My cell phone went off during the concluding speaker's talk in sacrament meeting yesterday. Yes, I do not condone doing so, but I always feel better when I have it on and with me in case the hospital needs to contact us in the event of an emergency. Fortunately, this was not one, but I did recognize the number as someone calling from the hospital. My first instinct was to stand up and rush out to take the call and I probably would have, had I not had Landon on my lap and Trevy blocking the exit from the pew. I tried to come up with an excuse that would allow them to accept my absence and stay with James, but that didn't work. They all wanted to go with me. So I changed my plan and decided to wait out the first meeting. Fortunately, Dr. Cosentino did leave a message and a number to page her, which I did as soon as I could. I figured trying to call her back while trying to keep three kids from screaming and wreaking havoc on the building wasn't going to work out so well anyway.
As it turned out, Dr. Cosentino had been in to take a look at Timmy and determined that the broviac cuff should just come out. In her own words, if it's giving him trouble now, it's just going to give him trouble later. James and I had both felt last week that it should probably come out, but Dr. Shehab felt that the blood line was sealed off sufficiently from the skin and some of the NICU personnel made it sound like the surgeons weren't comfortable doing that with a trach. Au contraire, when I asked Dr. Cosentino, she told me it's actually easier to put a child under who has a trach. You don't have to worry about the ET tube coming back out. She also assured me that this should not cause any delay in Timmy's being discharged on Tuesday. Wonderful!
Dr. Cosentino was already scheduled for several surgeries at TMC this morning so she told me that Dr. Stafford would be the one to remove the cuff and that she had already scheduled Timmy for 7:30am and would make sure Dr. Stafford knew. I asked her personally this time what time I should be there. I asked if I needed to be there at 6:30, she said 7 at first and then reconsidered and said 6:45.
Knowing I would need to be there early this morning, I told myself I wouldn't stay late last night and made it into the NICU around 9:30. Timmy had just finished eating about an hour before but had taken quite a while to eat. Joanna, who had him for the very first time, although she has had two of the other babies in the room a few times lately, told me that she thought he would probably wake up relatively soon. He was also to be NPO once again starting at 1am. Poor little sweetie! (How many times have I typed that lately? Good grief!) So, once again, we decided to tank him up. Timmy didn't even stir until 10:30, at which point I decided to try to wake him up to nurse so we could try to get in two feedings before 1am. No could do. No matter how many times I changed his diaper or suctioned (I only did each twice in a half hour period so don't think me crazily excessive), he just wasn't wanting to wake up. As it got later and later, I started thinking I should just pump and let Joanna feed him when she could.
Around 11 he did finally rouse and ate for a little while before dozing again. We then broke out the big guns and changed not only his diaper but trach ties and he ate longer to finish up around midnight. Definitely stayed longer than I had planned. As one would expect, he wasn't interested again before 1am so that was his last feeding until after the surgery.
I don't even recall hearing the alarm I set to pump at 3:30 this morning. At 5:50, I remember thinking, "Hmmm...that's my alarm. Maybe I could reset it for a little longer. Wait a minute! Timmy's surgery!" and I was up. Still running a little late anyway. I blazed back into the NICU at 6:50 and Joanna told me that surgery hadn't even been in yet. Phew! (Strange how I almost instantly started feeling a little frustrated that they were late. How does that work?)
They weren't long in coming and arrived shortly after Cassie at shift change. She and Joanna both accompanied Timmy in his rather loud crib back down to the basement for the fourth time in under a month. One of the wheels on his crib has a flat spot and it seriously sounds like "a Wal-mart shopping cart" to quote Dr. Stafford. One perk is that people hear you coming and move out of your way. No loitering in the middle of the aisles!
Not a long wait. I don't think babies go down there too often, as Timmy usually attracts a fair amount of attention. Granted, he is extremely cute so I'm sure he would still be thronged even if there were a lot of infants.
