Tonight I’m tired. Not that “wow, this sudden burst of so much excitement” kind of energy that we had during the first days of being here. Today is that “it seems like I’ve been marching this march a long time” kind of tired. Given that today is only Tuesday, I’m not sure that’s a good thing.
Last night was a better night. Patrick only woke once at 1 a.m. and I only had to sleep in his bed a couple of hours before returning to my own. We were all up right at 6 a.m. though and hurrying to get ready and out the door on time.
Again, we started our day in the lab as soon as they opened. Today, Patrick saw a drawer full of lab tubes and announced “Nurse ‘got (forgot) tubes.” She looked to me for explanation and I told her that his home nurse brings him a lab tube every time she draws blood. So, she gave him one. Then, while I worked to get a very finicky line to draw, she just kept giving him tubes. He walked out with 4 in the end.
Next, we went for an appointment with the Intestinal Rehabilitation clinic. This approach is the alternative to transplant.. trying to reteach remaining intestine in order to wean away from TPN and not have the complications that lead to a need for transplant. We expected a pretty full room. This time, though, we got the nurse coordinator for the clinic. That wasn’t bad. She’s been at this a long time and definitely knows her stuff.
We kind of went over Patrick’s current treatment plan. Hours of TPN, infection history and what we do to try to keep them away. What he’s eating. How his intestine has adapted and changed over time. What we are doing for his liver. And so forth.
In the end, she said that she didn’t really see anything that we were missing. Dr. Jackson is already doing all the things that they would recommend. In fact, everyone is amazed at how strong and healthy and robust of a little boy he is.
She explained that they don’t really considering just wanting to be off of TPN an indication for transplant. However, in Patrick’s case where access for IV’s is a big concern, that might be what tips the scales.
However, because he IS currently so healthy and so active, because he has had a good team caring for him all this time.. if access really is a concern, now would be a good time for a transplant. He’s big enough that finding a match should supposedly be easier and so should the surgery. And, because he’s such an active kid, they usually see kids like him up and going again soon after the surgery.
It is very refreshing to me to hear them frequently reminding us that they aren’t going to rush into transplant sooner than medically necessary as my heart just hasn’t felt right about pushing that too early, either.
We did talk about some of the ways that short bowel syndrome is taking it’s toll on Patrick’s body. We looked at elevated platelets, a sign of an injured spleen and sick liver, despite other markers that say his liver is hurt but ok. (Did I mention that they said sometime yesterday or today that they often remove enlarged spleens at the time of transplant to make room for the transplanted organs? I guess there is just a medication you take to make up for it’s absence.)
We talked about how x-rays show that Patrick has a normal bone age, but is starting to show signs of calcium deficiency robbing calcium from his bones making them a bit thinner than normal.
We talked about bacterial overgrowth, the imbalance of gut flora that sometimes can make Patrick quite sick.
We talked about infections and lines a bit. And she played with a rowdy, sleepy Patrick a lot.
And then sent us on our way.
We headed upstairs to take advantage of the opportunity to grab some breakfast. And, just as we were finishing, Brian noticed a voicemail left on our home phone number. It was the clinic asking us to come back to meet with a GI.
So, we hurried back downstairs, just 10 minutes after they called for us. Started off by explaining that they still have my phone and cell phone numbers swapped.. and then hurried to meet Dr. Quiros, the GI.
He did a quick exam of Patrick, who strangely was afraid of him. Then, he explained that he’d be the one doing Patrick’s scopes and liver biopsies tomorrow. We talked about what to expect there for a while and I warned him about some of the quirks in Patrick’s anatomy.
Yesterday’s imaging showed a lot of change in Patrick’s anatomy. His intestines seem to be adapting in good ways, but also developing again some of the dilation that has been problematic for him. So we discussed some of the strategies that could be used to help with that problem.
