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 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!
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.
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.
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!
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.
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.
