Keep marching forward

Jude continues to have oxygen issues and bouts where he is crying out in pain. The nurses tell me his lungs "sound good for Jude" but that the lower lobes have little air movement. His witching hour seems to be from 4-11pm and we have to keep medications in him to relieve the pain. Ativan is the saving grace of medications. He is running at about 8 liters of oxygen tonight which is pretty high. Despite all his pain and agitation Jude manages small smiles when he can/

Emily had a few friends over tonight and they went to the movies. She is then having her cousin spend the night. This made me happy because Emily and I had a discussion the other night and she admitted that the reason she doesn't have friends over often is because it's hard to explain Jude's situation. I get it.... At 16 it must be hard to explain alarms and life saving measures to someone that never sees them. She also said I always tell she and her friends to be quiet because of Jude and she is right. I could tell Em to suck it up but well she has sucked up a lot. So I'm glad she brought people over tonight and she's even excited about the potential of moving. I think in a situation like ours you have to give each family member their own individual emotional attention.

I caught Mike and myself almost giddy over house plans for the new place. We have saved pictures, been in Home Depot a million times dreaming, and more. So we ask for prayers that Wednesday our credit is approved and our house sells quickly. On an ironic note we met the people who own the house we like and she said that every family that has lived in that house has had a family member with a disability. She said she prayed she would get a cash offer and that God brought her a story instead and she thinks she likes that better. What a sweet lady!!! Truly a good person. So I don't know if this will work out but I have faith :).

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. 

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. 

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!

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. 

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! 

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.  

Opening your mind when someone has been diagnosed.

I have people that email me from time to time in regards to Jude's journey. They generally have a child that has recently been diagnosed with an issue and they are seeking answers. I try to be helpful but at the same time I try to be very honest. When you have a loved one that suffers a serious medical issue I believe you begin to bargain with God or fate. You pour yourself into the internet researching the diagnosis hoping to find a glimmer of hope.  I did this for a long time. Then I met Dr Riela and I always pass along his words of wisdom. However I do believe you have to be in the right frame of mind and at the right point in your journey to be receptive to his words. 

1. "No one can put an expiration tag on Jude but Jude." When we came into his office we had been told by a prior hospital that Jude wouldn't live past five years old. While shaking his head Dr Riela was blunt and honest. He mentioned the above sentence and then said not all doctors go off statistics. He explained very bluntly that Jude would never be normal. He said it doesn't take much more than a bran stem to be a baby and Jude may not ever do more than smile and giggle. Boy he hit that on the head. However he said that his responsibility was to take Jude as far as he could go with the best medical care possible and that it was up to Jude to let us know when his body has had enough. 

2. "Don't focus so much on the diagnosis". He explained a diagnosis is someones best educated guess and that not every patient responds the same to every diagnosis. For example he said "Yes Jude has Lennox Gestaut but what does that mean to you as a parent? It means to me he needs to be treated with certain medications and his healthcare is a bit more complex. We treat the symptoms and move on knowing the complexity of the case.".  Again he is very to the point. Basically he was saying he knows Jude has a seizure disorder but for him it really doesn't need a label. 

I rarely talk to Dr Riela anymore due to hospice taking over Jude's case. However I know if I picked up the phone to call him he would know Jude's case and would personally call me back. I think it's important to establish a lasting good relationship with at least one medical professional. Someone that you know will be there to answer questions and take care of your special needs child. Someone that doesn't require an office visit just to answer a simple question of concern. Someone that truly cares. We were blessed with several doctors like this but Jude's neurologist and pediatrician stand out the most. His pediatrician had lost a special needs child and was very connected to Jude. I think you need a professional who is honest and tells you how it is even if you don't want to hear it. I believe one of the most serious offenses to our society is sheltering women that are pregnant and not educating them on possible issues. There is no reason to scare anyone but there is a reason to educate. Teach them about milestones and what to look for and when to seek help! Hospitals should have readily available resources and packets for families that get that first dreaded diagnosis. We left the hospital feeling bewildered and overwhelmed and had no idea where to turn. Hence the reason we poured through the Internet.  We would have loved a packet of places to call regarding counseling, state help, insurance help, and more. Something regarding what your next steps may be after a frightening diagnoses would have been helpful. 

Jude is doing fairly well. He had a pretty good day yesterday and is still maintaining his oxygen levels. He is still pretty pale but I guess that's the nature of his illness. He is very happy and that is always a good thing.  

Thank you for your continued prayers they are much appreciated.

