Sunday, December 21, 2014

The roller coaster called Jude

Last night Jude got very restless, was crying in pain, and just having an overall hard time. So I decided to try out the Ativan that Hospice prescribed. I drew up the 0.25 mg which was such a tiny amount. Jude struggled about 30 more minutes and then he was fast asleep. In fact he only woke up ONCE through the night and ended up sleeping FOURTEEN hours. I couldn't believe it and during that time his oxygen held steady not dropping once. However Mike and I were both concerned because he seemed to be so sedated for so long. The hospice nurse was sweet and texted me that he was probably just exhausted. So I figured Jude just needed a little help to finally help him rest.  Finally about 1pm Jude woke up and he had an amazing day. He smiled, he coo'd, he laughed at everyone, and he held his oxygen (for the most part) on room air! We were all AMAZED!

It was like a complete turn around......................then 7pm struck. Jude has been moaning, crying, requiring more oxygen, and just overall miserable. I guess this is what Hospice meant by good days, bad days, and in the middle. I hate to keep drugging Jude. However, I asked Mike "Is it worth giving him this medication and letting him get rest to receive several wonderful hours with him and keeping him out of pain?". I wish I had a nurse here with me to tell me what they think. Sometimes I feel so lost and at other times I remember this is just our new normal.

Such a rapid up and down with Jude. I am sure people are overwhelmed with my happy posts on Facebook and then to receive an unhappy post. However I ask people to just remember that this blog and Facebook are rather therapeutic for me right now. Currently I am holding off on the medication but I have it to give if Jude continues to struggle.

I have "The Sound of Music" on and I am trying to entertain Jude with the music. "Edelweiss" is of my favorite songs and Jude is currently very quiet listening. I remember Emily surprised me once by playing that song on piano and I said that's "Edleweiss"! She just said "I know" and smiled. She is at her dads won't be back until Christmas Eve and I already miss her. 

As I sit here tonight I am grateful Jude is with us even if he is on hospice. I am grateful for Emily's health, our snug and warm home that is filled with so many great memories, and an understanding job that has worked with me during this hard time.

Merry Christmas everyone. May your family be blessed this next week and always.

Saturday, December 20, 2014

Hospice update

An amazingly calm and reassuring RN with hospice came out to evaluate Jude and discuss our options today. She happened to be here at the same time Jude's case manager from his nursing agency was here also doing an evaluation. It was honestly absolute perfect timing because they could discuss Jude's care and the best options at hand. She told me that Hospice is here for extra support and to understand that pediatric hospice is very different than adult hospice. Jude will not have to give up his current nurses, doctors, or treatment plans. The hospice office will be an extra layer of support on top of what he currently has. She then explained they have four levels of care which consist of in home care (what Jude will have now), in patient care, respite, and crisis (hoping I remember all those correctly).

The in home care will consist of visits to evaluate Jude's situation and they will discuss what level of care they will need to provide him. In patient care is available at a very nice facility in Fort Worth that has private rooms. They provide a nurse, an aid, and a volunteer for each patient and they have 24/7 eyes on the patient. We would utilize this if Jude has a pain management problem or other issue that needed to be tended to that would normally require hospitalization. They CANNOT do Xrays there so we are afraid that with Jude's severe chronic lung disease we will continue to go to the hospital but it is nice they have the facility available. They allow us to stay with him 24/7 and we can even bring our dogs. How amazing is that? They also have respite care at a similar facility where a patient can stay up to 5 days if the parents have an emergency situation or just need a vacation..........I highly doubt we will ever use this but I can see why people do. Our nurse told us that she even had a teen that was on hospice once ask to come stay at the respite center just for a break from her family. Hey we all need breaks from our moms and dads when we are teens and I respect that she had a warm safe place to go with 24/7 eyes on her medical condition. Final is crisis where they assign a nurse with Jude's nurse to be in the home from 8-24 hours a day to help with pain intervention and other situations. Crisis intervention also helps with final moments but we will pray that isn't something we have to face any time soon. During the nurses evaluations Jude really just had a hard time.........which is his new normal. He was upset, toned out, oxygen would drop, and he was just in pain. He would moan, cry, and was just having a very difficult time getting comfortable. She said that she would really consider this more of a crisis situation and that Jude needs some pain medication intervention. While she was there we would spend a lot of time repositioning Jude, working with his O2, and do our best to make him comfortable. We would go from left, to right, to back, suction, left to right to back, suction. I would stroke his hair and tell him everything was okay. She said that in a situation like that she would probably give Morphine to help him relax. We explained this has been Jude's new normal since July.  We also explained how any time we give new medications we feel that we have to give something else up like interaction from our son. She acknowledged our fears and told us she would keep that in mind. However we understand that Jude needs some help

