Saturday, July 25, 2009

Results of the Heart Cath

Saturday the 25th of July. Today marks ONE MONTH since Tucker had his surgery. One month since Tucker has opened his eyes and seen his family.

Please continue to keep Tucker and his family in your thoughts and prayers. After yesterday's Heart Cath, it seems things are going rather well, it's just a matter of time now. Tucker Time. Send him strength to recover completely and quickly. -Alisha

OK, sorry it took us so long. We didn't get to come back to see Tuck until after 9pm. This is the jest of things. They took down 3 vessels by coiling them. They really thought there were going to be more than that but weren't. They got to measure the pressure in Tuckers left atrium, which is still high. The wetness of the lungs is the back up from the left side of the heart, which they knew was happening but now they know the extent of it. The pressures are coming down, they were in the 30's now they are in the 20's. These results just mean that the left side of the heart is still very stiff and TIME....time is what it will take. Again, we don't know how much of that will involve this hospital stay and what will not. We were very happy to learn that it wasn't something more wrong in the heart requiring some other action, like an additional surgery or valve problem. Just time.

We can move forward to extibation at whatever rate Tucker is ready. I am not sure what that means exactly. I have a big list for rounds tonight with questions. Todd and I need to make a decision on how we are going to handle this stay for a longer period. I believe it will involve a switch off, one at home and one here, then switch again. Hunter will be starting school, the house needs up keep, we have jobs that need to be tended too as well. All things that cannot be on hold for months and months, if that is what it is going to take. (I don't know that is what it will take, if it is we will deal with it and do it the very best way we can...but we need a plan now, different than our original one)

Ophthalmology showed up today (finally). They dilated Tuckers eyes and did some "scrapings". (yeah OUCH!!) They sent them for cultures. So far they are saying he has ulcers on his eyes from not closing all the way for so long. The nurses are to use drops every hour on them-it is a refrigerated antibiotic drop. Ophthalmology will be by every day until the eyes are back to normal. I didn't get to talk to them. They did this right as he came back from cath lab and paralyzed him so they could do all the eye cultures without him moving around on them. (this was part of the reason it took so long for us to be able to see him when he got done with cath...that and the DIGGING exploration for new iv ports---yeah even the head was tried)

Tonight we are mentally exhausted. We were so hopeful that there would be lots of vessels to close off and that it would be a miracle fix, off the vent and home all in the same few weeks. Maybe that will still happen, maybe it wont.

Time......Tucker time!!!! We know this yet try to do things on our time only to relearn this lesson again and again. Everything Tucker has done thus far in life is on his terms, his time.....and this too will be done on his terms...his time.

♥ Mommy

Thursday, July 23, 2009

On The Schedule

It sounds as though tmrw will be another day full of news. Please keep Tucker in your prayers as he undergoes another Heart Cath tmrw. Thank you! -Alisha


Don't know what time exactly but the heart cath will happen tomorrow. They were so busy today they couldn't fit Tuck in. Dr Del nido stopped by to explain what it is they are looking for. He has looked at the heart cath from pre-admission and thinks there are several other vessels that could have been coiled then that were not. This could be the reason that Tucker cannot seem to get his lungs dry again. This will also be an opportunity for them to measure pressures in the lungs and the heart to ensure there are no other issues that could be or are causing issues. They want to do this before we extibate so that we have all the facts about Tuckers condition....all rocks overturned, all T's crossed. They dont want to extibate then find that we cannot stay off, or have a hard time and have to be re-intibated again.

The body is an amazing thing. These vessels I am talking about....these are blood vessels that have formed , due to the heart defect, that help the heart get blood where it needed to go. With the defect Tucker had it was fine, however with the fixed heart it causes extra blood to the lungs, causing them to be wet. These can be "coiled" off so that the blood is not taken away from where it needs to be. As Tucker's heart becomes more and more relaxed these vessels, as I understand, will stop growing because it will be getting adequate blood flow to all the correct places. (there are all kinds of medical terms that I am missing in that explanation but I dont remember any of them) If you have been following us for a while, I think I mentioned that they had coiled 14 or something like that of these vessels presurgery.

The cath will take about 4 hours and we should have results pretty quickly on what was done during the procedure and what needs to be done,if anything, to move Tuck forward!

♥ Mommy

Thursday Morning Updates

Tucker is getting a blood transfusion this morning. Not sure why he dropped so much overnight, it was 35 and this morning 29. (the humanicrit) So this morning we are getting blood. The didn't take a lot of blood gases yesterday so I don't think that could do it. The nurse said maybe he is lacking iron...and we needed to check the white blood cell count.

