Two Steps Forward and One Step Back

We had a GREAT week last week with Miller, but the last couple of days have been rough on the little guy:(.

It all started going downhill Sunday evening. He had just finished a feeding and was laying on his side on the couch. His saturation on his pulse ox machine was great, but then the machine started getting a bad read (the O2 and pulse both go blank). This happens often, so I didn't worry about it. I usually mute it and it will start picking up a correct read pretty quickly. Well, he started fussing a little bit so I was sitting there patting his bottom, trying to calm him down. He had his paci in his mouth, but wasn't sucking it, so I could barely see the outside of his little lips. I noticed they looked a little blue. This is when I started freaking out a little about the machine not working. I wanted to know what his saturation was, so I fiddled with it until I got it working again. His O2 was in the 60's! I cranked up his oxygen machine a little bit and it did nothing, so I cranked it up more, and more, until we had him at a 3 (he was at 1/4 when we came home from ACH, and now he is usually at a 1), and his level wasn't budging!!! He was really blue and gurgling and we felt SO helpless! After a good deep suction, he finally started pinking up again! I don't know how long he was blue. Probably only for a couple of minutes, but it felt like FOREVER!

The next morning was typical. He never has good mornings. He usually wakes up between 6:00a-8:00a, we feed him, he fusses through the feeding, then he will go back to sleep for an hour or so. Once he wakes up he usually has one of his fits, his O2 goes LOW and his pulse rate goes HIGH. To calm him down, we either have to call daddy home from work;), or give him is Lorazepam. This particular morning, we gave him his medicine. The rest of the day was up and down. Dionne, Miller's Hospice nurse came around 6:30pm and he was having another fit. She gave him 1/2 dose of morphine and it took a while to kick in. Once it kicked in, it didn't seem to last for long. My girlfriends were coming over for Girl's Night Out, and bless their hearts, they got a dose of our days:(. His O2 was fine for the most part, but his heart rate would NOT drop! We couldn't do anything to calm him down! Finally he calmed down and the rest of the night was pretty good. He spent the majority of the night on Patrick's chest. Patrick obviously didn't complain about that;)! Gotta love the SUPER dad!!! Have I told you how lucky I am to have him???

Today we had an appointment with the Pulmonologist. We hesitated to even go to the appointment. The Neurologist suggested that we see them, but I just didn't see what they could tell us that would help Miller's situation. We decided to go anyway. If nothing else, it would be a good excuse to get out of the house;)! I figured they would do a chest x-ray and maybe tell us what level to keep his oxygen at. We got WAY more information that I expected.....

Dr. Menendez was SO good! Her bedside manner was so calming. She walked in the room and I could immediately tell she was really concerned about Miller. He was really gurgling and working extra hard, so she got to see him at his worst. She prescribed him some medicine to help dry up his secretions and told us not to deep suction him anymore. She said that we should keep his O2 level at 2-3, because even though his saturation may look good, it will help his comfort level since he is working SO hard to breath. She also recommended that we give him his Lorazepam on schedule (every 6 hours) and Morphine (as needed). This is hard for Patrick and me. You don't like to "drug" your baby, but at the same time we want him COMFORTABLE! That has been my biggest prayer. I asked her (as I do EVERY poor doctor that graces our presence) how/when she thinks it will happen. Of course, NOBODY knows the answer to this question, but she told us she thinks it is really, really soon. She said the next 48 hours will be crucial, but I got the impression she thinks things will happen within the next week or two.

This hit us hard. I got the same feeling when she told us this as I did the day we were sitting in the room after his EMG when the doctor gave us the diagnosis. I just wasn't prepared for it. All of the breath was taken out of me. Just when you think all of your tears have been cried, another river opens up. I know we were told 3 weeks ago that it was probably an appropriate time to go to the Hospice House, but at that time I knew in my heart that it wasn't really time. I just didn't feel like he was ready. Who knows, he could totally bounce back this time too, and I REALLY hope he does, but I have a different gut feeling this time. He is showing all of the signs we have been warned about....not responding to his oxygen, his bad days outnumbering his good days, etc.

Dionne came to see us this afternoon. Dr. Menendez had called her and filled her in on everything. Dionne said we could go to the Hospice House if we wanted to, but it was our decision. She feels comfortable with us being at home, but knows that we don't really want to be here in the end. We will see how the next couple of days go and make a decision from there.

Monsignor LeSieur is coming over tomorrow night to give Miller the Sacrament of Confirmation and Sacrament of the Sick. Typically he wouldn't be confirmed until he was 14, but because of "danger of death" they are doing it early. This gives us so much peace.

I know many of you are praying for us, so I would ask that you pray specifically for these 3 things:

1. Miller's COMFORT
2. Cole's UNDERSTANDING
3. Mine and Patrick's STRENGTH

Thank you so much for your continued support.

I took the pictures below today. I know they all look exactly the same, but I have a hard time deleting ANY pictures of this precious baby boy, so you get to see all of them:).....