Update

Jude's tone is still really terrible. He had Valium today which really seemed to help, but he is toned out again. Thank you great Canada nurse for your response and I wondered if this was a build up of Baclofen. He does gasp for air like the Baclofen is causing his muscle to relax in his throat to much. However, if anyone knows if the Baclofen builds up wouldn't it cause an overdose? Wouldn't Jude show signs of having to much of the medication in his system?

He is pretty warm tonight but his temp is only 99.4. He is smiling which is great!!!

Ps. I think I hate Baclofen (lol...kinda).

Hmmmmm advice from Baclofen users

Well Jude is throwing up again and has been for a few days. Seems to be after every meal, but sometimes up to an hour after the meal. He isn't in any danger yet, but I do think he is losing some of his seizures medications. His seizures have picked up and he is presenting with new ones. He started this new seizure where he sounds very scared and it's heartbreaking. His vitals are good except the pulse ox dips at night......not all that uncommon but it can drop to the high 80's. No fever and his lungs sound good. The Spinal fluid leak is still pooled around the incision and it's not leaking. His clonus and tone are just out of control so the nurse is giving him valium today.

We are kind of at a loss. There isn't much they can do because Jude's not officially "ill". He just still isn't himself and there are a lot of "hmmmmmmmm" moments. Any ideas from people that use Baclofen, nurses, or doctors is great. Honestly, I think it's just a wait and see situation unless Jude continues to vomit.

Luckily he is still smiling.





Sign the petition to help the kids! https://www.change.org/petitions/john-cornyn-and-rick-perry-and-texas-state-senate-legalize-cannabis-oil-in-texas#

The Petition

I started a petition today to legalize CBD or cannabis oil in Texas. It will join the hundreds of other petitions I am sure. I want to be honest. I don't believe the oil will help Jude's seizures because they are the strongest and hardest seizures to fight. However, it cannot hurt to try it. In addition there are thousands of children in Texas that could benefit from this natural medication. Here is the link for the petition.

https://www.change.org/petitions/john-cornyn-and-rick-perry-and-texas-state-senate-legalize-cannabis-oil-in-texas#

and here is the explanation I put on the petition

Cannabis oil has shown amazing promise in preventing and curing seizures in pediatric patients. With less than 3% THC the oil does not contain the properties marijuana has for inducing any altered state of mind. If Texas passes a bill then cannabidiol or CBD for short can be used in trials with Texas doctors to help our epileptic patients. Several neurologists in the area have been pushing for this to happen and back the oil being brought to TX.
There have been stories across the US of children benefiting from CBD such as Charlotte Figi in Colorado. Her mother posted the video "Charlotte's web" which obtained national attention. Charlotte would experience up to 300 seizures weekly, but after taken CBD twice a day with her food the seizures were all but eliminated.
My son has a severe form of epilepsy called Lennox Gestaut syndrome. He is currently on Depakene and Felbatol which both carry high risks of side effects. The Felbatol alone has shown to destroy the liver and can be fatal. The likelihood of CBD helping my son is minimal however as a parent I have met and watched so many other children that could benefit from it. Therefore, my husband and I vowed to help those children obtain CBD and hopefully help them live a fuller life.
Above is a video of my son suffering from Infantile spasms. It's not easy to watch but it's the reality of what these children deal with. This was shot prior to his seizures growing into a larger harder to control situation.  Infantile spasms are a neurological seizure disorder that can cause developmental delays and other issues. Infantile spasms are just one of the conditions CBD shows promise in treating. One of the current medications on the market to treat children with Infantile spasms carries a whopping $25,000 a day bill and has possible lethal side effects. We should have the option to try a less invasive medication for our children. Please consider following other states that are passing CBD!

I also listed a video of Jude's infantile spasms when he was little. So if you could stop by and sign then share with your friends/family on social media I would appreciate it. It literally takes seconds.

A life lesson

Life can change in the blink of an eye. Not everyone learns that statement the hard way, but many of us do. A life can be taken, a life can be changed, a life can be altered.

We have a habit in America of coming to expect certain sort of lives and when that dream is shattered it can really open your eyes. Along our journey we have met people like us that had every expectation of having the perfect pregnancy only to learn it wasn't. We have met people that expected to have a football playing straight A son and like us........they don't. We have met mothers who are teary when they tell us that their beautiful daughter that was once so lively and happy has been permanently disabled in a car wreck. Likewise we have met those that lost their child all together.

When things like this happen people tend to move through stages of grief. I personally went through depression, selfishness, anger, lashing out, and finally acceptance. I am sure it took a lot of patience from friends and family to see through my actions and understand where they were coming from. Finally you reach that acceptance and marching forward state. I found you move a little slower, you think a little deeper, and you love a little harder. I recently started eliminating activities out of my life. I think I did so much because it kept me busy.......it kept me going, but I found I just don't need that anymore. I am okay with being still and taking in the light of the day that shines on my two kids. I try to stop and think now before I say anything, before I make a move, and before I might hurt someone. I ask myself "is it worth it?".   I am not saying I don't make mistakes because I do. I still go through sadness at times and a profound amount of sleepless nights. This makes one a bit cranky. However, life has a way of changing when you realize what is truly important in life. To me....people are important. We meet all kinds of people in life and some become our friends and some are our family.  I believe you wouldn't become friends with someone unless you saw a little piece of yourself in them. If you saw the good and I think the good can always be salvaged. Sometimes we just need a little understanding, sometimes we need a little break, but in the end if you look close I think anything can be salvaged and that deep down as Anne Frank said "despite everything I believe people really are good at heart".

My daughter posted this yesterday and I am sure many of you have seen this You Tube of Madea, but I haven't. If you look it up on you tube you can research Madea's tree speech.

"If somebody wants to walk out of your life, let - them - go!" 

Some people are meant to come into your life for a lifetime, some for only a season and you got to know which is which. And you're always messing up when you mix those seasonal people up with lifetime expectations.

I put everybody that comes into my life in the category of a tree. Some people are like leaves on a tree. When the wind blows, they're over there... wind blow that way they over here... they're unstable. When the seasons change they wither and die, they're gone. That's alright. Most people are like that, they're not there to do anything but take from the tree and give shade every now and then. That's all they can do. But don't get mad at people like that, that's who they are. That's all they were put on this earth to be. A leaf.

Some people are like a branch on that tree. You have to be careful with those branches too, cause they'll fool you. They'll make you think they're a good friend and they're real strong but the minute you step out there on them, they'll break and leave you high and dry.

But if you find 2 or 3 people in your life that's like the roots at the bottom of that tree you are blessed. Those are the kind of people that aren't going nowhere. They aren't worried about being seen, nobody has to know that they know you, they don't have to know what they're doing for you but if those roots weren't there, that tree couldn't live.

A tree could have a hundred million branches but it only takes a few roots down at the bottom to make sure that tree gets everything it needs. When you get some roots, hold on to them but the rest of it... just let it go. Let folks go."

I have had to let some people go. Doesn't mean I don't still love them and think about them all the time because I do. I also have some pretty large roots too so I consider myself one of the lucky ones.I guess it's the same with letting things go that were keeping me busy. We just get to a point that it's okay to sit back and soak it all in.

Life teaches you to say thank you. So thank you to my leaves, thank you to my branches, and thank you most of all to my roots!

