The Update

It's been an odd few days filled with negativity but saved by joy. On Friday Mike and Nurse Allen took Jude to the hospital to have his feeding tube checked. As I stated before the tube started to become difficult to flush the day after he returned from having it replaced. I wasn't sure if they would find another issue with his intestine or what the outcome would be. I was surprised and angered when I heard the doctor found nothing. I blew up at Mike asking him why he didn't demand that the hospital fix the potential issue. This in turn created a huge dramatic fight between us. See people........it's not all roses and sunshine. We have fights and arguments due to the mounted stress upon our shoulders just like any other couple. It wasn't fair of me to demand answers from Mike when he and the doctors were only doing what they thought was best. This drama led me to need a bit of a break from the medical world that surrounds us. I just needed a time out but I didn't really get that.

I think one of the issues was that I had a realization of the problems at hand on Friday. Mike explained that the nurse at the hospital explained to him that once you have an intussusception you have a high chance of getting one again. So I looked at Jude and realized I have invested so much time and concern into his lungs and that it may not be his lungs that are the most vulnerable. I guess it threw me for a bit of a loop but I was okay with the situation and needed a bit of quiet time to process my thoughts. A reminder from life that you shouldn't worry about that which you cannot control.

Saturday we had a nurse throughout the day so we went to my fathers house for an Easter celebration. My thoughts bounced between having a relaxed fun time to worrying about Jude. However it was so nice to be surrounded by family and to see Emily light up. She flew a kite and had the best time. My heart was happy.

When I got home Jude was perfectly fine and happy to see me.

 

So it was overall a good weekend. Today I had to run back over to pick up some items I left at my dads house and we had a discussion about the miracle of Jude. How he has blessed and touched so many people. We discussed my current effort to turn my blog into a book and how he may in fact even reach more people. His light, happiness, and fight is so inspirational. Plus he teaches so many valuable lessons. In fact more than once this weekend I have said. "I have enough going on in my own life to ever judge or make assumptions about someone else's life." A lesson Jude taught me and I am thankful to him.

Jude's Feeding Update.

Jude has another appointment at the hospital on Friday at 11. Basically the feeding tube is hard to push again and last night his belly was distended. He was crying on Monday but he is much better now and smiling. The doctor said if Jude gets worse it's an emergency and to get to the ER immediately. I hate Jude has had to go back to the hospital so much because that was never out intention. We wanted him to be in peace at our home but we cannot allow him to be in pain. 

My guess is they will remove his current feeding tube and put in a G button again. I never thought feeding issues would be such a problem with Jude again. Nurse Charlotte has marked Jude's stomach and is keeping track of any swelling. 

The Feeding Tube

As a follow up to my blog on Wednesday we did take Jude into the hospital. Well myself and the paramedics took Jude the fill in nurse was suppose to follow us to the hospital but she never showed up. I would have been fine if she explained she was going to go home but I was rather irritated she just left me wondering where she was at the hospital.  The medical staff did a sonogram and said they no longer saw the intussusception. This was great news but right after they did the sonogram Jude started crying and he never really stopped. He fell asleep for a bit in the ambulance on the ride home but that didn't last long. I had noted that Jude had not urinated all day. So finally we called Hospice and as usual they arrived promptly and they placed a catheter in Jude. This seemed to be the source of the problem and thankfully Jude stopped crying. 

Jude did vomit a couple of times yesterday and we noted his brand new feeding tube is now a bit harder to flush. This makes me believe they have missed something and we will probably have to go back to the hospital again. My guess is they will eventually take this tube out like I stated before and we will go back with the G button. I tried to see the bright side last night and pointed out that if Jude does go back to a G button we have a night nurse to help with vomit at night. We used to not have a nurse and Jude would aspirate prior to us getting to him. I also pointed out that we can change the G button at home vs. the G/J which is surgical. 

Jude was also started on a broad spectrum antibiotic to help the pain of the pneumonia. He is pretty sleep today but otherwise he is doing pretty well. It's been a stressful week and we are all running a bit low on patience and cheerfulness so bear with us. 

If You Ever.......