True to his word, Dr. Stafford didn't take long with the surgery - Timmy was in around 8 and Dr. Stafford came out to talk to me around 8:30. The surgery went well. The cuff came out cleanly and the incision was only about a half centimeter long. An older gentleman came out about five minutes later to take me back to Timmy in the PACU (post anesthesia care unit). He didn't look bothered by the surgery at all! He was rooting around something fierce but in no distress or apparent pain whatsoever. Somewhere along the lines, there had been a little miscommunication because NICU patients are not supposed to be taken to the PACU at all. They just return straight to the NICU. After five previous surgeries and Cassie telling the anesthesiology team (may be wrong on this one) again this morning, I knew Timmy was supposed to go straight upstairs and was surprised he didn't. It didn't much matter to me at this point, though, because Timmy is stable and they let me feed him.
Another noisy ride upstairs and Cassie was waiting. It's always a little bit of work to get everything switched from transport equipment to NICU equipment and to get baby all situated and comfy again. More tedious than anything. With her having two babies, it is nice to know how to suction and do a little more to help with Timmy now.
We were called to rounds fairly soon after returning. Discharge was still on for tomorrow, pending consult with Dr. Shehab (infectious disease). The culture taken from the swab on Saturday had turned positive again, although the last blood culture taken last Tuesday had remained negative for the full five days. We just needed to hear whether or not the IV antibiotics would need to be continued or adjusted. Hopefully the 10-day course he had already been given in conjunction with what we were expected to give him at home would be enough.
The main concern of the morning was Timmy's weight. After hitting 3.0kg Friday night, he dropped to 2.94kg on Saturday and repeated last night. Not a huge drop in kilograms, but 0.06kg is equal to just over 2 ounces so Timmy had just dropped from 6 lbs. 10 oz. back to 6 lbs. 8 oz. Personally, I feel that this has a fair amount to do with him not feeling well and another bit to do with him not liking to take bottles so much after getting to breast feed. (Don't even suggest that I stop until he comes home!) I really think he will fair better weight-wise once he has full-time access to mom. In general, he does do well with bottles - taking upwards of 2 oz. - but there are other times he barely clears 1 ounce. The big concern with this is that his improved diet and weight gain are needed to drive his body's passage of the bilirubin in his liver that is causing the jaundice. His direct bilirubin went up just a hair (5.8 from 5.7) the other day. Very frustrating. Seems like so many little things are working against each other in a clockwise motion, sometimes helping, sometimes hurting. Right now, I just want to bring Timmy home and let him move forward on life. I love our pediatrician and know she will do a fabulous job keeping tabs on Timmy. (Shoot, forgot to reschedule that appointment. I keep scheduling according to given discharge dates. So many appointments to schedule once he's discharged. Hoping my brain can keep on top of his little calendar!)
Everyone in the room and all of Timmy's friends have been in on the celebration of Timmy's impending discharge tomorrow so it was pretty disheartening when Dr. Bennett came in to announce that she had just talked to Dr. Shehab and he wants Timmy to stay on the IV antibiotics at least another three days, meaning that Thursday would now be the earliest possibility for discharge. However, he was supposed to be stopping by to make his final appraisal. (He didn't make it by today so that could still be debatable.)
All in all, it was a pretty busy morning and afternoon. I really was trying to get home to help James with the kids, but there is a lot to do and a lot of people to coordinate with in trying to get Timmy home with everything he needs. Val Vickers stopped by. Love the woman. She really has a lot of spunk. It's also just fun to swap stories with her about how your judgment of other moms changes once you find yourself in their shoes. She has already scheduled Timmy's pulmonary visit with Dr. Brown for 8/24. We have mutually agreed that he needs to be coming in from home at that point.
We also got a visit from Gloria, the lactation consultant. During rounds, it was brought up again that Timmy and I had tried using the SNS and it just didn't fly with him. They will be bumping up the fortification of the bottles Timmy gets to 26 calories and Dr. Edde recommended that half his feedings be bottle feedings when he comes home so that we can continue to fortify his milk to promote his weight gain. Again, quite disheartening because I have no love for the pump whatsoever. Very ready to pack it away. Gloria was called in to give further suggestions on getting to the hind milk, the richer milk that is produced later once breastfeeding has begun and the letdown reflex has been activated. She said that it's hard to tell exactly when that occurs. With breastfeeding, there are so many variables and it varies so widely from one woman to the next and even from morning to afternoon to night. Fat content can be double in the morning what it was overnight or vice versa. Sigh. There goes our one easy out. At least Timmy still nurses well. Cannot complain there. The group of us decided that he should just nurse as much as he wants and as frequently as he is willing. Any time he'll latch on, let him have it. That works fine while I'm in the NICU, but not sure that's going to sit really well with the other kids once he comes home. Hopefully he'll just be more comfortable at home and the weight issue will resolve itself quickly.
