New medication and Jude's reaction

The pulmonoligist called in a steroid for Jude yesterday and put him back on his antibiotic. Jude looked better after the initial dose of the steroid so I am hoping this is the kicker that we need for him to get over this illness. The doctor was very nice but blunt yesterday. He said he couldn't tell me if this was Jude's health deteriorating to the point he won't be able to recover because Jude is a very sick little boy. However he didn't have a problem trying a new route to try to get Jude to turn the corner.

Jude fell asleep about 10:15pm and we had to give him his breathing treatment at 11pm. This woke Jude up and he was up until 5am. ARGH! The good thing is that Mike and I didn't have to constantly stay up but about 3am that changed and we were primarily up. Jude's color looked better and he was grinning every time I would come into the room to check on him. Jude learned if he yelled I would come into the room. So he started a cycle of yelling out and I would walk into the room and he would grin at me. This was very cute considering he has been so sick for so long. However, mom was tired. I cannot keep working full time and be a full time RN at night. So Jude finally had to lay there for awhile making noises until he learned mom wasn't coming back this time. Then he cried and well mom came back. Finally he settled in and went to sleep. I had to keep around 7.5 liters of oxygen on him last night otherwise his oxygen level would fall. He also needed pretty consistent suctioning. However I am hoping that his personality shining through is an indication the steroid is going to help get him through this.  

My thoughts on Jude

I see a significant change in Jude since this last bout with pneumonia. So what I am trying to distinguish is if this is our new normal baseline or if Jude is deteriorating further. Our weekend nurse told me the other day that he was surprised at how Jude's appearance has changed with this illness. Last night Jude was having a terrible time coughing, keeping his oxygen up, erratic respiratory rates, and clearing congestion. We suctioned him on a consistent basis and we had to turn his O2 up to 8 liters. After a dose of Ativan Jude's respiratory finally calmed down.  Jude's stats are still good as long as he has oxygen on. Without the oxygen they plummet.  For the first time I stood over his bed and told Mike this is not how I wanted Jude to live. This isn't fair to him and I hate it for him. We do what it takes for our children to survive but living a life in pain, fear, and gasping for air at times isn't what any of us intend for our children.

Jude does have good hours where he smiles. He still seems so weak but he smiles and even tries to conversate with me. Jude slept fairly well on Friday and Saturday night. I would have to get up multiple times but not as much as normal. I also had a nurse and since it was the holiday I could sleep late and catch up on my rest. However, last night Jude was up until about 1:30am. He then had a few times he woke up coughing, crying, or needing to be turned. So we are sleepy at work again.

I talked to Hospice today and she agreed that it's just hard to know where Jude is at. If this is a new baseline and how he will be, if he is trying to get better, or if this is a sign he is not getting better. All we can do is watch him and evaluate each symptom then hope for the best.

we are still here

Jude is sleeping 15-18 hours a day. I am not sure if it's illness or if he is just tired. We are keeping a close eye on him.

I just wanted to give a quick update.

How is Jude?

I keep getting this question, "How is Jude?" and I am never really sure how to answer. It's hard to give an accurate answer when I am not sure myself. Some hours he seems perfectly fine and others he seems to really struggle. Sometimes Jude seems so tired and has such a hard time that I just pat him to reassure him. Other times he is smiling big, has his normal color, and seems like he is on the mend.

We have figured out a few things.

1. Jude cannot be on room air for to long. If he is left on room air then it takes us about 5 hours to stabilize him later in the day and get his oxygen level at a normal reading. He also will gasp, moan, and grimace in pain. So we now keep him on some sort of oxygen and generally more oxygen at night.

2. Hospice moves quickly. We are not used to that but it's awesome. They can get a hold of medications and doctors when it sometimes takes us hours. It must really be a calling to be a nurse or a hospice nurse.

