Good nurses, Halloween, and a weekend away

Jude has been up since about 5am coughing. His oxygen levels wouldn't stay up but primarily he was just having a hard time with congestion. I went to check on him with the night nurse and Jude did smile at me. Our night nurse made me laugh because she said I always "sleep walk" in the room to check on Jude and she knows I am just tired. So we lost our weekend night nurse. I explained in a prior blog she just no showed two nights in a row. This made me sad because I really liked her and she seemed very efficient with Jude. However if she could no show on a little boy that is so sick two nights in a row then she probably didn't care that much for him. So luckily the fabulous Cynthia has been filling in and I hope she can continue to do so until they locate a new weekend night shift. We are so lucky that we have had some very good steady and loyal nurses. I cannot imagine dealing with this all the time so a big thanks to Charlotte, Allen, and Candice! I think we are a pretty good family to work for. I have my flaws but don't we all? I am really concerned about having a night nurse the weekend following Thanksgiving. We will be in Houston watching Emily compete and Jude is going to stay at the hospice house. Allen is going to work long shifts to make sure Jude always has someone with him but he will have to have a night nurse there 9-7. 

So it makes me sad that we will be putting Jude in the hospice house for the weekend mentioned but I have finally reached a point that I understand it's what is best for him. Having him ride 5 hours in a car sitting straight up while he gags on congestion for my benefit isn't fair. I sometimes long to have a regular family time so much that I think that interferes with proper decisions. The guilt of not bringing my child with me on a weekend get away also clouds my judgement. However I also owe it to Emily to support her in the one endeavor she has held fast to and to be there for her. It's hard though I won't lie. It takes a lot of mind control to understand the situation at hand. Jude needs a lot of equipment and medical intervention so being in a medical surrounding is what is best for him. So I am going to be his nurse on Thanksgiving to free up hours for Allen to be with Jude from 7am - 9pm everyday. Allen adores him and will take great care of him. 

I have to admit that even after 7 years I still struggle with watching the normalcy in other lives on holidays and vacations. It does sting a little bit. I thought about loading Jude into his wheelchair on Halloween and rolling an oxygen tank behind us so he can participate. Then I stepped back and realized yet again that would be for me and not for him. Jude doesn't need to be out in the night air, he doesn't need to be exposed to other germs, and I know in my heart Jude would rather be at home. So we will celebrate in our on way. 

It's still a struggle. So to the moms and dads that are just receiving a special needs diagnosis know that your feelings are normal. Even after all these years I still struggle some. 

Jude and Emily

Jude has not had an easy week. As soon as I walk through the door from work he starts crying because he wants to be held. I am not sure if it's the weather or the fact he is still battling thick congestion. As long as I hold him and don't put him down he is fine. We have increased his PRN medications but they don't really seem to help. One night when I was holding him he decided to have an accident that went all over me and I actually got a little grin out of him because of that. 

So little has been accomplished at my house this week because of his condition. I cannot really move from my couch but I did sneak in two walks with the dogs. Now Mike's back is out so I really haven't done much but tend to Jude. Luckily Emily has been around to help with the dishes and grab items that I need while I am holding Jude. We are suppose to have a night nurse this weekend so that's wonderful. I really think he needs a nurse with him overnight to make sure he is as comfortable as possible. We are having a bit of an issue with his medical supplies with insurance. I am hoping that gets taken care of soon and it drives me crazy it's even an issue. One of the problems is he is suppose to see his primary healthcare provider which was his prior pediatrician. However since going on hospice we have only seen the hospice doctor. This is creating havoc within the insurance department and they keep denying items. Luckily we have Charlotte and she is really pushing to make sure everything is handled. 

Emily is back from Vermont and is toughing out her junior year. She is getting good grades but being a teen is not easy. Yesterday she got a picture from the Miss Dallas crew so she could print out some autograph cards and it made her day. She loved it and I am so proud of her for sticking with her goal. I have mentioned before that competing for the title of Miss Dallas teen was her third try. I honestly would have given up! Yet she kept pushing forward just like she has for Texas Teen. She will compete for that title the weekend of Thanksgiving. 

