Surgery Update

Just to let everyone know Jack did come home yesterday (Saturday). On Friday he was still pretty loopy and doctors started talking about history of seizures. Jack doesn't have any history of seizures so they said they would keep a close eye on him and continue to monitor him. He came off the vent Friday morning and stayed off the vent all day and all night, which was the requirement in going home. Saturday morning he woke up still a little cranky but smiling and happy! It was a couple of scary days but he made it through like a champ! Now just a loonngg six weeks of recovery with no bottles! Yikes!!

Jack's surgeries

Just an update as to how Jack's surgeries have been going. He had the first of two surgeries 3 weeks ago. The first surgery was to lengthen the rods in his back. Back in January the exact same surgery landed us four days in the hospital, so we planned for another 4 day stay, with 2 days on the vent. Wouldn't you know that Jack came off the vent immediately after surgery and went home the next day! It seems everytime we think we might have Jack figured out, he throws a curve ball! We were of course excited and surprised at the same time.

The second surgery took place this past Tuesday. It was the cleft palate repair. Jack again came off the vent right after surgery, but within a few hours Sam and I could tell he was struggling and requested he be put back on the vent. That was Tuesday and as of today (Thursday) he's still on the vent. I should probably back up a little bit in the story. On Tuesday both Jack and I woke up with a cold. After consulting with anesthesia they agreed to go ahead with the surgery stating that Jack appeared to be in good enough health to proceed. Before and during surgery they suctioned out a significant amount of secretions out of his lungs, indicating he was indeed getting sick. So post surgery, Jack was not only dealing with surgery issues he was also dealing with respitory issues. Yesterday they ran a viral panel on him and collected a sample from his trache to see if they could pinpoint the sickness. His viral panel came back negative (which only means he doesn't have a virus they tested for--he could still have a virus, we just don't know what) and his sample is growing bacteria. Only a small amount of bacteria is growing but as a precautionary they started him on two antibiotics to keep the bacteria from growing and turning into an infection.

Today Jack was in a drug-like state all day. The past few days he was on morphine and tylenol with codeine to help manage his pain. The drugs barely seemed to help as he was continiously cranky, irritable and mad. But yesterday was the last time he had received morphine and 1am this morning was the last time he had received the codeine. So the fact that Jack was so out of today was extremely worrisome to me because he didn't have any drugs in his system. As the day went on and his drowsiness and lack of alertness continued the doctors ordered lab work to check if anything was out of sync. All his blood work came back normal. So we can only assume he's still fighting an illness and is wiped out and loopy from that.

The hope for tomorrow is that he's more awake, alert, and responsive. If that happens we will hopefully trial him off the vent, which means we are one step closer to going home! I'll do my best to keep everyone updated!

Gabrielle's First Hair Cut!

Gabrielle's first haircut went extremely well. I had been saying for some time now that Gabrielle really needed a trim, but I kept putting it off. A few weeks ago we were talking about her hair again and I mentioned to her "Locks of Love", and that maybe she could donate her hair at some point to someone who really needed it. The subject was sort of forgotten until the beginning of this week when she started asking when she could give her hair to someone. I was really hesitant because growing up my dad didn't like short hair and so I had never done anything dramatic to my hair, other than the occasional trim here and there. On Tuesday, Gabrielle asked a million times when she could go to Locks of Love. So, with a deep breath and lots of reservation, I started calling around to different hair salons. With Locks of Love, 10 inches is the minimum amount allowed. I found a few participating salons and decided on Great Clips. Wednesday morning we were getting ready when on a hunch I decided to call my salon, Express, and ask if they participated. It turns out they didn't, but they did participate in a local organization called Children with Hairloss, that only required 6 inches and the hair stayed here in Michigan. Gabrielle was given her options and she chose the local organization. When arriving at Express we originally decided to do 10 inches, in case she changed her mind. But once all the hair was sectioned off I realized that if she did get 10 inches cut off, her hair would be by her ears! So only 7 inches was cut off, Gabrielle got her first haircut, I didn't have an anxiety attack or cry, and Gabrielle walked away knowing she did a wonderful thing for someone else in need. All in all, a good experience!

Jack's Baptism

On July 5, 2009 Jack was finally baptized! We held our breath up to the morning of because last time we had actually planned it all out Jack ended up in the ER with breathing problems. Pastor Ron didn't even put it in the morning bulletin in case Jack ran into trouble again! But finally, after many months of official and unofficial planning, Jack is baptized! He did awesome. Everyone thought he was so good during the service and how well behaved he was. I just laugh because he was so incredibly antsy and didn't want to sit still. And if he could have made sound, he would have been! I said the only reason you all thought he was such a good baby was because he has a trache and he can't make a lot of noise! Cracks me up!