She mentioned how shocked she was at the amount of nursing hours Jude has and expected him to have more. I then told her we had to fight for what he has with an attorney and she shook her head in disgust. So she started a list...........her office will get all his over the counter medications now, she wanted an oxygen concentrator that went to 10 liters vs 5, and she wanted pain management medications in the house. She wants more nursing hours and she will visit at least twice a week. By 7pm Jude had the new oxygen concentrator delivered to our door! Nurse Allen and I just stood with our mouths open in amazement!!! We feel like Jude and our family have been struggling so much with his condition since the July surgery and in one day this lady has found ways to help us!

The pain medications should be here via a courier before the end of the night. The Hospice doctor also wants to come out to meet Jude and get to know his medical conditions. Not to mention Palliative care wrote an entire 5 page summary of our family, Jude's needs, and how Jude's health has decreased. This was done so Hospice could get to know our family and the current situation. I was amazed at the level of interest put in our family today and how they really seem to care about Jude and making him feel better.

Jude is sick and this isn't easy. Our situation was hard before but it wasn't anything I couldn't handle. I may have been tired at work but I could keep going. However as an example.......last night I went to bed at 4:20am when I finally got Jude's oxygen levels stabilized again. I cannot do that and's impossible. Noted in Hospice charts from palliative care it stated "parents need to work if at all possible". So they knew! I hate my little boy is so sick. I guess I will never understand why some babies have to suffer so, but it's a reality of life. Jude's had a hard day and I hope he can have a better night and get some rest.

The nurse with hospice said she is always hopeful and children are discharged a lot from hospice, but that she is also realistic and honest. I think we will get along very well.

Friday, December 19, 2014

A follow up to my prior blog and a Hospice referral

I talked with Palliative care today and they believe it's time for Jude to receive hospice care. Of course this has me very teary at work. However, the nurse was very kind and explained that this doesn't mean end of life it means extra support. She believes that by providing Jude with extra support he will avoid some of these hospital transports that are so hard on him. She explained that Hospice can provide additional equipment, medications, and possibly even help secure the night nurse. She made me believe that it's time to give Jude support to help him rest easy at home with us. She said "He is very very sick and just isn't responding the way everyone hoped" but she said Jude could easily turn around. That we can always emergency transport to the hospital and that they are just there to put Jude and our needs first. She is a nice lady.

It's hard to talk about these things and I know my husband only hears finality when we discuss situations like this. So if anyone has feedback on using Hospice for extra support and positive stories I think that would greatly benefit our family. So please feel free to leave your story on the blog so we will have some familiarity with this. We will have to make a decision soon. Thanks

About last night

I feel like all I am doing lately is filling up my blog and Facebook with negative activity. However, I feel like if I update then people will keep praying for Jude.

Mike called me from the hospital last night and said the doctor was hesitant about letting Jude go home. Mike explained to the doctor that Jude's pulmonologist had already released him Tuesday. So the doctor agreed to let Jude go if we felt comfortable with the understanding to come back immediately if Jude has anymore issues. We explained that we are hesitant too but that Jude heals better at home and that we all know how much sickness is floating around that hospital (The baby next door to Jude had RSV).  They all agreed he is in harms way being around hospital germs.  Mike had asked Emily and I to come help him get Jude home from the hospital. It was a good thing he did because I had issues with Jude in the car. Emily was in the back of my van with oxygen and the suction for Jude. I feel so bad because she is backed up on homework and was late to tutorials today. However she never complained.