Pulse ox is low, heart rate is high, this little mommy says sigh sigh sigh

Have you ever had those moments when taking care of your child that you knew something was wrong? A mommy intuition that something is just..........not...................right?  I just feel like there is something going on with Jude. It's one of those feelings I wish was wrong. When analyzing work and our current situation I know it would be best that Jude stays as healthy as possible until 2015! A strange assessment but the honest truth! Well I prefer he stays better forever.

When Charlotte got here today to care for Jude while I went to work I explained that Jude has been very happy, but a bit off. Throughout the night his pulse ox kept setting the alarms off. I was up and down repositioning him, lifting his arm, and calling his name. When his continious feed alarm sounded around 5am I was pretty much just beat and I think Jude was too. So we both drifted off for a good two hours worth of sleep with everything perfectly stable! Mike left for work and we both still slept comfortably.

Charlotte said that Jude's pulse ox dipped several times for her as well and he slept until almost 11am. Not like him. She also said he vomited today......ugh! Ironically I had placed a call to Jude's GI this morning explaining that Jude has gone three plus consecutive days without vomit and that we had learned we had to keep his night feed consecutive and not raise the feed more than 70ml. If we did raise it above 70ml he vomited everywhere. I thought we may have found the magic feed rates to keep him from getting ill.

Let's fast forward to tonight. I placed Jude in his bed......changed his poopie diaper which he thought was HILARIOUS! I kissed him over and over and told him goodnight. I gave him his medications and slowly crept out of the room. Mike and I were enjoying some TV when we thought we heard something so I paused the TV..........but we didn't hear anything. Finally Mike got up and we heard something else so Mike walked to Jude' room. Suddenly I heard Mike YELLING "come here......lights lights.......I bet he has aspirated!!" UGH! Jude had thrown up again. " He was choking" Mike yelled. Double UGH! His vital monitor was on and it dipped to the low 90's with a heart rate in the high 160's. I got him cleaned up and changed his shirt and slowly the vitals started balancing out to normal (whew). Did you know if someone aspirated you can (sometimes) tell within an hour.

I told Mike that I had informed the neurologis today that there may be some issues and that there office mentioned a possible virus. He said, "this isn't a virus this is the spinal fluid leak". We both know it, but there isn't much we can do but wait and see. Jude is always a wait and see. I did pick Jude up tonight off his back and placed him on a pillow so I could hold him, kiss him, and talk to him like I normally do. He smiled SO big, but maybe it was so much for his back. Maybe it's our want to be with him that inhibits his progress but we aren't putting him in his wheelchair and he does need tie to sit up.

I am hoping that Jude has a restful night and that he is actually getting better and that I am very wrong!

Jude's update

Jude still has to lay mostly as flat as possible due to the spinal fluid leak. People keep saying they are seeing a change in the bump, but when I go to change his diaper.........it's the same. I have confidence it will heal on it's own but right now the swelling is still there.

Jude did well today, but he did present with a few things. His heart rate is running high to me at 146 or higher. His pulse ox is great at 100!!! However, his neck is very tight and toned. His axillary temp is 98.7 and he is presenting with new seizures. I don't like these seizures. He seems to be holding his breath and staring off for a long time and it's scaring me a bit. I am trying to envision Dr Riela's voice saying "eh it's just abnormal brain activity and if it gets out of control we have medication".

In regards to the nursing issue we learned it was the lack of Jude's seizures (because he is heavily medicated) and the lack of an overnight feeding (which he has back on) that caused the company to deny nursing hours. If it came down to it I am sure I could be Jude's personal care assistant, but would he be as well taken care of? I would like to think so but our nurses are well trained. I can point out issues and they will monitor Jude like a hawk and let me know and the mere suggestion there might be something forming. I truly believe that's why Jude is still with us and been able to overcome his illnesses. They can listen to lung sounds and here the very infiltration of aspiration. Wish us luck fighting to get the with us.

I hooked Jude's monitor up overnight so I could watch him. I am sure he will be great.

Jude's bump and doctors update

Mike took Jude to his Pediatrician today and then to the neurologist for check ups. The Neuro said the cerebral spinal fluid leak isn't ideal, but it happens. They really believe Jude's body will heal the leak itself and agreed we should just watch him. That's good news and we will continue to monitor Jude and hope he doesn't need any further intervention on the matter. They also increased the Baclofen pump a tiny bit. They said they were very hesitant with how Jude has responded to go up any further, but they did want better tone than he has now.

To top off my month from Hades we received a letter stating they were decreasing Jude's nursing hours to 28 a week. This makes absolutely no sense and honestly seems like a failure on the deciding parties fault for not investigating Jude's case properly. They suggested a personal care attendant, but they cannot give breathing treatments, administer medications, handle controlled substances, and more. So I guess they think Jude can do it? So it will be a lengthy process but all of Jude's doctors are behind us and ready to step forward to get him what he needs. One even expressed her complete frustration with the system and the "lack of proper interest and care regarding children that truly need this service". We are very grateful for the care and services Jude receives. Without them we could not work and would be dependent. However, this just really came at a bad time.

So to move on to the next subject. Am I frustrated lately? YES! It's allowed. I also understand that everyone wants to help in some way, but that's difficult. I appreciate your kind words and your thoughts for Jude and the family. I learned a long time ago that it's okay to feel completely frustrated. I am tired because I don't sleep well. It's hard managing work and home. Dealing with insurance on Jude. Plus, honestly dealing with rude and obnoxious people that have absolutely no idea what's truly important in life just wears me straight the heck out. So would I like to run out into the street this week and yell my mother bloody head off? Yep! However, I have also learned that there isn't much you can do regarding those items you cannot control. So you just pick up the pieces, be thankful for what you have, and keep marching on. It's the way it works. So don't feel down if I seem upset or at my wits end. It's just one of those months.

Have a great day all.

The good and the bad

The bad news ..............it's spinal fluid. The good news is that they are comfortable letting him stay home for now to try to resolve this (yay). We got specific instructions.

1. Jude has to stay flat either on his side or his back, but flat.
2. Limit all activities
3. Any type of actual leaking from the site requires immediate transport.
4. a fever of 102 or higher requires us to take him in right away.
5. If the site gets larger we go in.

So we are all going to be very vigilant about this and hopefully get Jude healed at home. It's always a waiting game with him. I am very thankful they don't think this is a Baclofen leak!  Some prayers that we can get this handled without surgery or intervention would be wonderful.

Jude is going to see the neurologist tomorrow and he will double check the site to make sure he doesn't think it warrants anything else. He then has another follow up with the actual surgeon on the 15th.

UGGHHHHHHHHHHHHHHH

Well I am currently sitting in my office crying. It seems the golfball lump on Jude's back may be something serious. I was really hoping it wasn't. Maybe just a collection of fluid? I am still holding out hope.

The neurosurgeon is waiting on the pictures I took to come via email and then they are going to make a decision. They currently have Jude flat on his back at the house.

The nurse/doctor know I am frustrated and I can hear in their voices how concerned they are about us and Jude. They believe it's probably one of two things. Either a cerebral spinal fluid leak which will require a blood patch or the Baclofen is leaking and collecting in the spine. The later part is what sent me a bit over the edge.

I don't want Jude to go back through another surgery. I don't want to lose my job. I think we need some prayers that this is a Seroma. I am not sure how far after surgery those can form. We are 22 days post op now so the nurse sounded a little doubtful it was from the surgery itself.

Hoping and praying he calls back that this is not an issue. I will keep everyone updated.

Again...........I am thinking positive.........just fluid. Just fluid!