Although we are receiving much needed rain here in TX we are now facing some flash flooding. The outer rain bands of hurricane Patricia are affecting our area. Since the hurricane hasn't hit land yet I am wondering how much more rain we will see. I am also praying for all those in Mexico and other areas that are in the path.

So from us in soggy Dallas Texas we wish you a good weekend! 

No nurse equals The sleepies

So on Fridays and Saturdays Jude's night nurse arrives at 9. Last night when she had not shown by ten we knew something was wrong. We couldn't reach her via phone and neither could the nursing agency. To date she still hasn't been heard from. I'm praying she is okay but if she is I am confused. I think we are a good family with a clean house and a beautiful little boy. I would think it would be good to work in our home so to have someone no show confuses me.  The nursing agency has not found a replacement. As much as I love Jude I feel pretty defeated this weekend. I am still working on getting well and just wanted to get good rest but that's not happening. Luckily Allen was here during the day so we did get to catch up from not sleeping last night this morning. 

Jude is doing pretty well but his tummy is still sounding the alarm and his cough is pretty bad. He is currently sleeping which I hope doesn't mean he won't sleep tonight.  I am sitting by his bedside and it will be mommy and Jude time tonight. Emily is in Vermont with her boyfriends family visiting him at college. I am praying she has a safe flight home tomorrow and I know she is having a blast. 

Well have a great weekend everyone. 

Jude's pump

Sorry I have not posted but it seems the children are trying to off their mom. I came down with the sickness they were passing around and it was not an easy one to tackle. Luckily we all seem to be feeling better. However Jude is still running a low grade temp when I get home and he has been rather cranky this week. He has been having tone issues and he just wants to be held. 

Last night while holding him I heard a low pitched alarm go off that sounded like an ambulance. I wasn't sure what it was but since I knew it was to faint to be a real ambulance I started wondering if maybe it was coming from the Balclofen pump is Jude's tummy. Luckily the pump is not full of Baclofen so I knew it wasn't a critical emergency like it could have been. So we turned everything off in the house that could possibly make noise and soon we heard the alarm sounding from Jude's abdomen. So I have a call into neurology to see what their suggestion is but my guess is that Jude will be taking another trip downtown. 

When calling the doctor's office this morning I started getting angry again about the pump. I know it's not their fault and they were just trying to make Jude's life easier, but that is not what happened. Since that pump placement our lives have been in a lot of turmoil and the pain that Jude suffered makes me upset. I took a deep breath before connecting to the nurse and reminded myself the issues from the surgery were just a fluke.  I then calmly explained the alarm was sounding and then answered her questions. She said she wanted to consult with the doctor before advising us which way to turn. 

Updates on the situation

Jude is doing better today but Mike's father is not. I have not posted in detail about this but Mike's father had complications from surgery. Just when we thought he was improving there have been a few set backs. I feel for Mike and his family and I can see the stress in my husbands eyes. On top of having a very ill son he now has to face the challenges of helping care for a sick parent. I have been in this situation and making major life changing decisions for someone elderly is taxing. There are financials, living situations, emotional changes, and more that is impacted. So I am standing back watching and praying for everyone involved. I am hoping for improvement but realistically understanding the situation that is developing. Mike's sister has been amazing during this whole situation and that woman deserves about 15 million bubble baths and lots of wine! The good things is Mike's parents have lots of people that love them. 

Jude smiled at me this morning before I left for work which was great to see. He had ran a low grade fever throughout the night but I asked the nurse not to give him anything unless he was uncomfortable. I wanted to fever to do it's job on top of the antibiotic that he had been prescribed. I am hoping that I see even more improvement when I get home today. Emily finally went back to school today and she is on the mend as well! 

As always we appreciate everyone keeping up with our family and all the prayers! 

A sick little Jude again

Same song different verse :(. 

