God is our merciful Father and the source of all comfort. He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.
(2 Corinthians 1:3b-4, NLT)

Wednesday, April 8, 2009

Wednesday, March 8
Today was a very busy day. Faith and I took the train for the first time and met Dave, my mom, and the boys at the station where the train closest to them meets up with the train by us (Park St.). It was much easier than I expected, and I foresee many train rides in our future here in Boston! Faith and I got there first, so we went up to ground level to wait. The station is right below Boston Common, so we got to see that. Unfortunately, Faith's not a big fan of wind, so we didn't stay out long, and ducked into a Dunkin' Donuts for a snack to wait. I think when the weather warms up more, we'll be returning for walks.
We did get an awesome new accessory this week that has made life much more pleasant! It's called a Peekaru, and its inventor, Melissa, who I know from CAP (a local to Denver online group) generously sent us one (she sent us an awesome new carrier too!). I have a feeling I will be handing out a LOT of her business cards, as every time I wear it, at least one person asks me where I got it! I don't know how I lived without it... Oh wait, yeah I do- I buttoned my coat around both of us, and now have buttons to sew back on! Everyone who uses a baby carrier when it's cold out needs one of these!
Anyway, I'm so glad they were all able to come out. Noah and I have never really been apart for more than a couple of days, so he's been acting out more and I have missed him so much. It is so nice to be able to spend time with him and with Dave, my mom, and Nathan. We went to the Children's Museum and spent a couple of hours letting the boys run and play there. We'll definitely be back, since we get in for free with our military ID's, and it was really easy to get there on the train. We also saw the circus tent while walking trying to find somewhere to eat, I think we'll take the boys there, too. It's the same circus that the clown doctors at the hospital are from, and it's actually a non-profit that has a lot of neat community outreach programs. We're looking forward to enjoying all of the local attractions. Hopefully the weather will look at the calendar and see that in fact, it IS spring, and start being a little better for us!
Unfortunately, we thought they would be able to stay on the air force base while they are out here, as that's what we were led to believe when we initially called to ask about it, but now they found out that they will have to renew their reservation every single day, and if someone else needs a room, they will lose their room. So pretty much, every day they could potentially find out they don't have anywhere to stay. We are trying to figure out another arrangement, but it's hard. They're not allowed to stay with Faith and I (and honestly couldn't fit if they wanted to!), and we were really counting on the AFB since it is so affordable, about $40/night. Instead it seems that we may be paying almost 3x as much for them to stay in a hotel, so we may have to dramatically shorten the length of their visit :-( I hope we can figure something out, it sure would be depressing to have them come out, only for them to have to go home again right away because we can't afford for them to stay!
In other news...
Faith's C-diff isn't gone... in fact it's back full force, so she restarted her antibiotic for it. I won't go into details about how I knew it wasn't better, but I will say the guy at the lab when I took the sample in for them to test said something about how they didn't have orders for urine, if that gives you a clue...
We had a nurse out last night to watch me prep Faith's TPN and get her hooked up. I was having issues with air backing into the tubing as I went to hook her after priming (I forgot to clamp the Y!), and then with blood backing up into the tubing after I hooked her up. The first time the blood backed into the tubing, I freaked out and didn't know what to do... it was Sunday night so there was no one for me to call, and I ended up calling Abby Brogan, Ellie's mom, hoping that she'd know what to do since she has a couple of years' worth of experience with this stuff... she calmed me down and suggested I call Dr. Puder and the homecare company. So I called Dr. Puder (well, had him paged). He called me back within 5 minutes of me having him paged (have I mentioned how awesome he is?) and calmed me down even more. He told me it wasn't a big deal as long as I didn't see any clots. I think he may have been slightly concerned since Faith was screaming in the background like I cut her arm off... In my flustered state I dropped every single one of her pacifiers and was in the process of sterilizing them in the bottle warmer (I love that thing!) and she was NOT happy about it. He asked a couple of times if she was ok, and if I was sure everything else was ok... I think I got him reassured though. Finally I called the homecare company and asked what the heck was going on, and why it was happening, and the nurse on the phone said I needed backcheck valves and that she'd send some out the next day. Well, I didn't get any... and it happened again a second night. The second time it happened, I was just plain mad, and called and asked again what the heck was going on. The nurse the second night said she wasn't sure but was able to talk me through it to get Faith hooked up, and got the ball rolling to get the nurse out last night. The nurse last night watched and said I'm doing everything right (since I remembered to clamp the Y last night) and I added a backcheck valve to the tubing right at the end before where it hooks up to her, so no more bleeding back! It was good to have someone watch and reassure me that I'm doing everything right. The only bad thing was, as I pushed the spike into the Omegaven bottle, I pinched my finger on the metal rim of the bottle and cut it, and now I have a big nasty blood blister there.