Is this normal??? UGH!!!!! Anyone had the Baclofen pump,

We are twenty days post op. Tonight I was getting Jude ready for bed and I turned him over to check his incision. Jude has been super happy but laughing a WHOLE lot and sleeping a bit more than normal. Since laughs can be an indication that Jude may be in a bit of pain I started to look him over. I discovered the incision on his back looks pretty swollen. I sent the picture of it to a very nice nurse friend of mine and she admitted it looks a bit concerning this far post op. We have a scheduled appointment on Thursday and I really think that will be okay. I gave Jude some Motrin to see if it decreases the swelling any. So I am wondering if this is normal, a spinal fluid leak, or an infection. If anyone has had a Baclofen pump I would appreciate opinion. We used our fingers to show the measurements.

 

I am not panicked. Jude does not have a fever, he seems happy, and he is resting comfortably. However, his heart rate is a bit high, it does seem swollen, he is sleeping more today, and it's a bit warm to touch. So I am basically looking for opinions prior to our office visit.

A quick update on Jude's progress

Jude seems to be healing very well! His incision sites look great and are healing nicely. He is sleeping much better and is tolerating his feeds better. We are still not running his food at full capacity, but he is getting there. He is also smiling a lot and he is really looking me in the eyes more. In addition the medication for his arms and legs seems to be working. I notice more movement in his arms than the bottom portion of his body, but at least it's progress. Do I think the pump was worth all this.......I am still undecided.

The rest of us are falling back into place as well and life has resumed as normal. However I am not completely out of vacation days at work and I really wanted to go somewhere with my husband. I am going to choose just to be thrilled that Jude is home with us. I love going home and scooping him up and holding him for hours while we watch TV together. I kiss him on his head every few minutes and he just smiles happily.

Jude goes in for his post surgical doctor appointments tomorrow. He will also check in with his pediatrician.

The Boppy is a fabulous invention!!!

Today Emily received a sweet email from a young man on her charity's facebook (Emily's Smile Box Inc). He said he wanted to start something like she did, but wasn't sure what to do. So we asked him if he had any ideas, but he was a bit lost.

So I wanted to share something we learned from this past hospital visit. There is one invention we brought with us to both hospitals that literally EVERY nurse commented on. Drum roll................

The infamous.........Boppy

 

 

Throughout Jude's life we have used many boppy's! I have learned that you can find them at resale shops for about $3! They are literally amazing for positioning and great for keeping a disabled child in position. They are comfortable, not over heating, and really a God send! When you are at the hospital the nurses try to make a "nest" out of towels and blankets. It generally always falls apart so they were ever so grateful for Jude's boppy! To be honest it wasn't just the nurses.....even Jude's surgical team took his boppy back with them and the paramedics in the transport ambulance LOVED it.

So here is a challenge.........the Boppy challenge. When Jude is in the hospital he always get's a "Prayer Bear". It's from a group of people that gather bears and have them blessed at altars at local churches (truly touching) and they are so loved! The Boppy challenge could be new Boppy's purchased and dropped off at local hospitals for babies, toddlers, and the disabled. Each patient could get their own. Maybe a little note attached that says "Blessings from the Boppy challenge!". Maybe even the company that manufactures Boppy could get involved?

They truly are a blessing!!!! You can't even imagine who amazing it is to have an IV in your child's foot and you can position them in a boppy with a pillow underneath that elevates the foot......or maybe you actually can picture it?

Maybe someday we can get an Emily's Smile Boxes boppy. Little ones for NICU and bigger ones for older disabled children. Tiny Boppy's for Arm Iv's? They are a brilliant invention and so dearly appreciated by those of us who are frequently positioning children at night and in the hospital. I am currently looking at Jude resting on his Futon laying on his pillow, positioned in his Boppy, and his tube feed flowing.

Thank you!

I have had a very blessed night. I am so super happy that Jude is back home that I haven't said much about how exhausted I am. I guess I didn't need to say it!  I walked into the house tonight and there was my adorable friend Gina L cooking dinner! She had done my dishes and was just there to give some hugs. In addition my friend Kelly has texted, called, and more! The topper on the night was when I opened a card from my aunt Caron that had some funds to take care of our groceries. I sold my pageant so I was financially okay. However after I paid off refunds I needed to send, upcoming obligations, that didn't leave much left over so it's like she was psychic. We also found out we will probably have to cover Jude's transportation ride. So I just smiled when I saw her card. She is very wise and once told me.........just accept it. People want to help so let them because it makes them feel better. So I accepted it. I felt so bad because she had donated 75 chocolate bars towards my pageant that won't take place, but I can roll them over to Emily's 9/21 charity event and they are so yummy that everyone will love them! Keeping a healthy balance between help and your pride is a challenge.

Jude was up last night so late and Charlotte told me he slept until 11:45 today. She said she kept checking his pulse/ox every thirty minutes and just decided he was tired. Overall he seems very well tonight and his congestion is a lot better!

I just wanted to post a quick blog about how thankful I am for people's support, prayers, food, and more. Sometimes people's generosity is overwhelming.

A quick update

Jude is pretty thin, but he looks SO much better. Yesterday I was holding him while watching TV and he began to retch a bit. I think he was in a bit of pain so we gave him some Motrin. I also ended up giving him a breathing treatment because he was so congested.

He had a bit of an issue with his pulse ox last night but he looked good so I chalked it up to user error. We are going to progress his feedings soon to try to get back to his regular Bolus amounts. Hopefully he will gain some of his weight back soon.

Overall I think he is doing much better. Hopefully this congestion issue won't progress any further but I believe we are all on top of it.

Thankful and an update on Jude

This is my first full day away from Jude and back at work. I checked in with Charlotte earlier and she said she had given him some Motrin but that he was doing well. A respiratory therapist from Cook's Home Health stopped by my office to drop off a new pulse ox machine. It is pre-set to Jude's specific stats and will alarm at night if something goes wrong. The nurses will also be able to monitor him during the day.

This is the third time we have left the hospital and I have heard from a doctor or nurse, "I wasn't sure you guys were going home because he was one sick little boy". They don't say that in a negative fashion even though it sounds that way. When they say it I believe it's positive and a reflection on the fight Jude has in him. This was a battle and just like the C Diff, and like the empyema Jude made it through.

I think Jude can teach us all a lot of lessons.

1. When a little boy is in life threatening danger you drop your personal issues and get up there to see him because it just may be the last time you do. Don't look back on your life with regret because it's just so short.   

2. Jude is his own person. He is not defined by his illness or his disabilities. He communicates in his own form or fashion and he knows what he loves and who makes him feel comfortable. So people shouldn't look through him or over look him. It meant so much when the nurses would walk up and explain what they were doing before they performed an act. Jude would look at them with interest and acceptance.

3. Seizure medications although harmful are very beneficial. Jude has been on them for so long we forgot how horrible those demons look like. When they rear their head there is no mistaking the fact you need the medication.

4. Mom's and dad's are their child's ultimate medical advocate. SPEAK up and don't be afraid to! Jude's IV line was infiltrated with vancomyson and it's only because I spoke up that they caught it.

5. Paramedics are nice!

6. Parent of ill children need help and I plan on helping them. I think having pizza delivered to the wing of a hospital once a month would be beneficial and something Emily's charity can take on. So if you are looking to teach your kids about helping others contact the local child life department. See if you can drop barbecue off or pizza. Let them know it's for a specific floor or tell them to pick one.

7. A good doctor is honest and forthcoming. You can ask them anything even the question of cannabis oil and can get an honest answer despite what the government thinks.

