it would be appropriate for Dear Son to have this, considering he has a progressive neurological disease. I asked if he could still get an aspiration pneumonia and the answer is yes, so I am not certain what issues this would resolve. That being said, I don't know how I could really make that decision to not do the trach. I have been pretty firm in my resolve that it was not something I could honestly do however the bigger issue is that I probably could never really agree to do it, if the decision had to be made.

But perhaps the best thing that happened today was when Dear Son said, "hi" to me three times. He was lying in bed and had not come to all week. Out of the blue, as I was sitting in the chair, I heard him softly say, "hi". Not once, but three times! That Dear Son may not know it's Mother's Day but he always delivers. It was the absolute best thing I would hear all day. Dear Son seemed to be breathing easier when I left today. I only hope it continues. In the meantime, I really want to bring him home.

Thank you so much for your continued support and prayers for my beautiful Dear Son. Please continue to pray that he gets well.

5/11/09 Update 8 a.m.- It appears our joy is short-lived. Today's x-ray was worse. I will try and post any updates today after work before I go back to the hospital; I won't have any internet access once I am there. Due to Dear Son's MRSA (once MRSA, always MRSA per Big Academic Medical Center), he is on "contact isolation" which means they won't allow me to use any hospital pcs or anything else down there, even though I don't have MRSA.

*The two photos with the black tubing are of Dear Son using the pressure vest. The pressure vest is hooked up to a machine and vibrates the vest. The vibration helps break up the fluid inside the lungs. That fluid, is then cleared from the lung when the patient coughs. They are using this machine on Dear Son every two hours and for thirty minutes each session.