Zachary: The Update

Hi everyone!
We are home from the hospital.

Zach is back to acting just like Zach – his imagination is running wild and he is running, climbing, jumping around like you can’t believe. If I didn’t see his “tubie” (this is what Zoë calls it) button I’d think he was a perfectly normal kid-o.

Surgery went longer then we thought – we were told it would be 45 minutes but ended up being over an hour and half. The surgeon came out and talked with us in the waiting room and said Zach did great, he was able to do the procedure laprascopically so that was a huge plus. He said we’d be called back in a little while to get Zach into his room. A little while tuned into a ½ hour which turned into an hour – when we were called to the nurses station and told that the OR recover nurse needed to update us on our son’s status – I was handed the phone. When I started talking I heard “we need you to come back into recovery. Zachary is having a very hard time coming out and his oxygen levels keep dropping” My heart sank as I repeated to Doug this information. Thank goodness Doug was there because I don’t know what I would have done. I’m not good at calming a scared kid but Doug on the other hand is wonderful. The nurse was able to get him stable as Doug held him trying to calm him. After he was stable we were sent to our room.

When we got to his room his oxygen dropped really fast and things were a blur we at one point had 3 nurses and a respiratory therapist in the room – the oxygen tank was empty and I remember hearing the one nurse saying “I thought you were going to get him stable before you came here” with the reply of “he was stable” and all the commotion of the respiratory therapist yelling about the tank – Thankfully she had a portable one on her. Zach’s levels dropped to 54 – they should be 98-100 with a child’s going no lower then 90. After that they put him on constant oxygen. His levels did dip here and there, but became more stable threw the night and they were able to take him off the oxygen at about 4:30 in the morning. Of course Thursday night mommy and Zach had no sleep as he was up every 15-30 minutes crying in pain.

Zach needed morphine every 3 hours for the first day. His last dose of morphine was the middle of the night on Friday. We have been able to control his pain since then with Loratab, although, he hasn’t needed any since Saturday afternoon.

The surgeon put in these red rubber bumpers next to Zach’s button to stabilize it and let his stoma heal better. He came in on Saturday to remove them and warned us Zach was not going to like it, that it would hurt and he’d need our help keeping Zach calm. This time Zach’s SPD kicked in and he just smiled at the Dr as they were being taken out. The Dr was in utter shock and told Zach how amazing of a kid he is!

Zach started his feeds threw his g-tube on Friday night. We were all so happy because he tolerated them well – no pain, no vomiting! He was also able to sleep most of the night, only woke a couple of times one of those time Zach was ready for more morphine after he received it he was back to sleep.

We did 2 more feeds at the hospital by Doug and me administering them while the nurse was looking over us. It was much easier then I thought, scary but not too bad. He tolerated both of those feeds as well.

The Dr gave us the okay to discharge as long as all our supplies were there and we felt comfortable. The nurse suggested we stay one more night but told us it was up to how we felt. So we decided to jump in with 2 feet. We figured since they took the IV out of Zach’s foot on Saturday and he was able to move around (and that he did – he was so tired of his room and loved being in the play room or walking around the 6th floor) that if Zach was feeling comfortable so were mommy and daddy.

We got home last night at about 7 – just in time to unpack, try and get some what organized with all of the new supplies added to our house and start our very first home night feeding. It went really well! We were nervous at first figuring out our pump and mixing the right amount of formula for in the bag. It all somehow worked out, we got everything together hooked Zach up and laid him down for bed. He cried at first for a little while but we walked away and within 2 minutes he was fast asleep. I checked on him twice all was a go, so I laid down for bed. Doug on the other hand stayed up for a little while and wanted to get up as soon as the feed was done. He set the alarm but it never went off. We all slept in without any problems. Zach slept the whole night and he didn’t feed his bed it all went right where it should, into his belly.

Of course we still have a lot to get used to – Zach is going to be doing 2 feed during the day for an hour each and his overnight feed as well. They told us this may change and he may require more feeds or longer feeds. – We will cross that bridge when it comes.

As for Zoë, she is doing really well threw all of this. She went to school both Thursday and Friday with little problem. Thursday she was able to go over to her friend Sarah’s house and play until daddy was able to get her. She woke up on Friday crying at 5:30am wanting Zach and mommy but Doug was able to get her on the bus with the promise mommy will be there to get her off the bus. I picked her up with a surprise of camping out in the hospital Friday night – we did and it was fun for her! She slept the whole night and woke up asking when she could go play with Emily. Zoë was very patient as we needed to learn some things before I could leave to take her. I’m so thankful to my friends for helping out with Zoë – it was good for her and a huge help to Doug and I!

Mommy and Daddy are surviving this is a big adjustment but I think it won’t be as long as I thought to get used to it all. This morning Doug took Zach to Publix, right now he is on his 10am feed, and when that is done we are going to head out to Target. I’m thinking, the more we can get out and do the better since no one has been able to tell us how long Zach will have his tube, I don’t want to be stuck in our home forever.

Thank you all so much for the positive thoughts, payers, help, and calls – this all means so very much to us! We promise to keep you all posted as time goes by.

Love,
Sophie