and so it goes

To begin with some lighthearted fun, here are two words Jack says that ALWAYS makes me giggle.

Hammerburger
Strawbabear

I wanted to start with something cute because, as usual, we've got complications.

I'm sure you remember my nervousness about not being very nervous for Jack's surgical procedures. Well, the night before I started to get nervous. The morning of, I was very nervous. For half of the drive to St. Louis, I was partially nervous. By the time we arrive and checked in, and waited, and got a room in Same Day Surgery, and waited, and signed several papers and answered many, many questions, and waited, and waited, and waited, and waited, and gave Jack a wonderful calming drug called Versed, and waited, and took Jack back to the operating room, and got dinner, and waited, and waited...I was doing just fine.

Jack did very well with his surgical procedures yesterday. Timing was pushed back a few times but all four procedures were completed within 2 hours! This is great! He didn't go back to the operating suites until 4:20pm but was in recovering around 6:30pm. This is super, because he saw so many specialists. Here are the preliminary results.

GI was first. While the scope was performed, the doctor took three biopsies (esophagus/stomach/small intestine). She noticed some signs of a disease called Eosinophilic Esophagitis, or EoE in the esophagus. These signs were also at the entrance of the stomach. I was wrong about the other procedure from GI. Jack actually had a rectal biopsy. The rectal biopsy will determine if Jack has that disease I mentioned in previous posts, Hirschsprung Disease. Anywho, we won't have the results of either for a week or two.

Dental was next. Jack's teeth are great! No cavities! Back to clinic in 6 months.

The echo was performed and then he had his eye exam. We won't know how the echo and EKG went until I call Cardiology and the request the reports. Good news from vision as well! Jack did not need to have his lower eyelids stitched. The damage is minimal, meaning the Refresh PM ointment I am putting in Jack's eyes is working! We do need to call for an appointment in a month. The doctor didn't like that Jack is so sensitive to light. I'm thinking in my head, "He always has been and I've told you every time." I'm not going to even begin to analyze the reasons why Jack needs to go back to clinic in one month. Vision is essential.

Before I get to Jack's recovery, here are pictures from our eventful day!

Tubie Bear was a good little patient. He had a bracelet just like Jack, and had all of the same preliminary exams.

Jack wanted nothing to do with the bed. He insisted on staying in his wheelchair. This is while we waited...

We discovered this sign on the outside of Jack's room after we took him to the operating suites. We want to make one for home.

This is post-op after we left recovery. Jack was out-of-it still and we did everything we could to make him comfortable.

Now on to recovery...

Jack did well except for vomiting up some nasty dried blood and icky pieces of tissue. Everyone thought this was partially normal since Jack was intubated and had the scope performed. Well, once we made it back to our room, Jack was still out-of-it and insisted on sitting in his wheelchair. We played music for him and sang him songs, using whatever words Jack wanted.

        Example: "If You're Happy and You Know It"

                    If you're happy and you know it, heart test

                    If you're happy and you know it, ear test

        Example: "Twinkle Twinkle"

                    Sing the melody but use any word that Jack says.

While awaiting discharge, because we thought that everything was going to be fine, Jack vomited again. We should have taken this as as sign. However, many people vomit after anesthesia. We were on the road around 8pm. Jason sat next to Jack. We had a drain set up, helping with the gas in Jack's belly. Jack ended up vomiting at least 10 times. The fits got closer and closer together as time went by. We got Jack home and in the bath. He was happy and enjoying the water. He was also exhausted and having trouble keeping his eyes open. We got Jack to bed and had towels ready for any vomit episodes. By 1:30am, Jack was retching and vomiting every few minutes. It was time.

We took Jack to our local ER. Sadly, we waited and waited again. We got right back but had to wait once in a room. Once the doctor came in, Jack had a chest x-ray and abdominal x-ray performed. He was then given an iv and blood was drawn. After that, a bolus of fluids was given, and that amazing anti-nausea medication, Zofran, was given through the iv. The doctor came in and wanted Jack admitted. 

That's where we are. Jack either has Cyclic Vomiting Syndrome or another ileus. I've contacted GI in St. Louis and they are aware of Jack's situation. I've looked back at Jack's history and there is an odd consistency with Jack's admits for these vomiting episodes. This is why I'm unsure of the CVS or ileus. I plan on spending some time looking at dates while at the hospital today. 

Jack spent all of Friday in bed. He was weak and couldn't keep his eyes open. We have been constantly draining the fluid from Jack's stomach while he is on iv fluids. We're watching the color and awaiting for the color to look light and healthy, showing signs that digestion has started. We attempted some pain medications for his fever via g-tube a couple of different times. He vomited the medicine both times. I don't think his gut is awake. Jason spent the night with Jack and I came home to help with the girls and dogs. I'll be going back to the hospital today and trading with Jason. Labs were drawn this morning, Saturday, and there is talk of trying some Pedialyte later today. I disagree with this plan, as long as the stomach fluids are still showing signs of bile and dried blood.

I don't want Jack in the hospital any longer than needed, but I also don't want to cause him anymore discomfort.

Please send prayers and good thoughts to Jack's recovery and our sanity.