Saturday, July 26, 2014

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'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.

Thursday, July 24, 2014

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.

Wednesday, July 23, 2014

The good and the bad

The bad news'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.


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!

Tuesday, July 22, 2014

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.

Thursday, July 17, 2014

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.