9/11/2009 Out of the PICU

Well sorry for such a long delay on the update, but with me starting a new job things have been a lil crazy. So, since last time they removed the breathing tube again and has been doing just fine with absolutely no help breathing. There has been no sign of any infection either. There was a two or three day period where she was on a withdrawal medicine, she was very fussy during this time. they were able to take all the IV's out of her except one, which was in her head, for her dex, her withdrawal med. She could not leave the PICU while on this med, so we had to wait for a few extra days while she was weened off of it. Till now she has been on the floor for her third day today, and is now IV free. They were able to start feeding her also through her G-Tube. They started at only one cc an hour continuously. And for those who don't know how much that is it's about a fifth of a teaspoon. They start off so small to make sure she can tolerate the feeds then slowly increase. The problem that is very commonly run into is severe diarrhea, which we have not encountered yet, and we are now at 4 cc's an hour. The reasoning behind the continuous feeds is that it can be much harder for her to digest it all at once which is called boles feeding. This is though something that we are working towards once we establish she is able to tolerate her feeds. The goal is when she comes home is to not have her be on continuous feeds. The surgical team is pleased with her progress and the healing of her abdomen. The GI (gastrointestinal) Doctors plan on increasing her feeds to 5 cc's tomorrow if everything goes well, and possibly start some sort of feeds by mouth. It is very hard to do this though when she is getting so little, but there is also a worry about her forgetting how to eat properly. Today we spoke to physical and occupational therapy. Physical therapy will be helping us with her major muscle development, and occupational therapy will help with things like eating and speech and eye movement and more mental development type stuff. With Mackenzie being premature and her current situation, she is qualified for at home therapy sessions, to help make sure she is making proper progress. As it turns out we will probably not qualify for any at home nursing care, we could get something with periodical visits but that is it. All in all it has been a very good couple weeks with some progress. I would also like to thank everyone for their support and prayers. And don't for get to say a prayer for those lost eight years ago on 9/11.

O give thanks to the lord, call on his name; make known his doings among the peoples.
1 Chronicles 16:8

08/30/2009

Well today was a lil step back but these things are to be expected. But anyway they put the breathing tube back in this morning. I guess she was breathing hard and her blood gas was not very good. Her blood gas is just the oxygen and carbon dioxide content in her blood. But this isn't anything really to worry about since it happens a lot, she just isn't quite ready. They are not entirely sure why though either. Her stomach is a lil distended (enlarged) this can make it hard for her to breath because it pushes against her diaphragm. They took blood cultures also cause there is the possibility of an infection. It could also be withdrawal from the fentanyl. But there are no real tell tale signs as to which one it might be so we are just gonna kinda watch it for a couple days till the cultures come back and see what happens. With the breathing tube they put the tube in her nose again that goes into her stomach. They turned the suction off on her G-Tube because there was the possibility that that was cause some irritation and causing the slight bleeding that was being sucked from her G-Tube. Of course with all of this we can not hold her anymore. They also had to put another line in her foot because they took it out last night, and left the arterial line in her leg. She received another blood transfusion, and will most likely require another sometime the next couple days. I really lost count on how many this has been but it is definitely more than ten. There was also an issue today where grandma had to get everyone's attention in the intensive care unit and get a nurse in the room stat cause her respiratory rate was down to 19. When really she was on the ventilator and that didn't matter cause it was breathing for her. All in all it was an ok day. Were gonna have set backs on the road to recovery but as long as it's nothing drastic then all we can do is just keep moving forward. So once again say a lil prayer for lil Mackenzie.


