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.

About Last Night

Jude did sleep last night! It was amazing...........until a large storm cell hit our area and it woke up our panicked dog. The poor dog was in our bed shaking, trembling, and crying for HOURS! I finally took my blanket bid my husband farewell and went to the living room to sleep on the couch next to Jude's futon. Jude woke up a few times but since I was so close to him I was able to quickly reposition him and he went back to sleep. I actually slept very well on the couch even though I was up several times with Jude. I think it's because I was so close to him versus running to his room when I heard him whimper in pain. So overall we all got more sleep than normal.

Jude napped from 6-7 tonight so I am hoping he sleeps overnight. I have to say that we are SO lucky to have an amazing sleep safe bed for Jude, a great futon, and two great nurses. We may not sleep all the time but we have great resources and people helping us.

He just might sleep tonight!

Jude had a hard time tonight whenever I got home from work. He was restless, hurting, and very toned out. I gave him his 7:30 scheduled Valium and Baclofen. He was still having a hard time and was having a lot of congestion so I added some Benadryl to the medication. Soon Jude was OUT. He was just exhausted and was no longer coughing on a consistent basis so he went fast a sleep.  Keep in mind we have all had days upon days without solid sleep. I looked at my husband and said, "I think Jude may sleep tonight...........we may just leave him here on the futon". I turned around and suddenly Mike grabbed me and wrapped his arms around me. It rather scared me! He said, "Omg do you think he will sleep?". LOL! Poor guy...........I was so tired that he has gotten up a lot more than he normally does this week. He is a great dad and is just worn out.

I love my little boy. It makes me so sad that the surgery we chose to make his life easier has caused so many continuous issues. I only hope that in the end that Jude realizes we elected this surgery to try to ease his pain and we did not mean to increase it. So tonight I will tuck him in on his futon and move his baby monitor to the living room. I hope he bundles up tight and sleeps so we can all regain our strength but especially him!


PS. I have been thinking a lot about my friend I lost awhile back.  I want you to know I still think of you and in such a positive manner. I found some old pictures and was just giggling at the small baby chicks in our girls hands. I will always love you and always cherish our times. I hope you are well!!!

Short and not so sweet

Jude is still not sleeping well..........at all! He does well during the day but at night he is up and down literally all night long. He moans, cries, grunts, and even vomits. I am not sure what is going on with him. I feel terrible because I got very frustrated this morning when I had to get up yet again to suction his vomit. I didn't tell Jude I was frustrated, but again I have to remind myself that if I am irritated he must really feel bad. I mean he is the one there in the bed throwing up I am just simply suctioning him .

I am really hoping he does okay next week on the drive to Houston.

An update on Jude and Mike is sweet

Jude had a hard Friday night. He was literally up and down the entire night moaning, crying, and needing repositioning. We had no idea what was going on with him. Saturday night was better, but then last night he did the same thing. However it was more frequent when he was trying to go to sleep. I thought he was rebelling against going down for the night. I gave him his medications, repositioned him, and did everything I could. We even let Jude "cry it out" for a bit which broke my heart. Nothing..................NOTHING worked! Finally I walked in his room and tried to remove congestion but there wasn't any to remove so for peace I put on his oxygen meter. He was at 82......yikes. So I put 2 liters of oxygen on Jude and he settled in his pillow, got very quiet, and went to sleep. His oxygen went up to 87. So I had finally found the culprit.

Per the nurse Jude is clearing a lot of congestion today but his oxygen limits are within a normal range. Mike mentioned at lunch that he thinks Jude may be getting sick. I am not sure but Jude does have a habit of doing this prior to us going out of town. I think it may just be more of his new normal and it's a matter of having people around him that can narrow symptoms down to reach a solution.

Mike is starting to work at his friend Kevin's again for side money. This is the same place he put so many hours in before and wound up surprising me with earrings. This time he was suppose to be working towards items he needs and again came to me and said he had wanted to surprise me with a weekend trip to NYC. He wanted to take Emily and I while Emily would still really appreciate things like FAO Schwartz. It all sounded fabulous but I told him I just didn't feel comfortable being that far away from Jude and the above explanation of last night is exactly why. I know Mike and I need some time together and I am hoping we can get a night away locally very soon. Regardless he is very sweet to want to take us somewhere.