Once we got home I went sprinting with Jude into the house to clear his airway and get him back on oxygen. It took him hours to stabilize and I think that's because any movement, ride in a car, or changing of rooms just takes everything out of him. I would clear Jude's congestion and get his O2 back up only to watch it fall again and to start the process over again. I switched him from the oxygen tank to the converter and back again. Finally I just pulled out the blow up mattress and parked myself in front of Jude's bed. Finally about 2:15 I gave him some Benadryl to see if it would help with his secretions at all and it did. He finally relaxed and settled into a sleep and surprisingly kept his O2 stats up with the 5 liters of oxygen on.

I got a few hours of sleep before getting up for work. I am going to check on the night nurse again in a little while. Charlotte is with Jude today and she is so good about getting him bathed and keeping his oxygen levels on a good level. I am worried that the pneumonia may have gotten worse in the left lung because he now cannot lay on that side. However they did give him more IV antibiotics yesterday so I am hoping that put the kick into the illness to go away.

Thursday, December 18, 2014

Our night

About 3:30pm I was sitting at my desk at work and I thought I heard thunder and then the familiar sound of hail hitting our roof. I honestly laughed and thought "You have got to be kidding me". So I gathered up my items and headed out to go get Jude and take him on the long trek into Cook's children's. I had told the GI specialist that I would be leaving at 4pm to get Jude and we would be heading to downtown. However this 40 minute trip turned into a 2 1/2 hour traffic nightmare. Jude even ran out of oxygen in his portable tank. The specialists office kept calling checking where we were. I explained that we were stuck in traffic but that we were trying so hard to get there. Then I got the ultimate phone call..........the specialist was going home. I felt like crying.......I did cry.... I was stern and upset. I couldn't understand how someone in Jude's condition could be pushed aside. I explained that he just got this new feeding tube  administered BY THEM and that it was failing. In addition to the fact that Jude was almost out of oxygen after the long trip and that we were doing our best to get to the facility, but there was nothing we could do because the doctor had to go. I will digress to this situation later.

So we walked into ER and I made my way to the triage while holding Jude in my arms, explaining our oxygen tank ran out on our long trip. They took us back immediately and hooked Jude up oxygen and provided us a suction. When we were asked what happened I told them the long story and through tear filled eyes I said, "I am just a mom on the ledge". The doctor looked so empathetic and she immediately got us back to the regular ER along with a nurse to relay our information.  Once in the room I felt a little more calm and realized that life is always going to fall the way it should and there isn't much I can do about it. My dear friend Gina came with us and I looked at her sitting on the chair beside me and quietly I said "I told the doctor I was a mom on the ledge". She busted out laughing and so I laughed too. I think that relaxation moment was well needed.

Soon a sweet nurses tech came into the room and explained that we would be going upstairs after being admitted. In my mothers exhaustion hysteria I burst out with a few sentences regarding my extreme displeasure regarding the doctor that left and left us in this situation. That we would now have to admit Jude due to his lack of patience. The tech looked stunned and then looked down at his computer and said, "I am not sure I should tell you this but I am in the wrong room." I paused and said, "are you serious?".  He said "yes". We literally all laughed again.........even the tech.

So we sat in the small cramped ER room and we realized that Jude was really going to have to be checked in for the night. There wasn't anyone on staff that knew how to rightfully place the GJ tube without using sedation. Due to Jude's pneumonia and him coding in the ER on Thursday they could not put him under to place the feeding tube. So Jude had to be checked in, an IV was place to provide fluids, and they kept him on 5 liters of oxygen. I looked at Mike and I was blunt.......I said "I need to be selfish tonight........I need to sleep". I think he knew that I was not acting rational and that I needed to catch up so he stayed. He stayed even though this may effect his ability to obtain the promotion he is looking for.

