Some Medical Stuff

Children born with CMN are suppose to see a dermatologist from what I read at the least every year. Haleigh has not seen one in a while, the one we saw was 3 hours from here in Birmingham and she was not so nice, we decided not to go back as she brushed off all our concerns and never answered our questions.

All the information I have gotten has came from plastic surgeons that we have seen, her pediatrician, and the Internet that mainly being http://www.nevus.org/ and the Nevus Network. And of course other parents with children like Haleigh along with adults who have the same skin condition as Haleigh.

When I took Haleigh to the Dr about her asthma on Monday, he asked if we had been back to the dermatologist, because he has not gotten a report from her in a while. I told him the truth, that we had not went back and would not take her back there. He suggested since we had better insurance than we did before and could go with out a reference from him to call around and make an appointment. I am not sure why we really need to go. We are not going for test I guess its just a check up with them. She has an appointment for Tuesday or next week.

 

While we are talking medical, I talked to Dr C last night and E mailed him some pictures of Haleigh's eye. The corner of her eye where it meets the bridge of her nose, the skin there looks puckered, so with Dr.C's recommendation we started some Bio Oil tonight. She really hated it because I have to massage it in, but she will get use to it, I just wish she didn't have to. We also have to use more sunscreen. We have been using it, but I didn't realize she needed it even if we were just going for a car ride and she would not be out in the sun, but from the house to the car, UV rays still go through the tented windows. I never really thought of that. We know now though and are doing a better job with that too.

Chicken 4 Haleigh

Tuesday Night we held a fundraiser at Zaxby's, they were awesome, and I thought we did really well, 200$ in 4 hours and all I had to do was make some milk shakes, and clean some tables! But the marketing rep that was there said it was a super slow day, and she was upset that we didn't make more money. So she offered to let us have another night at a different store! I can't believe they are so willing to hand over 10% of their sales to us more than once! We have set a tentative date for the last Tuesday in June. I never knew how giving and open our community was until now. We also made 70$ in tips last night.

Haleigh having a great time!

We greatly appreciate all of our friends and family that came out to support us and help us washing dishes and welcoming people at the door! As well as everyone who came and ate the food.







Marilyn, Haleigh's NaNa, getting balloons

Crystal and her children (Haleigh -held, Collin, Landom, Aden, & Madalyn)



Milkshake team....lol

 

 





Cold and Flu season

I am guessing Haleigh has her seasons messed up, or maybe we are just more careful in the winter.

Last spring Haleigh developed a cough that lasted 2 months I took her to the Dr a couple times and we were given a couple different meds to try 1st an antibiotic then an allergy med then a liquid steroid. That helped for the 5 days she was on it then 2 days off and she was coughing again! So her doctor said she had asthma, we were given breathing treatments, 2 meds 3 times a day at 1st then after a week 2 meds once a day. If we missed any we knew if, we took all her meds everywhere we went. Last summer we spent a lot of time in the doctors office whezzy. We also had lots of fevers and colds and ear infections.

One weekend we went out of town it was november and we stayed longer than we planned and I ran out of meds, she was with out the one night and I got them filled where we were, but she was doing good so Jason and I decided to see if she still needed them. She had been on them for 6 months. Well Haleigh did great and we have not had to give her any treatments intill today. She went through 2 surgeries, and ALL winter with out any help, she has actually been really healthy, no bad cough or cold no flu, we were blessed through winter with good health.

Now that the weather is nice out, and we are out side a lot and I guess I take her out more because its not cold, well she has a fever, developed a cough in the last week, that is not going away and tonigh at the ball park she was wheezy! She has a compleate cold with runny nose, I need to teach her when cold and flu season is I guess.

Right now its 1135 PM and she is laying watching Finding Nemo. She has not been active all day and I am sure we are going to have a long night.

I don't think it would be wise for us to schedule a surgery in the summer time, I think Haleigh has some allergies that only come out in the summer, although when we went to the allergy doctor we were told she was mildly allergic to Dust, pollen, rag weed, and grass. But that none of her allergies were bad enough to need any meds or to see him again! Well right now I beg to differ, but instead I will get her some zertec and albuteol and yet to get through the summer with out any bad spells!

