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.