RSV = Restless, SUCKY, Visit to the hospital

Sorry for taking so long on an update. We have been in the hospital since Tuesday night. Maximus was positive for RSV. Last Saturday I notice him and I both getting sick and by Monday night we were both miserable. I thought about waiting until Thursday (yesterday) to take him in since he already had a Dr appointment for his weight check up. But I decided not to chance waiting that long. And I'm glad I went with those motherly instincts. I felt bad calling in to work on Tuesday to tell them that I an Maximus were both sick and I was going to get us both into Dr's. But I am also so glad I did. It was a long day Tuesday. I got him in at 4:30, then we left there and went to get him suctioned for RSV testing but Utah Valley had a 2 hour wait, so we headed to AF where there was no wait time. But first stopped home to hurry and feed him and me. We got there around 6:30pm and got the awful test done. I hate it. Then after we went to the Insta Care to see what I had at about 7:30pm. We were there an hour for them to tell me I just had a viral infection (which later being here in the hospital I was told I have an adult form of RSV - just a really bad cold, I've almost lost my voice a few times and can't sleep well with the cough). We got home around 8:45pm, and at 10pm I called Maximus's Dr to see if using a humidifier and putting one on his oxygen would be good. He told me I could and that he would call and get the results of the test and call me back. It wasn't 2 min later he called back with the dreaded news. Positive for RSV. He said it was up to us whether we wanted to try to kick it at home, but most likely he would get really bad and end up in the hospital anyways. We decided it would be better not to prolong it. So we headed to the hospital at about 10:30pm. As much as I hate being here, I'm glad we are because he has been miserable and it's so much easier not to have to bring him here 4-5 times a day to get suctioned. Yes, he has to go through that miserable suction at least 4-5 times if not more, and they come in before every feeding and suck his nose out too. It's not fun and I hate seeing him in pain. I can only imagine what that feels like and I wish I could take his place. It wears the poor little guy out and he sleeps for hours after. We thought he would be getting better by now and thought we were on the upside of it, but this morning I was told that his lungs sound a little more wheezy and crackly so we are probably only on day 4 or 5 of the 7 - 10. So it looks like we will be here until Monday or Tuesday unless we get a miracle (even though I've had plenty of those lately, the biggest being my little fighter).

At his Dr appointment on Tuesday he had lost 2.5 oz and then from Wednesday to Thursday's weighing he lost another 2.5 oz. So we were worried because he was back down to his 9 lbs 1 oz. But today he was up 8 oz! I was so happy! It's helping that we have a continuous feed on him through his feeding tube. So he is getting 20ml every hour and then I am feeding him 20-30ml every 2 hours. So he is getting 60-70ml every 2 hours, which is about 2.25 oz. I'm hoping he will start taking 30ml every bottle so we can reduce the feeding tube and get rid of it. But I guess if it's helping I just have to deal with it.

 Maximus has been such a trooper (not that he hasn't been his whole 2.5 months of life), even though he is miserable for the most part he is happy. He has his moments but I'm so glad he can smile and play and be happy too. It makes it better for me and Tony and everyone here.  I have been sick too, and stressed and so my milk supply is about gone. I'm trying to get it back up by keeping hydrated, sleeping when I can during the day when I have help, and pumping every 2-3 hours. Today is the first day I am feeling somewhat better. I'm not coughing up my lungs every 5 min and my throat isn't hurting as bad.

While being here, I have learned a lot. Mostly that it could be worse. I have met and seen a few kids and parents who have a bigger challenge than I. And it makes me feel blessed. I pray for them every night and I pray for the kind of strength they have. One of our nurses, told us that he had twin boys at home, 14 years old with Cerebral Palsy. One of them can't walk and is in a wheel chair, the other can walk but very stiffly. Both of them are blind, in diapers and have feeding tubes. They were born at 28 weeks, and just struggled to get out via C-section. They were both so tiny and just didn't have the development they needed. I was overwhelmed. I felt so bad for him, but he was so positive and you could just feel the love he had for his two hero's. He told us to not be discouraged from having more kids. Him and his wife waited too long, but they do have a 3 year old girl too. Also down the hall from us is a 7 year old boy, also with Cerebral Palsy and something else. I can't remember. But he is in a wheel chair, has a tracheotomy and feeding tube. I'm not sure why he is in here but he is hooked up to all sorts of things, it makes me think twice about complaint about the 6 cords attached to my son (nose cannula for oxygen, feeding tube, 3 chest monitors, and oxygen monitor). I and Tony have almost considered careers in nursing. We both know how to do pretty much everything the nurses can do. It's so packed here, every room is full including the rooms that double. And they are under staffed, so it makes it difficult for them to keep up, so therefore we do a lot of the monitoring and changing of stickers and tubes and we know how to run the monitor screen in the room too.

Sorry this update has been so long, hope everyone is doing well! We can have visitors this time all you need is the code and room number so shoot me a text, email, Facebook message or whatever if you'd like to come by! Here are a few photos while being here. I have some videos but the Internet is so slow here it won't let me upload them so I'll have to do it later.

Monitor

Feeding machine (Kangaroo Pump)

Maximus currently 

My bed. :)

A few nights ago...