Sunday, December 7, 2008

Judes update

First off let me admit that I am extremely exhausted right now, and my thoughts are not all together there neither is my typing. It has been a very long day filled with a lot of information, and a lot of tests. This is the day Mike and I hoped would never happen, but are finding ways to deal since it has. When we arrived at cooks they have a triage nurse stationed in the lobby to greet you when you come in. You can tell that they evaluate you on the spot to see if your case warrants immediate attention, or if you can wait hours with the others. The waiting room itself is filled to the brim so I am sure that's why they have this procedure in place. Jude was having a small seizure when we came in, and therefore we were immediately taken back. I was so impressed with the level of courtesy, and intensity applied to our case. The nurses and doctors were all so kind, and so attentive. We explained what had been happening to Jude, and the entire case history, and showed the medical staff the video. They commended us for video taping the episodes by saying it's the absolute best thing that could have helped them. So if you are searching for help because you are dealing with a situation like this and have found my blog, PLEASE VIDEO TAPE anything you find suspicious. Anyway, they paged the neurologist who looked at our prior films on file here. He then advised the ER doctor to get a CT asap. Right before we did the CT Jude started seizing. The good news is that his stats stay pretty level for the most part. His oxygen does drop a little but not to bad so they did go ahead and give him a tiny mask. Um Jude HATED the mask and got very angry so they found him a pacifier mask so while he sucks on the paci it administers Oxygen! (genius) They then performed the CT, and he fell asleep while being cradled in the snuggly bed they made him. We were informed they would be checking Jude into the hospital for a 24 hour video taped EEG. When the neuro came to vist us he explained that this could be 1 of two things. It was either acid reflux causing a reaction that looked like seizure or Infantile spasms which are basically baby seizures and can be devastating. He said the CT showed the enlarged brain vents which we knew about, and a bit of brain atrophy. We knew there could be some brain atrophy or "thinning" . The neurologist said the CT won't show as much as the MRI, but the atrophy didn't look to significant. In other words it would be possible for him to have a normal life. The doctor did not beat around the bush and said he was hoping for the reflux because the spasms are not good. They require a lot of drugs, and if not stopped could even be lethal. Unfortunately, later that night Jude had a large episode which registered very clearly as a seizure. So we have to have 24 hours on the EEG to officially diagnose them. Tomorrow he will get a sedated MRI where I know they will tell us more bad news. The Dr did give me hope though and said it kind of like a beat up TV that you find. You could plug it in and it still may work and be the best TV you ever had. Then you could have a perfect wonderful HDTV that has no issue that suddenly doesn't work at all. In other words you just never can tell what the brain will do. He said the good thing is Jude sucks, sleeps, rolls, coos, and smiles which are all positives. The charge nurse then explained that the medication they will most likely put him on will have to be injected every night. She said once they administer it he will be here about a week for observation. I asked her many questions, several of which she could not answer but she was sweet and tried. I asked her what people do when they have a situation like this and have to work. She then said well on top of work that she had to sadly admit the medication costs thousands of dollars for just a few doses. I told her I have good insurance, but she shook her head and looked down. I sighed and teared up. I told her I have some money, but not much because all this has pretty much financially devastated us. She said not to worry that there is assistance. She explained that there is also assistance with helping Mike to keep the baby at home, even a nurse that can come stay, and physical therapy. The physical therapy is so encouraging because if we start that early Jude has a real shot (I think!). The nurse said we will probably be overwhelmed with info tomorrow because it will be a full day of education regarding his needs, and diagnoses. I forgot to mention that earlier when Jude seized it lasted awhile so they administered Klonnopin to him so the seizure would not cause additional brain damage. He is very calm now, and even though he experienced another one it didn't last long at all.
So after poking and prodding Jude he is laying in his tiny little hospital bed tonight with bars like a cage. I am watching my pretty little son with a head full of glued electrodes all wrapped in gauze like he had a serious head injury. There is a purple belt wrapped around his tummy monitoring his respiration. He also has his right arm wrapped up because they inserted an IV just in case they needed to administer emergency meds. He has band aids on his left arm from the blood they have taken, ID bracelets on both his ankles, and more wires than I have ever seen hooked up to things I cannot even name. My tears have for the most part been controlled as I feel like my whole body has shut down completely. I cannot really feel, taste, or sleep right now because I finally feel completely broken. I am no longer that strong, but maybe it's just acceptance of what is to come. I held him close for hours before I laid him in that bed, and gently whisper to him how much I love him. I told him that I will hold him until I am an old grey woman and I or his daddy will always watch after him. I asked him to forgive me if I made the wrong decision in having him because he has truly has brought me joy. I apologized to him in a soft tone that mommy has to go to work later this week, but I explained we need the money to live. I also assured him that his daddy will always be here when I am not. I then adjusted his tiny little strap holding his gauze on, and then I saw a little smile come across his face and with that remembered how beautiful he truly is. I have two beautiful children.
Thanks for the prayers and good night. They say where two are gathered and ask for the same thing God listens. I hope that's true.


Anonymous said...


We are praying for you in MO. Hold on to the positives... always look UP.

luane said...

Stay strong. He has alot of great doctors and nurses watching over him right now. Try to get a few hours sleep. Keep giving him alot of hugs. keep us updated.. and if you need anything.. let us know... that is what friends are for.

Fluffy said...

I'm praying for your family

Anonymous said...

I'm praying for your little one right now. Lord Jesus, please place your hand on this tiny one. Please ease his seizures and give the doctors wisdom. And please God, heal little Jude. Protect him and pour out your love throughout his body. Hold him when his mama and daddy aren't there to do it.
And God, please give strength to mama. I pray that you would cover the entire family with peace and comfort. Wrap them up in your arms. And help them to really feel you there with them and know you will never leave or forsake them.

Lots of love,
Momo, a mama from JM.

PurpleQuilterQueen said...

Please don't ever regret having that sweet little baby. My heart is breaking for you right now as I read your latest entry crying my eyes out. I will continue to pray for your family and that God will do what is right and best for that little guy. Best of luck. Jennifer

NandAMommy said...

You and your family are in our prayers. If you need anything at all- please let us know.

Diane said...

I don't know how you do it--posting to this blog but I am grateful that you do. I know your words much reach out to so many who are going through similar hardships with their babies. I will continue to pray for you and I have asked many friends and some of their relatives to pray for Jude, you, Michael and Emily. When the time is right for you, let me know how I may help you. Love, Diane

Jennifer Stracener said...

Jen, I know this has been a hard road, and will continue to be one, but I am praying for Jude. I will share your story with my family, and we will lift you up. Remember, greater is He that is in you than he that is in the world. Trust Him.

Beverly said...

Jenn -

I just read your updates. I am so sorry that you, Mike, Emily and Jude are having to go through this. Your blogs brought me to tears. I prayed for Jude's healing today and will continue to do so. I will also pray for strength and comfort for you, Mike & Emily. I wish there was something I could do. I am here if you need anyone to talk to or just need a shoulder to cry on or a hug.

You are absolute right, too. When two or three are gathered in agreement in Jesus's name, He does hear and answer prayers. I believe God will perform the miracle so you badly want and Jude will be healed.