Unfortunate news

hello everyone.

today was a horrible day for me.( i am sure i will have more to come). Lauryn had an appt with a dr at phoenix childrens hosp. they did an electophoresis and her hemoglobin dropped from a 13.3 to a 10.3. he believes at this rate Lauryn will need her first transfusion in 2 weeks. she will be exactly 8 weeks old.
he said because i had her at 37 weeks, she needs to be transfused sooner. he said if she was term (40 weeks) her hbf would have lasted her until she was 6 months.
i have to go back the week of oct 16. he will do another elect. he said if its an 8 or lower we will transfuse her then. we will use a universal donor at that time. he suggested in the future we use the direct donor program. any reason why?
also, he said i might not have a choice, and we probably have to put in a port a cath. This is what im most scared of. i understand her veins are like threads, but is it REALLY necessary? is it possible/worth it to give her the tx "normally"
Ive heard sooo many conflicting opinions about the port.
Are'nt they prone to infections?What are my options? Is the surgery to place the port a cath dangerous? is the port a cath common???PLEASE PLEASE help guide me!! the doctor was very nice and optimistic,but id like to know if any of you have had experience with this??
he said her veins might not even stay open? i cant imagine what im going to put my poor baby through! i thought i had such a "grip" and im really going down hill. please help me.

Love christine

Hi Christine,

I'm sorry to hear that Lauryn's Hb dropped so fast. I know each step has been hard but you've also been able to deal with it as you will with this. And you have a big family here to help you out. 

We had a thread at our MSN site about ports at

http://groups.msn.com/ThalassemiaPatientsandFriends/general.msnw?action=get_message&mview=0&ID_Message=1515&LastModified=4675487081142849608

As you can see from reading these posts that there are pros and cons. I hope we can get some further discussion about ports and hopefully from some parents who've had to make this decision. At such a young age it is hard to find veins and gets harder each time. Is it possible to transfuse regularly at that age without a port? And what about donors? Is direct donor a better way to go? Will that result in better matching and safer blood?

Dear Christine

I was away at Turkey and came back yesterday, and today I am reading your post.
I am really sorry to hear that your baby will need transfusion so soon.

It is quite common to start transfusions early, even as early as 2-3 months, as in the case of Piu, which we have read on this site.

Regarding the port.. the surgery itself is quite simple.. but yes, it is prone to infections as it is an open hole. So one has to be very careful. Putting the port is good in a way, because it is really hard to find veins at such an young age and it can be hard for a mother to see your child being pricked several times. Moreover with the port, the baby does not go through any pains of the pricking etc.

In India, they do not put the port easily, and I have not seen the port in any babies ( unless suffering from worser conditions like cancer etc, where they need to infuse many more times).

But can you not ask your doc, if they can remove the port when your baby is a bit older and veins are then prominent and easier to access?

So you could have the port for a year or two and then remove it. It is easier to care for the port when the child is small and is not going out of the house. So  it is easier to control any chances of infections.

About donors, I dont think you will have problems with that in the USA as blood is very safe there and they do all kinds of testing and cross matching before the blood is used.

In  India, we do have the practise of donors adopting a patient.. that means, one has a list of 15-20 healthy donors on their list and these people  donate only for that child.

I tried , and did bring up daughter using this method most of the time.. and the only time I failed, and  she got the Hep C virus. Testing in India is still to improve.

Only, neither of you should donate for the baby.

It is a hard decision to take. And you never know how frequently your daughter will need blood.. so maybe you should just wait and watch for 2-3 months before taking a decision. If the transfusion requirements become too frequent, then maybe that will hepl you to take a decison.

I sincerely hope it helps.. but the most important thing is that YOU have to gain strength and stay calm. Accept that this is the best and only way out and it is for your babys good. She will be fine.. trust me!

Love
shikha

my daughter is 16 months and has recieved ten transfusions the most recently she recieved 2 days ago, anyways they wanted to port her when i took her to a regular hospital.when i took her to childrens hosp(chicago) they said theydidnt have to......turns out the 1st 2 or 3 transfusions they ended up poking her like 3 or 4 times cuz her veins were so small and they"move" so now when we go she gets an ultrasound everytime in her arm so she only has to get poked once she didnt have to get a port. and i hope your baby doesnt have to either.    although im probably not as knowlegable on thal as some of our users, if they dont give u a valid reason why they want to port her i think it is more for theye convenience. hope i helped u some..
                                                                          sarah

Dear germ79,


I have 2 boys with thal major.  I remember when my eldest was very young, being canulated. He too did not like being checked over by  all these strange doctors.  He used cry sooo much that it was difficult for him to catch his breath...he was completely wet with perspiration and they would not be able to cannulate him till about 6th/7th attempt..perhaps more.
I used to feel so distressed to see him like this but there was at no point when I even considered a port.  I feel Andy is right about the doctors wanting it to be more easier for them rather than your daughter. A port can become infected causing more distress compared to one time every 3-4 weeks of trying to canulate your daughter.
I would say that do not let your daughter see your distress.  You need to be her strength and stay calm. Although I was crying inside every second of my sons discomfort I never let him see it.  I used to hold him close to myself to make him feel secure when the doctors cannulated him.  Eventually he trusted the doctor enough to know that they were not hurting him.  There used to be a Play Specialist present all the time to distract him but we found that he felt more at ease when he actually watched the doctors inserting the needle!
I think it is also important to have the same person to cannulate your child so that she learns to trust them and also because they would know the best place to cannulate where as different doctors would not necessarily know this.  You would also as a parent learn where the best place is.  With our eldest they used the same place for almost 9 years where as different doctors would assume that would not be the best site because it looked a bit scarred but it always proved to be the best vein.
It would get easier for her and for you.


Emby


Hi Christine,


The above posting was sent as a reply to another posting on ports.....I feel i should add that you should always have a choice in what is  best for your child.  Please do not feel intimidated by the doctors......there is always a choice, and the final decision is with you.
         

Thanks for some very good advice, Emby.

Please do not feel intimidated by the doctors......there is always a choice, and the final decision is with you.

Oooops,...just noticed the date of this post !!

Hope your little angel is in the best of health. I was just trying to touch someones life but you have soooo ''been there, done it'' already.....hope little Lauryn is truly in the best of health.

Emby  

I just want to tell you, I wish they had the port when I was a baby. You are saving your precious gift a lot of pain and you are saving yourself a ton of anguish. They used to strap me down.  They also had to stick me in my ankle, my neck and lots of other odd places to try and get a vein.

I have had a port over 10yrs now and I love it and yes it can get infected but to me it is worth it. In the 10yrs that I have had my port it only got infected once and it was because my room mate had a cat and I had no idea that inhaling fumes from cat liter could lead to infection. I have had my 2nd port over 5yrs now and I stay away from cats.

I am just telling you from experience this surgery is minor and is so so worth it, in the end she will benefit from it...

Gina

i think all children should get a port, i had one for like 10 years, and  at the end of the ports life i got infection thats onyly because port was getting too small for me, so i was treated and new port put in place of old one, new one stayed in about 8 years, but as i moved to adult hospital the nurses and doctors couldnt infuse in it as it moved a lot and they werent experinced so i had it removed and now just use veins, but this is very distressing.
It is so difficult to find a vein and wen they have to try 7 8 times i give up.

SO seriously portacath is a godsend for children i just wish i could have one now, do not make your children suffer pain unnecessarily. infection isnt that common. I never ever got an infection with my 2nd port, and neither with my first apart form the one time at hte end when it ahad to be removed, but compared to what i would have suffered it is nothing.