Grand Total

We got a total for our ball park tournament fund raiser. We made almost 3,000$! It was actually 2,942 and some change! I am so excited and thankful that we have so much support from our community! The yard sale brought in 650$ in cash, that does not include the pre-sale, where some church members wrote checks, everyone has been so great!

We have a few other fund raisers coming up too. Chicken for Haleigh is this coming Tuesday night at Zaxby's on springhill Ave. From 5PM to 7PM we get 10% of all sales between those times ONLY at that store. We are also this close to bring done with our long awaited cook book. We are hoping to have enough ads that we will make 100% profit from them! We have done so well I have a calm that has come over me. Even with the ever rising has prices, we have made enough to cover the next 2 surgeries, the one coming this fall, and then the one that will follow next winter! Our family would have never been able to raise that much with out the help of all of our extended family and friends! Thank you so much!!

Hospital follow up

I took Haleigh to the doctor yesterday, to get her primary care doctor's take on the test and stuff that went on with the hospital last weekend. Her doctor has always bee very supportive and helping me make choices in Haleigh's care, so I hold his opinion high. He said he does not think Haleigh had a seizure at all, he believes it was the medicine they put in her IV to make her sleep.

Now at the hospital they told me they had not given her anything before her episode, her medical records say the episode started less then 15 seconds after the needle went into the IV and before all the medicine was in. And that it lasted 14 seconds. He said if she had a seizure the EEG would have showed what part of the brain the seizures was in. The EEG was normal, he told us to take comfort in that, and the fact that Haleigh is back to normal, she didn't go with out oxygen for 14 seconds or we would know it.

Haleigh's throat is still red, but no scratches and no tears, that was also great news. We don't need a follow up with ENT.

He said he was impressed I took her to the hospital so quickly, as I hate emergency rooms and the way they are over used for things that can be taken care of in the office, such as ear infections and low grade fevers in other wise healthy children, he was glad I did because it was truly a life threatening event. That made me proud as a mom who knew what to do and did it right and scared that my child had a life threatening event at 2 years old.

Other good news was that we should not worry about her other surgeries in Atlanta, the medicine that she reacted to us a quick acting, short lasting medicine and is not used for long surgeries, for that they use gas. I knew they used gas but I was not sure if the other medicine played a role somewhere in other surgeries, so I just have to inform others of this reaction.

Her blood pressure was perfect at the doctors office and it was high due to the at least on her body from everything from choking to surgery and the reaction, it all together took its toll.

I just hope we don't have to ever do anything like that ever again.

.25 cent Extra

Friday night after we got home form a later night than planned at the ball park, we ate some chili dogs and watched the 1st half on the news. Our local news comes on at 10PM. At about 10.15 Haleigh started to choke, my first thought was the hot dog because its round even though she was playing and no longer eating. I picked her up and she vomited, I was thinking, good its out. Then she continues to cough, choke and vomit. We got in the shower where she continued the same, so I decided it might not be the hot dog and decided to take her to the emergency room.

Where we live has 4 main ER's. One is a major university hospital and sees traumas and mainly adults and they have a big burn unit. Another is really close to my house and where Haleigh was born but their ER I don't like; unless you are passed out dying then that look at you like you should have waited until the Dr office opened! So that left me with the other 2: the Children's hospital that is part of the university, and the one next to it.

I decided on the one next to it, because the children's hospital is always so full and takes 3 hours. I pull up at the hospital and there are 4-6 ambulances cop cars and a bunch of people everywhere, I decided then that we would get seen faster at Children's so that is where we went. I don't have a problem with the children's hospital everyone was really nice and took good care of us, but they don't call your doctors they have their own in house doctors and they are a teaching hospital, so as of now a Sunday Haleigh's Dr does not know she was even in the hospital, and we had to use the in house ENT even though I have one we have used for a long time.