So Jude is really sick. About 3am his oxygen levels just wouldn't stay up even at 10 liters so I eventually asked the nurse to just spot check his oxygen levels. His color was decent and he was not in respiratory distress so we just let him sleep. He did have a horrible cough and my understanding is the cough has been pretty consistent throughout the today too. Hospice is on their way to see him again and they are taking him an antibiotic. Emily was diagnosed last night with bacterial bronchitis so I have no doubt that's what Jude has. We just want to make sure his hasn't turned to pneumonia or hope it hasn't already. I have a sneaking suspicion this was brought home from the hospital last week. Although hospitals can provide great care they tend to be laced with germs and infections. 

So please keep Jude in your thoughts. I will update more when we know more. 

Kids down! Kids down!

Poor Emily has been sick since last week and doesn't seem to be improving. She was seen by a doctor Friday night who prescribed her an antibiotic but with no improvement I believe she was misdiagnosed. So I will be taking her back to the doctor at 3:30 today. 

In addition to Emily being sick Jude isn't feeling well either. I noticed that he was sleeping a very extended period of time yesterday which indicated something was going on. This morning he woke up with a seal like bark and finally coughed up a large amount of congestion. So we have hospice going to visit him today. However if Emily has something viral then that's probably what Jude has and viral just has to take it's time to work it's way out of the body. I did not like the way his cough sounded at all so I am hoping his body can fight this appropriately. 

I was a little frustrated that I would have to leave work early to take Emily to the doctor. It always seems I am leaving early but since I just miss an hour here or there I still haven't exceeded my allotted number of hours for sick days/time off. So then I began to think that it would be nice to just take a day off without anyone sick but I slapped myself for being negative. The kids may be sick but I have wonderful children. I may have to take her to the doctor but I am blessed to live in a country that has great medical care around the corner from my house. I have a car to get me to and from work and the doctor and a nice house for my kids to stay in. I have the means to get their prescriptions, juice filled with vitamin C, and blankets to make them feel better. We are the lucky ones. 

A quick little update

So Jude had a terrible day/night on Monday and we were growing concerned there was an infection or something happening due to the tube mishap. We did discover the area around the tube placement was very red. Jude was in so much pain that nothing would control the situation at hand. Hospice came out that day and requested that we give pain medications every few hours to stay on top of the pain so he could rest. This seems to have worked because Charlotte said he is having a much better day today. 

So I have been very busy lately and it is becoming overwhelmingly exhausting. I try to keep work and my personal life separate but sometimes being so busy during the day absolutely wears me out for home. I am also struggling again with people complaining over first world problems. When did so many people become so concerned about designer labels and other materialistic items. When did it become okay to throw a huge hissy fit over those labels? I don't know. I guess to each his own but I find myself a bit frazzled and frustrated today with certain situations. When I hear people complain about such frivilous items I thank the Lord for Jude. He has taught me what's really important in life and to embrace every step of our path together. Jude is a great teacher. 

and the little ambulance goes weeee wooo weee wooo..........

I am just now getting a chance to update from our adventurous week - weekend. Mike and I got to bed rather late on Thursday night only to be awoken by a startling knock at our door around midnight. Our night nurse was upset and said she had accidentally pulled Jude's feeding tube out. Jude has a GJ tube which means a portion of the tube goes into the stomach and the other part into his intestine. As she was putting him back into his bed the port of the tube got snagged on the side of the bed and was ripped out. Jude was screaming, she was upset, and Mike and I just looked at each other. Mike said "Mic key button". I replied "Yes... It should be in his room. You get that I will call 911". Calmly I called 911 and Mike placed a spare button in the hole in Jude's tummy to prevent it from closing up. There was a debate between Mike and myself on whether we should actually transport Jude but I decided it was a go. From a mothers stand point I wanted to make sure he was okay and get the procedure done as soon as possible the next morning. I knew they couldn't replace the tube in the ER since it's an extensive process. I wanted him to get back home as soon as possible. 

