No Go

Ughhhhhh. Two more weeks of IV antibiotics.

I am not sure what the exact numbers were from Ethan's labs this morning (because I've only heard from the pharmacist, not the nurse yet), but the pharmacist said that he had been notified that Ethan's labs were not down enough to discontinue the PICC line and that they wanted to do another course of antibiotics for 2 weeks. He will still be on the vancomycin every 8 hours which means 2 more weeks of up twice in the middle of the night for medications and line flushes. I was really looking forward to a solid night's sleep tonight! Oh well. There are worse things out there.

Even though this is disappointing, I have to be grateful that there IS a treatment and that we are all together as a family.

In other news, Gavin stayed home from Thanksgiving yesterday with Tim and Ethan because of a fever of 102. He had no other symptoms and so I wasn't too worried. Today, however, he just doesn't look very good and his breathing sounds really tight and raspy. So, in light of this new development, I will be taking him into the doctor's today. I am hoping that it is not H1N1 because Ethan just barely got his vaccination 2 days ago and it would not be protecting him at this point. Hopefully we can get Gavin healthy soon and keep the bug from spreading around. The last thing Ethan needs is a nasty cough or lung issues so soon after surgery.

I'll post as soon as we know what is going on with Gavin. Keep us in your prayers for something mild.


** Update**

Tim took Gavin to the doctor and he has been diagnosed with pneumonia. They didn't do a H1N1 test (which I wish they did, just in case), but they didn't feel that he had the right symptoms. After they did a chest x-ray they felt that pneumonia was the culprit of his difficult breathing and fevers. I am surprised on how fast it came on. They've put him on a 10 day course of oral antibiotics (Omnicef) which will hopefully start helping soon. I will keep a close eye on him because his breathing seems to be getting a little worse as the night progresses. I hope this isn't contagious!

---Allison

Clinic Update

We went to our post-op clinic appointment today. We had to drop Gavin off at my parent's house and when I told Ethan that we were going to "the doctor's office", these next few pictures show just how upset he was about it. He just kept crying and saying "No hospital, no hospital!". I seriously think that we have caused some major anxiety. I hope he gets over it.

As far as his appointment went, I am very pleased. We are able to go down on 2 of his medications to just once a day. They also said that he only has to wear his oxygen at night now. His chest x-ray, EKG, and vital signs all looked good. As far as "the lump" goes, they are pleased with how much smaller it is getting. All of his labs from this morning are good (his CRP was 6.7) and trending in the right direction. Ethan's last dose of Vancomycin should be this Friday. They will have more labs drawn then, and if everything looks good, they will pull his PICC line! Yeah! If that happens, he can also FINALLY have a bath.

After his appointment, we met Tim for lunch at Winger's. Ethan was again rebelling against taking pictures by pulling his oxygen down. Little does he know that it doesn't matter because he doesn't have to wear it during the day anymore. (This isn't a very flattering picture of myself, but it does give me motivation to start hitting the gym again. UGH.)

He was SO happy to leave the hospital and not "sleep over" there. He was all smiles once we were in the car to come home. The only "owie" that he had to get today was for his H1N1 vaccine. I am glad to have him finally be able to get it. Although we will have to give him another one again in a month as a booster. We'll just worry about that then.

And last but not least, we came home from Ethan's appointment to find this amazing fruit basket. It is HUGE! The kids are so excited to tear into it. I just told them to let me take a picture of it before they tore it apart. Thank you SO MUCH Betty and Larry. You are both so wonderful and we love you dearly.

I'll update again on Friday with those lab results and if we get to remove the PICC line or not. In the meantime HAPPY THANKSGIVING!!!

---Allison

No New News, Just Pics

I know that this picture isn't the greatest but I was just trying to get an image showing just how scrawny this little guy is now (this picture doesn't even give it justice). He officially lost 2 pounds (real weight, not water), which doesn't sound like a lot, but on this little man, it is.

These 2 pictures were taken before his haircut this morning. I needed to place new stickers on his cheeks for his oxygen, but his hair was too long. I also wanted to show you that his lump really is shrinking. Go Lump, Go!

These last 2 pictures were taken just after I cut his hair and changed his arm wrap (he likes to pick out the color). He wasn't happy about the whole process, and it's not the best haircut that he's had, but at least he's not so shaggy. It will look even better when it is actually styled.

Both Gavin and Spencer have been neglected in the haircut department as well. So little do they know it, but they will be ambushed as soon as they get home today. Why do boys hate getting their hair cut? I like getting my hair cut. Silly, silly boys.

---Allison

On The Right Track

I think that we are finally on the right track! Ethan's CRP this morning went back down to 8 and his WBC's are still looking good. He still has not had any fevers and "the lump" is finally starting to get smaller (it's still bigger than when we were discharged to come home, but hey, progress is progress). His electrolytes are a little off. His potassium was 4.9 so we will decrease his Aldactone (that's the diuretic that spares potassium) to just twice a day. Also, his sodium was low at 2.1 so they said to have him eat some potato chips or other salty foods.