8. Good friends and family are indispensable in the midst of a crisis.

9. Holding your child after they are hooked up to an IV for days on end is an amazing feeling.

10. It's important to find the positive in every situation. While in the hospital if the bath tub was to small, or the bed, or it was past café house we found a reason to be thankful because Jude was in the situation he was. At least we had a bed, at least we had running water, and at least there was a vending machine :)

Thankful Jude is home. Thankful Emily is safe. Thankful well just thankful!

A little update

Mike and I got out for a bit today when the nurse got here. We went about 45 minutes away to the compound pharmacy to get Jude's medication to stimulate his bowels. We then had lunch and picked up some items for the dogs. It was nice to spend some time together. We joked with each other and played a lot of Words With Friends.

Tonight I picked Jude up so he could lay across my lap like he normally does and Mike moved his feeding IV closer to me. Jude smiled, laughed, and babbled to me. It was so sweet!! You could tell that Jude was truly happy.  After about an hour I noticed that Jude started heating up......his head was really warm. Rather than take a temp I asked Mike to get me Motrin and I noticed Jude was starting to laugh a lot (remember this is an abnormal brain response). I should have taken his temp!! UGH! Hindsight 20/20.

I decided it was time to put Jude to bed. So I gathered his Depakene (seizure med), his felbatol (seizure med), his Klonnopin (sedative), his antibiotic to stimulate his bowels, and his medication to relieve any cramps. I made sure his feeding bag was full for the continous feed and then I took his temp. That's probably 30 minutes after the Motrin was given and it was 99.5 axillary, crap. Not to mention he has had a lot of diarrhea. So it's something to watch and something I sigh about! He is happy, smiling, and had very flushed cheeks. His pulse ox is a little lower than normal, but his heart rate is better than last night. Like I always say medicine is your best educated guess.

Allen the nurse noticed today how limber Jude's legs and arms are. I sure hope so because this Baclofen pump has been a nightmare and something I hope Jude doesn't have reoccuring issues from.

We are HOME!

The doctor came in this morning and said if Jude tolerated his medicines through G button today she was okay with him going home tomorrow. I said "Thank goodness". Then she came back in and said "You have nurses correct?". I explained that we do and she then said she would allow Jude to go home today. I felt so much better and I admit a little scared. Jude looks so much better but his incision is a bit intimidating, his bowels aren't 100%, and his stats are a little off. However, I know he will heal so much better at home and they know that too. We don't have a night nurse yet, but they are working to get one for the next week.

It took HOURS to get us discharged. We finally rolled into home about 5:30 and Jude had the biggest smile when we brought him into his room. His amazing nurse Charlotte rushed over and stayed with Jude for several hours. She made sure he looked good, checked his vitals, measured his incisions, and read over all the discharge paperwork.

I just gave Jude all his medications by G button and he has a continous feed going. I am sitting here blogging and tend to throw my lap top down and run if I hear anything that sounds like he may be retching.

I have to admit I was scared this hospital stay. Jude was a pretty sick little fella but in Jude style he turned around quickly. Hopefully we can keep him moving in the right direction here at home. I plan to sleep in my bed tonight, snuggle next to my husband, and enjoy our kissing on Jude. Emily is with her dad but she will be back tomorrow and then we will all be together.

After Jude got home and Charlotte was here we had to go get his prescriptions filled which was a chore in itself. Every pharmacy was either closed or didn't have all the medications we needed. Finally Mike turned around to me and said, "You know that saying about not waiting for the storm to pass but learning to dance in the rain? We are some dancing in the rain M F'ers". I had to laugh. You have to have humor!

Thanks to everyone who has prayed, texted, emailed, and put up with all my Facebook posts. It truly means the world you care so much for my son!

He looks like Jude again

Tonight is the first night that I have thought that Jude looks normal. He still has the neurological uncontrollable giggles and he is having some severe pain issues, but he just looks better! I also noticed the foul smelling odor has diminished. In addition the fever has vanished. I am not saying that Jude is well because he is still very ill, but I feel like I can breathe! Every time Jude gets so sick like this I hold my breath every second that he is not well. To me Jude is perfectly normal and just my little boy so I just want him well and with us at home.

Jude has been awake for 24 hours.........not even kidding. I asked the nurse how much he slept when I happened to catch a few winks last night and she confirmed....he didn't. He only calmed down and lay there quielty for about an hour.

They have turned Jude's feeds up and he has had his pain medication and a sedative for sleep. I think he will have an uneventful night. I hope we do and we can actually discuss a management plan for going home.

That's my prayer.

The run down

You know when you have those nights where you stumble into work and say "my kid didn't sleep well". What you mean is your child may have gotten up 2-3 times and it disrupted your sleep so you are really tired. When I say Jude was awake all night long .........I so mean ALL night long. Jude cried or laughed the entire night and well into the morning. The laughing has been determined to be abnormal brain activity like a response to pain. When Jude cried he would just wail! They tried Motrin and when it didn't work they moved on to Tylenol. I had requested they hold the Tylenol to see if he could have Loratab but they had to get something in him. It didn't work. Also, Jude did vomit at midnight so I immediately asked them to give the Zofran to preserve the other nourishment he had received. Luckily it worked!

The nurse had paged the pediatric on call doctor and she came in to see Jude first thing this morning. She said that the good news is that for the most part Jude is still tolerating his feeds. So they will be increasing the rate of the food today but not the concentration. They will do that as soon as I can get away from work and get over there. That way I can be there in case he vomits and I need to suction. The doctor said the pain could be a few things but she doesn't think it's related to the surgical site. This could be related to his intestines getting restarted. So she ordered a medication for cramping, the Loratab, and she ordered a small dose of Morphine to give him immediate relief. It took about 15 minutes but then the Morphine kicked in and Jude went fast to sleep. So I tucked him in and told him I would be back in a little while. Emily is there with him sleeping next to him on the couch. She is listening to his alarms and if he needs to be suctioned. She has been a HUGE help during this ordeal and at only 15 she is very mature. If you are a friend of hers you might text her hello today. It's pretty boring at the hospital hence the reason she started Emily's Smile Boxes.

I also noticed that Jude just doesn't smell well. I know that sounds WEIRD, but it's true. It's not just from laying in the bed either because I personally gave him a scrub down with baby soap last night. He is also sweating through his gowns and running that low grade fever. It got to 100.1 last night. The hospital doesn't consider that a fever, but for Jude I consider it one. I don't know if any of those issues roll into what his problem is, but it's worth mentioning.

So good news and not so good news. It's basically a waiting game. They already said we will be there through the weekend, but their goal is to get him home. He will heal better and do better at home. If he is in extended next week then we will be enlisting help again.

Also you know you have a good bank when you go through the drive through and they come out to give you a hug because they have been reading your blog. So nice.

FINALLY some good news!!!!

Per my prior post they started Jude on a continous feed that included diluted formula and the antibiotic. He has kept it down, but the even better news is HE POOPED! I know that sounds gross, but it's huge to us. Prior to this the formula or pedialyte just seemed to be sitting in his stomach and never digested so hours later he would throw it up. This means what he has been eating today has DIGESTED!

Oh my gosh I hope tonight goes well!! If it does I think we will be out of here on Saturday!! We will go home with our nurses since Jude is still very ill and recovering from his surgery.

Oh I hope this is it!

Thanks for everyone's prayers!!!! Let's hope tomorrow's blog update is just as positive. I will check back in 12 hours.

