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.