Sterile technique and a Nigerian beat

Today we did our first solo infusion via Harris port.  We did so good. Seriously.  Derek was able to hold/restrain him by himself and I don't even flinch anymore when I stick him.  (Kinda morbid, but there you have it.)  Harris still cries when we hold him down, but he cries when I hold him down for a diaper change too, so...

Upon the advise of our hemo nurse, we played some of Harris' favorite music during the infusion to see if it would help him stay calm.  Once we got the needle in and he realized that it was not so bad, he stopped crying and let the Nigerian rhythms fill him up.  Mormon Tabernacle Choir:1  Harris:0.

Monday we're rocking it old school. Rad.



Good luck little Harris.  May all of your infusions be fast and all of your factor be clean.
-Mom

PORT-land

On Monday we had a port placed in Harris' chest.  We came to this decision gradually and jointly with our care team.  I am a big believer in looking at the entire picture when deciding what type of medical care is appropriate at any given time.  I believe this is true in all aspects of health care, not just hemophilia.

We considered a lot of different factors before settling on the port.  Among other things...

1. Harris' body has the ability to get him to places that his mind doesn't know to warn him about... there's a fair amount of scaling of tables and surfing on rocking chairs at our house.  Plus, with three older siblings there's a lot of keeping up to do... and that can be hard on the joints.
2. His "rubber ball" veins (ie- good veins that bounce around when you try to stick 'em).  This makes for a very sweaty, hold-the-hemo/wrestlemania extravaganza, where I usually end up laying across my baby attempting to distract him with his favorite food source, (me), while he screams his bloody head off.
3. The potential for turning out bitter siblings who tell their therapists all about how their mom made them wait for hours in the hospital waiting room with a baggie of brownish apples, some stale pretzels, and the choice to either watch the waiting room movie and like it, or watch the waiting room movie and not like it.
4. To this girl, self-reliance is always better than dependence... even though we will miss seeing our nurses on a weekly basis.  We really love them and they have become like members of our family.

After discussing the risks of the port, (infection, migration (another word for moving around), out growing it, clotting (are you kidding me?)), and the surgery (punctured lung - rareish, bleeding into the heart and chest cavity- really rare, oozing (another word for bleeding) - pretty common)  we decided to go ahead.

The surgery was short, maybe 30 minutes and we got to go back into recovery with him while he was still coming out of the anesthesia.  He didn't have any problems with the meds, but he was "a wild man" while leaving their influence, so the recovery nurse asked us to come be with him.  I think the mark of an excellent care provider is knowing their limitations.  I am sure that J. is an amazing recovery nurse, but she is not my baby's mom, and she realized that "mom" is what he needed.  I have so much respect for doctors and nurses who ask for help when they need it, or say "I don't know" when they don't.  They are really the ones I trust the most.

Our recovery has been surprisingly smooth.  I expected Harris to be in a lot of pain, but with the help of appropriate medications, he was up and walking (sort of) and climbing (sort of) the same day and was off everything except Tylenol by the end of day 1.

We went in for post op on day 4 and he looked "the best that we have ever seen".  Hardly any bruising, no oozing and the incision looks immaculate.

We are glad we made this decision and are keeping our fingers crossed that all goes smoothly from here on out.

picc pics

After Harris' last tangle with his weekly infusion and subsequent bleeding episode in his upper arm (rubber tourniquet: 1, Harris: 0) we set the process in motion to have a port placed in his chest.  The first step for us is the placement of a picc line.

The procedure went smoothly and reinforced to us how incredibly lucky we are to live where we live and have access to the kind of care that we do.  Every nurse and doctor with whom we have worked has been stellar.  The nurses in pediatric sedation and the piccu nurse were no exception.  They demonstrated a lot of sensitivity for Harris' past experiences with people trying to hold down his arms and legs and along with the pediatric anesthesiologist came up with a plan that would be the least traumatizing for our son.  I also appreciated that they listened to me when I told them that I was not a fan of the rubber tourniquet and that I did not want one used on my baby... ever again.

Derek and I were able to be with him as he went to sleep (with the help of the anesthesia - Derek actually held him and helped with the mask) and we were able to be with him when he woke up.  He was hungry and thirsty as he had restrictions on when he could eat, nurse and drink before the procedure.  I nursed him right on the table while they drew blood for his panels, infused him and dressed his picc line.

This is the first time that Derek has met Team Harris.  I have taken the lead on his treatments and do the interfacing with our medical staff because I am comfortable working with doctors and nurses (a result of my mother and my training as a doula), I know this disease and its lingo, and I stay home with our kids.  Derek works during the week and is therefore, not really available to go to our HTC like I am.  I think that it was very helpful for him to be there with our son.  It was good for his peace of mind as a father and as someone relatively new to dealing with hemophilia to see the procedure go well with no major complications like those experienced by my nephew a few weeks ago.  I am glad that having a picc and then a port will mean more independence for our family, and will also allow Derek to be more involved with the workings of Harris' day to day care.

Now... which sock would you like to wear over your line today sir?  ps - keep it clean, because it's sponge baths for the next 4 weeks buddy.  Sad.

healing up

picc line dressing

What happens when he doesn't get what he wants... like the camera.

MRI

Today my son Jack had a routine MRI done. The last time he had this done was in 2008. Jack has to alternate between chest x-rays and MRI's every year. This is done to check the placement of the port and all the "stuff" that goes along with having a port. Its not a bad thing, but it can be scary for a little kid. We have had great success with Jacks port. he had it put in when he was two, and it has been wonderful. We have had no infection or worries.

Like I said before, these procedures can be nerve racking for a kid. One thing I have learned as a mother with a hemophiliac child is to always be upfront and honest with them about everything. Yes, you will get a shot and it will hurt....but only for a second. The machine will be loud and you will have to hold very still. I have always told all of my children, not just Jack, exactly what will happen when we go to the doc. There will be lots of pokes, pricks, needles, and tears; but it is better to go in as a team with your childs trust, than to battle it out at every procedure. This is the Bloody Good Life of a hemophiliac. (just as a side note, Jack has done his MRI without sedation each time, and has done beautifully.) attached to this is a video of Jack explaining in his own words, just what it was like today.

Awny and Jack