The sweet nurse followed behind the ambulance in her car and I knew she was worried. Once we got to the ER they checked to make sure Jude was okay and then the nurse left. Jude and I finally got to a room about 6am. We then got about two hours rest before we were up and going again. The hospital said they had a lot of procedures that day so they were happy we were there early. I actually got to sit in on the procedure with Jude and he was literally an angel. He barely even flinched when they laced the long tube back down his little body. Once we got back into the room he was very happy. I think he was just happy we got to spend some quality time together even though it was in a stressful situation.  

He was such a little trooper. After the procedure we had to obtain medical transport home and that proved to be difficult. We originally had a full medical team with teddy bear transport lined up but there was a critical situation they were rerouted to on care flight. So then I called hospice who helped get Med Star lined up and we finally rolled into our house about 7:30pm on Friday evening. We were very thankful to be back home. When the nurse got there at 9:30 Jude and I both went fast to sleep! 

I did have to add a note to this blog before I closed. Throughout the stay at the hospital I kept hearing "you brought so much stuff" but I would just giggle. The initial time I heard this was with ambulance  that picked Jude up. Mike and I are so well versed at emergency situations that we literally move like a flow chart. One person packs meds, one packs diapers, the parent overnight bag, etc. This is the system you follow to make sure you are well prepared regardless of what situation may pop up. When we initially got into ER room the ambulance crew began to unload Jude from the stretcher. The nurse asked for Jude's medications so I handed her his medication list and explained we brought all his meds as some aren't available from their pharmacy. I explained I had his diapers because his size are not easy to find in the ER and then pulled out some other supplies I knew would be needed. Then turned to the nice EMT and said "This is why we have so much stuff". He just smiled and we wished each other well as he ran off to another case. 

So I told a fib Jude...........one more ouchie IV stick but hopefully no more! 

Quick update

Our lives are pretty much marching on the way they normally do. Jude will have good days and bad days. Yesterday evening was not a pleasant one and he was very toned out and upset. I went through several medications, re positioning, and holding him before he was finally comforted. We have a great new night nurse that seems to really care for Jude and she really works with him during the night. Generally when I get up to check on him she is sitting right by his bedside and sometimes even holding him on the couch.

So in regards to the house situation if we don't have a contract on our home by next Friday then we are not going to be able to move to the house we found. There were some stipulations that will just prevent them from selling. I have such mixed feelings. If we don't sell we know we are in a good spot for all of our nurses and the route is one Emily knows well. However buying the fixer upper with the pretty land gave Mike and I something to look forward to. It gave us something to shift our focus to for awhile. I keep saying if it's meant to happen then it will happen. Maybe this weekend we will have someone walk in and give us a cash offer.

It's been an extremely at work so I don't have long. Have a nice day all.

A sad little Jude and a heck of a morning

Yesterday evening when I walked into the house form work poor Jude was crying in pain. I felt so bad for him. Charlotte said she had really tried everything and wasn't sure what was bothering Jude. I decided I would pull him out of his bed and hold him for awhile. After 15 minutes he started to calm down and eventually fell asleep in my arms. I sat there watching a movie and held him for awhile so he could sleep. Eventually I tried to move him to his bed so I could get some dinner but he woke up very upset again. It was so sad and so hard to watch him upset with his little bottom lip quivering. We had a new night nurse come and orient with him last night and I felt terrible for her. I explained that she had walked in on a bad night with Jude and we went through everything I would do in the current situation. She was very sweet and pulled him out of the bed and started to hold him. He still kept crying and was turning his head back to look at me so I asked the nurse to review the MARS (medication list) and other information while I held him. The evening continued like this until about 2am when the nurse got Jude to fall asleep.