The Holidays

CHASA posted this article today and I think it's very well written. They deal with children that have partial paralysis. Since I deal with a child that has complete paralysis I thought I would add to this a bit. http://www.chasa.org/support-community/coping-with-holidays/

The holidays were difficult at first. Like the article states there are different levels of grieving for the child you thought you were going to have. In Jude's case we feel a responsibility to include him as much as possible in holiday traditions but there is now a realization that he isn't able to really participate. Transporting him for short periods of time on Thanksgiving became so overwhelming that we now just stay home. We have opted to follow Emily in her quest to become miss Teen during the Thanksgiving holiday. So we have a quiet dinner at home with just our family on Thursday. Then the next day we load our van to the brim and take a long trip to Houston. Jude must travel with all his medication, suction, supplies, oxygen and rescue aids. So to take him to someones house for a meal is draining and sucks the very fun out of the holiday. So we enjoy him at home while we eat our meal then head out the next day. The trip is worth it because we can position him in our hotel room with all his equipment for several days before heading home.

On Christmas my family normally comes to us which makes things so much easier. Over the years I decided to no longer stress about a perfectly clean house. My living room is laced with therapy equipment and therefore seating is limited but I don't stress about that either. I no longer worry about asking people to bring food with them because it helps with my time allotment. A plethora of food that everyone pitches in to bring provides lots of choices and makes everyone happy. I have learned to tell people ahead of time what Jude needs because they worry about his gifts and there are only certain  things he uses. This year we are looking to obtain a positioning pillow for Jude and pajama's. So everyone normally pitches in and it's a wonderful system. I have worked to make Christmas Eve special and to include Jude in it. I will generally buy him Christmas pajamas and I put his little stocking out. My family comes over and we all watch "Elf" while Jude cuddles in my lap. They endure the suction machine, the vomit, and the other situations that are apart of Jude's lifestyle. No one really looks away or looks down anymore wondering what they should do. Some even get their hands dirty and help position, turn, and suction.

On Christmas morning Jude tends to have the least gifts under our tree. His stocking is more bare and sometimes it's hard to take. However I remind myself that the items Jude needs are more expensive and require more. He cannot play with the little slinky, the coloring book, or the other little items Santa places in some stockings. So we have adjusted, but it's still hard. He doesn't bound down the stairs like Emily still does to see what Santa left him. However he is here. Jude is content with being warm, being pain free, and being loved on. I guess it's an acceptance of non material possessions and endless love that we should all learn.

To touch on some other subjects the article listed. It's impossible to get the right amount of sleep when your child is up and down all night. So I have learned to freely admit "I am tired" so please accept me a little stressed out. It's a phrase my family and friends here on a consistent basis and therefore they understand my situation. Exercise is pretty non existent when you work all day and are up all night. So I embrace my fluffiness!! As for watching the food and alcohol consumption......that's probably true. However a few glasses of wine with dear friends and family makes life a little more grand in my eyes. A wonderful meal that others help cook is also pretty amazing.

Jude cannot help color pages or paint pictures but I have treasured possessions his therapists and teachers have helped create over the years.  Little Christmas trees that include his fingerprints a teacher positioned on the paper accompanied by cute little poems and more.  Each holiday with him is a blessing and I am grateful our family understands our situation.

Jude, the review, and hurt feelings.

Jude is proceeding along about the same way as he has been. He has good moments, bad moments, and some sleepless nights. I cherish every minute that I get little smiles from him and all his precious snuggles.

So I had an interesting Saturday night. We took Emily out to a lesson and when we got back I went to change clothes. I was looking at fixing a sign I made for Emily and went back into the kitchen. On my way around the corner my foot hit some water that has been splashed out of the dog bowl. It was a moment where you think "OH CRAP!". There I went down, crash......SPLAT! I landed on my arm and rammed my shoulder into the wall. My foot went into the other wall. I laid there for a bit in pain and taking in what just had happened. I laughed a bit and then I noticed I had really hurt my shoulder. This was the same shoulder I had injured in a car wreck and had surgery on. I then moped around the house the rest of the night and into Sunday. I am still hurting but luckily it's getting better. Just call me Grace!!!

