Last time I posted, I commented on the fact that January was over so quickly. Here we are almost through February already!!
The past couple of weeks have been fairly quiet for the most part. That's always a welcomed treat for us! Today, however, was another crazy day! Once again, Peyton's g-tube clogged because of the antibiotics she is on for the mycobacterium. They are so thick and gritty. There's granules in the suspension that just make a big mess. Anyway, I tried for a while to free the clog and it just wasn't happening. We got Moira ready for school and we all headed out the door, with me dropping Moira and Ron off on my way to the ER.
I was not in a good frame of mind this morning. It is so incredibly frustrating to have to deal with this. I wish the worst thing about giving Peyton her meds was that she refused because they tasted bad! Oral anything is not an option, so everything goes through the tube. If the tube gets clogged, it's bad news. At least her feeds aren't interrupted because they are through the "j" portion of the GJ tube. The meds are through the "g" portion. I KNOW there is so much to be grateful for. I do. I really do. But today just got to me - and quickly. Between the clog itself, the fact that I had no choice BUT to go to the hospital and face a potentially lengthy stay today, the fact that I am completely exhausted, the fact that the meds she HAS to be on are the culprit, the fact that I don't even know if they are even working, etc. - I just wasn't in a good place. To a degree, I still am not in a good place. My head is throbbing. My neck, shoulders and back are hurting. I've spent a good portion of my day (at home - not in public!) in tears. I feel selfish saying this, but today I just wish I could have a "normal" day. I mean a REAL normal day.
Anyway, on my way to the ER, I thought, you know, it's Tuesday and it's daytime - maybe the surgery clinic is open. It's them that I have to contact about tube problems because they are the ones who had it put in. Gastroenterology won't discuss tube issues with me even though it involves feeding. Go figure. As luck would have it, the surgery clinic was not open today (specialty clinics operate on particular days of the week). However, the woman I spoke with did try to put me through to someone. When she got back with me, she told me that she discussed the situation and was having one of the physician's assistants from peds surgery paged. By this time I was over half-way to the hospital, so she said she should be able to get with me before I was having to park - ER and clinic are two different parking garages. A few minutes later, I did get a call back from the same woman, who let me know that I was to head up to where the surgery clinic meets and have the registration desk page the PA. At least this would save a lengthy wait in the ER.
For a walk-in, I didn't really have to wait long in the waiting room. However, the PA was still rounding over at the hospital with the surgery team, so I did have to wait for her. When she got to us, she attempted to flush the tube. She didn't try the clog zapper stuff that the ER had used a couple weeks ago. To be honest, I don't know that any clog zapper could have been injected into the tube because it was that bad. The tube has to be changed out ever 3 months. This one was due to be changed on March 7th, so she wound up calling radiology to see if they could work Peyton in for this tube to be removed and a new one placed. It has to be done in radiology so they can watch on the screen to make sure it's going into the right spot. They were able to take Peyton. Off we went to radiology.
I didn't have to wait too long in the waiting room in radiology. When Peyton was brought back, they took an x-ray to see the current tube's position. Then the radiologist and a couple other people came in and began working on the removal/insertion process. It's not a real quick procedure. Fast enough, but it's a little involved. Peyton did really well. Apparently the old tube wasn't exactly in the proper position. Not sure if that would have been part of the clogging problem - likely not - but it wasn't great that it wasn't where it should be. The new one is in the proper position.
Best moment of the whole hospital experience (which had me home a little after noon - about 4 hours at MUSC)....when the radiologist told me I had to be more diligent about flushing the port!!!! If there wasn't something in between me and him at the time he said it, he probably might have gotten the full effect of "the eye" that I was sure I must be giving him. It was one of those moments where you look around and say, "Oh, excuse me, were you talking to me???" Are you KIDDING ME???? As if between me and the nurses, knowing full well how thick and grainy those meds are, we're just going to put them through the tube and not flush with a decent amount of water??? In fact, we give more than we need to because of that!! Not to mention the fact that there's about twelve times a day when meds are going through the port, getting properly flushed
every single time!!! Seriously??? I'm not being diligent enough???? If you've read this blog even once or twice, I'm pretty sure you get that I'm diligent when it comes to Peyton's care!!
Anyway....we got back home and went on about our day. The nurse was here when we got home. She took over while I went and grabbed a power nap.
As far as other issues go, we don't see any particular improvement at all since Peyton began these antibiotics on 2/03/11. Actually, in general, most people who come into the house have commented on how she's more tired than before, that she looks tired all the time, how she's not doing certain things in therapy that she was doing even a month ago, etc. She's not "hospital" sick right now, but there's something different. Can't put our fingers on what it is, but she's changed. Even if it's not a huge, drastic change, she's changed.
