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

8/22/2009

Today was just another day in the neighborhood. Mackenzie is showing a lil more improvement each day. They continued to let her try and get her blood levels back to normal on her own, which they are slowly improving. She has been pretty much sleeping all day again. They took an x-ray of her one leg cause it was so much more swollen than the other. They wanted to make sure there was no problems going on which there wasn't. The nurse this morning told us they heard some bowel sounds, which is always good news. Her swelling overall was down considerably compared to yesterday. This is because they stopped giving her so much fluids and they were glad to see she was able to get rid of it all on her own without the use of lasix. Her lil face actually looks like her again. The surgery team will be in at six in the morning to asses her to see if she might be ready to go and get closed up. If not then most likely monday. But things seem to be looking good for tomorrow. One doctor said today that her lab results don't look like they belong to someone with an open abdomen... which is good to hear. Her blood pressure started to drop today some but the nurses said it was because she is so relaxed. Not much more to report today, it's just kind of a slow on going process. Might i add that we need to get her outta here soon cause she really could use a bath... she has dry skin all over, she smells a lil weird, and when you kiss her lil forehead it taste like salt ha. But, once again thanks for the prayers. Has a great night or day.

Hello, as per request of some friends we have made a paypal account also if anyone would like to donate anything for lil Mackenzie it would be appreciated and only takes a few Minutes. There is now a button to the left here connected to an account we started for Mackenzie. Thank you and god bless.

08/21/2009

Today, they stopped giving Mackenzie blood products (plasma, platelets...) This is really good news cause it means her DIC is getting under control. DIC more times than none is fatal, but our lil mac has once again beat something else. Her levels still aren't as high as they should be but the doctor wants Mac to do it on her own, i guess they do better in the long run that way. The infectious disease team found out she has staph infection from her open abdomen and in her blood. The antibiotics she has been on cover that though, and all signs show that that is also going away. They have been coming down on the pressure on the ventilator, which is good cause she doesn't need all that help. So other than that there isn't really much to report. They're not gonna really make any changes till after they close her up which is looking to be sunday possibly. After this they can start to discuss taking her off the ventilator and taking that dumb tube out of her nose. Although she seems to like sucking on the tube that's her mouth from the ventilator ha. This is also a good sign, cause a lot of times babies have problems eating by mouth after something like this. There are many kids who require some type of therapy. Especially newborns cause they are used to being full without eating. Mackenzie is used to eating and it's only been a week since she last ate so that is all good. But it will also be awhile before they try feeding her by mouth. Dr. Lee also told us That she will go home with her stomach still not fully healed. Because he won't close the skin, this will take several months to heal on it's own. She will also come home with the G-tube and what's called a broviac, which is a long term iv line that she will receive her TPN through until she is weened off. So we will now be mini nurses at home lol. Lucky us have a good friend that took care of Mackenzie while she was in the NICU, and he has offered to help with anything once we get her home. Well keep praying and sorry for those of you who were looking for this last night. Have a blessed day.

08/20/2009 Day after surgery

Today Mackenzie took a few steps forward. Her lung x ray from last night look good. The right one doesn't seem to be collapsed anymore and the other seems to be free of fluid. This morning they were giving her more platelets because of her DIC, but later on in the day her levels were up to almost 60 so they decided to let her try to do the rest on her own. A normal level would be somewhere between 75-100 or even a lil higher. She didn't really wake up much today or stir around, which is kinda disappointing but at the same she needs her rest. There was talk today about taking the tube out of her nose that goes to her stomach and basically sucks the bile out and what not because there was nothing connected to her stomach. But now the G-tube they inserted yesterday is serving the same purpose, but i don't think the surgeon was around today so they are going to wait to talk to him about it. Her stomach looks good as does the rest of her. She is not as swollen as she has been. The plastic surgeon came and looked at her wrist earlier and put some stuff on it and wrapped it up to help get rid of some of the black dead skin. And sometime in the future a small skin graph will most likely be necessary. All in all it has been a pretty good day. There are still many things going on with lil mac though and she is still in critical condition. We are hoping the next week things will really start to turn around, once her abdomen is closed. We would also like to thank everyone for there thoughts and prayers. God has really taken this whole situation into his hands and proved that he does perform miracles. Last friday when we brought Mackenzie in here the doctors really didn't think she would make it, let alone be able to live with what bowels she had. Here we are a week later, and they are talking about how they have hope that she will be fine with what bowel she has left. So just keep praying for our baby girl please.

8/19/2009 3rd surgery

Today Mackenzie was scheduled for surgery at noon. After a day full getting bumped for emergencies and what not she made it in at 2pm. After about three hours of surgery the doctor came out saying everything went well, and all her bowel has been sewn back together, with a final measurement of 85 cm. Dr. Lee said that he feels that might just be enough to work with. They also put in a gastrostomy tube. which is inserted directly into her stomach through the abdomen. This will be used to feed her when she gets to that point, which is still some time out. The tube will also most likely be left in for quite a while. This morning prior to her surgery the doctor informed us that they believe her DIC and infection is getting better. Her platelet count got up to 40 but did eventually drop down to 13. But compared to the past couple days her platelet count wouldn't even go up it would just stay the same. The number in a count is just the amount of platelets per so much blood. I am not entirely sure what the required concentration is but 13 is low and 40 is also low but still not as bad. Since surgery that hasn't been much change until just now actually as we are sitting here her blood pressure keeps dropping and they are trying to figure out what is causing this. She is still very sick and things could still take a turn for the worse at any time as much as we want to celebrate her intestines being fixed for now, there is still a very long road. Early next week she is scheduled to be closed up. What they will most likely do is close the fascia, which is a strong tissue that protects the organs. They will leave the skin open to heal on it's own which can take several weeks. We were told this is because the skin is no longer sterile, and it is just much easier on a child to let them heal themselves. Keep praying and be sure to check back... Thanks