3. Moving Jude's bed near our room has made our lives and Jude's life easier.

4. Just because you cannot hear pneumonia in the lung doesn't mean it's not there. It's a silent pain that creeps up without anyone knowing.

We called the doctor's office again today because Jude looked pale and was rather lethargic. The antibiotic ended today so hospice asked the doctor if they could extend the medication. They didn't want to and just increased the breathing treatments. Mike and I know Jude well and we know the pneumonia is still there. We know he needs Iv's but sometimes the doctor's just don't listen. I will hope I am wrong in this situation but generally I tend to be pretty accurate. I told the hospice nurse that on more than one occasion I have told the doctor that if it walks like a duck and quacks like a duck it's probably a duck! We will keep a close eye on Jude and hope that the extra breathing treatments, some CPT, and extra fluids will clear this infection out. I have been wrong before and in this case I will gladly put my tail between my legs. We all know healing without antibiotics is better but serious infections that cause effusions and threaten lives sometimes require those medications.

The cutest part of today was that despite all of Jude's new wires and tubes I found a way to hold him on the couch like I normally do. Jude literally started GIGGLING! He loved it!
I hope everyone had a good Christmas. I am SO thankful for our nurse this weekend because I am catching up on sleep. I almost feel whole again (lol) and Jude is getting extra attention because we are rested.

A fever

Well the good news is we all got a few hours of sleep!!! I am still very tired but better than I was. Now the not so great news is Jude was throwing up last night. He threw up all his medications and anything else in his stomach. He never vomited formula so that means the other feeding line is in place. However Jude woke up vomiting about 5:30, has a high fever, and very high heart rate.  I gave him some motrin and a bed bath which both seem to have been effective. We aren't sure if he aspirated or if he had some reaction to the new medication patch that helps with his secretions. I think it may be both. I think the patch caused him to vomit which caused him to aspirate. This is just further proof we need a nurse at night. We go running if we hear Jude retch but we do not not always make it in time. 

Jude is smiling so that's  positive. He is sleepy and just not feeling well. I'm going to talk to his nurse and call hospice again. I have to go into work because I have an employee out but if Jude has to go back to the hospital I will have to leave. Hopefully this is something that can be handled at home.

May day

Jude's night only got worse yesterday. Jude could not keep his oxygen levels up last night. I would suction him, clear him, and it would raise for about 2 minutes then fall again. At one point we had him on 10 liters of oxygen. Jude was up ALL night long doing this and I had to basically stand by his bedside. I didn't get any sleep at all before going to work. I can handle getting a few hours but today I am flat out exhausted.

Adding insult to injury at about 5 am his feed line started beeping and his feeding tube was clogged again. Mike and I literally just stood on the side of the bed trying to unclog the tube in tears. I think we both just hit a wall early this morning. My heart was fluttering (still is) and my chest hurt. I thought this is it...MAY DAY MAY DAY we are going DOWN! I cried, Mike yelled, and everything went to hell in a hand basket. Poor Jude just laid there and would eeek out a smile every once in awhile. He would get stressed from the lack of oxygen and his tone. Jude must of thought his parents went off the deep end during this debacle.

Mike wanted to just turn Jude's oxygen monitors off but then noticed how low his oxygen was actually dipping and realized it was a concern. So we left them on and every time the machine's alarm beeped we cringed. Now this afternoon Jude is holding on room air again around 94. I just don't get it. All I can think of is his body gets easily tired so he works harder at night to keep everything normal.

So they are working on changing his formula to a brand that will hopefully not clog the line but that will take a few days. They are also still working on a night nurse and I have no clue when that will happen. I was very thankful for his new oxygen converter last night since being at 10 liters would have quickly drained his tanks.

Maybe tonight will be better and we will have better use of the new medications if needed.

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 playing.........one 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.

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 work.............it'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.

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.

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.

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.

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!

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 family...lol). 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.

