Maybe he'll poop!!!

Jack is much happier at home! He's still pale and weak and his formula is moving very slow, but he's HOME!!!

Keeping Busy

Good news! This picture is already outdated. It's from Saturday before Jack came home. That's right! Jack came home Sunday night!!! The final picture is of Jack while still admit at Decatur Memorial Hospital.

This is what Jack did most of the time.

My pictures are out of order and I just don't really care to fix them right now. Katie is taking a nap and Jack is in his bed playing quietly while eating. He's been awake since 4:30am. Jack woke me up, retching and moaning. I quickly turned off the feeding pump. As I was looking Jack over, he turned and looked at me and said, "Hi. Go couch." I'm like, "It's still dark out. You should go back to sleep." Jack says to me, "Sit couch. Watch Spongebob." So, because he's been in the hospital and he's recovering from everything, and he was retching, I gave in and got him dressed. We hung out until a little after 6am when I just couldn't keep my eyes open any longer. I put him back to bed with toys. Jason got up shortly after that and took over. Super dad!

I'm glad that Jack is resting. Maybe he'll poop!!!!! That would be miraculous! He had a poop Monday morning, which I wasn't expecting to happen so fast. That's a wonderful sign. It means that his intestines are awake, once again. Of course, he hasn't had one since, but we're moving along, trying to get the formula in at a larger volume. Jack is acting close to himself, other than laying around more than usual. He's sat in his highchair and tasted salted chips at least six different times!

And...Evelyn just came from Jack's room stating that it stinks in there! YIPPEE!!!! 

Anyone want to hold Jack's hands for me?!

 

things are looking up

Things are looking up for Jackson. I'm so happy to be sharing this news. Once again, we are simply following the agonizingly slow process of waking up Jack's intestinal tract. Nobody officially said that Jack has an ileus but Jason and I are treating it as such. Our local hopsital's medical staff is wonderful. They allow Jason and I to call most of the shots, at least when it comes to when and how to wake Jack's gut up.

Saturday was a hard day. Jack spent the entire day and overnight in and out, most of the time sleeping with his eyes partially open. He would wake about every 20 minutes and moan, retch, and cough. He was so uncomfortable. I felt so useless. Tylenol didn't help at all. I couldn't help him. I would change his diaper. I would vent his belly and, if I was lucky, get a little puff of air. I was constantly watching the draining Farrell bag to see if Jack's intestinal tract was moving.
     
          Instead of hooking Jack up to a suction on the wall and pumping his stomach, we used gravity to
          empty Jack's stomach contents. The bag was placed on a towel on the floor and it was collecting
          the stomach fluids, from Jack's g-tube, which included dried blood and bile. The nurses emptied
          the bag every 4 hours and measured the contents while noting the consistency. We want Jack's
          stomach fluids to look like saliva. His was dark green, then orange, then dark yellow, and finally
          yellow, all with pieces of dried blood.

At one point late last night, I noticed that the contents in the bag were starting to look slightly better. I vented Jack's belly and gave him 10ml/2 tsp of Pedialyte through his g-tube. A couple of hours later I repeated this process. He settled down quickly after each process. Things were looking up!

This morning, I was talking to Jack and he told me he was hungry. I placed Pedialyte in a feed bag and fed Jack 15ml over one hour. He tolerated that feed so I fed him the same for another 3 hours. The Hospitalist came in and we discussed Jack's progress. He asked me if the glycerin suppository helped to produce a poop? "No." He asked if we ever use enemas and do they work? "No." We discussed Jack's constant discomfort and how the Tylenol wasn't helping. He prescribed Toradol through the iv.

Within 10 minutes Jack asked to brush his teeth! We gave him a sponge bath and dressed him in clean pajamas. His bedding was also changed. We got Jack out of bed and sat him in is wheelchair. Jason came and switched places with me. As I was leaving, Jack was talking about riding horses as saying "wee" and "funny." What a change! The Toradol, an NSAID, was just what he needed. It's times like these that I wish Jack could communicate better and tell us that he hurts and where the pain is. Jack is currently receiving 20ml per hour of watered-down formula! His usual dose is 225ml over an hour. He has been resting and only fussing a little. I had to vent some gas from his belly once, and he is currently sleeping with Spongebob on in the background.

I'm back at the hospital again and sent Jason home. My amazing mother has been staying at my house since Wednesday. She's heading back home today. My mother-in-law came and helped out with Evelyn, Katie, and the dogs on Thursday and Friday. They spoiled the girls and helped out with my household chores. They helped Katie celebrate her 1st birthday on Saturday (we had a party a couple of weeks ago). We have such wonderful family support. We couldn't be here fully for Jack without their help.

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.

Count Down

I've started counting down the days until Jack's surgery.  3. Actually, it's now only 2 days. Thursday, July 18. I don't get much time to sit at an actual computer without little hands pounding on the keys! I had started writing this post on my phone. This is MUCH easier!

Here's what's bothering me. I'm not nervous. Should I be? I've lost count how many times Jack has had surgery/procedures/tests under anesthesia. Maybe it's because it seems so routine. 
I feel guilty because I'm not very nervous.  It's more that I'm disappointed that he's going in again.

He's having surgical procedures/tests and possibly some eye surgery. To be specific, Jack is having several specialists visit him in the OR. The dentist will perform x-rays and clean Jack's teeth. We hope there is no decay, as this is common in CFC kids, and most kids with g-tubes. The opthamologist will perform an EUA (eye exam under anesthesia) to look at the damage to Jack's cornea from lack of lubricant (not tears) and might have surgery to help if needed. This possible surgery involves stitching up the outsides of the eyelids. The cardiology team will perform a sedated echocardiogram (we've given up on trying to do them when Jack is awake) and EKG. It's Jack's annual exam to look at his PFO and aortic stenosis. Most CFC kids have heart issues or conditions that occur later in life. I'm very happy that Jack is getting the exam every year. Finally, the GI specialist will perform an endoscopy down Jack's esophagus and a colon biopsy to look at the function of the colon (Hirschsprung Disease).

Back to my not being nervous. My not being nervous actually makes me nervous. Way back, Jack was going in for a ureter stent placement. This was after his UPJ obstruction and Pyeloplasty. I wasn't nervous. The radiologist was going to place the stent through the surgery site but had trouble, which he then stated was his first time ever failing. Jack went back to the operating room later that same day for attempt of ureter stent placement through his urethra by the urologist. The poor boy came out of anesthesia grey in color and O2 low. His little body was limp and he was struggling to breathe. He only had to stay a short while but did have O2 while sleeping. We DO NOT want that to ever happen again.

What's even more nerve-racking is how Jack's gut reacts after surgery. We believe his gut shuts down from the different pain medications (morphine) he's been given, not the actual anesthesia. His intestines stop working and Jack gets an ileus. This results in tons of vomit and major fatigue. We've had to have his stomach pumped a couple of different times while waiting for the bowels to wake back up. He gets stuck admitted to the hospital on iv fluids, once for 8 days, or was it 10? The other for 6. See? I am avoiding getting into the medical binders because I don't actually want to remember all of this!

I am hoping and praying that we won't have to deal with any complications because, at the moment, Jack isn't actually having any actual surgery. Of course, this may change if he ends up having his eyes done.

Here's something to lighten the load. A cute video of the kids messing around. It's all sideways and such, but that just makes me giggle even more!