Sandra also came by. She got to feed Timmy for the first time yesterday and he ate really well for her. She and I were also supposed to play tennis this morning. At 7:30, ironically. We planned this two weeks ago and had been in the clear all the way up until yesterday morning. Seriously thinking that all this is a trial of my patience. We are rescheduled again but already I need to reneg on that one. Darn bishopric Tuesday night meetings! =)
Laura Gile was another very welcome visitor. I was getting a little nervous about home supplies and hadn't really followed before on exactly what was coming from where so she got me straight on that and hooked me up with Rebecca, the Preferred Home Health liaison, so I would know what was already on hand waiting for Timmy to come home and what I would need to order each month and what was covered by our insurance. What a relief!
Candy also came by from the department of nursing that helps out at home. Once again, just need to contact once I get home. They will come out to assess and assist once or twice a week for a while. Very nice. Just wish our insurance covered them to stay longer. Like overnight!
Lots of nursing this afternoon. Every time I thought Timmy was done and asleep and I went to put him down, his eyes would pop back open. I think it was a little chilly in the room and that's what kept waking him up so I got him back in his overalls. So cute! Love those things! I figured I should put him in them while I could, as the shirt is long-sleeved and our house never gets chilly right now with evaporative cooling. (I can't put the right sleeve on his arm because of the PICC line.)
Peaceful perfection. Love this sweet little boy.
I had some time to get Cassie's opinion on things before I headed out around 3pm. She is wondering why they are keeping Timmy. His blood culture from last Tuesday is clear. The culture taken on Saturday is a wound culture, taken from the skin where staph are always present anyway. Part of me just wants them to take another blood culture and if it's clean after 24-48 hours, kiss us goodbye! If not, we'll hang out a couple more days after that for the IV and then we're out of there. Not entirely sure why we still need an IV after so long. I know the effects are more rapid and direct going straight into the bloodstream, but we're going to be giving him oral antibiotics as well anyway.
Just a bit frustrated. Never would have thought we would make it past Timmy's due date and now we are more than a month beyond. Very ready to have my baby home. I know it's going to be a challenge to take care of an infant with a trach on top of three energetic toddlers, but it will be nice to be able to stay home to take care of him, to breastfeed at will, to introduce him to family members - siblings particularly - he hasn't yet met...
I know people mean well when they say, "He'll be home soon" but it really doesn't help. I know he's coming home and I do feel it shouldn't be that much longer, it's just that, in my mind, he should have been home a long time ago. No "soon" is soon enough. I know he wasn't ready and there were reasons - an ET tube specifically and no knowledge of how he would do with feeding - that he couldn't.
It's also hard when I'm feeling especially tired and frustrated to have someone ask if Timmy has made it home yet. I hate saying no and having to explain. I also hate feeling guilty for feeling this way because I know so many people ask because they care and have done so much for us and have a right to know. One of the hardest things for me right now is trying to tell people just how much I appreciate them and all they do for us. You are all very much loved and appreciated. It brings me to tears every time I think how very lucky we are to have such an incredible support system of people who have sacrificed so much of their time and resources in our behalf. If I can't look you in the eye to say thank you, know it's because I wouldn't be able to get the words out, not because I don't care.
Please be patient with me. I'm doing my best to be appreciative, to be patient, to be a good wife and mom to the kids I already have. I am tired, I am frustrated, I am eager to take on the challenge of coordinating a life with four children and a multitude of doctor visits. I am sure there are challenges waiting that I have yet to think of but I can neither fear nor conquer them until we are given the chance to get there. Please keep Timmy in your prayers that this will be the week we finally get that chance.
2 comments:
Oh sweet friend you are doing an amazing job!!! I will keep yours and Timmy's name on the prayer roll of the Temple and also keep you in our prayers! Hang in there!!! Much luv and Hugs
Tif
LOVE the overalls :)
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