Thursday, January 31, 2013

What does the Cow say Jude?

So last night Jude's breathing was sounded "crackly" to me again. I gave him a lot of CPT and with that he seemed to get better. He laid in my lap as we watched TV and suddenly the Chick Fil A commercial came on. The cows kept going "moooooooooooooo" and Jude thought it was hilarious. I suddenly realized that for some reason I have never gone over the barnyard animals with Jude. I have read him books, but we haven't gone through your standard "what does the cow say?" lines. So I decided I should treat Jude as normal and this is how our conversation went.

Me: (commercial playing) Jude are those cows? Do they say Moooooooooooooo
Jude: ea (sounded like y-ea)
Me: Jude what does the cow say? Moooooooooooooooooooooooooo
Jude: aaaaa
Me: that's right
Jude: smile
Me: Jude what does the cow say? Moooooooooooooooooooooo
Jude: aaaaaa
Me: yes!
Mike walks in
Me: watch!! Jude, what does the cow say? Moooooooooooooo
Jude: nothing.... just a few crickets chirping!
Me: Oh come on Jude show daddy. What does the cow say ? Moooooooooooooo
Jude: (smile) choir of crickets chirping
Me: Well Jude you little stinker!
So Mike heads back upstairs and Emily walks in
Me: Em watch! Jude what does the cow say? Moooooooooooooo
Jude: aaaaaaaaa
Me: Well that solves it he just likes me better

So a lesson learned. I need to remember to work with Jude on regular everyday items that we work with preschoolers on. I have always said he knows more than we give him credit for.

The nurse checked his lungs this morning. She said his left lung did sound crackled but it was better after his breathing treatment.

Tuesday, January 29, 2013

a video of Jude and some sleep

Jude has been doing well lately. He has been giggling a lot and really working hard lately. I thought I would share a recent video of Jude working on holding his head up.

Only issue I still have is that Jude still wakes up at night. Last night I got up about four times with him and that doesn't count the times Mike got up. I know it will always be like this since Jude cannot roll himself over, but it is just taking a toll. I finally broke down and called my doctor to see if there is something she can give me to relax at night. I am not a fan of medication, but I guess I have held out for over four years. It's better than drinking, binge eating, or smoking I guess. Part of what convinced me of this is I had a major heart palpitation attack this morning. They don't usually bother me but this one lasted awhile fluttering on and off. Which in turn sends me into an anxiety attack because at that point I am convinced I am dying (insert giggle).  I guess my body is saying it needs a little rest.

Last night as I worked out I noticed my trainer put a 50 lb weight on the floor. I stared at it and then looked at him like he was 100% insane for even thinking I could lift it (which he didn't expect me to). However, then I realized that Jude is a little over 40 pounds and I lift him all the time. I think he is my little exercise master.

We are still trying to decide if we are going to convert the bathroom for Jude at our current house or look at moving into something different. We still worry about the loss of the master closet and what it will do to resale. 

Have a good week!

Monday, January 21, 2013

a little positive energy

This past weekend Emily and I had a girls trip to Houston for her to compete in the teen side of a pageant. She did very well and we had a wonderful time! However, I did miss Jude. When I got home and walked through the door I said "Juuuuuuuuuuuuuuuuuuuuuuuude" and he smiles so big!!! He was so happy to see me too.

So even though I appreciated the get away with Emily I appreciated coming home too. When I administered Jude's medication I stepped back from his bed for a second. I looked at his IV pole with his food bag hanging from it. The bag was full of his nightly feed and water. I thought to myself that I was happy to be home and very okay with our life. I felt a peace and a calmness as I turned off Jude's light and told him "Goodnight Gorilla"

Ps. I mentioned I would share quotes from a site I found. Here is another one "Let the knowledge that you always have a choice empower you to meet one more day in a negative situation by radiating, and basking in, your own positive energy."

Wednesday, January 16, 2013

Jude's lung update

Mike took Jude to see his pulmo yesterday as a follow up. The report was actually really good. He said Jude's lungs look like that of a child fighting a normal viral infection. He said he didn't think there was any issue with mucus plugs or deterioration like the ER doctor stated. He reassured Mike that there is no particular "time limit" on Jude, but also made it clear that the older he gets the harder it is to treat the recurrent infections. He said it generally becomes a pretty big issue in their teens, but that he watches and adjusts medication diligently.

We are happy that it looks like he is doing better. He also says he sees NO reason why Jude cannot go back to school but the therapists disagree. I am going to put a call into Jude's school to check on flu, strep, etc cases. The doctor said what I always tell Mike, "we cannot keep him in a bubble". However, we can be cautious.

We are all beginning to feel better. I am still on quarantine (self imposed) from my sisters new baby and I cannot wait to see him. However, I didn't want to take anything over to a new born (illness wise). I am also very content and very happy lately. Stressed, tired, but happy!