Jude's update

Jude was very lethargic this morning and didn't really wake up until about 1pm. I wasn't to concerned because I was sure that his little body needed rest from being so sick. Once he was awake he smiled at me a few times and he was able to look about the room with ease. I suddenly had hope that Jude was going to quickly recover.

Since Jude was awake the nurses had to change out his IV because the other one began leaking a bit. However Jude really didn't complain much except for the tape pulling his hair on his arms.

Later in the day Jude got tired very easily and he began to flutter his eyes. He also spiked a fever again so the nurse turned down the a/c, rolled back his blankets, and administered some Motrin. His temp decreased a bit but he still had a fever and suddenly he began gasping for air. Jude was really struggling to breathe although his oxygen level stayed fairly consistent. Here is a video of what Jude was dealing with.

After a breathing treatment, medication, and repostioning we finally got his breathing somewhat controlled. My good friend that has been here with every illness said, "I don't think I have ever seen him this sick before". It breaks my heart but it's true. Jude's tiny little body is growing so weak but he is such a fighter. Tonight I stroked Jude's hair and looked into his eyes and told him how much I loved him. A big smile spread across his face under his oxygen mask and he looked directly at me. He knew exactly what I was telling him. The nurse and charge nurse came back in and the charge nurse told us how bad Jude's lungs sound. We are still holding out hope that this X ray will come back improved and keep in mind that Jude is still on a regular floor and has NOT gone back to PICU.

The hardest part of this is worrying about my job on top of Jude being sick. My boss is understanding but it doesn't change the fact that he needs his small office covered. I am blessed beyond measure because I have friends/family that have stepped forward to sit with Jude from 10-6 each day. That means I cannot put a full days work in but I can get 5-6 hours in. Honestly I want to just drop my world. I want to not care about anything but Jude but by caring for Jude I have to focus on my job too. Again I am so incredibly lucky that I have people that will step forward and sit with him. Now..........if I could only pay off my house...........I wouldn't have to call in favors! lol! I think I need to mark buying lotto tickets on my calendar.

The past few days I have walked through this hospital and watched the families that inhabit it. I have memorized the color of the bands on people's arms. I wonder what their children are here for and if they have any experience with traumatic circumstances. I offer them a reassuring smile and I wonder if they will walk the hallways tomorrow or if they will be released. I always wish they will be released and never have to return. I see families in the cafe, kneeling in the waiting rooms, or occupying the chapel. Yesterday I walked into the chapel hoping to light a candle for Jude but they didn't have anything to light. So I walked to the alter and swallowed hard as I saw "request for prayers". They make them public so people can pray and I swallowed hard when I read a few. I wrote in the book that I requested prayers for Jude's healing but most of all our entire family prayed for those that families weren't used to illness. I prayed for their strength, their endurance, and their understanding of the situation they were in. Then I turned and walked away and at the door I paused........I looked back....and I felt at peace. I really felt a overwhelming amount of peace. So I took a deep breath and walked into the hall and found my way back to our room. I tucked Jude in tight and kissed him gently on his forehead and knew that no matter what everything would be exactly the way it should be.

The fragile human

On Sunday evening I noticed that Jude wasn't really acting like himself. As the week progressed he worsened with a bad cough, a fever, and was lethargic. On Thursday I decided that Jude needed to go into the ER to be seen but to us it wasn't an immediate emergency. We go through the ER because the doctors prefer that since Jude's case is complicated. So I spent a half day at work and reached out to Jude's doctors to advise them we were coming in. When I got home nurse Charlotte had Jude bathed and ready to go. All his medications were packed, overnight clothes, diapers, and more. It's a lengthy process getting Jude out the door. Jude and I left first and Charlotte followed in her van. Jude did very well on the trip to the hospital. He coughed but it wasn't overly productive so I didn't have to stop to suction him except once. He was smiling but very pale. Once we got to the hospital I unloaded his wheelchair and carefully put Jude inside of it. Suddenly Jude began retching, cough, and vomiting so I suctioned him while in the parking lot. Once I thought Jude was done I rolled him inside the ER. I was met by the triage nurse who was very kind. He asked me what was wrong and I explained that I thought Jude was either developing aspiration pneumonia or maybe had the flu (even though he had the flu shot). Just then Jude vomited loud and violently! Then again! I grabbed the plastic green pad  from the side of his chair and held it to Jude's mouth and simply mumbled "He is sick!". The nurse grabbed the wheelchair from me and sped to the back. He grabbed the suction out of the wall ramming it into Jude's mouth trying to get his airway clear but it was to late. Jude had aspirated into his lungs.

