Brian and I were talking about the week’s events and he said to me “This is going to make one heck of a blog post.”
Well, yes, it will, so I decided I’d better take this moment of quiet to write about the first and more medical part of the week.
Rewind to last Saturday night, a week ago. Patrick’s bacterial overgrowth or whatever it was was acting up again. Just before dinner, he made that “I feel sick face” and I barely got a tube on to drain his stomach on time.
At bedtime, as I gave his medications, he made the same face but as it’d only been a couple hours, I put him to bed anyway. I put his tummy to downdrain an hour after he falls asleep anyway. Surely he could last that long. Big mistake. He woke up just as I was heading into his room throwing up.
So, I rushed in and got him out of bed. He was really, really shaken up by this rude interruption to his sleep. Just sobbing. I sat on the floor and tried to comfort him and clean him up while Brian remade the bed. Meanwhile, I drained his stomach the rest of the way. Once all was clean, he went right back to sleep.
But it was to be short-lived. A few hours later, he was up again. I went in and did my best to get him to sleep, but he was really unhappy with the idea. I noticed his pajamas seemed a bit damp, so I changed his diaper and PJ’s yet again. I tried to rock him to sleep for another hour, but he just wasn’t going to have it. At last, I just gave up in frustration, put him in his crib and went back to bed. Another mistake.
It sounded like he eventually fell asleep, so I did, too. But an hour later, he was awake again, this time pretty sad and sleepy. So, I went in and rocked him to sleep, then snuggled down in the recliner in his room with him so we’d all get more sleep.
At 6 a.m., I finally snuck him back to bed and found I was quite wet. But, all I could see with the light of my flashlight was more clear wet, so I decided it was another leaky diaper and left him.
At 8, he woke again. This time I found him in his bed tearing his central line dressing into tiny little pieces. A quick glance revealed that last week’s repair had blown during the night. The puddle and the night’s events all pointed to one conclusion – the line had been broken for hours. It hadn’t bled a drop.
This is good, as Patrick could easily have bled to death. But it also was worrisome, as it meant that there were clots in the line.
So, I woke Brian and we made a mad rush to pack and get into the hospital to try to repair the line. We arrived around 9 and the IV team came quickly to do the repair. However, with the line clotted, it wasn’t possible to test the line to see if the repair was done right. We just had to act on faith. They told the nurse it was done, and she came in to say they were ready to send us home.
Now, normally I love to be in and out of the hospital as quickly as possible. But at this point, Patrick had been without TPN for as much as possibly 9 hours. And we were going home with a fully clotted line. I explained that I’d like to stay where they could place an IV in his hand or arm to give fluids if they needed too, but they were determined that we should go. The hospital is overflowing right now with cold, flu and RSV cases. They didn’t want us exposed and, honestly, they needed the space.
Finally the doctor came to talk to us and I couldn’t help keep the tears from flowing. I’m brave in a lot of ways, much braver than most parents and it means we get away with doing a lot of things at home for Patrick. But after having him stop breathing and his heart stop beating in my arms and having the doctors say it was caused by low blood sugar, among other things, I really get scared when Patrick’s TPN is taken away for any length of time… especially when I am asked to do it at home.
Finally, though, Brian and the doctors convinced me that it would be safest to get away from all the respiratory bugs in the hospital and go home. They ordered TPA, a declotting agent, for us to use on the line at home and sent us on our way.
I was feeling awfully alone that morning as we left the hospital. Especially as this was one more week of missing church and family dinner. Thankfully, the mom of one of Patrick’s music group friends happened to be arriving at the hospital as we left and she gave me a hug and a good pep talk.
We got home and Patrick tried to nap. But he didn’t feel well enough, so I wrapped him in a quilt and cuddled with him in the big comfy chair in our living room. We watched 3 hours of Bob the Builder while he sucked on a candy cane to help keep his blood sugar up. (Glucose can be absorbed in the mouth. This is the only time Patrick is ever allowed candy.) He was exhausted and would doze off from time to time, but never with the candy cane far away.
Finally, 2 p.m. came and the glue in the repair had set enough to start trying to declot the line. The first lumen was easy. Brian just drew the clot out into a syringe and we were able to start giving TPN through that line.
The 2nd lumen, though, was stubborn. We put all 4 doses of TPA into it. (Usual protocol is 2 doses, then call the hospital.) We pushed and pulled and finally got a little blood to draw, but it wouldn’t flush. Finally, we left TPA in it for a whole night, but in the morning, it didn’t work.
So, Monday morning I called the nurse in the GI clinic. At 11 a.m. they called and said to come into the hospital so they could help to work on unclotting the line. So, back we went.
We got there just after noon and saw the doctors right away. They decided we’d given TPA a fair chance, so next they decided to try hydrochloric acid. This can eat through mineral deposits from the TPN. It took nearly 3 hours, though, before the overworked pharmacy got this prepared. Patrick and I napped while we waited. Then, went for a walk in the hospital while the 30 minute soak was in.
We ran into another Short Gut family who was there for a line infection. Patrick and their litttle short gut boy got to play together in the playroom.
Then we went back to draw the hydrochloric acid back out, but there was no change. Next, they tried sodium bicarbonate. Same routine. Long wait, then we wandered through the hospital while we waited. Brian got off work and came up for dinner.
But, in the end, no change.
At this point, we knew the line would have to be removed. You can’t leave a clot in your body, even if it is inside a catheter. The doctor gave us 2 choices: go home and try to get added onto the outpatient surgery schedule, or stay the night and try to force surgery to make him an inpatient add-on.