Tuesday, January 15, 2013

A jude update

Jude has a doctor appointment today at 2pm with his lung doctor. I am anxious to hear what they have to say. The nurse said he sounds much better but still has "coarseness" on both sides. We have decided that we will not be sending Jude back to school any time soon..........if at all. He has therapy by three different therapists in home twice a week. I may also talk to the school to see if they can offer him anything home bound. Since Jude has gotten better he has been very cute! We have noticed an increase in Jude's ability to communicate in his own way. When I get home at night he immediately wants me to pick him up and expresses this through making loud vocal sounds like "Uhhhhhhhh".  When I pick him up his left hand immediately reaches to brush his left cheek, which is the sign I taught him about a year ago for mom. So when I noticed he was doing this again I said "Mom?" and he got a HUGE smile on his face. I said "you are so smart Jude" and he smiled even bigger. Sometimes even I forget Jude is a stroke victim and he knows what we are saying to him. Yesterday Charlotte said he did amazing in speech therapy. He was in his stander and kept hitting the button on the toy every time the teacher asked him to. He also opened his mouth wider last night each time I asked him to so I could brush his teeth. These are small steps but good ones.

So our primary goal is keeping Jude well. We are all washing our hands on a regular basis and not taking Jude out of the house right now. I know he probably gets tired of the inside of our house, but we know he loves to be at home.

I will update tomorrow on what the doctor said.

I wanted to leave you with a quote I found today regarding dealing with negative situations and people while maintaining a positive attitude. I thought it was amazing. "Forgive them. Forgive them for everything they have ever done that has been difficult for you. Then forgive them again and again for each new bit of gossip, sarcasm, or anger."

Monday, January 7, 2013

What happened Friday

I have been at home with Jude and I have not been able to update exactly what happened on Friday. Jude had been up a lot Thursday night because he was having difficult breathing and he was uncomfortable. As soon as Charlotte got there I explained what happened and then went back to bed for a bit so I would function at work. About an hour later I walked into Jude's room and Charlotte was still working with him to get his vitals stabilized. She said she was concerned because she couldn't hear any air moving in his lower left lung. He blood ox levels had been in the 80's and his heart rate was almost 180. She had managed to get his blood ox back up.  So I told her I would go into work until our receptionist arrived and then would head home to take Jude back to the doctor. My plans quickly changed as Jude seemed to continue to deteriorate. I then called Mike asking if he could head home and I finally just ended up calling 911.

They stabilized Jude in the ambulance in regards to oxygen and we went on our merry way to Cook's ER again. Once we got in the room the doctor could tell Jude was really sick. She ran a host of tests including blood counts, pneumonia, and RSV. They all came back fine or negative so everyone was at a loss. The doctor finally ruled that she didn't agree with the FLU B diagnosis from that Wednesday and believed we were looking at a lower lung viral infection. She gave Jude an IV of steroids and gave us a prescription. She said she believed Jude was acutely (there is that word again) sick but was releasing him to us to go home. She knew we had nurses at home that could care for him. So I called our home health care to request a night nurse for Friday and the weekend, but they were unable to accommodate. However, Mike and I did just fine. We hooked Jude's pulse ox up to his big toe and set the alarm to go off at specific numbers. It made for a sleepless night, but at least we knew we would get to him if there was an issue. We also pushed fluids and stayed on top of the medication. Our nurses during the day were wonderful and made sure Jude got his CPT and his breathing treatments around the clock.

With dedication Jude went from looking like this (after a breathing treatment and steroids at the hospital).

to this

Even though I was calm on Friday it was a very scary moment. I hadn't text anyone but very close friends + family. However, the realization that we may lose Jude was staring at us in our face. Mike posted on facebook for prayers and the calls flooded in. We were very lucky but I was a bit overwhelmed until I knew Jude was okay. So I didn't text back right away and I apologize for delays.

It's been hard on Jude lately. He battled pneumonia, then the flu, now the lower respiratory infection. I am concerned about his immune system and the ongoing respiratory issues. Also, as thankful as I am in regards to my life I am teetering on the edge of ........ losing it (well kinda). I am tired! I am tired of not sleeping, of everyone being sick, of working on hard, and having to be out of work. Emily now has an upper respiratory infection and Mike is sick too. When I got to work today and was so overwhelmed with the stacks of paperwork sitting in front of me, the never ending ringing phone, and a computer that decided to go down ...... that I just lost it. My poor boss just kinda walked However, my tribulations are nothing in regards to Jude fighting everyday to be healthy. So I will look forward to my vacay in April and hope that we actually get away this time. Em and I are suppose to be going to Houston on the 18th, but if Jude doesn't continue to improve that will not be happening. So we will see.