From that point forward things moved so fast that I felt I might faint in the ER room. A nurse grabbed my car keys out of my hand and she ran with them to security. I ran behind Jude's wheelchair which I noticed was now empty and someone was running with Jude screaming "CODE something". "Oh My Lord" I mumbled as I ran behind trying to catch up. Before I even made it to the room there were people surrounding Jude and each one had a job. At the foot of the bed stood a doctor nicely barking orders I heard "trumpet", "bag him", and "try again". I was overwhelmed and in the back of my mind I wondered if I could have gotten Jude under control but I realized this was a much more serious of a situation than Jude normally encounters. The doctor would talk to me and try to distract me from what was happening while obtaining necessary information he needed. He was very calm, collected, and well educated. If they stopped bagging Jude I noticed his o2 would immediately begin to fall and would just continue to fall rapidly. Again I realized Jude was NOT well and this was not good. Finally they got Jude stable and he was on a bi-pap machine to force Jude's lungs open so he could get air in them. The team was amazing. It seemed like within ten minutes they had blood, Xrays, and a diagnosis......right side pneumonia and an aspiration of vomit into the lungs in the ER. The doctor explained that they were going to have to force a lot of fluid into Jude's body and put him on blood pressure medication. They needed to support his heart while he was on the bi-pap. He then explained that his only recommendation was for Jude to go to ICU. I stopped and called Mike...breathing heavy and crying. I realized that as strong as I am Mike is my rock and he wasn't there. Mike told me to calm down and that I was panicking. He said we know that people overreact to Jude's situation sometimes. I then said, "this isn't over reaction Mike he is just lying there not breathing and they used this thing in his nose. Alarms keep going off". I know I was making no sense but I think Mike finally understood this was very serious when I mentioned ICU.

When Charlotte got to the hospital she came into the room and I could tell she was stunned. No one expected this to happen. I just let tears fall and she reached over and hugged me. Despite Jude's illness he is still my son and is just like your child.....he is precious to me.  Charlotte followed us up to ICU and was an amazing help because she had medication lists and more. The nurses took us into the hallway as they put an Arterial line in Jude for medications. She helped me answer their questions and I would watch what they were doing to my son from the hall. Jude had two Iv's and an Arterial line. There were tubes and machines everywhere and as I looked around the ICU that's all I saw. I was more calm and able to take everything in and it was sad. So many little children in serious condition with parents sitting by their bedsides. It makes you question the universe and why bad things happen to such innocent souls.

The night they brought Jude in they began weaning him off the bi-pap. I couldn't tell you what time of the morning it was but they finally got him on to a simple oxygen mask at around 5 liters. They haven't been able to take that off yet. They also weaned him off the blood pressure medication and then they began to talk to us about surgery to find a way to prevent Jude from throwing up.  This scared us because of the nightmare we dealt with after the Baclofen pump surgery. However the doctor came in and sat down with me. He said that they almost lost Jude yesterday and that we had to find a solution to prevent the aspiration pneumonia.  He explained there is no way they can put him under after he just coded unless it was an emergency. He explained they decided they wanted to put in a GJ tube in the place of his current feeding tube. He said a specialist from radiology can do this without sedating Jude. He explained the tube would flow directly into Jude's small intestine vs into his stomach. It would be a constant slow drip of food that would keep his body nourished and prevent him from throwing up. We thought this sounded amazing and we were excited that they found a fairly non invasive way of solving the problem. Although they did explain the tube was more complicated than Jude's current one. If it comes out it requires a hospital visit with a surgical procedure vs his current tube that we can personally replace. So we must be very careful with it. It also has to be changed about every 6-9 months.