So, when today happened, it was a clogged tube on top of the frustration of all of this. There is so much uncertainty. I don't personally feel like the antibiotics are going to have much of an effect on Peyton. We see the pulmonary doctor on March 8th, I believe. Perhaps at that time we'll know if Peyton is to continue on the antibiotics for several more months or if they'll just stop them.
With today's clog and hospital trip came a revised medicine schedule. Why? Because everything got delayed because she couldn't get her meds with the tube being clogged. Why the problem?? Because she's on 14 different meds right now. Because some are once a day. Some are twice a day. Some are four times a day. With the antibiotics, antacids and iron supplments cannot be given within so many hours before or after the antibiotics. She takes both antacids and iron supplements. One antacid has to be given 20 minutes ahead of other meds. There's a whole lot of pharmaceutical / gastroenterological mathematics that goes into making Peyton's med dosing schedule. Everything is spaced over the course of the day. You can't give some meds too close together, so you have to be sure you've got good spacing...for everything. Now, because of the clogging issues, Peyton's being switched from the suspension formula for one antibiotic to the oral tablet that one would normally swallow. Instead, we'll crush it up and "dissolve" in water. Trust me, it's not going to dissolve fully, so it becomes another clog risk. Maybe not as bad as the suspension. We'll see. So, remember, Peyton is on 24 hour continuous feeds. Now we have to stop feeds 1 hour before this med is given (twice a day) and hold for until 2 hours after the med is given. That means we only have 18 of 24 hours to feed Peyton. We have to give her 4 cans of pediasure and 300 cc's of free water in 18 hours. This means a rate of 69 cc's per hour. The absolute MAX the GI doc wants her at is 50 cc's per hour. Riddle me that one!! Increase the rate of the feed and we're risking more vomiting than she's already doing. We're increasing the risk of aspiration that she's already doing. Are you sensing my frustration???? Anyway, I've re-set the med dosing schedule and will now be up at midnight giving meds (assuming I actually went to sleep before then)...and 2:50 am.....SO much fun I can hardly contain my excitement at the prospect. I'll be working on trying to shift the meds so it's not so horrible a schedule, but it will take time. They can't just be shifted several hours ahead of where they are now all at once!
I'm having such a hard time right now. We're in a series about "Joy" at church right now. One week the message was so clear on how complaining can cause you to lose your joy. Along with probably everyone else there that day, I said I was going to try to stop complaining. Then we hear about how we are to praise God in all things. Yes, we should. I know it. I do. I just feel like during the past few weeks of this series on "Joy", most things in my life have been working completely against what I've been learning and loving about the series. That, in itself, is so frustrating!!
On that note, I have to say I am SERIOUSLY looking forward to a quick weekend getaway I have planned. Moira's 7th birthday is coming up on March 10th. In an effort to give her some really good "Mommy-Moira" time, instead of having a big birthday party with all kinds of kids coming, we decided to do something special just for her. My dad is traveling down here next week. On Friday after school, he, Moira and I are driving to Orlando. Saturday will be spent at the Magic Kingdom. Sunday we come home. Very quick trip, but it's much needed. In fact, I would venture to say that right now I need it at least as much, if not more than she does right now!! Ron has to stay at home with Peyton. We have regular nursing hours, not overnight, so one of us had to stay behind. Besides, even if they were overnight we'd have to have someone here locally willing to be a back up person trained and checked off in the event that something fell through with the nurse while we were away.
And in case you are feeling badly for Ron now....we did start talking almost a month ago about a getaway for just the two of us. Again, my dad will come down primarily to watch Peyton. We've been trying to get round the clock nursing coverage set up for April 29 to May 1 or 2 (no, we're not heading to the UK for the royal wedding...April 29th is OUR anniversary!). We have a couple nurses who've told us they are willing to do the shifts over that time frame, but nothing has been set so far - hard for us to make plans when we don't know what's happening. IF we can get this to work, it'll mean sacrificing some hours during the week ending April 29th and the following week, but it will afford us the opportunity to have a much-needed getaway. IF we can get this to work, this will mean that Ron and I will GET AWAY TOGETHER FOR THE FIRST TIME IN FOUR AND A HALF YEARS!!!!!!!!!!!!!!!!!! So...yeah...we are more than a little anxious to get the word that we have the coverage to go ahead and start planning. Right now it's in the "I have a dream" phase...really not believing it will happen. Hopefully it will become a reality.
Not too much else is going on for now. I think that's about enough isn't it?!?!
Please continue to pray for Peyton...throw a couple in for me if you think about it! Thanks!!