Dear Son Medical Update #9

As I mentioned previously, after I left on Sunday, Dad stayed with Dear Son and they didn't perform any deep suctioning. I spoke with Dad and they had not done anymore suctioning down his nose nor did they suction him at all, even after Dad asked. On Monday, they did do some suctioning but only in the mouth, according to Dad and not down his throat. Dad managed to sit him up in the wheelchair for quite some time and over the course of the day, things seemed to get better. They took him off the IV fluids, ramped up his feeds and said they'd release him in 48-72 hours. All of this seemed quite unbelievable to me, considering the condition he was in on Sunday. They seemed to believe that he was a lot better.

This was all pretty unbelievable to me and I was not sure what was going on. I had difficulty getting medical information from Dad since he doesn't ask the same kind of questions that I do. After they switched to the high humidity face mask, they had started to wean his oxygen.

On Monday evening, I paged Ped Neuro Doc to try to get some answers. I said I was confused at the sequence of events since he was suddenly doing better and they were make some pretty dramatic changes. They hadn't done any suctioning, hadn't ordered a chest x-ray, removed the IV fluids which he was on and were ramping up feeds. He was quite surprised as well and agreed to speak with the ICU Attending Doc the following day. I had also asked him if it was safe to remove the IV fluids since he couldn't go back on full feeds (full feeds include formula and water) and also asked him to set the schedule for the feeds. He had done this on past admissions and it took weeks to get Dear Son back to previous levels.

On Tuesday, he saw Dear Son and had spoken with the ICU Attending Doc. She had stated that they had performed pretty aggressive deep suctioning on Dear Son and it was effective. Ped Neuro Doc said that he had seen Dear Son and was shocked at how he looked. He said he looked 100% better and he would not have believed it if he hadn't seen it. Dad had put Dear Son up in the wheelchair and had him up on Monday for 1.5 hours. I am not sure if that helped or what turned things around however it was good that things were looking up. It still seemed like things were going incredibly fast given he was on a vent some eight days prior and he was still quite fragile.

Late Tuesday evening, around 6 p.m. or so, the ICU team moved Dear Son to a regular floor. By this time, they were aggresively turning down the oxygen. On Wednesday, they continued to wean him and by mid afternoon, he was down to a half of a liter of oxygen on a nasal cannula. He continued to desat throughout the day and began running a fever on Wednesday evening. Respiratory treatments which included nebulizer treatments with albuterol, chest pt, the vest and cough assist were reduced to every four hours from every two hours previously. He was still on potassium and they were weaning the Methadone. He has been sleeping most of the time and hasn't really been alert like he was on Monday or even on Tuesday. It is not unusual though for Dear Son to sleep for weeks after a discharge.

On Thursday, Thanksgiving, I was really anxious to go home. Despite a rising fever, Dear Son had been off all oxygen since around 3:30 on Wednesday with only one desaturation. It had been explained to me that a person can have some desaturations at home normally however because they are not hooked up to a monitor, you don't know. At the hospital, since the monitors are hooked up, you can follow it easier. Prior to removing all of the oxygen, his saturations were around 97-100 and once it was removed, he stayed around 94-95.

During rounds, we discussed his status and possible discharge. We talked about his increasing fever however the Pediatric Attending Doc said that it is not uncommon for kids with central nervous system disorders to have uncontrolled fevers. He said that if a mother were to call in to speak with a physician and tell them that the child had a fever of 103, but the child was not vomiting, did not have any respiratory distress or other signs, they would tell her to watch the child. He said that the course of treatment is the same at the hospital and if they are just watching the patient, then I could do that as easily at home. (I should mention that he had a problem with a fever last Saturday and he ran it for some 48 hours. They had performed blood cultures and nothing grew.) On Wednesday, they performed more labs and then again today they did another blood culture. All of the lab work to date has been negative. So although he did have a fever, there wasn't anything to indicate that he had a bacterial infection of any kind. He also was not having any respiratory distress. The Attending also explained to the residents that because he's been in the hospital that there is a tendency to think that they should keep him when in fact if a mother called from home and if they'd tell her to watch him, then the advice isn't any different just because he's in the hospital. Essentially, if they'd tell a mother who called in to watch her child at home and if the same circumstances presented themselves for an in-patient then the advice to watch the patient would be the same and you can watch them at home as easily as you can in a hospital.

I also indicated that I had a nebulizer and that I could perform chest pt and the nebulizer treatments with albuterol at home. They had prescribed a vibrating vest for him however I explained that we had exhausted all durable medical equipment (DME) dollars for the year so I couldn't get that. (Dear Son's primary insurance has a $2000 DME limit per year.)

During rounds, I also clarified with the Attending on what I needed to do if the fever continued to climb. I asked if there was any number where I should be concerned and seek medical attention. He stated that as long as there weren't any other symptoms, that the fever alone was not an indicator for medical attention although if it were 106 or 107 then I needed to seek medical attention regardless. I specifically asked if it reached 104 let's say, do I need to call and he said no. He reiterated that kids with central nervous system disorders run high fevers so I am o.k. unless he's in respiratory distress. With that they agreed to discharge Dear Son.

I had to wait for Dad to come pick us up since he needs to lift Dear Son. Throughout the day, Dear Son's fever continued to climb. It went from 100.8 on Wednesday evening to 104 by 2:30 Thursday afternoon. We left at 4 p.m. Needless to say, I was slightly uncomfortable about that however I knew that the CBC and blood cultures were normal so there wasn't any bacterial infection. Without a bacterial infection, there wasn't any reason for antibiotics. In addition, they explained to me previously that Dear Son had a 14 day course of Vancomycin and Zosyn in the ICU and he also had another 48 hours of antibiotics earlier in the week in the ICU and yet no bacteria grew in any of the cultures.

We arrived home around 6 p.m. By 7 p.m. his fever was down to 102.9, by midnight it was down to 102.5 and now at 3:17 a.m. it's down to 101.2. I am doing nebulizer treatments every four hours along with chest pt. Around 8 p.m. I moved him from the recliner to his bed and he slept until midnight when I got up and gave him his seizure meds, nebulizer treatments and chest pt. At that time, I thought he sounded pretty noisy and his breathing was more rapid. I can't say I've really felt very comfortable since he's been home in terms of his status, but I'll just have to watch him. Since he sounded so noisy, I got him up and put him in the recliner at 1 a.m. and did a second nebulizer treatment to open the airways. That's what they would do if we went to the ER. At this point, I think we'll have to wait and see. I would like his breathing to get a little better before I'll feel good about this. I'll probably keep him upright for another hour then do his nebulizer and chest pt.

As for feeding, he'll remain on continuous feeds for a few weeks meaning he gets his feeds/water very slowly 24/7 to prevent aspiration. They also increased his Vagus Nerve Stimulator settings while we were in the hospital.

So in summary, Dear Son is now home where I will continue to monitor his temperature and respiratory status. He is on g tube feeds 24/7. I continue to give respiratory treatments with the nebulizer and chest pt every four hours. He sleeps most of the time and is not really alert. He opened his eyes once on Thanksgiving so we still have a ways to go. Although he was quite alert on Monday, he really hasn't been that way since. It will be weeks before he will be strong enough to go back to school.

Thank you for all of your prayers, wishes and support for Dear Son and our family. Your support means more than you could know. Please continue to pray that his breathing gets easier and that he makes a full recovery. I hope the discharge was the right decision and sincerely hope and pray we can avoid a re-admission.