Day 5 - Tracheostomy

Hello!

I'm giving this a try from my Blackberry, so we'll see how it goes. I got yelled at again today but not from Jim, from my mother. She thought that I painted Jimmy in a bad light yesterday and was worried about what her friends would think. I am trying to give honest information, which is what I promised to do, and I don't think it's unexpected for a person as miserable as poor Jimmy is to have a cranky day once in awhile. In case of any potential misunderstandings, I would like to clarify that Jim is an incredibly adorable and well-liked person and that he has been extremely sweet, loving, and very cooperative overall. Yesterday was just another difficult day for both of us, and he was feeling very scared and anxious -- who else could he take that out on other than me? There now...are you happy, Mom?

When I came in this morning (earlier this time), Jim was pretty worked up again. They had to suction his lungs four times during the night (that is what he remembered, but it was probably more) and did a CT scan at 4:30am. He was afraid he was going in for another surgery! He also said that he died at 4:19am and that he begged God to let him come back to me, if he promised to be a better person. Evidently, God let him return to me -- thank you, God (maybe that is why he was so nice to me today)! He said that it was very real and not a dream. I hope he can tell me more later, after this whole experience, but he may not remember a lot of what's been going on, and that's probably okay. I will definitely be saying a special prayer of thanks to God tonight!!

The pulmonary doctor made the decision to give him a tracheostomy this morning. He wanted to get the secretions out of his lungs before it turned into pneumonia. This is a hole/plug that they put in his neck to better access his airway. Now he'll have another new battle scar! His poor nose and throat are just raw and bloody from all the suctioning. The doctor is really glad they did this as they removed a bunch of 'gunk'. Hopefully, this will allow him to get his strength back so that his neuro stuff can heal better. He looks much better and is already off the ventilator and breathing on his own. They plan to start tube feedings today to get him some nutrients so he can get stronger. The poor baby hasn't eaten since last Wednesday, except for the few bites of pureed chicken on Sunday -- he should definitely be skinnier when we finally come home! The hardest part is that he won't be able to talk until he gets a special plug to insert into the trach. He might get this as soon as tomorrow or the next day - he's hoping for tomorrow. This is especially difficult for someone as chatty as Jim. At least I won't have to listen to any of his really bad singing for awhile! Just before they came in to do the tracheostomy, I told him to tell me that he loved me one more time. The smart mouth said, "I love you one more time." Gotta love him!

I talked to the neuro doctors regarding his CT scan. There's good and bad news. The good news is that there doesn't appear to be evidence of any new strokes, so his motor skills should, hopefully, improve as his pulmonary issues clear up. The bad news is that the scans don't really show any improvement in regard to the pressure being relieved. Therefore, he may not feel any better or show any improvement in the interim period between surgeries. It was worth a try, but his aneurysm was, unfortunately, in a bleeding and thrombosing phase rather than in a more encapsulated phase. Dr. Spetzler and Dr. Fiorella are still throwing around the bypass and clip removal in conjunction with the pipeline stent. We still don't have any clearer picture of the ultimate plan yet, but I'm sure they'll have that all figured out by the time we DO get the 'compassionate use' FDA approval. Dr. Fiorella gave me my daily update on the 'pipeline gentleman'. It sounds like he had a really rocky day, but he's still hanging in there. Please keep both these boys in your daily prayers -- we're SO wanting for this pipeline to be a viable option for Jim, and my heart goes out to this other gentleman and his family. I don't envy them anymore than I do Jim or myself, and I pray for their strength and peace.

I would say overall that today was a baby step in the right direction. I got a lot of mouthed, "I love yous," and even a couple of hugs as he was able to lift his arms much higher than before. He has been practicing moving his arms up and down and kicking his legs out very diligently. He's definitely a fighter! Jimmy still has a very long way to go -- both now and in the future. We're both doing our best to make it through this marathon! The outpouring of love and support has been amazing. I hope you can all have the stamina to stay with us ... We really need you!

Take care, God bless, and enjoy your evening!

Much love,
Krissy