If you wonder why we're not at work 
If you wonder why we don't get out 
If you wonder why we are sad 
If you wonder why we are glad
If you wonder why we covet sleep
If you wonder why we haven't texted back
If you wonder why we haven't called
If you wonder why we haven't played our turn.
If you ever wonder why we seem uneasy
If you ever wonder we seem content
If you ever wonder the hospital terms that roll off our tongue
If you ever wonder why sometimes the hospital is a must
If you wonder why none of these feelings mean much because Jude's feelings always come first!
If you wonder at all then I am so glad you do because it means you don't have to understand it and I am thankful you don't! 

Be grateful for all you have because we are. 

Jude's Problem

So here is where we stand. We were hoping the change in tube yesterday would resolve the issue but unfortunately it didn't. At around 9pm last night while changing Jude he vomited violently and I have no doubt aspirated right into his lungs. About thirty minutes later he started looking pale, his smile went away, and he started running a low grade temp. He continued to vomit some and he did so with the night nurse too. 

So this morning I put a call into Hospice who is going by to see him today. I then put a call into the GI to see what their thoughts are. Basically they believe the intussuception is still there and probably has significant swelling. They want to bring Jude back in to do a sonogram of the intestines. If they see swelling then they will be taking the G/J tube (goes into the intestine and tummy) out and putting a G button (goes only into tummy) back in. If you remember the reason we put a G/J in is because Jude kept vomiting with the G button and would wind up with aspiration pneumonia. Basically they explained this is not the best situation for Jude but they don't want him lying in bed uncomfortable, vomiting, and letting his intestine die. 

So I am waiting on the hospital to call back to set an appointment to do a sonogram. We will have to set transport up to take us back out there. So I will update everyone. Also Jude's chest X Ray came back yesterday with no definitive answer which is what I suspected. However they did say there has been an increase in lung loss and that he either has an edema or aspiration pneumonia again. However the X Rays are so overcome with disease that it's hard to tell. 

A Trip To The Hospital And Jude's Appeal

It's been an awful day. It could be worse but it's been stressful. It's not worth going into all the details but trust me. Jude was transported today to the hospital to have his feeding tube replaced. Since he was vomiting this was our first step to try to find a solution to the problem. I was not able to attend the visit so Mike and Nurse Alan took Jude. Transportation did not go smoothly like it normally does but Jude got there okay. I then talked to the doctor later in the day and he explained to me that Jude had an small bowel intussuception caused by the GJ tube. Now bear in mind I am not a doctor but my understanding is this is where part of the intestine is pulled (the tube) or collapses into another part of the intestine. The doctor said this is a rare but known complication of the GJ tube. Jude always hits those rare marks. Anyway, the sad part about it is the situation is very painful and to me it explains why Jude was so upset last week but doesn't explain him being so happy this week. However it does explain all the vomiting. 

The doctor said he hopes that the procedure he did today will control the problem but if it doesn't we have to come back for a sonogram. He then said they would either shorten the tube or go back to NG tube feedings. UM NO! I explained that I hope today's procedure it successful because I do NOT want an NG tube again. That was a nightmare. He replied, "Yes that's a good word for them." He then asked me to please call the GI at Cook's. He had been busy and wanted to make sure the GI was in the loop so I did so. Radiology also completed a chest X Ray on Jude today but I highly doubt it will show anything other than white chronic lung disease. I believe we just look for symptoms now versus reading an X Ray but I could be wrong. 

So now the interesting part. While dealing with work, home, Jude, and more I was also dealing with the health insurance. I had received an explanation of benefits and after combing through the lengthy pages of summarized payments to various medial facilities I saw the nursing wasn't paid yet again. So I put a call into the health insurance company and I was told that Jude was once again denied insurance benefits. Let me explain. Mike's employers picked Aetna as their provider. Aetna uses another company to take care of all their billings, summaries, and benefit explanations. That company and the employer then use even ANOTHER carrier to decide medical necessity. We received a letter from the medical necessity company in January explaining that all private duty nursing from 1/1/2016 - 12/31/2016 had been denied for Jude due to no medical necessity. Per my prior blog I went through a lengthy appeal with this company and won. So on 2/22/2016 we received a letter stating the private duty nursing from 1/1/216 - 12/31/2016 had been approved. That's great...........however Jude capped out on Nursing in July 2015. So therefore this company subjected us to a stressful ridiculous appeal for no reason. They have ZERO explanation and even confirmed they called the health insurance on 6/9/2015 and 1/22/2016 to verify Jude had reached his lifetime cap. So to a normal consumer who is reading an explanation of benefits it looked like Jude capped for the year in 2015 and in 2016 they were challenging the nursing. Therefore we appealed and won.  Nope, Jude's capped for a lifetime and all that stress and emotion was wasted for no reason. It's unacceptable and something needs to change.