My friend Gina called her sister who came from North Richland Hills and picked us up from the ER. She drove us all the way back to my house to obtain Jude's medications that the hospital doesn't have available and to pick up clothes for Mike. Gina then got into her car and drove all the way back to the ER to drop supplies off to Mike. I would like to think I have the generosity that flows through Gina's veins but I don't think I do. I am so grateful for her help tonight! She was truly invaluable. As I type she is still sitting with Mike not even questioning what time she should leave. She just keep saying, "I am here". So we wait until the morning. We know that it looks like the tube could possibly could be out of place.

I promised I would discuss the doctor who was suppose to meet us today. After eating and thinking rationally I decided that this man........this doctor.... has a life like we do. He may even have a special needs child so I decided not to judge. Jude was happy in the ER and even held his O2 for awhile without the need of an oxygen mask. So I took a deep breath. I decided to look at the positive. Jude was happy, he seems to be overcoming the pneumonia, and we will get his feeding tube replaced in the morning. It's not ideal but well...........I always say it is what it is. Jude and I are lucky we have such loving people to help us.

Good night Ju Ju Bean! I will see you tomorrow.

Wednesday, December 17, 2014

Just call me Eeyore

We worked until about 1:15 am to get Jude's oxygen stabilized enough for all of us to go to sleep. He was then up with oxygen issues again at 4:10 but those didn't last to long. I was able to get a little sleep when his nurse got there.

However as I was pulling up to work Jude's nurse called and explained his new feeding tube is stuck! What does that mean? Who knows. I highly doubt the Pediasure that is diluted with half water and the 5 pedialyte boluses clogged it. So it's either kinked, out of place, or their is a blockage. So I just felt defeated. The radiologist was very nice and told me to leave when I can later today and she will wait to go home until they see Jude.

So I have to leave early today and get him back down to Cook's. I will have to have someone ride with me to suction Jude and make sure his O2 stays up. So either Mike will go or I hope my friend Gina can.

Thanks for your concerns.

Tuesday, December 16, 2014

Saying a special needs child can go home from the hospital sounds great but sometimes it's not

I had to go back to work today so I had some friends stay with Jude. While I was away the Dr came in and they called me on my cell phone. He said that Jude's lungs are "riddled" with disease but that if we are comfortable he is okay with letting him go home. When I got to the hospital to pick Jude up the nurse told me she was shocked the doctor was letting Jude go and that she hopes we didn't have to come back. I told her we are pretty well set up at home and she confirmed the doctor said we have a great nursing set up between us and his home health care. Jude did great on the way home with his portable oxygen so I thought the night would be amazingly easy. I was wrong!

When we finally got him home it was a whole different story. I am literally taking a ten minute break because I have had SO many issues keeping Jude's oxygen up. At one point it was in the 70's but after work I got it up in the 90's again. I have given him a breathing treatment, switched out to the mask, and really worked with him. I am worried he is going to have to go back through ER and maybe through 911.

If he goes back I don't even know what to say anymore. First and foremost Jude is most important but I don't understand how I can continue to hold a job with his continuous issues. It may come down to us having to sell our house and move. I want to point out I am not whining I am working things out within my mind. So if you have money and healthy children and think I am just bitching then back off (sorry I am crabby tonight). I do believe everything happens for a reason. As cliche and ridiculous that saying can be it has always deemed true. SO whatever I am suppose to do will be laid out in front of me eventually. Whether it's the fact Jude will be ok, or we have to go back, or I have to quit, or things just work out. However I am beat down tonight. It's not Jude's fault by any means and I feel so terrible he is having such a hard time. I wish I could just take a deep breath for him.

I can absolutely not deal with anyone elses issues right now either. I feel like I am teetering on the edge. Is that bad? Is that bad after trying to stay strong for so long I am just not strong right now?

This is going to be a night of standing next to Jude's bed with suction in hand. I want to be happy positive Jenn that thinks everything will work out with rainbows and unicorns. However right now I am afraid Jude is rounding the bend for supplemental breathing mechanisms and then we have to decide on that then when do we decide we are breathing for him vs him breathing for himself.  We have Jude on his oxygen converter so we are going to try an actual tank and pray that works for Jude. He has just had it rough lately.

Signed frustrated in Fort Worth!