So today I was trying to promote the insurance agency I work for and I found a review of our agency from 2011. They said the customer service at our agency was terrible and I was a tyrant that huffs and puffs when I am forced to answer the phone. At first this really hurt my feelings because I take pride in my job. I know I always pick up the phone unless I am working on something else.  I may huff and puff when busy but never to customers, and I have so many long term clients that always compliment our agency. It's like everything I knew was right just came to a complete halt and it really hurt my feelings. Then I realized it really hadn't come to a halt. I know I do a good job. I may get frustrated just like any other normal human but I do my job well and I provide the best service I can. I took a deep breath and realized someone posting anonymously really doesn't matter. I also realized that 2010-2011 (when the comment was posted) wasn't the best year. Jude had just gotten his G button, Mike was still not working, and life was really really hard. So could I have been abrupt and probably should have been more patient with someone or even an employee? Yes. I probably should have. I probably still can sometimes. I am tired, over stressed, but I am a DAMN hard worker. So the next time I get frustrated with someone in a professional position I will take a step back and realize they may just have a lot going on and to look at their overall service. Next time I get frustrated on the phone I will take a deep breath and wrangle in my patience. Then provide the best service I know I can. So a few good lessons. I decided to shake this off and realize I do a really good job. I am well educated and provide the best service I can. I have to admit that I sometimes admire how my husband is so able to just blow things like this off.

We are at a bit of a standstill with Jude. Life has just taken a new shape and we will do all we can to keep him well.

Another tough night

When I got home yesterday Jude was sleeping. The nurse said Jude slept until 10am and then went back to sleep at 4:30. He slept until 6:30 or 7:30. I cannot remember the exact time. When he woke up he again wanted to be held. So we snuggled in and watched Maleficient, which was fabulous. After the movie I took Jude to bed and set everything up for his feed and medications. Brilliant mom spilled his seizure medication by not closing the port. The red dots went all over his sheets and I had to stop and clean them up.

Jude didn't have a good night. He would cry out several times through the night. When I would go into see him he wasn't ever full awake he was just crying with his eyes closed. So I would reposition him and then go back to bed. Once I repositioned him but he still kept crying and I couldn't figure out what was going on. I finally found that his feed had disconnected from his line (probably from being turned over) and it had flowed under him. Poor kid was drenched and probably cold. So I changed his shirt and wiped his back. Jude smiled really big and drifted off to sleep with the lights on and without his sheet changed. So I grabbed some towels and cleaned up the formula then laid dry towels down for him to lay on until the morning.

This morning from about 6:30am on he began waking up crying again. I would go in there and talk to him then pat his arm. He would quiet down and go back to sleep. I am not sure if it's the weather or anything significant but it was a tough night.

A quick update

Jude is doing pretty well. I think we are just getting used to the new normal and what we have to do to help control his tone. This requires a new medication regiment, positioning, and more. Last night when I got home he wanted me to hold him and not set him down for any reason. If I sat him down he would get toned out and start sweating. If I picked him up he would smile and bat his big eyelashes.

So he was held until he went to sleep last night. He did wake up several times and at 5am vomiting, but again we are just getting used to it. He was happy this morning and I cannot wait to see him when I get home. We are going to snuggle up and watch Maleficent.

Last night was rough

When I got home from work Jude was becoming toned out so I gave him his scheduled Valium and Baclofen and put him in his wheelchair. This controlled his pain and tone for awhile but then all hell broke loose.

Emily and her boyfriend where in the living room watching a show with me and Jude just started wailing. It took hours to get him under control. Emily even said, "this is the worst I have seen him". I held him every way I could, gave him his new muscle relaxer, and more. I took him into his bed and set his nightly feed and medications up. I set him up around his boppy to try to break the tone. Soon he became quiet but I noticed he became pretty pale. So I hooked up his monitor and his o2 was at 81. He didn't have a lot of congestion in his throat so I hooked him up to his oxygen and got his level up to 87. Still not fantastic but it was enough to let him drift off to sleep. Jude woke up several times throughout the night and two of those times he was screaming in pain. He then woke up at 5am and just stayed awake. When I went to check on him I noticed he felt very warm so I took his temp and it was 99.8 axillary. So I have him some Motrin and waited to see if it would work. Soon he began to feel cooler. Mike is injured so he is unable to help with Jude and by work time I was beat! So I texted my work and told them I would be a bit late so I could lay down for a little bit. Luckily I have that ability.

Once Charlotte got to the house I turned the baby monitor off and climbed into bed for a bit. The extra hour was really needed. When I was leaving for work Charlotte explained that she had suctioned a lot of mechanical congestion from Jude's throat and that his oxygen level was back at 97. She did say he had a rough hour when she first started attending to him. So far this afternoon Charlotte said he is doing well. Hopefully he will stay that way and the fever was a fluke.