Then, Dr Marx talked to Dr Del Nido this morning and they have ordered a heart cath. This is a procedure that is done through the groin, the same procedure we had done before we had our surgery. They are concerned that we might have some more vessels that need to be coiled off. This will also give them lung pressures, heart condition and lots of information that is needed to know where to go next. They are very confident that the coils are what are needed but won't know until they get in there. Don't know if that will be today or not but sometime very soon.

Tuckers belly is extended once again. He pooped yesterday but have put the regime back on to get everything out once again. The pee has slowed as well, we were positive again yesterday. X-ray looks wet again this morning. We still don't know what the infection is that is culturing from the lungs.

Wednesday, July 22, 2009

Wednesday Updates!

(Photo From The Past)

I lose track...Tues or Wednesday....anyway. Today is another day of fighting fevers and hanging out. We did get the arterial line out of Tuckers left hand today. It quite working overnight and had been in since surgery day, so it was taken out. The pacing wires to Tuckers heart were also removed today, also in from surgery. Anything that could come out today did to ensure infection is kept to a minimum.

We have moved to yet another pair of lucky socks today, hoping we will find the pair that has the most power in Camouflage. They talked, again TALKED is the key word here, of extibating Tucker as soon as we can get the infection and fevers under control. The longer the tube is in the more apt we are to more infection. We will take the tube out and go to a Cpap mask for extra support. This could happen as soon as 2-3 days from now, again I cannot remember what day it is so ..Friday maybe. I am sure they wont do something like that over the weekend so it might even be Monday...again, Tucker time.

We have ophthalmology coming to look at his left eye. It is really red, from being half open during paralyzation. They gave us drops to put in them but they are not helping. He has a bed sore in the back of his head now, one on his back and one on his ear. The only iv line we have is the new pic line they put in yesterday , mmmm maybe it was the day before. Anyway, he is at bare minimums on access and things attached to him, which is good for his body and healing. He squeezes our hands, and calms down when we give gentle touches. I am sure he cant wait to get out of bed. I am scared, a little, that some of our progress on walking and such may take a step backwards with all the bed time. I know he will be weak, for sure (who wouldn't), but I hope and pray we don't have to start over on holding our head up, and sitting and such. (I am sure that wont happen but it crosses my mind for sure....a month of NO getting up, NO eating, NO stimulation, on a low muscle tone kiddo....a lot crosses my mind)

That is us in a nutshell. I hope to have a post, very soon, on life without a breathing tube.....


Tuesday, July 21, 2009

Twenty Seven Days

It seems as though I run about 2-3 days behind updating this blog. Not to worry, there are many places to find updates on Tucker if they are not here.

Follow me on Twitter and you'll never miss a beat. I update throughout the day.

You can also check in on Mommy's view from The Bryant Family News.

And I get around to updates on Izzy 'N Emmy too.

Thanks again for keeping up with Tucker. He and his family are on day 27.

Yep, 27 days.

  • 27 days of living in a hospital room.
  • 27 days of showering in a hospital shower.
  • 27 days away from home, in a state they'd never been to before.
  • 27 days of eating fast food, hospital food and vending machine food.
  • 27 days of sleeping on a bed next to Tucker, who by the way has been in his hospital crib for, yep, 27 days.

Just stop a moment and imagine what you have been up to in the last 27 days. Amazing how it seems as though these last few weeks have gone so fast from our end, but I am quite certain The Bryant Family is ready to come home.

(Weekend Spongebob Marathon)

Karen has been updating at will, but as she has mentioned, there isn't a lot of updating to be done. Only small changes and tweeks are made each day and living through the ups and downs once is enough that she shouldn't have to write it out again for us.

So here is the jist of things as of today, Tuesday, July 21st. Tucker has a lung infection of some type. Antibiotics were put on tap today and hopefully they will work some magic and Tucker will be all better soon. They are not sure what has caused the infection, but it could be from the vent tube being in place for so long.

Besides that, the main focus is weaning Tucker off of the vent. This is the first step in moving forward. Having a lung infection and all kinda sets him back, but again, the meds should help him clear that up fast. He also received a pick line today and hopefully his central line will come out soon. The longer it's in, the more prone to infection Tucker is.

Tucker is also still sedated and on EPI again. EPI is a drug that increases the blood pressure to make the heart beat a little faster. This keeps the fluid from accumilating too.

Hunter is back up in Boston now and I am sure they are all glad to be together again. Tucker and Hunter are close and I just know that when Tucker heard his sissy's voice, he felt much better. This will also give Karen and Todd a distraction from the everyday mundane.

So, that's the basics. For more info from Karen, hop over to her family blog and you'll find some more goodies.

In the meantime, please keep sending those prayers and good vibes. At last check, the doctors told the family that Tucker is still several weeks away from home. Work your magic and send Tucker and his family all the strength you can muster.

The following are specific blog entries.

Saturday: Quiet Night and We Have Poop!

Monday: Monday Again

Tuesday: Thank You and I Know, I Know