About 5 we heard Jude retching so I got up to check on him briefly. Mike then checked on him and the nurse informed him Jude had thrown up formula.........no bueno! Jude had a G/J tube and formula should not be in Jude's stomach at all. Last week I noted when he vomited that I also smelled formula but I thought maybe it was a fluke. I should learn to trust myself more when evaluating medical situations with Jude. Sometimes I just don't speak up loud enough. So on my way to work today I called hospice and requested transport to Cooks. While hospice worked on transport I called Cooks to see if I could set an appointment with the doctor. While they tried to get an appointment I worked on getting registration to allow Jude to arrive with Charlotte via a medical release from us. In the midst of this the nursing agency called to get an evaluation of the nurse last night. It's been one huge cluster of a morning. Luckily everything fell into place! Hospice is having a Med Star ambulance pick Jude up at 11:45 to transport he and Charlotte to Cook's. The ambulance will then wait an hour for Jude's procedure and transport them back home. What we will pray for is that there is nothing that would require surgery and that this is an easy fix. I am also praying this was not caused by the same negligence of mistreatment associated to the prior party in question. I am hoping this is a fluke. However the button is rotating and it should not move.

So it's been an adventurous morning combined with more car issues and high frustration levels. Like my friend Paula said "do you ever have a normal morning"...lol!

Weekend update

We didn't have a night nurse on Thursday so Mike took off work Friday so he could care for Jude. We then didn't have a night nurse last night so I stayed up. I have NO idea how I did this for six years because I am exhausted today. When a normal night nurse would go home to sleep we are going into work. However Jude was actually pretty good. He didn't fall asleep until about midnight and then he needed medications at 1am and 5am. He did vomit about 5 something but overall he was very sweet. He really appreciates when someone loves on him and cares for him. He craves human touch and gives you big smiles back. 

Tonight we have a new nurse that is filling in and I hope she is good! We also have another nurse starting the night shift tomorrow. I am hoping we can find some good reliable people that are sweet to Jude. I loved his nurse Cynthia and she will still fill in PRN at night but she had to adjust her schedule for her children. 

Jude stayed overnight at the hospice house on Saturday so we could show our house. It was a chore getting him up there but he loved it. Nurse Allen went with him and stayed during the days and Cynthia stayed with him at night. Allen said all the nurses just loved him and doted on him and Allen was so impressed with the facility. It was strange not having Jude with us overnight but it did give Mike and I our first night alone together in 5 years. It was needed.

Hopefully it will be a good week! 

Don't ever hurt my child!

I am having issues starting this blog because I am not sure how to word it to protect everyone's privacy. I also don't want to say to much but I did want to say something. We found out someone hurt Jude this week and it breaks my heart. My sweet little boy who does nothing but love people was hurt by someone who obviously has a mean heart. I cried yesterday wondering how someone could be so cruel and still hope that I am wrong but I know I am not. 

Mike took today off and stayed up with Jude last night so I could sleep. It was the first night in a while that Jude didn't have oxygen alarms ringing constantly. For the most part it was quiet and peaceful and I slept fairly well. Mike is tired today but luckily he didn't have to go to work. He is at the house with the great nurse Charlotte who is carefully tending to Jude and giving him extra love. 

I am really going to have to search for my forgiveness button on this one. 

Stupid first world problems

Yesterday was Jude's 7th birthday. He yet again defied that odds and has made it two years past what the original neurologist predicted. We celebrated the day in a bitter sweet manner. I was very grateful Jude was with us and I held him close to me for a long time last night. He would give me cute smiles and I would snuggle and kiss him taking in the smell of his sweet hair like I always do. However I have to admit I did have a bit of mourning time yesterday too. While at lunch I witnessed several little boys running and playing and I felt a twinge of sadness for Jude and for our family. See ladies.........even after 7 years those feelings still creep back up so know it's normal. Jude is giving the new night nurse a run for her money with his oxygen issues and other problems throughout the night.  I know she is exhausted when we get up in morning. I normally wander out a few times a night to ask how he is and even though he is having issues her responses are always nice. Generally I will get a "wellllllllllllllll he is a bit better now".  