So at the hospital the ER is empty. We sign in get taken right back and Haleigh is still throwing up, nothing big enough to have made her choke. She is not swallowing at all and is getting sleepy. We do an X ray, nothing, do another one higher, and there it is! A quarter stuck! Too big to pass and too far down to throw up. They said they would have to call the ENT and go in with a scope and pull it out. I have been through this before my now 7 year old swallowed a penny that got stick when he was 13 months old.

So everyone was getting ready and we got Haleigh an IV answered a bunch of questions and at 1:27 am Saturday morning she was taken into surgery, they said it would be quick about 15 mins. I really wish they would not say times cause you know when it goes past that time something is wrong. The doctor come to the waiting room at 2:15am, and said they got the coin out and it slid right out with out problems, there was a little scratched throat but nothing was bleeding and she would just be horse for a few days.

However there was a problem before they started. I knew it was coming and I braced myself and prayed as I listened to what he said next. Haleigh has what I believe to be a seizure before any meds were given to put her to sleep, so its not related to anything we did, although it could have been stressed induced, her blood pressure is also high. He said he didn't know how she would do or how it would effect her, but that he was admitting her to the floor and a neurologist  would be up to see her in the morning. It would be up to them when she got to go home.

Then he walked is over to recovery where she was. She looked good had a little oxygen mask on to help her wake up. She was so asleep, they told me I could do whatever but that they wake up in a better mood if they are allowed to wake on their own so we decided to let her wake up on her own. So I stood by her and rubbed her head for about 10 mins.

Her Dr came in and said she needed to wake up so they decided to wake her up, it was rounding 3 in the morning and I think she was just so tired she would have kept sleeping. They first tried to just sit her up and call her name that didn't work at all, so they got a cold wet rag and wet her face that pissed her off and she woke up crying and swinging! She sat in my lap drank her juice and they took all her vital signs, her blood pressure was 139 over 82, high but lower than it had been in surgery.

We were then taken to our room. I was so happy to be there I put Haleigh in the crib and started making the sofa bed they had for parents. The floor nurse came up and kind of laughed, she said she needed to do another set of vitals and ask me some questions, she left and I got Haleigh to sleep about 4am. At 4:40 the on call resident comes in and does intake and listened to Haleigh and explained that the neurologist would be in about 8 and would decide what to do. I don't remember what all she asked but I know she left about 5 am.

Jason got there about 7 as did breakfast and Haleigh woke up. I was so glad to see her walking, talking and eating. She was only up for about 20mins and went back to sleep. The neurologist came in about 830 and said he was not sure what all happened but he was going to do an EEG to check her out and go from there, EEG was done about 11 and that is when she woke up again. They have to be very still and keep their heads still for it , we watched a man fishing on tv and she did really good through it all.

We then took a shower, to get all the goop out of her hair, we then laid in the baby bed together and watch cartoons. The Dr came back in and said the EEG was great and he would recommend that they let us go home. He again said he had no clue what really happened, but she looks good and we just have to watch her. We left the hospital at 1:45PM. I was glad to go but wished Haleigh's primary doctor would have need the one over her care. I am taking her to see him in the morning, to go over everything with him.

During all this we missed ball games of Madalyn, Collin, and Aden. They had a fun day with their NaNa, Pappy, and Aunt Heather!

Today is Sunday and Haleigh is very tired still, she slept 16 hours last night and has not eaten much, she is drinking a lot though. She is now napping some more.

We still don't know exactly what happened in that OR, I plan on getting the medical records, so I can take them to Atlanta for her next surgery. I plan on making sure on her blood pressure at the Dr tomorrow, it was 99 over 60 when we left yesterday. The last Dr we saw said what she thought happened was the stress from swallowing the coin caused the high blood pressure, the high blood pressure caused that seizure, and that is causing her to sleep so much.

I think its weird no one wanted a follow up. Not the ENT or the neurologist. So I have to look to my doctor for answers and guidance. I am glad we have a good one!

Thank you for praying for Haleigh through the weekend we know they helped her do so well, God was watching my baby, and helping us cope I felt him there with me, giving me comfort.