this heart broken

The phase I thought she’d skip

jlzimm — Wed, 30 Jul 2008 15:52:21 +0000

Kids are so normal. Even when life is abnormal they are SO NORMAL. When Noah was two he was fascinated with his nose. Mainly in the way things could go up it. Mostly the things would come back out but one day, soon after we moved here, Noah shoved a cooked pea so far up his nose that we couldn’t get it out. It was an incredibly traumatic event that he STILL remembers. The nurse at his pediatricians office instructed me to lay him on the couch and then give him mouth to mouth without plugging his nose. EXCUSE ME!? HAVE YOU EVER SEEN A 2 YEAR OLD!? I don’t think I need to explain to anyone that Noah was not going to just lay there like Johnny the practice doll in CPR class. Needless to say, it was not a very successful exercise so off we went to the pediatrician’s office where their brilliance shown no brighter because all they did was “help me” give him mouth to mouth in hopes the pea would shoot out his nostril. One hysterical child, and a half hour later and the doctor told me it was most likely sucked down into his stomach during his bouts of screaming but that if it hadn’t it would start to smell in a couple days. That was the very last thing Noah ever stuck up his nose.

Zoe has had many things stuck up her nose: feeding tubes, viral sample tubes, intubation paraphernalia, oxygen prongs all very much against her consent. I really thought this kid would leave her nose alone. She knows what will happen if you stick something up your nose….IT %&$#$# HURTS! Last week at lunch I look over and Zoe is messing around with her left nostril (her feeding tube was sticking in her right side) and didn’t pay much attention. About 30 seconds later she lets loose a panicked squeal and I realize she’s shoved a peanut up her nose. Really? You didn’t see that one coming? The only thing that saved the girl is that she knows how to blow her nose and isn’t afraid of tweezers. So normal.

To Mimi

jlzimm — Tue, 29 Jul 2008 05:08:47 +0000

I met with a special mom tonight at the hospital whose little one is waiting for a heart and I just wanted to say a couple things to her and any other family who finds this blog.
It will seem overwhelming and probably discouraging to read about our life, but remember it isn’t your life and whatever comes at your family, God’s grace will get you through it; you haven’t been asked to live our life but yours. Also remember that all these events have taken place over the course of over two years and reading our compressed timeline could induce panic (if viewing it as a preview of life to come)…..just remember to breathe, and focus on the posts of joy we experience in the midst of the storm.

Another department to meet and greet

jlzimm — Tue, 29 Jul 2008 04:09:16 +0000

We’ll be meeting a new deparment at Children’s we haven’t yet encountered; pulmonology. Zoe’s chest x-ray today looked good and the congestion isn’t actually in her lungs but the question now is why isn’t she clearing it out. Her docs are now wondering if she doesn’t have some kind of asthma as a result of the RSV in March. She has other risk factors besides the RSV including being born by c-section and having a mother with asthma. So we’ll be seeing them in a couple months to find out their opinion on all this. In the meantime Zoe is happy, smiling and coughs like an old woman who smoked for 40 years. If you have the pleasure of being near her don’t worry about her passing anything on……she’s completely harmless. They actually offered to write a letter for us in the event she gets rejected by a group care setting because she sounds so horrible.

She continues to eat like her brother and has gained so much weight that she’s now over 10th percentile on the weight chart. I can’t tell you how happy that made my heart!

Making lemonade from our lemons

jlzimm — Sun, 27 Jul 2008 22:47:58 +0000

Zoe didn’t make it to the transplant picnic this year. Although she ditched the feeding tube this week her chest congestion got really ugly and she began coughing again. Tomorrow she will have a chest x-ray and be seen in clinic with a few labs thrown in for some real fun. All this meaning there was no way I was bringing her to the picnic BUT…Paul sent me off to it by myself. It was a little sad seeing everyone with their families and feeling very solo but then I realized I was at a park with ADULTS and was not responsible for any of the children; who wouldn’t have fun?

Return of the Appetite

jlzimm — Sun, 27 Jul 2008 22:41:18 +0000

On Wednesday Zoe had a nasty run-in with a certain slide at the park. I can’t exactly explain how but when her face smashed into the edge it cut her on both sides of the feeding tube leaving her with two small but bleeding cuts. As a result she needed the tube moved to the other nostril to let those cuts heal. We decided to give her a few hours “tube free” since she really only needs 2-3 feedings a day. We gave her a tube feeding first thing Thursday morning and then pulled out the tube. Guess what? She actually wanted to eat with that thing out. She ate enough calories on Thursday so we kept it out Friday all day. She ate 1000 calories (their goal for her is 900-1000). She ate voraciously at dinner time.

We barbequed steak and she ate a whopping 5 1/2 ounces and then had to chew on the bone when it was all done.

We’re happy to say that she still has the tube out and we’re hoping it stays away for a LONG time.