Again we are lucky that Jude has a Medicaid backup but the health insurance processes are ridiculous.  

A Restless Night and Jude's Issue

Story of his life, Jude is sick but smiley. Yesterday he started vomiting and really never stopped until we gave him Zofran. The medication would last about four hours and Jude would start all over again. He is also vomiting what looks like infection and he is running a fever. He is pale but again he is still smiling. So I am looking at this like it is probably the start of aspiration pneumonia again. However I think this started as a feeding tube issue. I believe his feeding tube has come out of his intestine and wrapped into his tummy. This is causing Jude to vomit and bringing up what's in his lungs too.

We are taking about 50 ml of residual out of the G (tube feeders will understand). Jude's diapers have greatly decreased and his urine is dark too. It was a very long night last night and I just couldn't sleep. just did fairly well but his oxygen kept dipping and he had a horrible retching cough. So I made several phone calls this morning and the plan is to get Jude in at 10 am tomorrow to change his tube. We will then wait and see how he does to determine if he needs antibiotics for possible aspiration pneumonia. They wanted Jude to go through the ER but I explained he is on hospice and our job is to keep him comfortable. Admitting him would not make him comfortable. So they helped us and we are getting transportation set up to get him to the appointment in the morning.

Staycation, Jude, and Being a Special Needs Parent

Jude is doing as well as can be expected. The weather has wreaked havoc on his system which means we are dealing with tight muscles, pain, and crying. We have continuous oxygen issues with him in the evening but I can normally get that under control before the nurse gets there. Last night he was crying again when I got home so I gave him some morphine and he was finally very happy. I hated watching him just lay in his bed so I sat him up to hug on him and that set off a chain of events. He began vomiting, then choking, and then vomiting more. Once I got him cleaned up and settled I turned around and said, "No one touch the baby!". Yes, he is still my baby. 

Mike and I had finally starting looking at planning our mini vacation at the end of this month. We started researching places we would like to go and found some hotels that looked inviting. We had set forth a plan and secured help with my friend and Emily covering Jude until the nurse got there each night. Then the nursing agency called and said the normal weekend nurse had requested off 4/1. Then Emily came to me and said her play had been scheduled for 3/30-4/1. Then just more shit kept piling up and I realized it's just not going to happen and I am okay with that. The reality is that Jude's care is extremely complicated and it's very difficult to leave him with anyone other than his regular nurse. We also rely on individuals that are coming to a job each day and sometimes things happen to prevent them from making it to work. I don't want to be hours away and have Emily stuck without a nurse to help her with Jude. That would be horrific. So I realized that while Jude is with us he needs our care and that's just the way it's going to be. So I am planning a grand staycation! We will visit places around our area. If we are able to secure nursing for on one particular day than maybe we will stay at a hotel close by overnight. At least Mike and I will have time away from work to reset and relax while spending time with each other. I don't need to go away anywhere because the problems we face won't be resolved in one simple vacation. 

I have read a few articles recently about special needs parents and what they face each day. As the years pass I sometimes read these articles sighing to myself thinking everyone has their own issues might aren't any harder than what others face. However I do nod my head and agree with certain parts of the articles though. This morning as I read one I really started laughing to myself because I can see how far I have come throughout the duration of my blog. So I thought I would touch on my personal thoughts regarding some items that have been mentioned on various articles. 

Special needs parents are: 

Boring: I will agree with this. My daughter constantly tells me I am old. During the week we work, come home, walk the dog, drink wine, and go to bed. We do little else. Between 5-10 we don't have a nurse and getting out of the house really isn't an option. It's perfectly fine with me now. I love watching my shows and I have gotten very friendly with Pay Per View. 

Lonely: I will admit this is true at times. Relating to other parents that attend school functions, participate in holiday activities, and don't fight with insurance companies on a regular basis is difficult. Even in a room surrounded by people you can feel very lonely at times. 