My sister had her baby this weekend! A little boy named Caleb who was 7 lbs even. I wasn't able to be there as I didn't want to spread anything Jude may have had that may have passed to me. I will get to see him every soon! He is in the NICU for low blood sugar, but that is common since my sister had gestional diabetes. I am sure he will be just fine, but a few prayers would be great.

Saturday, January 5, 2013

A little update on Jude

I will go back when I am by a large computer vs my phone and explain to
Everyone in bloggerville what happened with Jude yesterday but until then I am posting a small update. After our huge scare the hospital felt comfortable enough releasing Jude to go home. What you have to remember is we basically have a small hospital here with nursing at least ten hours a day. Plus we are medically trained so if they can avoid keeping Jude in a building crawling with germs they will. His pulse ox was still in the low 90's but his respiratory waves were consistent which is good. We hooked his pulse ox/heart rate monitor up last night so we could all sleep. It went off about 5 times but we were able to quickly remedy the situation. Our nurse (god luv her) got here about 7 and I went back to bed until 10.

She said it took her about an hour of working with Jude when he woke up to get all his vitals looking good. He just has a lot of junk that builds up while he sleeps. He is still very pale and we are watching him close. The doctor prescribed him steroids and we are hopeful they will work. I will
Update the full story Monday. We are thankful to everyone that has texted or emailed.

Thursday, January 3, 2013

An update on Jude on his new bout with flu and more

Sunday night Jude started getting really cranky with me and wanted to be held constantly. This is generally an indication he is not feeling that great. However, on Monday he was once again smiling so I just chalked it up to a bad night. Then he decided to get cranky again. So yesterday morning he woke up and I went in to give him his good morning kiss. I said "Good morning Ju Ju" and he smiled real big, but when my lips touched his forehead I said "WOW!". I asked Mike to get me the thermometer and Jude's temp was 102.7. I pulled the covers back to let him cool down as much as possible and his fever went down to 100.7 (all these were taken auxiliary so add a degree). A fever isn't necessarily a bad thing. A fever is the body's way of fighting infection.........however in Jude it can signify pneumonia.

So I went into work and then left around noon to take Jude into the ER. We spent 7 hours at the ER getting tests and waiting. They tested for Flu, pneumonia, etc. I told them he had the flu last month so I doubted that was the issue......but sure enough he has it again. The CDC said the time lapse between the last case made it impossible to be a remaining virus... so somehow he picked it up again...sigh. So in a non-chalant way the ER doctor said Jude's chest X ray showed mucus plugs but no apparant pneumonia. Ok back up rewind...........what's a mucus plug? I mean other than when you are pregnant. So he explained that in people with chronic respiratory issues they can develop mucus plugs. Here is some information. I asked him if this can be a sign of the breakdown of Jude's lungs due to the continous issues he has had. He said it would make sense because there are decreased breath sounds in Jude's lower lungs which is an indication the top is working better than the bottom. What does all this mean? Who knows......... another we wait and see issue obviously.

So last night I was rather upset after hearing all this and felt pretty despondent, but then I reminded myself of something. As great as the ER doctor was he was not a specialist. So I told myself I would not panic until I talked with the Pulmonologist (I figured this out after I texted my closest friends in despair..sorry guys). I placed a call to him first thing this morning. Once they called back I...... well was both irritated and relieved. I was irritated that they did not review the actual X ray like I asked them to and only reviewed the report. His nurse said that the Pulomonologist has deemed Jude as "acutely ill". The relief part came when the nurse said the specialist believes all of Jude's illnesses lately are the direct result of the mucus plugs and not a sign of a chronic issue. However, they can't be sure. They basically said to continue the CPT (compression therapy), continue his breathing treatments, have him rest, and give extra fluids. However, if he continues to grow weaker, or more irritable, or runs a fever again to bring back to the hospital. So basically everything I already knew. Anyway, he is already more irritable today. Charlotte called earlier and had given him a dose of diazepam (Valium) so he would sleep. He is whining, rigid, and miserable....but he does have the flu.

It's always a toss up of wondering with Jude. I am very thankful for his nurses at home because I would probably be a walking panic without them. So we will continue to watch Jude closely. It's always a guessing game with him, but I am very thankful for all the equipment we have for him. I honestly don't know what these continued illnesses mean for Jude. I don't know if it's a fluke or an indication that his body is just that immune compromised. We all wash our hands so well, Jude had the flu shot, we keep him indoors with no it's up in the air. I can share with you something personal. I don't want any backlash on this or email about how everything will be fine. My worse fear is putting Jude down to sleep and losing him during the night. It keeps me awake a lot lately and I am always placing my hand on his little chest while he sleeps. I fluctuate between thinking everything is fine and just our normal to knowing Jude is not well lately. He still smiles for the most part and still vibrates with the positive innocent energy he always shines with. So we will continue to monitor him and continue to help get him well.