Again, we were reminded that when they list patients for transplant here, they usually find a donor within about a year. My mind is having a hard time wrapping around that. But they also pointed out that they weren’t certain it was time yet for that fast of action, and that the rest of the tests would tell. It seemed like kind of a quick visit.. But it was good to talk about our hopes and questions for tomorrow’s tests.
At 10 a.m., we walked over to another section of the hospital to check in for Patrick’s venogram. This is a special test that they did to find out just how difficult Partrick’s central access problem is. (That is IV’s that go to the heart.)
We checked in, then took Patrick to wander a bit while waiting to be called back. They came to take us upstairs 15 or 20 minutes later. We settled into the pre-anesthesia unit where we went over his drug list and allergies and other key points in his history with a nurse. We got him changed into a hospital gown.. And then we got a call to tell us that the anesthesia team was running a bit behind and we might need to wait an hour.
While we waited, a few people came to talk to us about what was going to happen. A physician’s assistant came to fill in some gaps in his medical history and explain the planned test to us.
Next, anesthesia came down and we talked about our usual concerns. We also emphasized that Patrick doesn’t like to wake up without us and they promised to bring us back quickly.
While we were having that conversation, a man stopped.. put his hand on Brian’s shoulder and shook his hand like he knew him. Then he said, “You don’t know me.” (Whew!) He went on that point out that he recognized us from church on Sunday. We hadn’t met, but he wanted us to know that he’d seen us and that he worked at the hospital, also in anesthesia, and that he would be watching out for us in the future. Kind of a relief after dissappointingly not being able to meet anyone in church on Sunday. (We kind of thought that with the ward merger, we’d slipped in and out fairly quietly.)
Anyway… About noon, they finally came to take Patrick back to interventional radiology. The plan was to put contrast into Patrick’s veins and track their path back to his heart to see what veins were still open and available.
At 1:30, the nurse called us to explain that they were having difficulty getting an IV into Patrick’s left hand to put the contrast into.
At 2:30, we started to get really nervous. Brian went to grab lunch so we’d be ready for whatever was coming, and I started to get worried.
But, thankfully, just as we finished eating and were getting ready to go ask for help, they finished. The radiologist came to talk to us and explain the results.
She told us that really Patrick’s right side is quite open, all except for about a 2 inch segment by his shoulder that is completely scarred over, making it impossible to get to his heart on that side.
On the left, they never did succeed at getting a good iv in. His poor little arm is all scarred. They said that, from what they could tell, the best and maybe only access was the vein where his current line is. She said her recommendation was to just never take a line out of this vein, if possible. If it needed to be changed, change it over a wire to make sure that vein stayed open.
Yipes! In other words, we have been babying this line like it’s Patrick’s last. And it’s possible that really, this line location may be the last available. There is a slim chance that the jugular veins are still accessible. I don’t understand if this test answered that definitely and can’t wait to review this test with a surgeon later in the week.
Not long after, they proved that they listened to our requests by calling us back for Patrick long before he woke up. We had a nice visit with the post-anesthesia nurse while we waited for him to wake up.
Finally, Patrick sat up quite unsteadily and declared himself awake and asking to go to walk. He was quite tired and nauseous for the next several hours.
One of the SBS families that I know from our group came up to visit us in our room this afternoon. Patrick slowly woke up while they were here and, when he felt well, was very excited to have a little boy to play with. It was a great way to wrap up the afternoon.
Then, because Patrick was bouncing off the walls, we gave into another request for a walk and went and grabbed some dinner, unpacked the TPN that arrived by fedex today, changed a central line dressing (they soaked this one in betadyne for some reason), helped maintenance fix a clogged pipe (yup, that followed us here).. and then tucked Patrick into bed.
And now, with my laundry just about to finish drying, I’m going to wrap up this post.
Obviously, Brian found a way to get me an internet connect for an evening blog post. Don’t know if I’ll get to this tomorrow evening, though, as we’ll be spending the night inpatient.