The house situation is growing into a monster. It's been frustrating with all the new guidelines put out by the mortgage industry. So I am not sure what will happen but I keep telling myself it's a first world problem and not to worry about it to much. Lately though the first world problems are beating me down. For instance my check engine light came on today and we are suppose to leave this weekend to Houston. I just had the car checked out so I have no idea what's going on. So I am trying to put together how we are going to get there this weekend. I had Jude set up to stay overnight at the hospice house for the very first time so Mike could go with us. We were also going to bring the dogs. We may just fly or have Jude stay at home with his nurses and a friend. I will figure it out but it looks like we will be taking Mike's car and leaving the dogs behind. 

I need to figure it out today so I am holding off until about 3pm to make any final decision. 

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.

A quick update. I am overwhelmed so forgive any grammer issues.

The hospice nurse and the pulmo turned out to be 100% correct!!! I didn't mention it in my prior blog but when the nurse mentioned Jude was panicking like his COPD patients he said he thought Jude had mucus plugs. He believed Jude was panicking trying to expel the plugs so he could breathe and he was right. The day nurse had a hard morning with Jude but an okay afternoon. She mentioned she pulled out two large plugs from Jude's throat.

Tonight during my shift Jude started becoming very toned out and upset so I treated his pain with medication.  Then Jude started coughing violently and ended up turning a horrible purplish blue. Sweet Gina was with me and I was yelling commands that she was following to the best of her ability. The vital machine was screaming with sirens as I yelled.. RAG! SUCTION! SALINE! MASK! NO WRONG MASK! Gina followed while holding her breath. I was desperate and Jude wasn't breathing so I grabbed him and sat him up grabbing the suction and forcing it down his throat to grab the plug. Suddenly Jude threw up the biggest mucus plug I have ever seen. Poor Gina gagged a bit and Jude was so exhausted he started closing his eyes.

The night nurse is here now and we are in bed. We are really tired and Jude is too. The question is if this is just a mucus plug issue or if his lungs are breaking down creating thicker secretions and a build up of these life threatening plugs. I was scared tonight and I am so thankful Gina was with me. 

This is an overwhelming situation but it's unbearable if you are alone at the time something critical happens.

Jude's update.

Jude did fairly well between 1-4 last night. However at 4am it was consistent oxygen issues. The alarms went off so much that I just got up with the nurse and tried to help position Jude. When Charlotte got there at 8 Jude was still having issues. Mike called in and I called in late to work so we could try to get a little sleep and make sure Jude would be okay. Charlotte really worked with him and when I left at 10:30 he was sleeping soundly and his oxygen was finally holding. 

I am not sure what Jude's situation is except questionable. One day he seems like his normal self and then the next he is in respiratory distress. Jude always finds a way to rally back and of course we want Jude with us but we don't want him to suffer. He is very pale and Charlotte thinks his little body is just tired and needs lots of rest. 

So we will see how Jude does when he wakes up and how he does tonight. They do have new medication schedules and no one is holding anything. If he needs it he is getting it. It's a balancing act because you do not want to suppress his system anymore than it already is but we also don't want him in pain. 

Thank you for all the prayers. I am asking for prayers for Jude's comfort and prayers for Emily's safety. Also please pray for our dear friends whose father had a massive heart attack yesterday. He is currently in ICU. 

Jude's new situation

When I got home tonight Jude was not well. He was very toned out and after Charlotte left he only continued to deteriorate. Soon Jude was red faced, arched back, and screaming in pain. This went on for hours until I called hospice. They couldn't even hear what I was saying but only heard Jude screaming in the background. They could barely make out what I was saying and just replied "We have someone on their way". It took a bit but a nice saint of a man showed up at our door and really helped Jude. After several medications Jude was more calm and lying comfortably in his bed.

The nurse told me that he normally works adults and that Jude reminded him of his COPD patients. He said that the look in Jude's eyes is panic because he cannot breathe. That's probably giving him anxiety which is causing other issues. For instance Jude had a massive seizure tonight that the nurse witnessed. This all correlates with what Jude's pulmo said that Jude is panicking due to his inability to breathe properly. HOW AWFUL! ugh. He said Jude's lower lung lobes sound terrible and he suggested keeping him medicated for comfort.