We had a bit of an "Oh NO!" moment as we were changing Faith's Broviac dressing. The way they do it here is quite the process- there's a fancy little sterile kit with everything you need. The whole process is sterile, with masks, sterile gloves for me, the whole deal. We got the old dressing off, then I put the sterile gloves on and could no longer touch anything without being contaminated. I got her site cleaned with the chloraprep, and was standing there waiting for it to dry. The nurse was holding Faith's line up to let it dry all the way (holding by the clamp, which is ok, since it's not important for that part to be sterile) and Dave was standing at the end of the bed holding the sterile kit. The next thing we knew, the lights went out! I think I said something along the lines of "Oh shoot, what do we do now?!" It was absolutely one of the worst possible moments the lights could ever go out. Luckily, they came right back on, and we hurried and finished before they could go out again.
I've been gradually increasing Faith's feeds. On Saturday (the day after we were released from the hospital) I increased her to 15 mL/hr, then today I increased her to 16 mL/hr, and she's tolerating it! I also latched her on and let her breastfeed for a little while Saturday night, although I'm not sure how much she got... I did see her swallow though so I know she got something. She tolerated that well, so the next day I gave her some milk in a bottle (didn't measure because I wasn't really thinking about it!) and she kept that down too, so then the next day I measured out 10 mL and gave her that in a bottle, and she drank it all and kept it down! She did get worse reflux afterwards, and I thought she was going to lose it a couple of times, so I think next time I try, I'll do 5 mL a few times a day, instead.
My hope is, if I could get her to take 5 mL maybe 4 or 5 times a day, that would add an extra 20 or 25 mL to her daily intake, and maybe it would improve her weight gain a little. And if she starts gaining weight better, we'll be able to start knocking hours off of how long she's on the TPN every day, which means more time when she ONLY has her feed running, and she's a lot more portable. If I get her to take 5 mL without increasing her reflux and thus her discomfort, then I might try 7 mL and see what happens, and if she does well with 7 mL, then I might try 10 mL again. Even 7 mL 4-5 times a day would add 28-35 mL to her daily intake, which at her current continuous rate would be like adding an extra 2 hours to the day. At 10 mL it would be like adding 2.5-3 hours to the day. Every little bit will help, especially since she's never gained weight very well for more than like a week at a time, so she has some catching up to do. And maybe when she gets on the Cisapride, her stomach will work a little better, and she'll be able to tolerate more for feeds.
I haven't really gotten to talk to her team about specifics for plans in terms of increasing her feeds or doing oral feeds. I did get the ok from both Dr. Duggan and Dr. Puder on trying oral feeds, which is why I figured it was ok to do it. I'd like to aim for at least 4 bottles a day, starting at 5 mL and working up depending on how she tolerates it, and I'd like to try to nurse her at least once a day. Dr. Puder pretty much told me to increase her continuous feeds whenever I feel like it's time and just go by her signs in terms of tolerance. I've seen her not tolerate things enough times now that I know exactly what to look for, and I'll know right away if she does stop tolerating feeds, so I can back her down to where she's ok again. I like having the control over how her feeds progress. I really kind of always have had control, since I was ok telling the doctors when it was time to stop, but it's nice to be able to do it on my own without having to fight with doctors.
We have our first appointment with the CAIR clinic tomorrow, I look forward to seeing where we go from here! Faith's last blood draws before we left the hospital were her baseline Cisapride labs, and Dr. Puder told me the other night that her direct bilirubin was down to 7.0... I'm not holding my breath to believe it's already coming down from the Omegaven, since most of the time it takes a couple of weeks to really even spike... but it sure would be nice! She'll have her next labs drawn after our appointment tomorrow, and we should know the results pretty quickly to see what her numbers are really doing, so stay tuned for that! It is definitely exciting to see her getting better, her color is better (although still yellow) and she has started to have a lot more awake time during the day. Thankfully, she's still sleeping through the night! Hopefully I can get back into that routine soon, too, and get out of this insomniac routine I've fallen into lately! I am falling asleep, so I should go now! I'll try to get on and post more recent pictures sometime tomorrow!


