Friday, August 28, 2015

A quick update

I have been super busy at work so I don't have long to update. Jude has been crying the last few nights and not feeling well. He has also ran an intermittent fever but last night it was 100.4. He then woke up with a fever again this morning but seemed to be resting comfortably. He has a new night nurse and she is a really good nurse. So his mornings have been a bit easier lately but I could tell he didn't feel well today. I called and left a message for hospice to check him out if possible. 

Tonight we meet with the people who own the house we like. They requested to meet us in person and I think a portion of that is to meet Jude. Since he inspires so many people I had no problem with them coming over. It's still a big leap to look at moving but in the end I think it will be worth it. I'm looking forward to the meeting.

Emily has started back to school and is doing very well. I think this has kept her mind off her boyfriend leaving for college. She is asking to ride to the football game tonight with two other teens which makes me nervous but I guess I have to let her grow up at some point. 

Wednesday, August 19, 2015

Follow up to the heart post

I wasn't going to post this but I have had so many emails and contacts from nice people regarding what could be causing the heart dips that I thought I needed to. Thank you for reaching out with possible solutions but I believe the news was not the best.  I took it upon myself to call and talk to Jude's prior cardiologist. They were nice but very honest. They pointed out that this is probably a weakening of the heart due to the lung disease. She explained that they see this in their pediatric lung patients and over time we will start seeing longer dips and that eventually this will affect his oxygen level too. Basically this is exactly what Teri just commented a weakening of Jude's heart muscle. 

I told her I understood and that Jude has been struggling for awhile. I told her about the mucus plugs and the apnea. She said both of those can cause severe issues with the heart especially the apnea. She said we certainly aren't to the point where we are seeing long dips now but to be prepared that eventually that will happen. 

It's sad but we knew we would see medical issues like this creep up. I also attribute this to why he is looking so frail to me. He has warm toes, fingers, and is sleeping soundly today. It's just one of those additional things to add to his list. 

Again thanks for all the suggestions. 

Jude's heart and Emily's heart

Well after my major meltdown on Sunday I went back to work on Monday and I wasn't feeling that great. I attributed it to the meltdown and good cry. However yesterday morning I got up and felt like a semi had smacked me..........I was sick. ARGH! I had no time for it and I was just irritated. So I worked as hard as I could in the morning and went home around 1pm and slept as long as I could. I had some antibiotics on hand which I know is terrible but they are helping. So the family had to fend for themselves last night as I laid in bed recovering watching my favorite movie "Gone With The Wind". Mike was very proud he was able to order he and Emily Chinese food without my help. However...........Mike got food poisoning and is now home recovering...not even kidding. I am back at work and feel some better but I just sound like I am talking into a fan. 

Jude is doing okay. I heard his alarms go off throughout the night so I know he was having oxygen issues. He also keeps continuing to have the heart dips that I talked about in my prior blog. Despite my new medical education I cannot figure out what that could be other than a weakening of the heart. Charlotte did experience the heart issue a few times yesterday. I experienced it a few times last night but today Charlotte has not seen it happen. So I did call hospice just to let them know what I am seeing and we are all a bit baffled. For my medically educated readers here is an example. Jude has two situations he can have issues the first being Jude trying to clear phlegm and his oxygen and heart rate will drop. That one is pretty self explanatory however the other situation is when Jude is calm his oxygen will stay level but his heart rate will drop drastically even down to 30's - 40's. He will soon recover but it is something new and we are all a bit perplexed. I am wondering if this is a situation like a preemie would experience. Since the lungs are so damaged is his heart having issues properly pumping blood? 

Emily is doing fairly well since her boyfriend left. I know she feels very lonely and is trying to connect with her friends. She did start back training for miss teen in November. She is working out and connecting with her interview teacher. I believe starting back to school will really help her. 

Sunday we are having a come and go event for Jude's birthday. Some people have requested to see him and so we wanted to set something up. If you didn't get an invite and would like to attend it's not because I intentionally left you off. I have sick head, lol. So if you anyone would like to see him we are hosting the come and go event from 2-5 on Sunday. We have a few requests. 

1. Please don't come see him if you have been ill. 
2. Please don't judge my house because it's dirty and a mess.  
3. Please wash your hands before touching Jude. 
4. If you are bringing children please remember to explain to them that Jude is very ill and needs lots of medical equipment. Please watch them around his tubes and lines. Please also let them know Jude needs a calm environment. Loud noises upset him and can send him into seizures. 

With that being said don't let that scare you. We made it come and go so he wouldn't get overwhelmed and we are very good at controlling the house. If you want to see Jude he would love to see you. He does not need gifts just a hello. 

