Hello.. Mommy the Beautiful!

Me after six months in the hospital ICU.

Thought I would share with you my dark circles.

Somedays I feel and look like I was run over by a Mack Truck:) Today is one of those days.....

Surgery Day

Well what a crazy week. I am utterly exhausted....... I can only imagine how Victoria feels.

Eddie and I had meetings this week to discuss the game plan for Victoria with her docs. We really respected our discussion with Dr. Zahn and Dr. Bolivar they are really good docs along with many of them here at Miami Children's. They believe the only way to get Victoria home and give her a chance would be with a tracheotomy. We have been reluctant for some time but decided to agree with this care plan at this present time because nothing else seems to be working, in other words there really is no other option. The longer she is in the hospital the more chances of her catching another bacteria germ or virus. She is currently on another antibiotic called Zosyn for 2 bacteria infections and her white blood cell count is up again the last couple of days. So we want to give her as much help as she needs right now and the docs really believe strongly the trach will help her. We pray, trust, and believe because that is all we can do at this point. Victoria had her surgery for her trach and replacement of ear tubes Friday. She came back from surgery around 8p.m. and she is in a lot of pain so she is paralyzed and sedated. Last night was pretty tough. Victoria does not like change in general and surgery of course was an adjustment for her alone. She came back from the OR with very low saturation's in the 60s. Also Victoria had a new nurse one that has never taken care of her before. That alone is hard because Victoria is so complex things that you would normally do with others do not work for Victoria. She had a major episode of desating intot the 40s last night when the nurse decided to stop her sedation and paralytic for 10 minutes so she could run a diuretic through the iv port. The diuretic called lasixs was not compatible with her sedation medication. Victoria freaked out to put it mildly. She started moving around like crazy. Her heart rate and blood pressure went up significantly while her saturation's went down to the 40's. Just after getting her stabilized this happens. I got really mad because if she would have told me what she was doing I would have told her no way, I know that Victoria will flip. It is now noon Saturday this happened at 11 p.m. last night and she still has not fully recovered. It is frustrating to me when they give victoria a new nurse that has never taken care of her before right after surgery on a Friday night. It seems they always learn the hard way with Victoria, of course at Victoria's expense. She was given a bolus of sedation called medaz that makes Victoria crazy it has the opposite effect on her. Of course they did not know this and of course they did not ask Mom. You know what happened. I have to remember that nothing is perfect but I'm so tired of the same issues taking place. It just seems so simple to me to give Victoria a nurse that knows her I would sleep better and Victoria would be better off. This morning they decided to put her on a new antibiotic called zyvox because she looks so pale and her saturation's are not coming up easily plus her white cell count it up. They want to make sure she is not getting another infection. Also she is getting a blood transfusion right now , the 4th transfusion in the past 4 months because her hemoglobin is low for her norm. It is sitting around 12 to 13 however because Victoria's saturation's run low in general they like her to be around 16 to 18. Ok I am done venting for now. Please keep us in your prayers this road is extremely long and tiring. We will keep you all up to date.

Benefits of being raised in a small town with big hearts!

It's been a real trying week for Victoria. Thank God she is still very stable. She still has a breathing tube in and will until she has her tracheotomy hopefully next week. The doctors have told us that the trach is the only way to get her home safe. At this point that is all we want for her. I woke up early this morning to get to the hospital and thought that I would check my email and glad that I did. Stacey MacMillan sent me an email to let me know about the fundraiser that Star Boriin and Shelly Perkovich have been working on putting together for Victoria. THANK YOU SHELLY, STAR, STACEY, and all the others that are involved with the fundraiser. We really appreciate and are so grateful for all of your efforts. THANK YOU TO BARK DESIGN FOR putting together such a beautiful flyer for our little angel. I can just say that there are benefits to growing up in a small community like Chisholm, MN. This fundraiser is an example of how people care....... THANKS AGAIN ... This has really made our day!

The Journey

Victoria is improving and becoming more stable every day. They are slowly weening her off of a bunch of meds she was put on Tuesday when she crashed. No more dopamine, she is almost off of nitric oxide. Her heart rate and 02 are back to normal. Hopefully today they shut off the Fentanyl. They doctors were very impressed that she was able to maintain herself when her 02 was so low for so long in the 30s. She has not had a fever in over 24 hours. They have her on 2 antibiotics which seems to be helping. She tested positive for another staph infection. The docs believe that Victoria is aspirating her Silvia into her lungs and then gets sick because bacteria gets in the lungs. They are stumped as to why she did not aspirate before her Glenn surgery and after it is a problem. There is nothing they can do for that however, they believe a tracheotomy would be the best thing for her at this point. They explained to us that even though she did not have problems breathing the trach may help with aspirating. I wish we knew if it will help. However, we do know that victoria's body does not tolerate intubation. The last 3 times they intubated her she almost died. They are stumped about that too. When you intubate a child it usually helps them not hurt them. With the Trach she will not have to be intubated again from which I am told. The docs say that her low saturation's come when she aspirated her Silvia and then her lungs start to collapse. This has been the crazy cycle she is in for the past 3 months. They are hoping the trach helps but they said they will not know for sure until the procedure is done. For the next couple of days the plan is for Victoria to get her strenght back and then we will talk to the ENT doc next week to proceed with the trach. Please keep Victoria in your prayers. thank you .. talk with you soon....

A New Day!