Jude's update for Thursday

Well here is the quick update because I am super busy at work. Mike stayed with Jude this morning until the doctor came and then Grandma and sweet friend Camryn took over. Jude threw up over night and has spit up several times today. They are trying an antibiotic today and slowly feeding some actual formula. If he cannot hold it down then tomorrow he gets the PICC line.

It's basically trial and error. We know Jude's body cannot hold out without nutrition, but right now he is very happy. Hopefully we will find a resolution soon.

Wednesday night's update

It's Mike who is on duty tonight. We found out a few things tonight.

1. Every doctor has a different diagnosis at both hospitals. So we have about 6 different diagnosis and now it's just a little comical. However, we understand that medicine is just your best educated guess. Mike and I believe that the surgery created a domino of issues and it's not just one isolated situation that has a certain cure.

2. Jude laughed all day today.......and Emily emphasised "ALL day". It was so cute, but we did find out the laughing/giggling are seizures and Jude has other large seizures presenting. So the neurologist reintroduced his Felbatol seizure medication via Jude's G Button tonight. Mike said it reminded him why we give Jude these harsh liver destroying seizure medications. I still wish we had the opportunity to try cannibis oil (no it doesn't make anyone high it's just oil). It's shown such promise in children with seizures. It's almost like Jude disappears when the seizures take over.

3. Jude hasn't thrown up since 10am. JUDE HASN'T THROWN UP SINCE 10AM!!!!!!!! I am so hoping he is on the mend. Please please pray that he doesn't throw up tonight. If he doesn't they will introduce some slow fed regular formula tomorrow. If that doesn't happen he is getting the PICC line. Yet another piece of hardware but life saving hardware.  

I cancelled my pageant that was in August today. I was broken hearted, but it was meant to be. I am one of those people that hates feeling like I have let others down, but I just felt like it was necessary. I have no idea when Jude will be discharged (HOPING Saturday) and when he is discharged he will still be very ill. Jude will need our full attention and we will need recovery time too. So therefore I made the decision that I needed to focus on my family. It will be a HUGE financial loss for me, but my family is worth it. I will be digging deep to make it work, but I will. We will have his nurses when we get home, but I just don't want to be away right now.

Dallas Medical City has been WONDERFUL so far. They explain every medication and it's possible side effects before they give it to Jude. Also, they have a full size bath tub........um anyone that knows me knows I am a bit more relaxed now. Their child life department is also phenomenal!!! Today they did music therapy with Jude. Since Emily and my cousin were both there the therapist incorporated them into the session and they all sang to Jude. I heard he LOVED IT. Then tonight they did puppy therapy and even though I know it was seizure related his smiles were so great to see.

Mike's had a hard day today. It's difficult seeing your only son go through such trauma and I think he finally broke a little. He really needed to and it's okay to admit you cannot always be in control of everything. However that man never loses his humor and always reminds me we are a team! He sent me the unmade bed and put "torture device". At least it's a bed but it's uneven and our feet hang off...but again it's a bed!! I just giggled! Then he sent me this picture and put "Ahhh resort!". I replied "We need a resort". he said "Just having everyone under one roof would be great". So true!!! I have said this before but every time we go in for an extended stay I so respect the moms/children that are in the hospital for months and YEARS.

On Jude's board in his room it says "Goal: No retching and no vomiting". Amen nurses Amen!

a wee little update.

Emily is with Jude right now while I work some. I did receive a call from the doctor who said their major concern is Jude has had no nutrition since last Wednesday. They are talking about placing a PICC line. They were going to do this tomorrow but I just got a text from Emily that it may be tonight.

Wednesday Update

Once we got to Dallas Medical City they were immediately on Jude's case. They began to suspect the Pancreas with the slow working bowels. They started up medication for seizures and for the situation at hand. They then wanted to try slow feeds that increased over the house, but Jude started vomiting again. He then began running a fever at 100.4 so they gave Motrin. The rested his stomach and then tried again. He began throwing up again this morning so they cut the feeds all together. His lipase went down again today. When the regular doctor came in she told my cousin she feels it may just be his body not catching up to the levels yet. The GI said he shouldn't be throwing up if the pancreas is showing better levels. So hmmmmm. The good news is Jude is very smiley.

So for those in the medical field. Feel free to give your opinions.  

Lipase went down from 700 to 400 now 233
Liver panel is normal
Two prior X rays showed normal bowels
Sonogram (again prior) showed normal pancreas and liver.
Scans have not been repeated since Saturday
Jude is receiving IV fluids with potassium.
No food since Thursday 7/3 and all that was voided.
Stats mostly look good with pulse Ox dropping when turned to the left side but not enough to warrant oxygen
irregular heartbeat at times.
Only medication that's new is the Baclofen but remember the trial went perfect.

They are running another chest X ray and I am waiting on the doctor to call and speak to me directly. I can hope that what the hospitalist is saying is accurate that this is just his body catching up, but something is making me think otherwise. Again, good news is Jude is smiling and happy.

I had to come to work and I hate being away from him. I am also getting a lot of Im's and texts so I am trying to return them all.

Teddy Bear Transport time and a craptacular evening!

So last night when I got to the hospital I noticed that Jude was retching a bit. Mike explained that Jude had a lot of congestion in his throat that he was trying to clear. So I didn't think much of it until he then started vomiting and vomiting. They gave him Zofran and about an hour later Jude finally stopped heaving or throwing up Pedialyte. He slept from about 11-3:00 am when it started over again. They gave him another dose of Zofran and Jude finally stopped. He went back to sleep about 6am but they woke us up again about 8. I feel beat up and I am SURE Jude does.

The neurosurgical team came in and basically said we had to make a decision. I had them withhold the Depakene (seizure med) last night because I was afraid that since it was reintroduced and Jude threw up that it could be the culprit and causing the pancreas issue. I won't go into all the details but let's just say they have a guideline about withholding seizure meds which involves calling in other services. I know she wasn't threatening she was just stating their guidelines, but still talk about being a bit insulted. So I called Jude's regular neurologist and he laughed at the mere mention and said to tell them he said withhold the Depakene and give the IV Keppra.  She also mentioned they were worried about Jude being medically stable enough for transport. She also mentioned they really believe the throwing up is from his seizures. Negative! I don't agree and neither does his neurologist. Jude doesn't throw up from seizures.

So the head neurosurgeon who did Jude's surgery then came in and sat down. He is very nice and very honest. He explained that the surgical team had done their job of placing the pump and done everything in their capacity to make sure the wound was healing well. He is 100% right. So from his standpoint he has to rely on this hospitals neurology and GI department so his hands are tied. That since Jude is now having seizures from not keeping down his meds we could rely on their neurology team and start from scratch or transport. He thinks transporting him to Dallas Medical City is in Jude's best interest. Jude's dr's know his brain and know his GI there and they are like family. If they got this boy through C-Diff they can get him through this! The doctor also mentioned Jude's lipase level is still high but went down. I said "YAY" and he replied "but now we wonder because with throwing up it should be higher it's like it's off kilter". So now do we wonder if the Pancreas is the only issue? Hopefully so! I really do understand the neurosurgeon's point. He does neurosurgery and not a neuroligist or a GI specialist. It's time to get Jude is specialists hands. The neurosurgeon said he felt comfortable letting him transport so now we wait!