Jude the fighter

Jude is still very pale and he has a lot of lung congestion however he looks better. I'm thrilled but at the same time I hear the clicking of the roller coaster starting back up the large hill. Does that make sense? My aunt brought us some food today and stuck it in my fridge. It was a welcome sight today after work. We lost the house we liked (again) so I was a bit bummed but happy to see Jude's smiling face. I'm not sure what lies in store for us over the next few months regarding Jude's health but I guess no one ever knows what the future holds. Tonight I'll enjoy holding and talking to my little guy.

Jude's current situation.

Today was an emotional but restful day for us. Mike and I both left early from work and met up to talk and have lunch. We took Emily with us and let her know just how serious Jude's situation is and she truly understood. I think Mike and I just needed a day to process information without thinking about work at the same time.

When we came home Jude was having some issues again but was maintaining his oxygen levels which was an improvement. He even woke up at one point and looked at me and started smiling. He would try his hardest to mouth words to me and was so super sweet. He is very pale and very ill but he is trying his best.

Right before Jude took a decline I had found a house I absolutely loved. It wasn't cookie cutter, it was bright and open, and was exactly what I was looking for. However he got super sick and we just stopped everything. Today we actually discussed the house and it became eye opening. Mike said its important we keep moving forward with our lives and we move forward with Jude. He also said he believes this is giving us something else to focus on versus sitting on a couch watching, wondering, and waiting.  That part of this life is absolutely killing us.  So we will see what happens but it would be nice for us. Mike mentioned he wants to move with Jude because he wants Jude to always know where we are at. I just teared up when he said that but I completely understood what he was saying. Mike also said having something to work on will help him through this current situation.

Jude's a roller coaster but he is a huge fighter. We have had friends and family want to come see him and we have even considered giving him an early 7th birthday party. However I have had to explain to people that Jude looks and acts very sick right now. Seeing him can be very emotional for people and I just do not have it in me to help anyone right now. I believe everyone understands and everyone is doing their best to be supportive. My work is understanding, Mike's work is beyond understanding, our families are there if we need them, and many of my friends just show up with kind words. Mike's mom has been here the past two days and bless her heart she has had a hard time with this.

Mike and I switch off having meltdowns but for the most part we are both pretty calm. We know that Jude's situation can go from bad to worse and from worse to really good. It's just the nature of this lung disease.

Thanks for sticking with us and for all your prayers. At this moment Jude is on yellow and doing fairly well.

Jude's oxygen levels

Yesterday when I left for work I was pretty concerned about Jude. He had ran a fever through the antibiotic the night before and when Charlotte had arrived that morning he was retracing a lot. Charlotte really worked with him and hospice had shown up and they worked with him as well. They got him pretty comfortable but Charlotte said later that afternoon Jude started having difficulties maintaining his oxygen levels. In fact at one point while Jude was sleeping his oxygen went to 63 and Jude woke up panicked and crying. 

When I walked through the door from work Jude's oxygen alarms were going off and kept going off. His levels would range anywhere from 84-92. I remembered that Melinda (hospice) told us that eventually we would probably see a decline that took Jude to a new normal range of the high 80's low 90's oxygen stats. It seems we have hit that decline. We would really work with him with manual CPT, re positioning, suction, breathing treatments, medication, and more to try to get his levels back up. Eventually I took a deep breath then reached over and turned off his monitors. When the night nurse got there I explained what was happening and why the monitors were off. I told her we have switched to spot checking the oxygen about every 20 minutes or if we see a significant change in color or awareness. Then I remembered those lingering words from the doctor "maybe someday you won't need the monitors anymore". 

Jude would look at me last night and he was very calm with his medications. He even gave me a tiny smile under his mask but he is very sick. He is pale and doesn't have much physical strength but he is still a fighter. I told him I hated seeing him so sick and that if he was to tired mommy would find him someday. I tried to hold back the tears but they came anyway. 

Hospice got there about 1:30am due to tie ups with other families that needed their help. I had slept for a bit but not long so I got up with her and greeted her when she got there. Then I went back to sleep. I was up and down all night and Jude was too. I am physically exhausted and it's truly taking a toll on me because I need some good sleep. I am at work and I hate to leave again but I may just have to. Emotionally I am okay........we go up and down but I really am. I understand I have been blessed with Jude longer than anyone thought I would be. Like I have said before he may be here days, weeks, or years but he is here now and that's what matters. So we take it an hour at a time. 

Jude's update

So Jude's pretty sick and we really haven't seen improvement. If anything there has been a decline in his overall health. I believe everyone is doing what they can to keep him as comfortable as possible. At this point I'm not sure Jude is pulling out of it this time but he never ceases to surprise us with his determination and fight. Prayers for his comfort and I believe that in sickness or health he knows he is wrapped in love.