Emily said...

I've been reading your blog religiously and thinking about and praying for your sweet girl. I'm so happy you guys made it safely to Boston and she's been started on omegaven!

My daughter was very started on long term TPN this morning. I was not prepared at all for this step and had not realized we were at this point. I have no clue what all is involved with doing TPN at home. I'm told that there are portable infusion pumps but as with feeding pumps I know that there are feeding pumps and then there's the gold standard like the little backpack feeding pump we have. Is this the case with the infusion pumps as well? Is there anything I should be asking for from home health? I'm told we'll be discharged on Saturday and am feeling utterly unprepared for all of this. Do you have any suggestions?

Raeanne said...

Hi Emily! There is a Yahoo Group called TPN Support that you should join.
I prepared myself mainly by reading about other people who were doing it at home, most of the short gut blogs linked on the left side of ours talk about it. In particular I liked Max's for that, because they had a couple of problems actually happen, so I was able to see some of what could go wrong, but the problems were never that big of a deal, so I found that reassuring.
Also if you go to Ellie's blog and click on the "line cover" link on the right side of hers, it will take you to a post they did about the cover they made for her lines. My mom made one of these for me and I LOVE it, I don't leave home without it! The only time I don't use it is when her Omegaven is infusing overnight, otherwise it is always on. It makes me feel a little safer, less likely to snag a tube on something.
In terms of pumps, from what I've gathered we have the one that most people prefer, it's called a Curlin and is pretty small. Ours came with a burgundy shoulder bag to carry it in, which is ok, but I'm actually hoping to get a backpack that I can carry both the feeding and TPN pumps/bags in, and maybe even use it as a diaper bag too, because I don't like carrying the shoulder bags and I think it would be easier. Make sure you have backcheck valves! ;)
Oh, another thing- check out the short gut wiki tips and tricks for central lines and TPN- http://grey.colorado.edu/shortgut/index.php/Central_lines_and_TPN I got a lot of ideas from there. I use a metal cookie sheet for preparing my TPN, that way I always have a sterile surface no matter where I am (wipe it down with rubbing alcohol and let it dry before starting). I think I got that idea from the wiki.
I think you'll feel unprepared no matter what, but try to start doing most of her stuff, that should help. Actually doing Faith's flush and lock when she disconnected and actually hooking her up when it was time helped me realize it really isn't that hard. There are a lot of steps to remember, but once you get a routine it's not that bad. Really join the Yahoo Group, there's a lot of helpful info and anytime I've had a question I've posted there and gotten great answers.
I hope this helps, and you guys will be in my prayers!

Anonymous said...

Hi Raeanne. Glad to hear things are going ok. Might I make a suggestion? When you have such long posts, add a break every 6 lines or so. I have a hard time reading it, and I'm betting some others are too. Silly to mention, but it would make it much easier on everyone's eyes. We love you guys,
Amanda and Avery

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