Charlotte is off tomorrow so we had to find a fill in for tomorrow. We yet again had another nurse debacle! The LVN came this morning to orient with Charlotte then when she left she called the agency and said she wouldn't be there tomorrow. This was a reminder of the prior nurse situation a few weeks ago. I am not sure if they truly have situations that come up outside of work or if they are just worried about caring for Jude in his condition.  Anyway, the agency found an RN to fill in and she is training with Charlotte from 2-4. This all makes me appreciate our nurses so much more and we are truly thankful for them. Jude's nurses are on time, caring, and organized. I was very stressed thinking I would be missing work again. As much as I would love to just stay home and hold Jude it would mean another day off.

Emily has to be at a football game tonight but I literally just want to lay on my couch. I feel like I am caught in a thunderstorm lately without an umbrella, but Jude's smiles give me rays of sunshine and a break in the clouds at times.

A short quick little update

Jude has slept a little better the past two nights. However we now have really bad nasty diapers........which is always a bit of concern. So we are monitoring that and the nurse suggested holding off on any medication to help Jude relieve himself.

He is still having his attacks and like the Palliative care team said we are mostly just keeping him comfortable. The other night I got about 20 minutes of smiles out of him before he went into a full attack again and had to be sedated. It was great seeing his cheesy grin!

Jude's night

It was another hard night. I was up nine times with Jude when he would cry out or fuss. Mike was up a few times too. It took everything I had not to call into work today and trust that I laid there debating on calling in several times. I am certainly hoping that the care team talks to the doctors and comes up with a plan for sleep.  In the meantime I am going to hunt liquid Melatonin. We used to crush the pill and give him that at night but despite our best efforts it would always clog the G button. Since the Felbatol eats the G button (scary thought) then the powder will just eventually clog it up.

I feel like I am losing it a bit lately. I am sure it's exhaustion that is causing me to feel this way. Anyway, let's hope for a better week. The good thing is I did get a few smiles last night from Jude in between his attacks. It was nice to hold him for a bit and to see his grin.

The Palliative care team meeting

I want to thank everyone that has called, texted, or emailed today to get the results of the meeting. I needed a few hours to process everything and I thought I would answer everyone as a whole. They met us on a Saturday since we have missed so much work this year so that was very accommodating. They led us into a conference room where they asked us a lot of questions about our life. I felt like we were in a therapeutic sessions because we talked a lot about how life is and how it was prior to the surgery. Both of the ladies there really listened to us and took pretty extensive notes.

After they listened the physicians assistant explained their purpose and what they want to do. I related to her and I appreciated her outlook on life. She said children that suffer major neurological injuries like Jude have ups and down. She held up her hands and said that Jude's baseline may have been up here but there are things or major incidents (the surgery) that cause large dips. Sometimes the kids come back up to their prior baseline and sometimes you come up to a new normal that was much lower than the first.  This is Jude's situation.  I expressed that I always use the term "new normal". She then said that as life goes along they may come back up, they may not, or they may continue to decline.

Since I am new to this and I know some parents that are reading this are not bear with me. Over the course of the meeting I began to realize that their job wasn't to get Jude better. Their job was to help us manage the level of care Jude needs for his new condition. I guess I always knew that Jude's condition wasn't ever going to get better but it was realizing he just needs a different level of care now. I told the PA that I appreciated her explanation of how children sometimes decline and how some can regain their prior normal. We then talked about the body and what it needs to function. I told her again I appreciated her explanations. That sometimes people preach to me about miracles when sometimes people just need to realize our bodies are made to function certain ways. When they don't function properly we encounter a decline in health. She said, "sometimes those people don't realize the miracle is sitting in front of them!". I got a little teary and explained I say that all the time........that our blessing IS Jude and taking care of him.

They then asked us the hard part. If we have thought about if we would want them to take extraordinary measures if Jude should ever get to a point that his heart and lungs stop. Immediate tears from Mike causes big tears from mom. We explained we have talked about after but have never crossed the bridge to think about something happening and really don't want to. She explained some more items that were hard to hear and then sweetly told us that preparing can sometimes help a moment of panic in a hospital room.

We then created a plan of action. We had to decide if our goal is extending his life, comfort measures, a good quality life, etc. First and foremost we want to control Jude's pain and his attacks so therefore they are contacting the pain management team. With pain management intervention she explained that other parts of his body maybe affected. We already know that since Valium decreases his respiratory. So this isn't something we are unfamiliar with. They are also going to work on getting Jude to sleep better so we can sleep better. They are going to talk with all his doctors so EVERYONE is on the same page. The PA was so interested she even wrote down Mike's words of "Have the doctors check their egos at the door". Mike and I both praised Jude's neurologist on several occasions (Dr Riela) and explained how the personal interest he takes in Jude's life make a difference in the quality of care he provies. I think this is something they will relay to Jude's other doctors. So we will get Jude pain care, get him to sleep better, and get the doctors on the same page.