Don't accept invitations: Oh this is me! I have actually lost friends over this one. You're right I don't. First off I know something will probably happen to prevent me from attending. Then there is a timing issue because most parties and other functions will run past the time Jude's nurse leaves. Either that or some functions are so far from my house that by the time I get there I have to turn around to go back and relieve the nurse. I am also extremely selfish with my time now and I readily admit that. To top it off I am even more selfish because I want people to come see me and attend functions with me but I am not reciprocal. I am afraid it's just the way I am now and that may be a flaw on my part. The weekend day time is the only time I have free to be with my husband outside of the house. I don't like driving freeways and I would rather not stress out trying to make an event. Yes Mike and I can switch off caring for Jude alone but it's so much easier if we work as a team. 

Hate the R word: This is not me. I am not one of the special needs moms that readily advocates getting rid of the word retarded. I get why people do it and I fully respect your view point. I am just one of those people that is not easily offended and I just brush it off to their ill education mixed with bad manners and keep walking. 

You compare your parenting skills: I used to do this but I don't so much anymore. In fact I have even unfriended a few moms of children with special needs or stopped following their blogs.  It wasn't anything personal I just couldn't relate to their lives anymore. I admired how their children were making progress but the sharp reality is Jude isn't. It was coming to the realization through diagnosis and more that Jude's body doesn't have the capability to improve. His lungs are full of scar tissue and fluid, his upper torso has no control, and his immune system is very weak. Some moms would see this as a sign of weakness or giving up when I see it as a step forward in a direction of understanding and improvement. By grasping the fact that Jude cannot participate in therapy, schooling, and other advancements I acknowledge that he is still pretty damn amazing. It frees up my time to appreciate Jude for just who he is and love every single part of his frail body. When I finally stopped and finally listened to the doctors I felt so free and I noticed a huge change in Jude too. I also feel I have grown so much as a person since I started this journey. I used to be so immature and now I feel like I have matured so much that I don't need to compare anymore. 

Are fearful: Maybe. I think the only true fear I have left out of this situation is being concerned about Jude outliving me. Isn't that an odd thing to fear? I fear losing my child and I fear dying before him. I worry that if something happens to me he may not get the type of care he needs and deserves. If something happens to Mike and I both that puts the responsibility into Emily's hands. We have a will and estate plan in force but Emily has already protested that she would want Jude. This worries me because as much as she loves Jude that would be a lot for someone so young to take on. My other fear is losing Emily, I just couldn't handle it. I have told God that many times. 

Have a hard time when people ask about my child: Not really. The hardest question I get and I get it daily is, "How is Jude?". I really don't know how to respond. Mike always says "On hospice". I don't want to tear anyone's emotions down so I generally response "sick but smiley" because it's true. 

That's all for today. 

Scoliosis and Jude

Jude was so smiley yesterday when I got home that it literally made my entire day. He was smiling so big that his little dimple on the left cheek was showing brightly. However he was also having such an issue maintaining his oxygen levels that we eventually just turned off the monitor. About an hour after being home Jude started whimpering again so I took him out of his bed to sit him up on my lap. He loves his lap time and will just sit and babble to everyone that will listen. He is so heavy now that I end up having to lay him across my lap but he loves being held. 

Jude's Scoliosis has gotten so much worse. This week we noted a remarkable change and that his spine is almost completely to the left side of his body now. I am no doubt this is responsible for a lot of his pain. The nurses do their best to keep Jude in his wheelchair sitting up straight for several hours a day but he can barely tolerate it anymore. Therefore, we are researching a new wheelchair and will be working on obtaining one. Jude does not tolerate the stander at all. I am sure it's a combination of his feet and the inability for his lungs to function properly. I feel terrible for him and I am sure it's causing a lot of pain. I hate seeing his little body twisted and his feet turning in. It's amazing how our bodies react when we don't walk or sit up on a consistent basis. 

Hospice came by and checked on Jude twice this week. He still runs an intermittent fever occasionally and has been crying out in pain. It's always been a battle with Jude trying to figure out the source. I do think it's partially neurological but we have also seen an influx in recent seizure activity. This generally means Jude is getting sick but the sickness hasn't reared it's head in a way that we can pin point it yet. The good news is Jude has hours where he is still very happy and that's good.