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!

Monday, December 15, 2014

Well that's Jude for you. RAPID change.

After my last blog the nurses ran another round of IV antibiotics for Jude. The nurse spent some time trying to get Jude to open his eyes but he just wouldn't comply. He was pretty non responsive and I could tell she was very nervous. So as the antibiotics ran they did another breathing treatment. When the medication ended Jude went from looking like this.

to this

Amazing! He literally went from possibly going back to ICU to probably turning the corner within a few hours. The doctor said the effusions were actually on both sides and he believes the pneumonia was in both sides from the start. So he doesn't think the report is accurate that it spread to the left lung because it was already there to begin with.  He said the central pneumonia is still pretty impressive but the effusions look so much better. So he said if Jude can go a night without major medical intervention then he will send him home. We all know that's the best place for him.

The volunteers brought Jude some Christmas pillows today and my friend Ginger brought him a Rudolph. That's awesome because I haven't been able to do ANY Christmas shopping (that's your forewarning Anyway, I am holding out hope that Jude continues to improve today. One thing that always lingers in our mind is just as quickly as he gets better he can rapidly get worse. So we are praying that he continues on this positive path.

We also pray that the new feeding tube will prevent this from happening again.

The good and the bad

The good news:
Jude is moving more air through his right lung. The effusion has improved some.

The bad news:
Jude has double pneumonia. It has spread to the left lung.

Jude basically went into mild respiratory distress last night about midnight. I noticed his breathing was very erratic and kept pointing it out. I told the nurse I had to lay down for a bit and she kept a close eye on him. About midnight she woke me up and said she wasn't liking his breathing and that he was working extra hard. His stats were good although his oxygen did drop some but he was just working so hard to move air. So they did a deep suction, they did a breathing treatment, and they did cpt. They also gave him some Motrin and we repositioned him several times. After about two hours he was breathing easier and he finally drifted off to sleep. Throughout the night Jude would moan in pain and it just broke my heart.

So today Jude is still sleeping again and he is very pale. So I called the nurse in. I explained I am not a panicked mom and that if Jude was a little better I would probably be standing there asking to take him home. However, with that being said (and I paused) I told her Jude is very ill. I explained I was not new to aspiration pneumonia or to effusions. I explained that in PICU before we left I pointed out that the right side of Jude's chest wasn't moving so they did an X ray and he had the effusion. Yesterday I pointed out that Jude was more lethargic and looked worse than the day before to me and then he had that attack last night. I told her I had even said I thought the pneumonia may have spread. So I said "Today he looks worse than yesterday". She asked if if he looks worse than when we decided to bring him to the ER. I replied "Most definitely! On the way to the ER I was even contemplating if I was making the right move because he was alert and happy. Although no one expected him to aspirate walking into the ER". She said "Oh my". I then showed her a picture of what Jude normally looks like and she got a concerned look on her face and said she was going to inform her charge nurse.

So here is the complicated situation for my medical friends. Jude's air movement looks better to me today! His O2 stats with 5 liters of oxygen on is running 100 percent. Last night his blood gases were good too! However he is more lethargic, moaning in pain, I can hear wheezing, and he just looks.......grey to me. I am not new to aspiration pneumonia it is a beast to get over and can take everything out of a person. However I have just never seen Jude THIS sick. I don't think there is much more that can be done except give it time but I am concerned. The fact he has had two sudden episodes that required intervention worry me. Last night the charge nurse told me Jude's lungs sound "terrible". I told his nurse today that I wonder if Jude's little body is just broken down and tired from all the fighting. She said it does take a toll. He is resting comfortable in his bed and his stats are still good. I am sitting here beside him dreading going back to work tomorrow because I will worry so much about him.

I am hoping he wakes up and he is happy today.