An unexpected and wonderful surprise AND an anniversary!

I work with the most amazing people. Yesterday I thought I was having an offsite meeting with our branch chief and 2 technicians. We decided to go out for lunch for our weekly meeting. When I arrived our chief said, "I lied, this is for you" and I looked and saw our entire Viral Therapeutics Branch sitting at a long table. My first reaction was total confusion - "For me? What is this for?" and I was told that it was a party to celebrate Jack's first year of life. After we all had lunch they had a huge cake that said "Congratulations" and a Happy 1st Birthday card and Target gift card for Jack and a Congratulations card for James and I. They said that James, Jack and I were an inspiration to them and they wanted to celebrate all we accomplished this past year. It was really emotional for me. All along our journey these guys were such a support for us. My branch chief, Lisa, went to OB appts with me when James couldn't make it and she and my friend/co-worker Anna came to the hospital last Aug 23rd when it was Jack's worst day on ECMO. They told me later how hard it was to see Jack like that and they took turns sitting with me. Lisa said they took shifts because they would both leave the room and start to cry. During the course of our journey they were always calling, emailing, walking and caring for our dogs and taking care of the house when we lived at The Children's House. When Jack first came home and he had trouble because of the dogs/carpets some of the guys from lab came over, ripped out the carpets and installed tile/laminate flooring for us and didn't charge us a thing. It's amazing how kind and selfless people are. We are still humbled by everyone's outpouring of support for us and the party yesterday was just another example of how thoughtful and caring my lab family is.

Today is also a VERY special anniversary. It is the 1 year anniversary of when Jack had his repair surgery and he came off ECMO. It is also the day we nearly lost him overnight when his blood gas levels were "unsurvivable". Below is an excerpt from his CarePage from 1 year ago. As you read it, keep in mind that today he was cruising around, dancing to music and laughing and playing. He is my miracle!

Jack being wheeled to the OR from the PICU


Jack after surgery (ECMO free)

AUG 30, 2007 CarePage Entry:
Our little fighter....
This morning we arrived to the hospital early to visit Jack and within minutes felt like all our prayers were heard and we had signs that someone was watching over us. First we found out that one of the surgical nurses was someone that James knows (a friend of a friend) and then James ran into the priest in the hall and he came down and performed the Annointing of the Sick for Jack and the whole team of 10-15 people gathered around to pray before they started moving Jack. Jack was moved into the OR at 8:30AM for his repair surgery. The journey involved about 10 people and had the coordination and planning of a space shuttle launch. We met with the surgeon just before they started and I have to admit he scared us a little because he was still very grim. He told us that Jack's chances were very slim, even during the OR period. He certainly didn't sugar coat anything but we told him that we didn't care about numbers, just do the best he can and let Jack do the rest. There was still the major issue of whether Jack would come off ECMO after the repair. Around 11:35AM the surgeon came out and told us that the repair was complete. Jack was missing 90% of his diaphragm and did not have enough tissue so they had to use a gortex patch and sew it to his ribs to close the hole. He had his stomach, spleen, part of his liver and small and large instestines in his chest. He also looked into the chest at the left lung "bud" and they tried to inflate it but it did not. They believe that this lung is not viable (at least for now...there is always the hope that it could grow later). They said that there was a bit of 'oozing' of blood into the chest during surgery so they inserted a chest tube. This was something we hoped to avoid but really had no choice. Some good news was that they were able to fit all the organs into the abdomen and still close the incision without the need for a silo which would've been like an open incision and bowel would've been outside his body until they could slowly squeeze it in. No silo = good news!
At that point the surgeon was headed back in and they were starting clamp tests and taking blood gas tests every 15-30 minutes to see if Jack could come off ECMO. At 2:10PM we got a call that everything was done. We waited by the OR doors and saw them wheeling out the ECMO cart...without Jack!! He did well enough that they removed him from ECMO but left the cannulas in his neck as an 'insurance policy'. He still has them in now but hopefully they will do another surgery in a few hours to remove them. The risk of clots is great and the longer they are in, the greater the risk. When they remove the cannulas they shut down the PICU and do that surgery on Jack's bed.
As of now (5:05PM) Jack is back in the PICU and holding his own. Honestly, he looks no worse for the wear except for some more incisions that will be scars to impress the ladies with down the road. They showed us his chest x-rays and you can see a beautiful new diaphragm and a right lung. He seems to be getting enough oxygen but still having trouble with the ventilation and getting rid of carbon dioxide. They started him on nitric oxide which will hopefully help. He is still on the ventilator and the next 48-72 hrs will be critical. James is staying with him overnight and I'll take the day shift tomorrow. We're certainly not out of the woods yet but the first big hurdle is behind us and Jack did great. The surgeon seemed really proud and said he is now "cautiously optimistic". Heck, I'll take optimistic any way you want to serve it. Please pray extra hard in these next 2-3 days. Things can change fast. Pray that he stays stable and they can take those cannulas out soon.
Thanks for all the support and prayers. With the severity of Jack's defect and the odds they gave him I'm sure it's the power of prayer that has gotten him this far.
All our love,
Vic, James and the bionic boy (Jack)

THE FOLLOWING DAY WE POSTED THIS UPDATE:
The 24 hour roller coaster....
Boy, so much has happened in 24 hrs!! Last night they put Jack on nitric oxide and I left around 6pm with James on the "night shift" and calling every hour with updates. About 15 minutes later he called because things started to take a bad turn. Jack's heart rate went sky high (over 200 beats per minute). I ran over to the hospital and the little guy looked gray and everyone was working on him. After a while he settled down and I went back to Children's House. I came to find out this morning that the whole night was like that for James. Then around midnight the surgeons showed up and removed the ECMO cannulas from his neck. Jack will officially never go back on ECMO. They ligated the jugular & carotid so they won't 'work' anymore. Finally around 1AM Jack started to take a turn for the better when they put him on an oscillating ventilator. It shakes him like crazy but they said the babies like it. Since then he's been quite stable and they began weaning the oxygen and ventilator settings. The PICU doc was all smiles this afternoon and said we can relax a little for now and she's pleased. The docs and James feared the worse last night and I hope we never go through that again. This afternoon they tried to put in a central line but it didn't work so the surgeons may put in a permanent port. In the whole scheme of things...I don't think it's a big deal.
To end on a happy/funny note....once Jack stabilized at 4AM the nurses really gave him a good cleaning and changed his sheets. This took over an hour. They had just finished and were changing his diaper when James heard them pleading with Jack. He pooped all over...haha. Then today my dad and I visited and he was on paralytic drugs and he still managed to move and open his eyes. This boy is going to be hell on wheels!!