I will not die but live, and will proclaim what the lord has done.
Psalm 118:17

08/29/2009 No more breathing tube

Well, if you haven't guessed already they took out the breathing tube. Because of this she is also off the fentanyl (her pain medication). They are still giving her morphine however every two hours as needed. So with the breathing tube out we were able to hold her for the first time in more than two weeks. It still wasn't the same though cause all we can do is cradle her in our arms because she still has a lot of other lines and what not coming off of her. They also removed the tube going in her nose and down to her stomach which was just helping to keep her stomach empty. They will also be removing the venous line in her leg, and possibly the arterial line tomorrow. Now hopefully they will be able to start feeding her soon. They will start with what's called a trickle feed, which is like one cc or so an hour to see how her bowels are working. 1 cc would be comparative to getting a nice big burger with fries and only getting to eat one fry. Have a nice day, and god bless

08/28/2009

Hello, sorry for the delay on updating the blog. Well, since the other day, they have not taken the breathing tube out. But they have inserted the broviac yesterday. So i think i explained the broviac but just in case, it is basically a very long term IV. It is in her chest just above her left breast. We will use this to supplement with TPN with what ever she doesn't get out of her feeding G-Tube or by mouth. So this will be in anywhere from 3 months to 5 years or more it all depends on how well she does eating, this is also the same with her G-Tube. The good thing is that they can also take blood out of this so there is no more poking her all the time. The tough part will be we have to be very careful when she gets home to not get this infected. It is very important that we take the best care of this, as the doctor put it this is her life line, and this will now be a full time job plus. So we will have to hire some sort of in home nursing care when she comes home. We will know how to take care of her and do everything we need to but, we can't change certain things plus blood work needs to be taken on a regular basis, and her feeding needs to be evaluated on a weekly basis to decide on if we increase or decrease her feeds. So, anyone planning on visiting, be advised that clean hands are important and purell will be provided as will gloves or masks if necessary. Her wrist, if you remember the arterial line damage, has healed up quite well, although there is still a good probability she will need plastic surgery. She also had two small bowel movements today, which is an awesome sign that everything is working good. Speaking of poop...i guess we will also be changing diapers a lot more frequently, she will be going a lot more and babies like this have a tendency to develop bad diaper rashes, and we don't want that. So the plan for the next few days i guess is to start weening her off the pain meds and hopefully getting the breathing tube out. The trouble with taking the tube out and keeping her on the pain killers is that small babies tend to get real shallow breaths and not get the proper oxygenation. I believe that we may be looking an earlier return home time than originally planned. Once she starts feeding i believe they will be ready to send her home. Sorry again for the few day delay, and now for the long entry, but have a great weekend and god bless.

And their prayer offered in faith will heal the sick, and the Lord will make them well. And anyone who has committed sins will be forgiven. Confess your sins to each other and pray for each other so that you may be healed. The earnest prayer of a righteous person has great power and wonderful results.
James 5:15-16

08/25/2009 HAPPY THREE MONTHS!!!

Well if you haven't already figured it out Mackenzie is three months old today. So i will be accepting all gifts in her name for now since she is not able, ha just kidding. But, we got good news today, hopefully tomorrow they will take the breathing tube out finally. Once this happens we will be able to hold her again. They have been lowering her ventilator settings all day to see how she does and they think she is ready. There hasn't been much more on the redness of her stitches so, no news is good news. Her sugar levels have leveled right back out to where they are supposed to be once they added the glucose back into her TPN. All her other blood work keeps coming back really good. There is also talk that maybe Friday they will insert the broviac. This should be her last surgery... hopefully forever. She has been more alert today, I don't think they will need to keep her on the pain meds much longer either. But it bothers her when they change the dressing on her stomach you can see her grimace. This is cause they have to push these lil pieces of gauze in between the the stitches on her skin to soak up the drainage and what not from the fascia. And they really jam em in there pretty good. We will also have to learn how to do this before she goes home, because she will not be fully healed. But other than that there isn't a whole lot new to update on, and i feel as she starts to get better there will be less and less. But, keep saying a lil prayer if you could and help her pull through this a lil faster. Thank you and god bless.