08/18

There isn't much change to report today. Some of her blood from when she was admitted started showing signs of bacterial growth. Which was to be expected with all the dead tissue floating around inside her. They have had her on three different antibiotics anyway which they said between them the infection shouldn't spread. She is still getting platelets and blood, because of the issues she is having from the DIC, which was talked about in yesterday's post. The biggest change today is they are going to start her on TPN, which is the intravenous nutrition that will provide her with what she needs to live. She is scheduled for surgery tomorrow afternoon now to put the pieces of bowel together inside her, and possibly close her up depending on how swollen she is. One of her lungs is collapsed partially and the other has some fluid around the top. We were told that this wasn't something to worry about that it will go away but is something that can happen while being on the respirator. Keep praying for her she needs it, especially tomorrow for surgery.

8-17-2009 - Very swallon

Mackenzie is stable today, but is very swollen. She is the biggest she has been yet. They took a scan of her lungs again, and they're looking the best they have yet. It still is partially collapsed, but has opened a little. Infectious disease and the hematologists came in today to look at her. They are working together to help fight her infection. They now have her on 3 antibiotics, rather than 4. She has an infection throughout her, but they're unsure as of right now what kind. They're pretty sure it has came from the bowels. The doctor's told us that she has DIC (Disseminated intravascular coagulation). Small clots consume all the available coagulation proteins and platelets, normal coagulation is disrupted and abnormal bleeding occurs from the skin (e.g. from sites where blood samples were taken), the digestive track, the respiratory track and surgical wounds. The small clots also disrupt normal blood flow to organs (such as the kidneys), which may malfunction as a result. She had an IV in her arterial line in her arm, which they had to take out today because the blood flow stopped there, causing a blood clot to form, and dead skin to appear. The plastic surgeon is coming in tomorrow to look at, and she will more than likely have to have a skin graph.Mackenzie has been hooked up to a ventilator with a breathing tube down her. She can breath on her own but the Dr's don't want her to, they want her to save all her energy so she can heal better. She is also on a pain killer/sedative, Fentanyl, which is about 80 times more potent than morphine. She was on a paralytic but have taken her off since she seems to be doing ok. Although from time to time they will give her a dose if they need her to be still for awhile.

8/16/2009 - 2nd surgery

Today Mackenzie had surgery at 7:30 am. After an hour the Dr. called us to give us an update because it was taking longer than he had originally told us. The news was, he was taking some of the bowel out and she was stable, but she is still very sick. After another hour or so they came out from surgery. The average baby her age has 250 cm. Mac now has 88 cm. This is what is called short bowel syndrome and people do live with this affliction. However, she is in a gray area where she might be ok or she might not and need a transplant, it is too early to tell at this point. Either way she will need to be on what's called TPN which is a nutritional supplement, which will be put in under her neck, thru an IV. This is necessary because with the shortened bowel she can not absorb all the nutrients she needs to. The only problem with this is that the TPN will eventually destroy the liver. At this point there is nothing more they can do. So, the goal is to get her weaned off the TPN or find a new organ before the liver is destroyed. She will also need a feeding tube put in her stomach, which they're going to try slowly to feed her food thru, in a couple weeks. Through all this she is still a very sick baby and there are many different things going on inside her. The Dr's said that she has been better they expected throughout the day since her surgery.

8/15/2009 Surgery

Mackenzie got out of surgery at approximately 8:30 am. Dr. Lee, her surgeon, told us that she had what is called malrotation of the intestines. Which is where the small intestines get twisted up and then restricts blood flow to her bowels, essentially killing them. Dr. Lee untwisted her bowels and wanted to wait a few days to see if the blood will start to flow back into her intestines. Mackenzie's stomach was left open to allow for swelling of her insides. There were many things we were told to think about this day. She could possibly heal completely with no problems, which was the least likely scenario. Then there was a 50-50 chance she could die. Finally she could have lost more intestine than she can live without, in this case we would have to decide whether we wanted to make her comfortable and let her go, or if we wanted to try and get a transplant. The next surgery was scheduled for sunday morning this is when we would know what to expect. Throughout the rest of the day Mackenzie was just kept stable.

8/14/2009 - Realized something was wrong

Mackenzie threw up all over early Friday morning at about 12:30 am. After giving her a bath we realized she was very pale and cold. She would also cry intermittently. We decided to bring Mackenzie to strong because something was obviously not right. After getting her into the pediatric ER the nurse checked her out real quick and then quickly got a team together. She was apparently very sick, while the ER team kept her stable surgeons tried to figure out what going in her abdomen, because her stomach was very distended (enlarged). Because it was so big they were unable to see much on the x-ray. So because of this they suggested we do emergency exploratory surgery.