They were kind and informative and seemed to truly care. They listened and I think we will see results. Again it's a different level of care but I think Jude will benefit from it.

A journey

Jude didn't have a great night again. That means lack of sleep for us all. It's tiring and frustrating but we are marching along. We have a Palliative care team meeting for him Saturday so I am hoping they can help a little.

Yesterday I was reading a post in a forum about how frustrated a mom was of a special needs child was and I could relate. She felt that people complain so much about what seems to be insignificant things. Since she is dealing with such a heavy load she found herself getting very angry at these people. I have been through this and I understand. I think this hit me more when Jude was between 2-3 years old. I was very angry at that point and had little patience with many things. I would even get angry when I would see people's long "birth plans" mapped out on social media. I would think to myself  "How about you just hope you go in there and give birth to a healthy baby because sister you have NO idea what can happen". A bit mean huh? Trust me my thoughts could be even meaner.  I know the lady that posted in the forum is not mean at all I just wanted to share my experience because maybe someone could relate.  For me it was a part of the process of grieving for the child I didn't have and finding the amazing blessing in the child I did have. It took me awhile to realize that even though people's issues seem insignificant to me those issues are important to them. I also reminded myself of my own words..........everyone has their own story it's what you do with yours that makes a difference.

A friend of mine helped me remember that we are all different and all walking in different shoes. Some shoes are more worn than others. She emailed me after reading my blog one day when Jude was little. She is dealing with a terminal illness that causes significant pain. She told me how she loved reading our story and just wanted me to know something. She then proceeded to tell me that she knows our life is hard but she would give anything to be a mother. She would give anything to have a baby and would love a baby like Jude.  I told myself that I was allowed to vent and complain about the lack of rest and more because it was healthy. However I would never do that again without counting every single blessing I had. So that is why you sometimes see me starting my blog out with an apology and telling you about my blessings prior to venting. Because I was lucky enough to be chosen as Jude's mom. Because someone in a more difficult situation wished she was in my situation.

I then realized that we are all just living our lives. Some people have never experienced tragedy, some cannot handle tragedy, and some have to much tragedy. I realized I had to stop and accept that I cannot expect people to try on my shoes. They wouldn't be comfortable and they couldn't understand what has gone into making those shoes.  I had to respect that what is important in someone elses life, although insignificant to me, may be important to them. When I encounter someone complaining about something that seems frivolous I generally just reply, "I can totally relate and trust me I understand". Generally they take a step back and realize that life has so much more to offer and it could be worse.

I guess what I am trying to say if if you cannot find the rainbow then all you have left is clouds. I cannot tell other new special needs moms that it gets easier, but you do adapt. When people tell you that the first two years are the hardest they are telling you the truth. I know it seems like you are alone in a vast empty space and that no one can understand, but know there are a lot of moms in this world that know what you are going through. There are many of us that could change our shoes out and they would fit comfortable for the long journey we have ahead of us.

Jude's attacks, tone, and more

When I got home last night Jude once again had a terrible tone attack. After wrestling with him on the couch I decided to put him in his wheelchair. This seems to be the only thing that helps break the tone. As you can see he was pretty stressed when we put him in the chair. You can also hear the issues we have had with the mechanical congestion.

Jude spent two hours in the wheelchair. I miss holding him but he pushes his head back so hard into your arm that you can feel it the next day. Since I couldn't hold him I just held his hand.

I also gave him a dose of Valium to break his tone and calm him down. Eventually he became more calm and happy again.

 

I also believe he is having new seizure activity with these tone issues. He seems to hold his breathe for a few seconds and then recovers with a laugh. Classic Jude seizure activity in my opinion. I have put several calls into the neurologist but I have not heard back yet. I really don't think there is much they can do other than medicate him more. I think this is just a lasting effect from the surgery. Something happened whether it was from anesthesia or recovery. He slept a little better last night.

I still worry about taking Jude with us to Houston next month. I am not sure it's the best idea, but Mike pointed out Jude would be sedated at night when we drove there. I know it's a quick trip and probably not worth the worry, but I am still mulling it all over in my head. If Jude stays home we would have to bring someone in for several nights and could someone else truly care for him in this state other than his nurses. If we take him with us will he be okay in the hotel and on the drive back home. I think he would, but the drive still bothers me. If he had a difficult time it would be miserable for him and for us. I guess I have 30 days to figure it out.