We weren't able to draw his Vancomycin level this morning because when I went to hook him up to his IV at midnight, his PICC line had clotted off. I have to say that having that happen was just not what I needed. Especially since the morning labs depended on me giving that medication on time (not to mention that they couldn't draw labs through it if it was clotted off).

Well, I was already in a bad mood when I called the on-call home health nurse. But when she told me that that there was nothing she could do about it, and then proceeded to tell me that "It wouldn't be the end of the world" if he missed a dose of his antibiotic (or had to get poked for his labs in the morning), well that was not what I needed to hear. Seriously, can you say FURIOUS! I was honesetly livid at this point. It could of been since I was tired and just wanted to be asleep, but honestly, this nurse was absolutely zero help and just kept giving me excuses as to why she couldn't help me when I would press further and ask questions on what the next step would be. She finally just told me to wait until the day nurse came and that she could take care of it (which by the way, she would not have had what she needed to help me since this nurse wasn't going to call her to let her know of the problem beforehand). Although frustrated, I accepted her answer and went to bed.

So to make a long story short. I called our "normal" home health care nurse before she came to let her know that his line was clotted and that he needed TPA to get it opened. She made an extra trip to her office, got a doctor's order for the TPA, and then came down. Luckily, the TPA did the trick and busted up the clot. She was able to get most of the labs and I was able to give him his morning dose of his Vancomycin.

Needless to say, I called and complained to the manager this morning, because this could have (and should have) been done last night with my first phone call. I can't stand to be left hanging, especially if it is your job to help me.

So, the plan now is to go to his scheduled clinic appointment Wednesday morning. Home health will come prior to his appointment to draw his labs (and check his antibiotic level this time) so that they will have the results when we get there.

Overall, I am feeling much better about how things are progressing. I just hope that it will continue to move in the right direction. As far as Ethan goes, he is also beginning to act more like himself (which means that he is unfortunately putting up more of a fuss with wearing his oxygen), but hey, feisty is good.

As always, thank you so much for your kind words and prayers. And to Liz and Todd, we got your care package today in the mail and the kids LOVE it (and I love the M & M's). You know our family well. Thank you SO much!

---Allison

"The Lump" Update

Just a quick update on "The Lump". I think this thing is taking on a life of it's own. Not because it is getting any bigger (Yeah!), but because my thoughts revolve around it.

Anyway, I talked with the Cardiothoracic Nurse Practitioner this morning (who consulted the Infectious Disease doctor) and she said that his WBC was 14 but didn't have any bands (the immature WBC's that you see when the mature ones are used up from fighting infection) and that his CRP went up to 14.7, up from 8 at discharge (it should be less than 1).

The plan at this moment, since he is not having any fevers, is to have home health come and draw more labs Monday morning. Once the surgeons are available in the afternoon and they have the lab results from that morning available, we will go up to PCMC to have them look at it. We will still go on Wednesday as well for his clinic visit with the Cardiologist.

Until then, Ethan is acting "normal". I've also put a pressure dressing on his lump (recommended by the Nurse Practitioner) to try and reduce the swelling and disperse the pressure. It doesn't seem to bother him with it on. Hopefully it will help.

---Allison

Just Waiting

These 3 pictures were taken this morning. I still think that it is getting bigger (even from yesterday). He still hasn't got a raging fever but has been flirting with one all day (high 99's to the highest being 100.4). The lump is definitely hurting him. He doesn't even like me taking pictures of it. Also, when he is laying down he will just whine and say "Ow" and pull the blanket up to his neck.

We took him to the Pediatrician's office and they wanted home health to come and draw some labs (a CBC and a CRP). The nurse just left and we should know if it is infection or just fluid by the results. Now, with that being said, the doctor won't call us until the morning, but at least I will have a small idea of what we are dealing with tonight.

The overall impression that I get from the doctor's is that they are not too concerned with it unless he starts running a fever again (since he is already on such a heavy duty antibiotic). But honestly, even if it is "just" fluid, eventually you would have to drain it if it keeps getting bigger, right?

This is all starting to get to me. I am trying my best to roll with the punches, but my reserves are pretty low at the moment. I know that many families have endured worse (and for much longer time periods) but this yo-yo is getting me down.

On a lighter note. Ethan was kind of grumpy this morning (come on now, can you really blame him? Look at that thing!). Anyway, Ethan was lying in bed watching a show and as soon as Gavin walked into the room, Ethan's face LIT up and he wanted Gavin to lay next to him in bed. Once they got settled in, Ethan reached out his hand for Gavin to hold while they watched t.v.. It really was the sweetest thing and truly warmed my heart. They really missed each other during the last 2 weeks. They are such good brothers.

---Allison

Give Me Your Opinion

Does his "lump" of infection look like it's getting worse to you? Ya, me too.

I've sent these pictures to the cardiothoracic nurse practitioner and she will show them to Dr. Kaza in the morning. He's already on the antibiotic that is supposed to treat his infection. I guess we'll have to wait and see what the doctor says in the morning. I'll keep you updated.

---Allison