IDC

jlzimm — Fri, 18 Jul 2008 19:23:13 +0000

Zoe has now been without major symptoms for a week and a half and I began discussing with the team how long the virus will hang around on our “stuff”. There really is no point in trying to clean it out of our house since Lysol won’t kill it on our furniture. I do need to know this info though because next Saturday is the barbeque where all the transplant families get together and I don’t want to haul this bug there on our clothes. Can I just say….. I have been looking forward to it ALL YEAR! It’s the one time when I don’t feel like a total freak. Nobody looks at me weird when I gel my kids’ hands repeatedly or make sure they don’t lick anything or anyone. I know that every other family there has been just as diligent in making sure their family is healthy and hygenic while at the event. Last year’s barbeque was the most relaxed I have been at a social event in 2 years; it was an oasis. So, in my effort to make sure I will not expose the rest of the crowd to this virus I questioned one of the transplant nurses about this. He thought it would hang out on surfaces for maybe three weeks but wasn’t sure and didn’t think I needed to be too crazy with washing carseats/clothes before we left the house that day. He decided to check with IDC to make sure. IDC is Infectious Disease Control at the hospital and in many ways they have been the bane of my existence. This is the best way I can describe them: in the movie, Monster’s Inc the power company employs a hazmat team to “detox” monsters after they’ve been touched by kids or kids’ items in the most invasive and ridiculous over the top ways. If you don’t know what I mean go to http://www.youtube.com/watch?v=OgZi-uXlofk and fast forward to about 8min 20seconds. This is IDC. Guess what they told Jason? The upper respiratory portion of this virus hangs on a long time. If she has any secretions (runny nose, sneezing, etc) she should not be going. Zoe has had these symptoms since March from her RSV. They are not severe. They are not even everyday but $20 says they ban her from the barbeque. I am trying to be reasonable. I am trying to remember how bad I would feel if everyone at the picnic, or anyone for that matter, came down with this. This picnic is the team’s worst nightmare because we’re all there at once. Jason said the only way we could make it better is if we held it during RSV season. Ha, ha.

We got back the test results

jlzimm — Thu, 10 Jul 2008 03:39:50 +0000

this morning and she does indeed have a nasty virus called Adenovirus. It affects mostly infants and toddlers although Paul and I have successfully caught it (it’s much milder in adults so no fever, only cold symptoms). It is not a fun virus and the worst news is that it functions like her CMV in that she won’t ever successfully fight it off because of her immunosuppression. It will, from time to time, crop back up unlike in Noah, or Paul or I where we get it once and we’re done. Thankfully, it seems to have run it’s course in her body and today was her first fever free day in a week. She was SO happy. All things considered she really did fend off this bug well; it could have been so much worse symptom wise for her. Hopefully Paul and I will kick it soon.

We spent yesterday

jlzimm — Sun, 06 Jul 2008 20:48:56 +0000

in the ER since she seemed so much worse in the morning. Around 5:30 in the morning she was nearly hysterical and I was running through a list of things: are you hungry, thirsty, tired, do you hurt, etc? In exasperation I finally asked if she wanted to go to the hospital. She stopped crying, nodded her head yes emphatically and said, “uh, huh”. I asked again to make sure she understood what I was saying, “uh, huh”. She must have been feeling so awful. We went in and had her looked at, did a chest x-ray and tried to get in an IV. Unfortunately when you get a high fever your blood vessels constrict and hers are hard to find anyway. It was the worst situation I’ve been in with her since the night of her transplant when they couldn’t find a vein. Ironically, the nurse we had in the ER was the guy who eventually got an IV in that night. It was amazing to talk with him because he remembered that night when we mentioned it. He remembered realizing that he was our last hope of getting an IV in before the heart arrived; there was no one else to call. We weren’t so fortunate yesterday; they finally just gave up and didn’t repeat her labs and because they couldn’t give her a dose of antibiotics in the IV they had to give her two injections in her legs. The antibiotics were as a precaution because she doesn’t have viral symptoms. All in all I think she’s a little better today but since she spent all of yesterday crying even after we got home I would expect that. I talked to the doc today and her blood cultures came back negative but it’s possible the test was run too soon which is why they had tried to get blood to repeat the lab yesterday. If she does have a bacterial infection it would make sense that she’s a bit better today because she did get a huge dose of antibiotics yesterday. If that is the case then she will get worse in a couple days as the bacteria takes back over. They also did a viral swab yesterday and we’ll have those results on Wednesday. Right now we’re just hanging out waiting to see if she gets better or worse. She has some diarrhea now but since she’s completely stopped eating and is on 100% formula it could be a reaction to the food change.

I never thought I’d have a reason to LOVE her feeding tube but I do now. The only reason we were able to bring her home yesterday is because I can pump fluids into her via the tube instead of an IV. The fever reducers, particularly Ibuprofen are so hard on her kidneys in conjunction with her medications that she has to be inundated with fluids all day. Speaking of which….it’s time to push some more in.

No test results yet

jlzimm — Sat, 05 Jul 2008 04:16:29 +0000

The blood cultures are going to take 48 hours so we’ll know tomorrow night. We may take her in tomorrow just to be checked because it seems her face is a little puffy. More to come.

Yet again

jlzimm — Fri, 04 Jul 2008 21:27:36 +0000

we are waiting for some lab results. Wednesday evening (more likely afternoon) Zoe started a high fever. I wish now I had taken a video of her because I’ve never seen anything like this. Her fever was 103 and she was running around laughing and acting normal. The only reason I discovered her fever was because I touched her and felt how warm she was and so checked her temp. Thursday the fever was still there and she was acting somewhat cranky but still VERY normal. The pediatrician could find nothing wrong and in the most shocking moment of my life, cardiology told us not to come to the hospital but to go home and see if it blew over. Around 3:30 Zoe was acting cold and her feet and hands felt cold so I bundled her a bit more (it was a cloudy day) and within a half hour her temp shot up to 104.4! The pediatrician told us to go to the ER but cardiology said there was nothing to do since she has no symptoms except take labs or start IV antibiotics as a precaution. So we opted for labs and to come home to wait and see what would happen. Today she is definately under the weather but no viral symptoms at all. She’s not really eating but the great thing about feeding tubes is that we can stay home and push fluids here instead of through an IV at the hospital. We’ll be in close contact with cardiology today and her blood cultures (to check for a bacterial infection) will be done tonight and will give us a plan of action hopefully. Right now we’re just waiting for another symptom to show up so we know if it’s viral or what. Her fevers haven’t hit 104 today and when the Ibuprofen gets it under control she’s almost normal again. Not much fun for the fourth and her b-day party tomorrow has been canceled but we’re happy to be home.