So I told Mike that the truth is that even though I wrote that poignant blog about putting Jude on hospice I never really grasped the reality of it all. I don't want to lose him, Mike doesn't want to lose him, our families are still hanging on too. We keep Jude hanging on. We keep Jude fighting..........it's us and it's the truth. I really believe Jude fights for us. I talk to him sweetly each day encouraging him and I won't stop that. However............Jude's in pain and he needs comfort. I need to stop worrying about medications and give him what he needs based on the doctors assessment. We all know children with various disabilities but those issues combined with lung disease are just heart wrenching at times.

I will talk more on this tomorrow but I just wanted to give an update.

The house debacle

I have such a pretty house! I do. It's a two story home that we have done extensive remodeling too. It has beautiful flowers that bloom in the front and a gorgeous butterfly garden in the back. 

We now have laminate floors that make it easy to push Jude around on and we have converted our master bathroom into a shower that will accommodate Jude. A lot of people pitched in to help us make that shower possible. We are now in a much better position financially and have worked more on the house making it very nice inside. 

We have added floors, new appliances, painted the entire house, added texture, ceiling fans, and so much more. We are proud of it. The only thing I really don't like is that the street is so congested with cars due to us and the nurses. I also miss my bath tub. 

So why would we think of selling? A few reasons I believe. First as discussed before the profit we would make would literally pay off all of our bills except a mortgage but there is more to it than that. Our amazing journey with Jude started in 2007 when I found out I was pregnant. That's 8 years that we have been in our home learning how to walk a different path. I love being at home but sometimes being tied to home can become a bit stressful. Mike and I had big dreams when we got married. We wanted two children together and we wanted to move somewhere with land. All of that has been put on hold and for good reason. So I guess we finally decided to look at our lives and make a step for us. Our plan was to find about an acre of land with a home. We knew if we stayed close to our existing house we would have to remodel an older home. To get a new home we would have to go further out.  I stressed over this because I didn't want to add any stress to Jude or our nurses for our selfish wants. It's been a battle of my mind...........and yesterday we found a house we thought we could work with. It's the right price, it needs work but we can do it, and Jude would have his own "suite" basically. He would even have an area that's perfect for storage and a place for a desk for the nurses to write their paperwork at.  It's about 15 miles from our house so it's not that far but it's still a further drive for us and the nurses.  It's up a winding road that leads back into these gorgeous woods that remind Mike of Colorado. It's peace for him I think and a blank canvas to work with. It's marked very low because it needs work. It even has a little guest cottage we could rent out but again.........but I just don't think it's going to work logistically. 

I am not sure why I am writing about this on my blog. I guess I needed to hash everything out that is rolling through my mind in words.  Such first world problems we have that I am worrying about moving from a beautiful home to a home that will eventually be beautiful too. I guess maybe it's nice to worry about something new for a change. Something new to focus on after so many years can be healthy I guess. Even if I decide to just stay put it's been nice coming up with all these grand plans. 

Jude's doing alright. He did start running a slight fever again last night but he was sleeping well this morning when I left. I will check in on him soon. 

How we feel

In normal Jude style he is a fighter and after a long terrible weekend he is looking better. We were all a bit emotional and exhausted this weekend. At one point Mike just laid in Jude's room taking everything in and didn't emerge for awhile. He finally told me in the car that he was happy Jude was looking better and then at the same time he wasn't happy. He said he doesn't want to spend years watching Jude got through the torture of trying to breathe. That's exactly what that was in the early morning hours.........torture. Watching Jude try to take air in and watching his stats plummet was AWFUL! It was terrible for Jude, it was terrible for us, and it was just a sucky situation. 

The positive part of this is Jude is smiling today and although not back to his normal self he certainly looks better. Mike and I were watching the movie "Impossible" last night. If you haven't seen it it is an amazing story. When the main character was being churned by the sea after the tsunami hit I told Mike "that's how I feel this weekend". Like we are on spin cycle and it won't stop so we can catch a breath. I can only imagine how Jude feels but he manages a smile whenever he can so he is our inspiration to be positive. 

