Friday, February 25, 2011

GI issues :(

First - I love having a nurse for Tomas. It is so reassuring to have another pair of eyes on him. She has worked with him for 7 days now and only had one uneventful write-up. She is definitely getting lots of multi-system experience. I even left her with Tomas and ran the girls over to the library the other day. It was a quick trip, only about 40 minutes, but it was just so nice to be able to focus my attention on them. Bonus, we started school back up this week and managed to finish everything on their lesson plan, and went to go see a children's concert at the Dallas Symphony Center yesterday (with nurse and Tomas in tow).

So Tomas: Tomas, Tomas, Tomas...
He is having GI issues. This past weekend he started retching again. A few minor episodes, and then on Monday a fairly large one. He had an appt. with his surgeon anyway to look at a mass by one of his scars, so it worked out well because I am concerned that the hiatal hernia repair may be giving way. The surgeon looked at the mass and said it could be scar tissue or could be the abdominal hernia opening up again. He would put orders in the computer for the GI to check it out when Tomas has the endoscopy. As far as the retching, the surgeon checked an x-ray from January that showed the repair in place. That's all great - but he wasn't retching in January. For now he thinks it could be a stomach virus.

As the week progressed, the GI issues worsened. By Wednesday he cried after being on the J feeds for only half and hour. I can't switch to pedialyte or take him off feeds because of the hypoglycemia. It is J feeds with formula or ER for IV fluids. With the nurses help we were able to reduce the rate and figure out how much sugar to run through to keep his glucose levels stable. Slowly increasing I was able to get him back to normal by yesterday afternoon. His nutritionists were out this morning and he has lost 7 ounces in the last 2 weeks. He has not slept in 3 days, and not slept well in about 2 weeks. He is actually napping right now, and I pray he sleeps for several hours, but it hasn't happened in a few days. The longest time he's slept for since Friday is 1 hour and 40 minutes. He moans in his sleep and is clearly uncomfortable. Poor baby, if this is just a virus it is taking its toll.

My husband has started hi job in NJ, and will be travelling back and forth, which makes me all the more grateful for the nurse. I tried calling the new hospital in NY to get the ball rolling with transfer of care. I was transferred 4 times and then disconnected. This is going to be a long road. And if somebody doesn't start sleeping soon it is also going to be uphill!

Wednesday, February 16, 2011

Faith, Hope, and Pixie Dust

Olivia continues to do amazingly well. Just a palm sized bruise that only bothers her during sharp movements, but other than that she is fine. I can not express how wonderful that feels, for her as well I'm sure!
Tomas saw the urologist today. His renal scan was clean but there was some bladder wall thickening that needs to be watched. The urologist felt that since the bacteria Tomas grew was so rare that is just couldn't be true. He wants to catch it again but with a cath. This means having him cathed every time he has a fever, or if we have any suspicious urine output here at home. This makes having a home health nurse such a blessing. That is the silver lining in a rather disappointing morning! Some days the whole "tiny pieces of the puzzle" thing just really grates on me and it takes a whole lot of prayer to just get out of my cozy chair. Just once I'd like to walk into a doctor's office and have the doctor know what is wrong and how to fix it. It often happens that investigating one thing causes us to to trip over another. The bacteria was found while checking for a urine metabolic disorder, and the bladder wall issue was found while checking on the bacteria. Plus, I feel like every time a test result comes back normal we get further and further away from a common diagnosis, or maybe further and further away from a diagnosis at all. But somehow God moves me forward, and as every mother of every SN child out there knows, somehow we rally and rise again.

The nurse is working out very well. She is young and new to nursing, having only worked in a hospital for a few months. Tomas is her first home health patient. At first this sounds rather scary, but I like that she is not coming in filled with a preconcieved notion of what kids are/aren't supposed to do. She is, of course, quite competent in the basic nursing stuff - BP, HR, O2 - all that, but otherwise rather the blank page. That is ok though, because she watches, listens, has a quick learning curve, and I get it all done my way because she has no other experience to draw on. She works 3 days a week with Tomas and I am very much looking forward to the options this will open up for me and the girls once we are all comfortable.

Pixie Dust
As some of you already know, my family is moving (again - it's what we do, lol). Mike accepted a promotion and will be working in NJ. He worked there for a while before (it is his company's headquarters) and we lived just accross the state line in NY. That is the same area we will be looking at this time. The best part of this whole deal is no travel. He will have a regular office job and with the excepetion of a few meetings a year, be home every night. That is such a burden off my mind I almost had to put this in the faith section. Some nights I have a hard time falling asleep just wondering how I will manage if Tomas needs to go to the hospital while he is away. We have no family close by, and really - who else do you call at 3am to come and watch your kids? But it goes in the Pixie Dust section because that is what it will take to make this happen. The thought of buying/selling a home and transferring medical care just about paralyzes me! Not to mention a very difficult transition period where Mike will already be working from NJ before we are all moved up there. He will be gone for 2 weeks at a time. Again, the nursing was truely a blessing. I have meetings with the admit team the week of march 7th, and Mike starts the new postition on March 14th. Like I said - lots and lots of Pixie Dust!!!