Yesterday they took out the Arterial line and today they said they hope to have Jude in a regular room by tonight. However, when I got here I noticed that Jude's right side of his chest is not raising at all when he breathes. RT noticed it too and they spent some time giving Jude breathing treatments, CPT, and more. They got air moving but it was coarse and diminished so they called the doctor. The doctor has ordered Jude a new X ray and said he cannot move until they see it. I am hoping the X ray looks good and we can go ahead and move rooms. I am hoping beyond hope that Jude gets better and we can go home tomorrow or Monday morning. We both need to work but of course Jude comes first.

I have always been amazed at how fragile our lives are and how they can end in mere seconds. Our bodies are fragile but our spirits are so strong and so is our fight. Jude has always shown he is a fighter and has again done so. I have received so many sweet emails from people during this stay informing me how Jude has touched their lives. People that now work with the disabled, help those in need, and more. People that tell me Jude inspires them to be a better parent, people who say he inspires them to live a more healthy lifestyle, and people who say Jude has taught them to be grateful for the life they have. I feel like he is my little hero and if I could put him in a little superman cape I would. He seems to touch everyone he meets with his bright shiny eyes and his infectious smile. He teaches people that he isn't just a body laying here fighting but a good soul who is just full of love for all those in his life.

I know someday we will lose Jude because his fragile body is growing weaker with each battle, but as I sat there in the ER saying "not yet God just not yet" I have to be thankful that he listened.

Jude's night and the pageant weekend

I haven't blogged in awhile because I have been so busy at home and at work. Jude had a very rough evening and a horrible night. He was very toned out so his entire body was stiff and he was crying out in pain. I was becoming increasingly frustrated as the night went on and I kept reminding myself that Jude is the one in pain. I tried holding him, medications, and putting him to bed. Nothing really seemed to work. Then he was up and down all night long crying, moaning, or coughing. I stood by his bed for lengthy periods suctioning his congestion from his throat. I also ended up having to put him on oxygen last night while he fell asleep because his O2 stats were just to low. I am really hoping that he is not getting sick. However he did wake up smiling today so I am hoping that's a good sign.

I have said it before but I will say it again that the lack of sleep is really getting to me. Maybe I do need to finally look into a night nurse. I just hate to give that personal family time up. However, I am so tired of being tired. I am sure other special needs parents can relate. You feel you never have time with your partner and your body is always run down. I am out of shape and have zero time to do anything about that. Anyway, at least I have a good job and a nice home. I remind myself to see the silver linings and be thankful for my blessings.

Emily competed again this past weekend at Miss Texas Teen USA. On Sunday prior to announcing the top 15 we all took our seats in the ballroom and I felt myself becoming nervous. I also got a bad feeling in the pit of my stomach. I saw Emily's little anxious face on the stage and as each girl was called I could see her disappointment shine through. She didn't make the top 15 again and I thought she would be done with the pageant, but she wasn't. She sent me a text from backstage and all it said was "I have two more tries". Surprised I replied "you mean you want to try again???". She replied "of course". She told me a lesson in reaching your goals and having determination. I think she is such a beauty and such a sweet girl. Someday that connection will be made with the judges and they will see what I do :). Texas has to most contestants of any state so I reminded her that it's heavy competition.

Regardless of her placement it was an amazing weekend filled with lots of friends and family. Jude did very well at the hotel and on the long drive and we praised him for his cooperation. Emily's cousin competed with her this year and they had so much fun together. They were even roommates for the weekend so they had a great time. We are very grateful that we have the ability to allow Emily to participate in something she loves so much.