The surgery and the recovery (one graphic picture...you have been warned).

We got up yesterday about 4:20am to get Jude to his 5:30am surgery call. They led us back to a medium size room where they asked us lots of questions and did a lot of prep work. Jude was bathed again with the antigermicide wash cloths. They then came in to give him some "giggle" juice so he wouldn't know they were rolling him away from us. Jude got upset when they rolled him away for his G button surgery so they just wanted to make sure he was comfortable. Again, we tend to forget Jude was a stroke victim and knows what's going on around him.

Jude was back about three hours before the doctor came out and advised the surgery went well. He said that he was able to get the catheter pretty far up Jude's spine so the medication should have a good affect on his limbs. He also said the incision was clean and he was able to put the device in his stomach pretty easily. I asked if we would get to see him soon and he said yes that they were just cleaning him up and moving him to recovery. Then we waited........and we waited.........and grew concerned. Finally we got a phone call in the waiting room that Jude was having some difficulty waking up and they had him in the acute area. Parents weren't allowed in that area, but we were told once he woke up he would be going to a regular room and not PICU. Then we waited some more......another phone call.......same news. So we waited some more..........then another phone call with the same news and I was growing worried. So I asked why I couldn't see him and they again explained parents just aren't allowed in the room he was in. Finally they called and said they were bringing Jude out to go upstairs and to meet them on the side hall. He was still sound asleep and we followed them up to his room.

The nurses took all his vitals and Jude began to wake up. He began giggling and giggling. Everyone thought this was really cute until I pointed out that he was seizing and that it was probably his response to pain. Regardless it's easier to see a little boy giggle vs groaning in pain. Jude actually did VERY well ........... until that night. Jude woke up in a lot of pain from the surgery and his stats began dropping. He couldn't keep his pulse ox up so they put him on oxygen. They had already given him Morphine so they gave him a round of Motrin to see if it would help, but it didn't. My friend Gina was here with me and I think we were all in tears seeing him in so much pain. I just kept telling him how sorry I was because I felt so responsible for his tears. Finally enough time had passed and they were able to give him Morphine again. He went from this.

To this

What a relief. They kept him on oxygen until about 9pm and then they were able to wean him off until this morning. He woke up in pain again around 2am then around 4am. It was a two hour window that we slept and kept him comfortable. Things went well until about 8 when Jude got very uncomfortable again. Stats fell, his heart rate sky rocketed, respiratory rates plummeted, and the oxygen went back on. However this time when they gave him the pain medication.........his oxygen still stayed low. So he got a breathing treatment and he stayed pretty uncomfortable until he could have more medication at 10am. He is now sleeping very peacefully and his oxygen level is at 99 percent with only 1 liter of oxygen. I am sure they will take it back off again and we will just wait to see if we repeat the process.

Jude's left lung does sound a bit diminished so they are watching that carefully.........well I am requesting they watch it for pneumonia. I really think it's just from him favoring laying on that side and the surgery itself. However, with Jude you cannot be to careful. So there are positive things like Jude is slowly taking his tube feed and there are negative things like the oxygen level. We are just taking it day by day. Changing his diaper is a chore and the poor boy HATES to be rolled over, but it's a must.

So the graphic part. I debated posting this because it's so personal, but I promised a long time ago I would be honest and forthcoming on this blog. I actually only showed it to family and then I remembered there are other parents like us debating giving the Baclofen pump. Well I wasn't prepared for the incision Jude would have. Oh the POOR nurse! She had no idea I had not seen the incision and when they brought Jude back the room she pulled back his gown and said it looked good.... I BURST into tears. I mean the nasty sounding sob and she felt so bad. It's a C shape scar that goes where the pump was put in and he has another on his back where they threaded the pump through his spine. The scar on the back is very small and honestly the pump looks a lot smaller than I thought it would. It's only the incision itself that was so upsetting, but I know it will diminish in time. You can see the pump under the incision.

 

11am - The associate from the doctor just came in and said they are going to put Jude on a regular pain management course of medication. I think that will really help him! This will keep the medication on a constant flow vs letting it wear off and taking the risk of his stats dropping again. She did confirm there is diminished breath sounds in the lower left lung and he was not on his side. So she has ordered CPT and breathing treatments every four hours.

Jude has gotten lots of kisses and lots of consoling. He also had a visit from Gina and Sarah who both helped sit with him while I got some food. We appreciate all the prayers and support!!