Sick Kiddo

There have been a lot of changes since I last posted. Logan is now resting his head at Children's Hospital in Minneapolis. He was airlifted last night. The last time I wrote, Logan was still off the ventilator (it had been removed on Tuesday). He was having significant episodes of agitation throughout Tuesday night into Wednesday. By Wednesday afternoon, Logan was agitated so much he received Ativan to help calm him. We decided to step away for lunch. I noticed he was still breathing fast when we left but he had still been maintaining good vitals. We took Lauren to lunch in the cafeteria.

We returned and Lauren and I went straight to the playroom for some much needed mommy daughter time! At about 2:00, Joel came in and said that Logan was breathing funny and that they were asking a lot of questions. I went straight to his room. Apparently his signs of respiratory distress had worsened while we were gone. When I arrived his oxygen saturation was in the low 80's and I could tell he was pooping out.

They had tried breathing treatments and increased his oxygen with no change. The next step would have been CPAP. This is a mask that delivers oxygen as well as pressurized ventilation to help open the lungs when a person cannot do it themselves. He would not have tolerated that so the next step was intubation. Dr. M was concerned that he may be difficult to intubate due to his anatomy and very recent history of difficult intubation just a couple of days ago. She asked anesthesia to come intubate him. The crew quickly got equipment and the team together and I stepped away.

Leaving him in these situations is always hard and the waiting is always agony. There is always a door you find to focus on knowing that is where someone will come through to give an update. So we sat and waited and watched the door. A few people came and went and one of the people that walked by was the anesthesiologist. The crew that initially responded to intubate him was a couple of nurse anesthetists. I guess they had the anesthesiologist come up because Logan was not going to make it easy! I was told the anesthesiologist was the one that intubated him. Thankfully they had a scope with a camera and they were able to take their time and get a good look before placing the tube.

So back to the door, we continued to watch the door. Meanwhile, Lauren was playing and Joel and I were both trying to do our best to stay calm. Thankfully Logan's home care nurse, Bonnie was able to come right away. I called her because she was the closest person to the hospital and I needed help with Lauren. More people came and went through the door and then after what seemed forever, they came and got us!

We returned to our baby boy. One of my last blog posts talked about the equipment slowly being peeled away after the extubation. Suddenly it was all creeping back in. Logan continued to be very sensitive to stimuli and the doctor and respiratory therapist were constantly making changes to the ventilator in order to make him comfortable and improve his breathing. He had another chest X-ray which was significantly worse than the previous. This was definitely concerning.

As a little recap, Logan is normally a very noisy breather with a lot of secretions. After he had been extubated on Tuesday, his secretions were at the normal level and were easy to control. Every once in a while, the doctor would have the nurses drop down his oxygen levels on the nasal cannula as an attempt to wean him down to his normal half liter of oxygen. It would work for a little while and then he would drop and require an increase. We thought his agitation was related to his sensitivity from coming off the meds and the seizure.

Somewhere along the way, more crud snuck into his lungs. I think that each time he became agitated he would expend so much energy that the next time would be harder to handle. I wonder if he just had an accumulation of secretions in his lungs causing a possible pneumonia and then the last episode of agitation put him in a tailspin. He may also have had an episode of aspiration at some point, we just don't know.

So, at this point in the story, Logan is intubated and mildly unstable. Meds and vent settings are being tweaked. Joel and I are making calls and trying to handle a very irritable and tired four year old that does not have a clue of what is going on around her. Once Logan was more stable Joel took Lauren home. Both of them exhausted. It was not easy to let her go and she didn't want to leave. Those tiger tears coming down her face just broke my heart. It is so hard to do this as a mother. I feel so torn between my children.

My mother in law Cindy and sister in law Jeni came to visit. They sat with Logan while my Aunt Michele took me to dinner. Meanwhile the doctor continued to hover and the tweaking of his vent and oxygen levels continued. I returned and Cindy and Jeni went home. I stepped away to make some phone calls and Dr. M. came to speak with me.

She said she was worried about Logan. She was concerned that he may continue to worsen and that the best thing for Logan may be to go down to Children's Hospital. I also shared that nagging concern as I could tell earlier that she was worried. She called the intensivist at Children's and ran it by them. They accepted to have him transferred. The helicopter arrived pretty quickly. Our nurse Jeannie reassured us that they would not rush the process. The handoff was great and we had a great helicopter ride. I was able to go with, and Logan slept the whole way (he was well medicated!).

 

On arrival to Children's in Minneapolis he was cold as the helicopter rides are not well heated! They worked to warm him up and repeated a chest x-ray. The intensivist said, his lungs sound good. Then when she saw his chest x-ray she was surprised. Over eight hours of time, both lungs were in distress showing bilateral pneumonias and what she thought might be acute respiratory distress syndrome. The staff settled him in and worked to find a good sedation balance. The vent settings worked well. Overnight he had troubles with the breathing treatments. They attempted to perform some sort of internal shaking with his endotracheal tube to attempt to loosen his secretions from the inside (don't ask me what this is called!). He dropped his oxygen saturation significantly so they gave him a vest treatment. This is something that wraps around his chest and shakes him for about 15 minutes. We do this at home a couple times a day. He still did not tolerate this well.

 

I was able to pass out for the night as my Aunt Michele sat vigil at his bedside. What a blessing to have such great family! I awoke to Dr. S's voice. He is our ENT. He arrived with some resident doctors. He did not have a lot of time to talk and said he would be back after a couple of surgeries.

 

We were then visited by the intensivist who devised a plan for the day. He was not going to repeat a chest x-ray as he had one in the middle of the night. The plan was: rest, sedation, breathing and vest treatments as tolerated, lab tests, new central line, and possible blood transfusion. Logan's day went accordingly without any hiccups. His hemoglobin came back at 7.8 which was down from 8.1. Because it dropped under 8, the intensivist asked to have him receive a blood transfusion. We consented and by the time I left to go home for the evening, the blood was running. Otherwise, the staff was able to wean his oxygen concentration down throughout the day. He is still on more than he should be but it is as expected. Joel stayed for the night. I am so proud of him for taking that step.

 

Yesterday was a hard day for Joel and I. Not just because we had a sick little boy, but also because of some of the talks we had with doctors regarding his future. There are some heavy concerns among us and his doctors regarding his ability to get off the ventilator and then what life will be like going home. Of course we are only speculating at this time and are often looking at worse case scenario. His ENT did make a good point that just two weeks ago he saw a kid at his baseline that was managing okay. But on the other end, we have a kid that has been in and out of the hospital way too much and when he gets sick it is harder and faster every time.

 

For now, we give control to god, the medical staff, and especially Logan. We will continue to surround him with love and support and do everything in our power to get him better. He is a fighter and is as stubborn as they come! Please keep him in your thoughts and prayers. We are okay with healthy visitors to the hospital at this time. The hospital has some policies about children visitors but I am unsure of the details but I can find out. Right now we have a lot of family helping us out but as time goes on (estimated a couple of weeks), we may need some help. I will keep everyone posted as we have needs. We have a lot of people who have reached out to offer help and we really appreciate it! You can contact me at rbyrne4@hotmail.com any time. I may take a little while to reply but I check it often. I will do my best to update the blog as I know how important this is to our friends and family. It is also therapeutic to me too!