Sunday, February 13, 2011

Sunshine and Lollipops

We had a fantastic week with my mom. The kids all had a blast with her. They made a snowbaby together, did Valentine's crafts, made fudge (my favorite part!) and stayed up late watching movies. The week went by too fast!

It was not all sunshine and lollipops though, on second thought it was. Olivia had her cardiac ablation on Wednesday, and because the weather was supposed to be terrible early Wed. morning and she needed to be there at 6:15, she and I drove down to Dallas the night before to stay at a hotel. This is the first time since she had any sibling that she and I have been alone at night together. We had a blast. My husband is a frequent traveler so the hotel chain sent up some free ice cream and sodas, and we had access to the concierge lounge with even more goodies. We stayed up playing cards, eating ice cream (until she was NPO), and just having some wonderful time together. The next morning we made it to the hospital just before the weather turned really bad. She took her goofy juice and was just hysterical to be around. My sweet, sweet angel. What a soft spot is in your heart for your firstborn! They took her back around 9 and were done by 12:30. That was pretty good considering they had warned me it could take around 5 hours. The doctor was able to freeze the bad spot, and told me it was for sure an AV Nodal Re-entrant Tachycardia. If you are going to have heart palpitations those are the ones to have! So all good news. She recovered just fine, with a small scare to a resident overnight with some funky heart rhythms, but the cardiologist put us all at ease in the morning. All in all quite a successful and uneventful hospital stay. I must say I spent a large part of the time waiting for the other shoe to drop. It was just so surreal to have everything happen the way it is supposed to.  She is recovering perfectly with just some leftover soreness. I couldn't be happier!

Tomas is as Tomas does. I think that will be my new catch phrase for him. My mom was here for 8 days and we had three doctor visits, two Rocephin injections, one lab draw, one new issue pop up requiring another -ologist, and one ECI evaluation with 7 people at my kitchen table.  He is stable, and got an all clear for the UTI from a few weeks ago, but with the last urinalysis some ketones were in his urine. I'm grateful for this, I have been testing him at home and have been telling the doctors he's ketotic, but now I have clinical evidence. The pedi is trying to get the endo consult moved up. In the meantime Tomas has a kidney ultrasound on Wednesday followed by a meeting with his new ologist - the urologist.  He actually had one until he was 5 months old, but then was discharged. So not sure if it counts as new or not.

Yesterday the weather finally warmed enough to take him outside. See if you think he enjoyed it:

Forgot to add that the nurse couldn't make it on Wed or Thurs because of the weather, but everyone muddled through just fine. On my way out the door I asked my husband if he knew what to do if the button should come out. He said just one word.

Monday, February 7, 2011

My dear heart

Olivia is having her cardiac ablation on Wednesday. Up until now I have been pretty nonchalant about it, but as the hours creep closer, the panic grows larger. Did I make the right choice for her? Ugh.. that is the curse of parenting, did we do it right? She can't take any cardiac meds because of her asthma, and she hates the SVT episodes and voted for the procedure when I asked how she felt about all this. I hate doubt!
She will be under for about 5 hours, the doctor maps the heart and burns any bad areas. A cardiac surgeon is on standby - just in case, blech. I am also worried about her asthma doing things to her breathing during and after the sedation. She and I are driving down to Dallas on Tuesday night, as a large snowstorm is supposed to head our way on Wed. morning. I'm glad we will have some special time at a hotel on Tue. night before she goes in. She has to stay the night, but if all goes well we will be home on Thursday.

Tomas had to go back to the pedi this morning for a re-draw of that pesky urine infection, and still needs follow up with the urologist. We are waiting on scheduling for the kidney ultrasound and VCUG. He also needed a shot of Rocephin today because of a pesky sinus infection that wont go away even after two different antibiotics. So he got an injection and a cath today, not a happy camper. Well, ok now he is, but at the time he was pretty ticked off!

In other news, his nurse comes out tomorrow for training. She will be here T,W,R - the days my husband usually travels, from 9:30-5. To say I am excited will be an understatement for sure. My girls aren't going to be to happy because I have now decided to take full advantage and go to a 3 day school week, pretty much matching the nursing hours. That means longer hours those 3 days, but off on Mon and Fri. It all worked out so well though, because now a nurse will be here with my husband and Tomas for the days that I am at the hospital with Olivia. Thank you, God for your perfect timing!

Friday, February 4, 2011

8 years ago

The world became more intense. Most of the world doesn't know this yet, because most of the world doesn't know Victoria Maria. But you will, she is not the type to go unnoticed. Beware, because she has exacting standards of justice and fairness; but do not fear for she is also filled with mercy and compassion to nearly overflowing. Lucky for you world she is not ready yet. Much needs to be honed and shaped still, but this I know - she will meet you head on and she will live in you with an energy you rarely see. You will be better for it.