We opted to go home. We needed sleep. And, we have a good enough relationship with Patrick’s doctors that we knew they’d do all they could for him.
So, Tuesday morning I woke up with that same sinking feeling in my stomach knowing that the line would have to be taken out and not knowing what putting a new line in would require. I didn’t even know if it’d be done that day or the next week.
But at least I had a good distraction. For valentine’s day, Brian bought me 3 hours of professional housecleaning. The cleaning service arrived at 9 and did a great job making our bedrooms, bathrooms and living room look spic and span. They did a lot of what I never hav time to do… scrubbed tubs, mopped floors, dusted, etc. While they worked, I made calls to the Dr. Jackson to start working on a plan.
Then, Patrick and I snuck away to IHOP for National Pancake Day. They give you a free short stack of pancakes in exchange for a donation to the children’s hospital. We thought this a fair trade. My mom and sisters came too and we had a great lunch. They had a pirate there making balloon animals. Patrick came away with a sword and pirate hat, quite happy.
At last, Dr. Jackson called back. I explained the problem. Of course, this all happened the week we had planned a family vacation. And so, Dr. Jackson pulled strings so the line could be repaired with time for us to still go. So, I got word at 1 on Tuesday that Patrick would go into surgery the next morning.
Patrick had an appointment with his physical therapist Tuesday afternoon. And his new brace was supposed to have arrived, so I didn’t want to miss it. So, I forwarded the phones to my cell phone and away we went. (Hooray for Ooma VOIP service).
The brace was a perfect fit… even fit inside his current shoe so I didn’t have to go shopping for new shoes again. We tested it out and worked for half an hour, then my phone rang.
Patrick’s wonderful PT Holly kept working with him while I gave surgery Patrick’s history… always a TREMENDOUSLY BIG feat. You should see the notes they take. Half an hour later, I got off the phone just as the therapy session ended.
My phone kept ringing all afternoon as I got instructions and made plans for the next day.
We checked into surgery Wednesday morning at the bright and early hour of 6:45 a.m. Patrick loved playing with all the toys in the waiting room, and I marvelled that he was finally big enough for those toys.
We got him into his surgical gown and then a nurse practitioner came to take his history. She was obviously nervous about the complexity of it all. But she was still very kind about it. And Patrick loved her bedside manner. He even opened his mouth, stuck out his tongue, and said “Aah” for her.
Then, we wandered down to ultrasound. Since Patrick’s had so many lines, not all of his veins are good to run them through anymore. So, they look in ultrasound to see what his veins now look like and where IV’s can go.
Patrick hates having ultrasounds done of his juglar veins. It took Brian holding his bottom half and one hand and me leaned over the top of the bed holding his head and the other hand while trying to entertain him with the Elias Tours app (animated car and truck flashcards). And even then, the images were only borderline good.
When that was done, we checked into surgery to find they were behind schedule. By this point, all the hanging upside down after 3 days of limited sleep was getting to me. So, we wandered down the cafeteria to get breakfast (and ibuprofen.) Just as we finished, they paged us on the overhead. Surgery wanted us back, as they were not as behind as they thought they were.
We met with the anethesiologist and the surgeon, Dr. Rollins (a.k.a. “Ca-ca Ro-ro” in Patrick’s language.) Dr. Rollins is Patrick’s surgeon so he talked to us about his overall health, fishing to see if he should be offering surgical help for Patrick’s motility problems. It’s so nice to have doctors who really care like that.
Then, we gave Patrick some Versed and he got all giggly and kissy and limp. Then, we put him in a wagon, kissed him goodbye, and they wheeled him off to surgery.
The procedure went quickly and well. Because we’d unclotted the larger lumen, Dr. Rollins was able to actually run a wire through the line. He removed the line with the wire in place, then use the wire to guide a new line back into the same vein. This buys us a little more time in that same place with the central line… a miraculous thing for a boy who is running low on places to put IV’s.
They called me back to recovery quickly. There, Patrick was just waking up and in pain. They gave him some pain medicine and the nurse asked if it would help for me to hold him. We just needed to wait for an x-ray and a blood sugar test before she could send him to recovery.
But, when we moved him to pick him up, I noticed that he was bleeding more than he should be. Patrick tends to bleed a lot from the sites where lines have been tunneled.
So another nurse came and held pressure to stop the bleeding. Meanwhile, x-ray came. Finally, we got a blood sugar, too, but it was low.. So we got permission to restart the TPN.
It was odd to be a part of all of this action. Some PACU nurses don’t like parents hovering. However, the doctors had told the nurse that I really knew my stuff and, as Patrick’s complex, it would be best to call me back and to listen to me. So, I found myself kind of calling the shots.
By the time we finally got everything settled to go to recovery, Patrick had been awake long enough to be discharged. Brian came back and we let Patrick drink some water to be sure he wasn’t naseous. He still was. So we let him rest a bit.
But, as he rested, he managed to loosen his dressing just enough to have to change it.
And so, following doctor’s orders, the nurse said “Ok, you can do it.” She helped gather supplies and then left us to change the dressing on this brand new line and surgical site. Quite the feat to do, especially to do and control bleeding. But, we succeeded and I dare say did a pretty good job.
We made it home that afternoon. Patrick was really groggy, loud, energetic, and wobbly. He couldn’t walk, thanks to the anesthesia, though he sure kept trying.
Still, we had a working line, and by morning he was doing better… Which is good, as we had bigger, funner adventures ahead. We had the go ahead to go on vacation. And we’d even managed to pack our bags, in spite of it all.
To be continued…..