I guess it's rather complicated. They have to get a sign off accepting doctor which will be Jude's neurologist. They then have to get a hospitalist to ready everything at the hospital. The insurance has to sign off (just let them give me shit today) and then the Teddy Bear Transport is notified. They will know what precautions to take and I have no doubt will get Jude there safely. We aren't sure if it will be today or tomorrow but it will happen. Jude still hasn't eaten.........nothing since Thursday. It's amazing how long your body can function with just IV fluids.

Even through all this Jude is still holding out with a smile.

A quick Monday update

Mike gave me a quick update. They did a sonogram on Jude's liver, pancreas, and gallbladder and everything was FINE! Finally a GOOD step in the right direction. Per the doctor he believes Jude is over the hump.......I hope he is right! So the plan is to test Jude's Lipase again tomorrow if it's elevated again then we are now going to assume it's a seizure medication. That could mean we go to Dallas via a transport to find out what his neurologist wants to do.

If it's not then we start feeding him. If he tolerates the feeds we are asking to take him home ASAP! We will have our nurses there who are very familiar with Jude and he will be watched carefully. We are also going to request a night nurse until we get him through this. I have said before that they can release Jude when he is very ill into our care. They wouldn't normally release someone in his condition, but they know the care we can provide. There are a lot of bugs and germs in hospitals that Jude doesn't want! We don't want to complicate this any further. Having him at home is a bit like being in the PICU with someone constantly watching him.

I kinda had a meltdown today. I feel like for the first time in six years I just cannot handle anymore stress. I am seriously going to have to start eliminating items from the list. I don't want to feel like a quitter, but my body is telling me to stop. So I am going to seriously take into consideration what needs to be eliminated and prioritize my life. I know that reads cryptic but I am not exactly sure what steps I am taking yet so I cannot elaborate except to say it's time to de-stress.

Also, this has definitely reminded me that there are certain things in life that are important and there are things that need to be let go. Let go of things that are troubling you because tomorrow may not be there.

