Victoria's Health update!

We had a wonderful Christmas and New Year. Really low key here with Victoria. Grandpa Bob came to Florida to see us and that was really cool. Eddie and I are not used to being so low key. We used to travel all of the time. We always spent Christmas with my family in Minnesota. So being in Florida the last 2 years with V seems a little weird. We all went for a lot of walks and of course doctors appointment along with Therapies. Grandpa Bob liked to come too. Grandma did a lot of great cooking and Baking as usual. She sure helps us out a lot since being home with V. Like Grandpa says V needs her own pit crew to take care of her and we love every minute of it. O yes, dad did cook the Turkey for Christmas Day and it was really good I must say.

Victoria had a great holiday and got lots of gifts from Grandma and Grandpa. I think we need to move to a bigger house to fit all of the new toys all of which are learning. Grandma says that V has to catch up on all she missed out of during her hospital stay. As for her health update, here it goes.



Heart & Cardio- Hypoplastic Left Heart Syndrome

She is doing very well with her heart function after the Glenn Surgery in March. She is getting pretty good saturation's but about the same she had before the surgery which is around 80% in which you and I will get 100%. This is typical for toddlers with this condition. The cardiologists think that she may have some collateral's that effect her saturation's from being a little higher. Will will see time will tell. Victoria will need one more heart surgery when she is around 4 years old. This makes me get knots in my stomach just thinking about it. I believe that's when she should get 90% or higher saturation's. Lately, her heart rate at night has been dropping very low and we are not used to this. Usually it is the other way around higher from fevers. Its almost like she is either way too hot or too cold. I will be making a call to her cardiologist this week on this one. Heart rate in the 50s and 60s is getting me a little concerned usually she sleeps around 85 to 100.



Infections & Immunology/Allergy

We went to see Vs Immunology Doctor in December and her T-cell count is still very low.

This means that V has an extremely compromised Immune System. That is why we can not take her to places like church, malls, restaurants, and travel etc. we do not want to risk her getting sick and ending up back in the hospital. The good news is that she has not had a fever since her last hospital stay in October. She takes an antibiotic every Mon/Wed/ Friday once a day to protect her from getting pneumonia. I would like to know a little more about her immune system which seems to be a mystery right now. I am hoping over time that her T-cells improve. She will also be getting tested for allergies this January. I have them and wonder if V does too.





Sight & Hearing

We took V to see her Eye Doctor Miller in December He is a really awesome Doctor! We found our that she has a very bad astigmatism and poor eye sight. So we just took her to get fitted for Glasses. Pink might I add!!! They should arrive from California next week. She had 20/20 vision going into her 2nd heart surgery this past March. The doctor explained to us that when young children Vs age are in the ICU settings for long periods they can get damage to their eyes from the lights that are left on all day and night in the rooms. I guess that is not good for them especially when babies are sleeping. Another thought he had was that the eye sight could have been weakened during her coding, which happened 3 times this past year. We will never know what the cause is but just focus on helping the situation.

As for her hearing, we are taking her to the University of Miami @ Jackson today for hearing aid evaluations. She had tubes put in her ears this past year and at first we thought they helped her hearing but we did another hearing test just before leaving the hospital in Oct, and it showed similar hearing loss in both hears just as before the tubes were put it. Victoria has a lot of secretions and we thought the tubes would help her. Once V gets her hearing aides and glasses She should be able to develop must faster motor skills. We are really looking for to her getting both. She will also see a world known Doctor that does the C. Ear Implants in a few weeks...



Lungs & Respiratory

Victoria's biggest issues after her heart surgery in March of 09 was with her lungs. She had Kylothorax and then kept getting pneumonia's after that. That is why she had to have the Trach put in. Her docs suspected that she kept aspirating her secretions into her lungs. Since she had the surgery for her trach her lungs are much better and getting stronger every day. No more pneumonia's. The only thing we battle daily with are her large amounts of secretions. We have to suction her trach sometimes every 5 minutes. This is hard on all of us. Grandma and I had a big scare right before the holiday. She was sleeping and she got a big plug of mucus caught in her trach and she stopped breathing. So we had to change out her trach very quickly but it was scary. This is all part of it and we do what we have to. Also she stopped making sounds sometime when she was in the hospital. We really miss hearing Victoria's Voice. We pray that she does not have vocal cord paralysis from being intubated so many times. Please pray for her that V will be able to makes sounds again.



GI/Nutrition

Since being home from the hospital V has had problems feeding unlike in the hospital. Its been so bad the last couple of weeks that she has been throwing up her food. This is bizarre for her because she had a G-tube placed and a nissen wrap in her stomach when she was 2 months old. This took care of her reflux and getting sick until now. She gage's and coughs when she feeds until she eventually throws up. The nissen is supposed to stop her form being able to throw up and stop her reflux from getting to her esophagus. Yesterday we went to the GI doc and she took V off of Zantac and put her on prevacid. Hopefully this will help her. v has to take aspirin every day for her heart and aspirin and reflux in young children do not mix well. She can not eat anything by mouth yet because her last swallow study test showed that V aspirated the barium into her lungs. She has a very uncoordinated swallow. I have been encouraged that this should get better as she gets older.



Motor Skills

She is getting stronger every day. Holding her head up more and more. Still working on tummy time with her so she can strengthen her upper body so she can sit up by herself. She is so used to laying on her back in the ICU that is her comfort zone. We are working to break that and she is at times fighting us to lay on her back. She can roll over but most of the time stops herself. It is funny to watch. We are thankful for her occupational and physical therapies that will really begin to help her soon.

We are so very proud of our little girl. She is truly amazing. God has really carried her and us this past year and I do know that the best is yet to come. Please continue to pray for Victoria as she gets stronger and develops herself past this stage of her life. Thank you for all of your kind thoughts and prayers. We love all of you very much!