We distract ourselves with the possible move and looking at homes. We are blessed to be able to eat out at lunch a few times a week and we have each other which is what matters. Emily is home safely from camp and Jude seems to be conquering pneumonia (yet again) so we will look at this positive. However ........... sometimes you just want to throw your hands up and shake your head for a few minutes. 

A very hard overnight

Jude had a very rough night and morning. About 4am I kept hearing Jude's alarms go off so I got up to check the situation. Jude's heart rate would rise to the 160's and then fall quickly to the 50's. His oxygen was ranging from the low 70's up. We called hospice and they dispatched a sweet nurse named Pam. Before she got here the night nurse and I worked with Jude. She gave him breathing treatments; cpt, and more. Jude's hands were so pale from the lack of proper blood flow to his body. It was scary and sad. Finally Jude stabilized and I even got a tiny smile but he was still very out of it. We are all exhausted. The hospice nurse confirmed Jude was probably near cardiac arrest and she praised our night nurse for her hard work. She said this is a decline and she would be calling the doctor to update her. Now I'm turning off my phone and going to sleep. I may be asking someone to pick Emily up when the kids return from camp today.

Jude's update

Jude had a very hard evening with Mike and I yesterday prior to the nurse arriving. The only thing that could be done to make him feel better was to hold him. I told the nurse when she got there that Jude might want to be held but I don't think that ever happened. I know she worked with him through the night though. About 4am Jude started throwing up again and threw up three times that morning. So hospice is going back to see him. I am not sure what's going on but I am still leaning towards pneumonia. He had a slight temp this morning but it was a very mild temp. We will see. 

I am exhausted today. It's been a very busy week at work and with the stress at home I am just worn out. It just suddenly hit me around noon today and I am ready to go home and nap. I was going to blog something inspirational but my inspiration is to pooped. 

Jude, the house, and camp

Jude is pretty sick again but it's a guessing game (again) on what's going on. He is not running a fever but he has had issues with vomiting and is having oxygen issues. I had flashbacks to when I took him into Cook's and he vomited and then coded. So scary! Nurse Charlotte is with him and I know he is being tended to in the best possible manner. Hospice has also been out to see him and they are on stand by if something is needed like an antibiotic. He is still mustering some smiles and is always happy to see us. 

We found a house that we really liked and that would work well for Jude. It needed a bit of remodeling but it would have worked perfect. It had big lush trees, a carport Jude could sit under outside, and more. We debated on putting an offer on the house and listing ours because of Jude and because of other factors. Today we finally decided to take action and.........ready............someone put a contract on it yesterday. I am bummed today and the "well it wasn't meant to be" doesn't help so don't say it please. I will have a day of being bummed and then I will be alright and decide if we move forward or just stay put. 

Emily is at Young Life camp and it's odd not hearing from her everyday. I got a bit teary yesterday thinking of her going to college soon. I guess life marches on. 

An update on Jude and some pictures.

Jude is doing pretty well. He seemed to have kicked the butt of whatever he had again so he is yet again our little trooper. He is still having some oxygen issues and thick congestion but he looks so much better than he did.

My friend Sarah brought by the CD of Jude's photo's today that she took. I told her I love the photo's but hate my fat. Anyway, I thought I would share some of the ones that touched me the most. 

These are the moments we will always remember and cherish. 

I am still torn on the moving situation and I have been dreaming about it a lot. I am NOT one for change. However I talked to a friend that does property investing and he seems to think the property we are looking at would be a really wise decision. So we will see. I am just taking everything a day at a time. The hardest part for us was painting over Jude's red room. Mike and I couldn't do it so we hired a nice man who did. Mike said "I would prefer to move with Jude vs have to move because of Jude (losing him)". I also realized that Jude was growing older and in a "normal" situation his room would have already changed themes. So I took a picture of his wall so I could frame it.  Maybe next he can have spaceships, dinosaurs, or a Cowboy theme.