Hopes and wishes Jude is on the mend. I am ready to blow that popsicle stand!

~~~~ STRESSED ~~~~

Mike just called. Jude kept his pedialyte down, but his lipase level went up again. In addition there seems to be zero communication regarding his seizure medications. It doesn't seem like the right hand knows the left hand is giving Keppra and that the right hand also gave Depakene. We are frustrated!

Jude is currently having a sonogram of his pancreas and his liver. I also requested a renal sonogram and Mike requested blood levels for his seizure medications.

We are considering switching Jude to Dallas Medical City.

I need help from family and friends. I have tomorrow covered. I need someone to sit with Jude on Wednesday. I think I can get Thursday covered and will need help with Friday.

If he is there long term I am worried one of us is going to lose our job again. I am also worried not being there because his parents catch things that others won't notice.

A Sunday update with SCARY and Good news.

Mike told me today how he was reading everyone's updates on Facebook about their long holiday weekend. He mentioned how relaxed they must feel and how they got a refresher so they can go back to work. He was feeling a little down and jealous. I get it! I have to go back to work tomorrow and I am EXHAUSTED! It's just the way it is!

I tell you what ..... nothing like your kids stats dropping to the point that the charge nurse slaps crash pads on him to make you be grateful for what you have. God has a way of reminding you not to envy. So the back story......last night they did an EEG on Jude because his seizure activity had picked up. They said he was having six seizures an hour and they needed to give him medication. They told Mike they were giving him Keppra and possibly ativan. Little did we know they were also giving him Fosphenytoin. I got to the hospital today about 9:30am and I saw Jude was still sleeping. I mentioned a few times he was "still" sleeping as the day wore on, but Mike said the sleep was good for him. Finally I walked up and pried Jude's eye open and there was no response. So I called the nurse and pointed out his stats were wacky and Jude seemed unresponsive. She agreed and called the dr who showed up within minutes. She explained that the medication the other doctor (neurologist) gave him can put him in a deep sedated sleep. Um not okay with that!  If I had been aware I would not have allowed it ESPECIALLY after reading the side affects. I also didn't think it was a great idea with his respiratory history.  So the day wore on and Jude finally woke up.......his breathing got erratic, his eyes got very big, and he went into a full blown seizure. Jude normally never destats when he has a seizure. I truly believe it was a reaction to the sedation. Jude's stats fell dramatically and kept falling. His pulse ox was down to 70. When this happens things come out of the walls like transformers, alarms go off, and everyone gets REALLY loud! Me? I just cried and said Jude Jude Jude!!!! The thought crosses your mind........is this it? They got him stabilized and I realized I may have been a bit dramatic, but it was still scary as hell! Jude looked AWFUL. I would post a picture, but just trust me.

They left Jude on oxygen after that to regulate him out and we all watched him carefully. Later that day my friend Shelley came in midst a G Button change and a few stat issues. I could see her tears and explained Jude's complications are sometimes hard to see but that he was okay. She knows this all to well and I know it was hard to see. Each hour that passed the sedation medication wore away and Jude began to look more like himself. This was the first time since Tuesday that I actually saw JUDE! I still noticed a few things....his IV looks a little infiltrated again and the pump area looks rather red, but Mike pointed out when we mention things they sometimes snowball into a glacier. So we asked out nurse to simply watch those areas.

The GI still believes Jude has pancreatitis and we are treating it as such. We slowly started introducing Pedialyte tonight. I had to leave and come home so I could work tomorrow......such a hard hard thing to do. Mike texted and said Jude had a bath AND a bowel movement. This is such GREAT news. I also got an amazing smile before I left and I finally felt ........normal. I have to admit I was professional but forceful on this visit. I just felt like things weren't done correctly, but I know Jude is a complicated case. I am praying beyond anything that Jude has turned the corner and has fought this battle with the courage he always does and won. I pray I can go to work tomorrow without the stress of Jude having issues and then take him home on Tuesday. I love that little boy!

Sunday update

Mike stayed last night so I just got to the hospital. Jude has been sleeping a lot but sleep is good to heal the body. He had another blood draw this morning and the enzyme level decreased, but they are still assuming it's pancreatitis we are dealing with. I talked to Jude's GI's office this morning and they were pretty much on the same page. He said that when surgery is done in children like Jude it can start a "domino" effect of issues. He said he also would believe this is pancreatitis started from the surgery and irritated by medications. Either that or it's a bowel issue like I discussed yesterday. Basically the only thing that helps is time and rest. Then you experiment with feeds and narrows it down to the exact issue and combination.  Jude has not thrown up which is great, but he doesn't have anything in him to throw up. So the big test will be when they feed him again. His stats seem to be really good except for the occasional irregular heart rate which they don't seem to be concerned about. 

Emily asked her dad to bring her home a day early so she is here today visiting Jude. She and Mike have been aggravating each other ever since she got here ( of course) but it's really good to hear laughter.

We are still waiting on Cook's GI specialists to come by and we will see if they have any new ideas.

Official unofficial diagnosis

Well GI never came to see Jude. The nurse came in and explained the GI specialist just couldn't come by today. I have to admit I lost it and threw a small hissy fit chalk it up to being over tired and very irritated we don't have an diagnosis. Anyway, the neurosurgeon that did the surgery had his nurse practitioner come by. She happened to walk in when I was still upset. She was very nice and explained what she could to me about Jude's situation. She also agreed that it would be very frustrating as a parent to be told a specialist was coming by and not have them show up. Basically they believe Jude either has pancreatitis or an Ileus (I believe it's an Ileus). That is where the intestine is basically paralyzed and not working. Honestly, the treatment is the same for both situations. No food, IV fluids, and slowly introducing food back in. Jude also now has a low grade 99.8 fever and that has stumped everyone so they are just saying they thing it could be from the surgery itself.

She did say that if Jude continues to throw up tonight they will do an abdominal sonogram or a CT of his abdomen. This will most likely just diagnose the above and then we will run the course of treatment. She said this can be a long lengthy process (sigh). So I will be enlisting family and friends help to sit with Jude during the day if possible. I believe we have Monday and Tuesday covered. He cannot be alone in case he vomits due to aspiration. So we need someone here to turn his head and push the nurse button.

Now the good news. Jude's vomiting has decreased with the new medication. It hasn't gone away completely, but it's lessened. He is also smiling some! His seizures have picked up but that can be from the medication or just not feeling well. Yesterday we didn't get many smiles.

I asked a lot of questions to the nurse practitioner. Two examples are...

1. How long could this take - There is really no answer. It could take a few days or a few weeks.
2. Can he get an infection inside from the surgery - He could but generally if that was the issue the body will try to push the device out and it would be coming through the stitches (ouch). She also said incision infections don't generally start this early after surgery.

So far let's just say I am not a fan of the Baclofen pump. Hopefully my attitude will change once we get him well and out of here.

*** foot note - As I typed this Jude puked everywhere. SIGH!

Saturday afternoon update

So the doctor came in and jokingly said he heard we had a wonderful night. He actually ordered an entire battery of tests and they assured us they are very concerned. They said there is something going on for sure they just have to narrow down what it is. So here is the list.

1. They turned down the Baclofen coming from the pump
2. They gave him a bolus IV feed
3. They took bloodwork to run labs
4. They did a urine test
5. They did another chest X ray
6. They changed the anti nausea medication to Phenagren (sp?)

They then came back and said his white blood cell count is down, but no enough to warrant concern. Most his labs look great but one pancreatic test was a little high. So they paged GI and are going to have them do a consult. If it's pancreatitis then he will stay on IV fluids until he gets better.

Awhile after they turned down the pump I got a few smiles from Jude and I thought WHOA this might be it. It might be a simple fix. However he started vomiting through the Phenagren not long after this pictures.

As you can see he is pretty pale. They are going to watch his weight and supplement Iv's with nutrients if they need to. I am still holding out hope that turning down the Baclofen will be the solution. Simple and easy. We can hope right? If that's not the case I am not sure when we will be going home.

I was grateful to the doctors! I told them I felt like I was sitting in here alone wondering what was wrong and what the solution could be. They assured me they were watching him closely and again that they know there is a significant problem.

Saturday morning update

Jude threw up so much between 7pm and later that the nurse paged the Dr. She also paged respiratory and had them come down to give him treatments. During the treatments we gave him his nightly sedative and that helped him finally settle down and go to sleep. I told the nurse my thought was he would sleep until about 2:30am. On the nose at 2:30 Jude woke up retching and was having a hard time. Luckily the sedative kicked back in and Jude drifted back off. About every two hours he woke up retching and repeating the stat dropping process. I just laid there in bed until I heard him then jumped up to get the suctions. If I didn't hear him then I didn't stir when the nurses came in so everyone would be quiet and leave us alone for awhile.

We have been up for about 45 minutes and Jude has retched an uncountable amount of times. This has worn him out and he is back to sleep. His color doesn't look good to me and I requested that they do a CBC and a liver functions test. The nurse said they normally request those and I pointed out....well they haven't yet. I am tired, cranky and hungry and my mommatude has kicked in full force. Our new nurse today told me some kids do just throw up after surgery but that this is lengthy. She also mentioned she agrees with last nights nurse that there is something going on.  Hopefully the tests will all lead to the fact that this is just an after surgery issue, but Jude is not having an easy time. If I could get you to picture in your head that every moment you are awake you are trying to throw up then you can probably imagine how exhausted you would feel.

I am stressed too. I have to be back to work on Monday. I know it's easy to say your child is more important than work, but that doesn't help the fact it is my job. I have to provide for Jude and have a home for him to live in. I am hoping for a miraculous 24 hour turn around. If Jude does stay longer then I am hoping Mike can take off Monday. Monday is really a requirement for me and I think it would be easier if I was out Tuesday.

Ugh, I hate this!

Jude's back up. I hate to go.

Post op Friday Follow Up. A very bad day!

Well I was right.......no going home for us. Holy hell of a day up here in hospital land. Jude is back on oxygen and back on an IV! The IV team said if this stick doesn't stay then they are submitting Jude for a Pick line. I have lost track of the Iv's he has blown and he has a new one in the side of his foot. He was dehydrated from getting so sick so they had to get some fluids into him. The dehydration was causing (or something was) Jude to have irregular heartbeats. Those have lessened with the fluid intake.