Sunday, August 16, 2015

Total meltdown

If there is a mom that's in my situation that reads my blog that has gotten upset I want you to know a meltdown is okay. After 7 years mine happened tonight. I am pretty sure I've had some mini meltdowns but girl/man this was a full on grab Wendy Williams microphone drama filled tear stained wicked witch of the west meltdown. Let me explain the situation and then you can appreciate, judge, or learn from the night I had.

Jude had a great smile filled day but about 4pm he started giving nurse Allen issues. By 5pm when Allen was leaving and turning the 5 hour nursing reign over to me Jude was in a full blow anxiety session. I gave him morphine which helped. Jude started sleeping and I thought everything was fine. Suddenly Jude gasped and his alarms sounded. I shrugged it off thinking it was his normal issues and got up to suction his mouth when I realized his heart rate was plummeting and his oxygen was 89 then 86 then 83.... Omg! I know Jude is on hospice but the situation sent me into a panic and I screamed for mike. I sat Jude up and began CPT and got his stats back normal. Just then Emily who had been gone all weekend text to ask to stay with her cousin but I begged her to come home. Emily begged and begged to stay with her cousin and I was torn but then my phone rang and my co-worker and fortress was in the hospital. That was it. I walked into the bedroom and mumbled gibberish to mike about what happened, grabbed my keys, and said I'm leaving for awhile. He just told me to be careful and didn't argue. I drove to a comfortable spot then turned on some comforting music and text my best friend. I think she knew it was serious and had kind encouraging words for me. I then sat and had the best cry I have had in a long time. I needed it so bad!! I finally got back home and walked in and mike didn't say a word. I just grabbed my stuff to go have a bath. Jude was still having issues but I was able to kiss him and tell him I loved him.

Tonight Jude's lack of health, the messy house, the mounting bills, losing the new home, Emily's health, my job, and more became absolutely overwhelming. The person who always keeps it together just couldn't hold it together a minute longer. So I sat in the dark in my car and the song "The Climb" came on. I don't really relate to Miley Cyrus but that girl helped me tonight. So I put myself in check!!! I realized I have a beautiful home, a loving husband, a healthy teen, and a beautiful boy. I pulled up my big girl panties, wiped  my eyes, and headed home. Thanks for the meltdown I needed it!

Thursday, August 13, 2015

An update

Jude had a really bad day yesterday and his night wasn't that great either. I talked to Charlotte just a few moments ago and she said she was still working to get Jude's retractions to stop. His oxygen is staying up but he is just having issues breathing. I didn't really feel like coming to work today but I am here. You cannot do much at home except watch Jude and wonder. He always finds a way of pulling of situations so we will see how the day goes. 

Emily didn't have the best night either. She has a lot going on and emotionally I think she had a small breakdown. I think that can be healthy and it was probably needed. 

Wednesday, August 12, 2015

Jude and Emily

Jude has good moments and bad moments. When people ask me how he is doing I don't know how to respond other than "up and down". He is smiling one second and the next he is screaming or having oxygen issues. I have had a migraine for the past two days due to air quality and I wonder if Jude suffers from them. We have been giving him medications and pain killers as needed. I have noticed a marked difference in Jude's appearance recently but that's probably because I am his mom. I don't think everyone notices but to me he looks so different than he did a year ago. He looks pale and frail to me. However Jude still manages his smiles. 

I have to brag on my husband and ex husband for a second. Mike is driving Emily to Dallas tonight for a miss Dallas event. He said as long as he has a charged phone he is good to go. Then this weekend her dad is driving her to multiple events on Friday, Saturday, AND Sunday. Not to mention her dad is helping pay the remainder of her dress. I really am truly blessed with amazing men in Emily's life and I am very grateful! 

Monday, August 10, 2015

Jude's weekend update

Jude was up and down this weekend. On Friday he went to sleep about 12am and didn't wake back up until 5:30pm the next day. He was smiley and cute but he didn't stay awake long. He fell back to sleep and it was pretty much like that the entire weekend. We oriented a new nurse yesterday that filled in for Charlotte today. She is an RN and has about thirty years experience so I was pretty confident with her. However I felt bad for her. When she showed up this morning Jude was having significant oxygen issues. I was about to leave for work but ended up putting all my items down and helped work on him. I pulled his oxygen level from 83 up to 92 and I finally felt comfortable leaving. I called to check on Jude later and she said he was doing much better. She said it took two hours of bagging him, breathing treatments, and manual CPT to get him stable. The last I checked in Jude was sleeping comfortably again. Jude's blood pressure was also lower this weekend and he is still very pale. When he was between sleep and awake I started talking to him and he was responding to me. 

I have been pretty stressed out lately between Jude's situation and finances. We got hit very hard with multiple vehicle issues. However I can see his smile and it really melts my stress away. 

I am not sure about Jude's health and what it all means. People ask me questions like "will they try antibiotics again" and I am really not sure what to answer. I think what we are seeing is just the decline in the function of his lungs. He is comfortable and happy and that's all we can ask for.