I wish that I had a new picture to show you this time but that is not the case.
I just wanted to give an update sense it's been a few days. Things got pretty serious over the last few days for Victoria. Over the weekend Victoria began having fevers again along with coughing and sneezing and increased secretions just like the last time in Philly. I knew something was up and trying to get ready for what was to come. It is so hard watching your child knowing something is wrong and trying to explain to the doctors and nurses but until something really goes wrong we have to wait it out. Sunday night Victoria began desating into the 60s with 02 and her normal sats should run between 75 and 85. Mind you this was with CPAP which is pressure support to her lungs. I have not seen that before so I new something was coming down the pipe. The XRay on Sunday showed possible pneumonia again. The docs began treating her with antibiotics on Monday. But she was not doing well her lungs began to look concerning again. Yesterday they decided it would be the safest to reintubate Victoria. Because Victoria's heart anatomy is different she does not respond well to vent breathing support. With her heart Glenn procedure it is not ideal for a kid to breathe on a vent. So every time she gets intubated she crashes. That is what happened yesterday just like we told the docs. They are getting to know Victoria here in Miami so they did not know what to expect. They intubated her at 2:00 p.m. and around 5:30p.m. the nurses came to get Mom and Dad to tell us come say a possible last good bye to Victoria. They could not stabilize her and were very concerned. We have been through this before and called pastor Joey Perez to pray for another miracle for our little angel. It was a long night but by the Grace of God she is still here critical but stable. God is so awesome! If it weren't for his grace I have no idea where we would be today. Pastor kept telling me "Keep Believing, just Keep Believing" that is what we do everyday. Thank You Pastor Joey for not giving up on us and our little angel. We love you and your family! Currently Victoria is in the Operating Room because she is having a central iv line run through her liver. We do not understand it but that is the only place they can run it. Victoria is getting a drug called dopamine which can only be given via a central line. Last night she did not have one so they had to run the med through a regular iv and she has nasty burns all over her skin from the med. This medicine was needed to stabilize her last night. It was the only way to keep her blood pressure kinda normal and her sats kinda ok. They were as low as 30s. That was pretty scary. We do not know what is next for her. Please keep praying that God will reveal her issues to the docs. They are talking of doing a tracheotomy next week. We will see. Keep the faith and keep believing with us that Victoria will be home soon.

I love to blow raspberries

Now your Talking Baby!

Hey Peep's What Up?

I Just pulled my CPAP off my face! "oopsy daisy"

Making the best of it!

Hello everyone. I just got my bath which I love very much. It's so relaxing! I am still hanging tight. It's been a tough couple of days but today my XRay looked even better. I have been on a machine for breathing called CPAP it really helps me breath and expands my lungs. It's like extra large nasal canula's stronger than O2. They hope to put me on breathing support called vapor therm which I can't wait because it's easier to use than CPAP. I pull it off my face or turn and it falls off. I have been keeping the nurses very busy. I also get chest physical therapy every hour. Until the doc says my lungs can manage without it. It's really hard to rest getting chest pt every hour but it has to be done.

Miracles do happen!

Now faith is being sure of what we hope for and certain of what we do not see. Hebrews 11:1

Here is a picture of Victoria's lungs this morning ( little one, left side) and this afternoon( larger one, right side). Lungs are supposed to look black. As you can see earlier this morning the left side was completely white. BUT this afternoons is almost fully expanded on both side. She will not need to be re-intubated today. GOD is GOOD.

Ours prayers have been answered. Victoria is pulling through good today. Her X-Ray looks 50 % better than it did this morning. Her doctor is very pleased to say the least. He commented on what a fighter she is as she made a huge comeback today. She has been sleeping most of the day because she was up fighting all last night. Finally she is able to sleep comfortably. It is very painful to have a collapsed lung it really hurts to takes breaths. You can see the miracle for yourself.

Little Fighter!

Victoria got her breathing tube taken out yesterday. However, shortly after her left lung collapsed. They are trying to get the lung open by putting her on C-PAP which is a machine that blows positive pressure into her lungs. So far its not working. She has been fighting all night long. They are going to take another X-Ray today at 2:00pm to she how the lung looks. At that point they may decide to reintubate her. The last 24hours has been so stressful. Please keep Victoria in your prayers she needs another miracle. She needs to get out of the cycle of machines. We will keep you posted.

Finally this big tube comes out of my nose!

Finally, the big day has come for Victoria to be extubated. It has been one month of having a really big tube in her nose to assist with her breathing and to help rexpand her lungs that collapsed about one month ago from pneumonia. She is a trooper the nurses can't believe how well she has done with the tube in. Most babies need to be sedated or are just plain miserable. But Victoria always makes the best of every event. She has been busy playing as much as possible with the tube. We can tell it bothers her at times. She coughs a lot because it rubs in the back of her throat and gags her at times when she gets too rowdy..... We are praying that the extubating goes well for her ..... She also had another ecogram of her heart today and we will hear from the doctors tomorrow about the status of her heart. Please keep her in your prayers for a speedy recovery from the extubation and for her safe return home. We will keep you all updated. Thanks for all of your prayers.

My Mom takes naps when I do!

Awe Loving the hospital life. Everyone was asking where we slept in Philly:)

Daddy's Little Girl!

I love being with Dad!

Still Teething!

Through all this I have been teething. I went to Philly with 0 teeth and came back with 5. I love to chew everything in sight.

My Favorite Respitory Therapist!

Awe David Garrett I really miss you!! Everyone is soooo quite here in Miami I don't have anyone to wake me up at night during my treatments. (j/k) We will never forget you Dave.....

Well with all this traveling, I'm glad I do it with style. I have been at the Fort Lauderdale, Miami, and Philly airport. Boy, they say that the hospital is loud and crazy:)

I love to Fly

Well we made it back to Miami...The flight took 2.5 hours from Philly... I am adjusting well to my new environment and remaining very stable. We are working on weaning me off all the narcotics. Other than that no major changes to my care plan for now. Please keep me in your prayers I would really like to be home very soon....