Wednesday, July 9, 2014

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 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!

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