We tried feeding Jude again very very slowly and it didn't work. He vomited and vomited. It's just the most odd thing and everyone seems at a bit of a loss. Jude isn't himself, but he will look around and seem like he is a little with it. Then his pulse ox will drop, his heart rate will sky rocket, resp rates will drop, and he vomits and retches. The doctor ordered an X ray of Jude's lungs and it showed they were clear but he wasn't fully inflating the bottom lobes. This really isn't a large concern. Next they ordered an X ray of his bowels to make sure there is no obstruction and there wasn't. So we are back to the drawing board. They did mention there could be an issue with Jude's instestines just moving a lot slower than they should be. I would guess they would need a sonogram to see this and if there are still issues tomorrow I am sure there will be one done.

I turned off all of Jude's food. He hasn't had anything since about 11am. He is still retching when he is awake but he spends most his time asleep. He doesn't get anything up except bright yellow stomach bile and there isn't much of that left now either. Again, we are shaking our heads wondering what's up. Is this just a reaction to surgery or is there something underlying going on. The doctor mentioned not wanting to mask any issues Jude may be having so I know they are limiting certain medications.

A few hours ago I got a real scare. Mike had gone down to get food and the nurse was in another room. Jude was asleep but suddenly fluttered his eyes and coughed. Then drifted back off to sleep. Suddenly Jude's alarms started sounding. This isn't unusual and they don't really bother me anymore. Jude's stats have dropped since the surgery and everyone's rates go down when they sleep. I simply watch his stats and wait for them to go back within normal range. However, his respiratory rate kept dropping and kept dropping. We got to 10,9,8,7,6 all the way to 2. Nothing like a 2 on the respiratory scale to cause everyone to Jump and the nice nurse came scurrying in. Jude wasn't holding his breath and I was at a loss. We watched and Jude's rate started climbing back up. Then she checked and said they were ready in case something happened (Jude crashed). WHAT? You are READY? Um I am not and why didn't I know that was a concern? I guess it always is and they are generally always ready, but still. Insert big wide eyes! Currently Jude is holding about 93 on pulse ox and 15 on his resp rate. So he is within his normal range.

The good news is we are in a regular room. If Jude was at a true risk of having a serious issue I would think we would be in PICU. I am mostly just sitting here watching Jude sleep. Hoping he gets better. I know Jude can get better very quick! Literally can turn around within hours just like he turned around today for the worse. So I am holding out hope he will pull a Jude and we will be home Sunday.


Ps. Note: Jude's night nurse just came in and she is wonderful. A super sweet lady from Brazil who said she is very concerned about Jude. She said she talked to the charge nurse who told her that they had a patient similar to Jude that had the same issues after the Baclofen pump. I guess that's a little reassuring to hear. I told her that I was concerned about the respiratory issues and she said she was too. She assured me the doctor is just a phone call away and that she is keeping a close eye on him. She also said she heard some congestion in his right lung now and that she will keep a watch on it. However, she assured me his stats all look normal now and that we are hoping for a good night and a better tomorrow. We will keep her!

Post op Friday

I found out yesterday that the original thought process was to let Jude go home today. We can hope, but I don't think that is happening. He did well through the night until about 2:30am. His pulse ox dipped into the 80's and his heart rate sky rocketed to over 170. He also vomited a large amount of yellow fluid. The nurses are great about listening to us when there is an issue. I explained it was one of three things or a combination there of. He either is in pain, or he has an underlying fever we aren't catching, or he is straining to use the restroom. I only mentioned the fever because I noticed his back was burning up. Since he was positioned on his side and not under heavy blankets I wondered if Jude was being.....well Jude. He can mask a fever sometimes. Anyway, I requested they give him some pain medication so they gave him Motrin, but it didn't work. They also paged respiratory and gave Jude a breathing treatment. The therapist noted Jude's left lung now sounds coarse and diminished. That probably means a chest X ray today. Finally they brought out the prescription pain medication and after about a half hour it worked. Jude's stats went back to normal and he went back to sleep. During the night Jude had two bowel movements which is another step towards recovery and getting out of here.

They had taken Jude off his pain management course. Which I understand since they want him to tolerate the pain as much as he can on his own. However, without the pain medication in his body we wound up with the issue above. So this morning at 7:30 right when they noticed his heart rate going up they immediately gave the prescription pain meds. He is resting very comfortably now. I changed his diaper, repositioned him, and changed his sheets under him. He tolerated all of that very well. I have him on a continous feed right now of 45 an hour. He seems to be tolerating that very well. Mike tried to feed him faster yesterday, but they kept having issues with him throwing up. So I am going to start him slow today and try to work up to 85 and see how he does.

Jude did sit in his wheelchair yesterday for about 15 minutes. This was an accomplishment, but he did get sick several times after that. He has to get up and move so I am sure we will attempt it again today. Poor kid I hate to see him in pain. He is a little trooper and is doing all he can to heal as fast as he can.

Post Op Thursday

Mike stayed with Jude last night so I could go home since I had to work today. I am going to catch up on all my stuff here and then head back to the hospital. He said Jude did much better last night with the around the clock pain relief. He did say that Jude woke up whimpering this morning and his respiratory rate dropped to 9. So they went ahead and gave him more pain medication before they had a real issue. They are also coming in today to adjust the rate of the medication in the pump because I have not noticed a difference in his legs yet at all. His legs are still very stiff. So they are going to increase the medication by 20%.

I am anxious to get back to the hospital because they are going to sit Jude up today for the first time. I know this will be painful for him and I would like to be there to hold his hand. Oh Jude did blow a vein last night and his IV had to be moved. The antibiotic they are using is extremely harsh on the body. His little arm got puffy and there were some little red streaks so the nurse was worried about the medication causing tissue damage. So they put in a new IV in the other arm. Jude is a big trooper when it comes to blood draws and IV sticks.

We appreciate the texts and forgive us if we don't get right back to you. If anyone wants to visit he is in room 4306. Thanks for the continued prayers. He is a little fighter for sure.

The surgery and the recovery (one graphic picture...you have been warned).

We got up yesterday about 4:20am to get Jude to his 5:30am surgery call. They led us back to a medium size room where they asked us lots of questions and did a lot of prep work. Jude was bathed again with the antigermicide wash cloths. They then came in to give him some "giggle" juice so he wouldn't know they were rolling him away from us. Jude got upset when they rolled him away for his G button surgery so they just wanted to make sure he was comfortable. Again, we tend to forget Jude was a stroke victim and knows what's going on around him.

Jude was back about three hours before the doctor came out and advised the surgery went well. He said that he was able to get the catheter pretty far up Jude's spine so the medication should have a good affect on his limbs. He also said the incision was clean and he was able to put the device in his stomach pretty easily. I asked if we would get to see him soon and he said yes that they were just cleaning him up and moving him to recovery. Then we waited........and we waited.........and grew concerned. Finally we got a phone call in the waiting room that Jude was having some difficulty waking up and they had him in the acute area. Parents weren't allowed in that area, but we were told once he woke up he would be going to a regular room and not PICU. Then we waited some more......another phone call.......same news. So we waited some more..........then another phone call with the same news and I was growing worried. So I asked why I couldn't see him and they again explained parents just aren't allowed in the room he was in. Finally they called and said they were bringing Jude out to go upstairs and to meet them on the side hall. He was still sound asleep and we followed them up to his room.

The nurses took all his vitals and Jude began to wake up. He began giggling and giggling. Everyone thought this was really cute until I pointed out that he was seizing and that it was probably his response to pain. Regardless it's easier to see a little boy giggle vs groaning in pain. Jude actually did VERY well ........... until that night. Jude woke up in a lot of pain from the surgery and his stats began dropping. He couldn't keep his pulse ox up so they put him on oxygen. They had already given him Morphine so they gave him a round of Motrin to see if it would help, but it didn't. My friend Gina was here with me and I think we were all in tears seeing him in so much pain. I just kept telling him how sorry I was because I felt so responsible for his tears. Finally enough time had passed and they were able to give him Morphine again. He went from this.

To this

What a relief. They kept him on oxygen until about 9pm and then they were able to wean him off until this morning. He woke up in pain again around 2am then around 4am. It was a two hour window that we slept and kept him comfortable. Things went well until about 8 when Jude got very uncomfortable again. Stats fell, his heart rate sky rocketed, respiratory rates plummeted, and the oxygen went back on. However this time when they gave him the pain medication.........his oxygen still stayed low. So he got a breathing treatment and he stayed pretty uncomfortable until he could have more medication at 10am. He is now sleeping very peacefully and his oxygen level is at 99 percent with only 1 liter of oxygen. I am sure they will take it back off again and we will just wait to see if we repeat the process.

Jude's left lung does sound a bit diminished so they are watching that carefully.........well I am requesting they watch it for pneumonia. I really think it's just from him favoring laying on that side and the surgery itself. However, with Jude you cannot be to careful. So there are positive things like Jude is slowly taking his tube feed and there are negative things like the oxygen level. We are just taking it day by day. Changing his diaper is a chore and the poor boy HATES to be rolled over, but it's a must.

So the graphic part. I debated posting this because it's so personal, but I promised a long time ago I would be honest and forthcoming on this blog. I actually only showed it to family and then I remembered there are other parents like us debating giving the Baclofen pump. Well I wasn't prepared for the incision Jude would have. Oh the POOR nurse! She had no idea I had not seen the incision and when they brought Jude back the room she pulled back his gown and said it looked good.... I BURST into tears. I mean the nasty sounding sob and she felt so bad. It's a C shape scar that goes where the pump was put in and he has another on his back where they threaded the pump through his spine. The scar on the back is very small and honestly the pump looks a lot smaller than I thought it would. It's only the incision itself that was so upsetting, but I know it will diminish in time. You can see the pump under the incision.

 

11am - The associate from the doctor just came in and said they are going to put Jude on a regular pain management course of medication. I think that will really help him! This will keep the medication on a constant flow vs letting it wear off and taking the risk of his stats dropping again. She did confirm there is diminished breath sounds in the lower left lung and he was not on his side. So she has ordered CPT and breathing treatments every four hours.

Jude has gotten lots of kisses and lots of consoling. He also had a visit from Gina and Sarah who both helped sit with him while I got some food. We appreciate all the prayers and support!!