The Lord bless you and keep you; the Lord make His face shine upon you and be gracious to you; the Lord turn His face toward you and give you peace.
Numbers 6:24-26

08/24/2009

I guess there isn't much to report on today. Mackenzie's sugar level is down a lil so they have been giving her some extra glucose. They are not really concerned with this because apparently they took some out of her TPN so they are just going to add back in there. I guess also that they use sugars to help heal so her body is using extra sugar right now. I was worried about diabetes at first but i guess her sugar would be high not low so that's good plus it doesn't run in either of our families. The sugar loss might also point to an infection, but all her vitals and other blood work is good, so that doesn't look like the case. Her abdomen is red around her cut, wear all the stitches are. Doesn't seem like anything to worry about yet but it is being watched. This can be caused just because of the irritation of being cut and stitched up a couple of times. If the redness gets worse or starts to spread away from the immediate area or starts to get any type of liquid coming out, then that is a sign of infection. They also just lowered some of her ventilator settings again, which is good maybe soon they can take the tube outta her throat. But they want to put the broviac in before they take out the breathing tube for anesthetic reasons. We got more blankets today also, and some booties and socks so her lil feets stay warm. When her lullabies were turned on tonight (they have some you can play through there hospitals setup) Mackenzie got a big smile on her lil face cause she loves her lullabies. She used to love listening to her's at home in the swing and nip nap and bassinet. Have a great day, and God bless.

Jesus can heal me through my believing, receiving, and speaking His Word or through the touch of another believer who is empowered by the Holy Ghost.
Mark 16:18

08/23/2009 Fourth Surgery

Well, we were woke up this morning about 2:45 because Mackenzie's heart rate had jumped up to 230 beats a second. Normal for a baby is anywhere between 100-140 or so. They were not really sure what was causing this and the only thing they could think of was a shot they had given her called Albuterol, which can cause an increase in heart rate. During this time there was also the discovery of some green fluid inside her abdomen. Her stomach has been left open this whole time to help with swelling and so the doctor could look in there to see. It has been covered with a lil piece of plastic, it almost reminds me of a fish tank. But anyway, The resident surgeon came in to look at her as scheduled at around six. He didn't really say too much so we waited for the surgeon to come in at nine. He decided he wanted to get her in surgery and find out what exactly what this green stuff was. It could have been either the G-tube having a leak or part of her intestine had perforated where he stitched it up. This could also cause any number of problems. If it was something with her intestines he said he might need to take some more out, or not depending. Or insert some sort of drainage valves to help keep the stuff from leaking in her. Either way, the bile that was now in her where it's not supposed to be would cause problems because the bacteria and what not. Once she was out to surgery she was only gone for about an hour at most which in this case seemed like a good sign. Dr. Lee informed us that one of the sutures had in fact perforated at a curve in the bowel which was the most likely place for something like this to happen. He then went on to say he was able to fix it by simply adding a few more stitches and tightening that part up a lil more. He also said there is a 20% percent chance that it might happen again. Saying that he still closed her up because it would just help the whole healing process, and if need be he could cut the stitches and get back in there. He did not however fully close the skin up, simply because it increases the chance for more infection. The downfall to all of this is if the sutures were to perforate again it would be fairly difficult to tell because they can't just look in there, they would have to watch how she acts and her blood tests and what not, but then there are so many other things going on in her that it could be hard to say what exactly is causing whatever problem. But i guess for now we will just pray that we don't need to worry about that and just move forward. After surgery her heart rate came back down to normal where it has been all day. We also spoke again to the hematologist (blood doctor) and she informed us that we will no longer require her services because the DIC is no longer there. Which is a huge relief and big step for Mac. The rest of the mainly consisted of the doctors adjusting her meds and what not. She need more calcium again as well as magnesium. Her glucose levels are also a lil low, nothing to worry about but not where they like to see them so they are giving her a lil bit sugar to help her out a lil bit. Mackenzie's platelet count made it up 90 today also, which were told was a defense due to the surgery but whatever cause that's the highest they have been in a week. After surgery they also needed to make a minor adjustment with her breathing tube. It was a lil too far in so they just pulled it out some. We were also able to get some of her blankets from home today to put in here lil bed with her. She still needs a bath and some lotion. We can't put lotion on her here cause she is under the heater and that fry her skin basically. So, if everything stays on plan she is all done with abdominal surgeries yay. The next step would be getting that stupid breathing tube out and one more surgery to insert the broviac, which i think i explained before if not i'll do it again when they put it in. We love you all and once again thanks for the prayers and support. God Bless.

Many are the afflictions of the righteous, but the lord delivers him out of them all.
Psalm 34:19