Wednesday, July 22, 2009

Need to Stay Healthy

Clare is almost back to normal. Her rash is 95% gone (one week later!) and the itching is almost gone, too. She had moments when she scratched herself so much she would bleed. Our fabulous cardiac nurse at Children's is on the hunt for the anesthesia records to find out exactly what medications Clare received, so we can red flag those for the future. I think the rash was the worst part of recovery!

Clare's left wrist is still very bruised from the angio-embolization, as is her groin. In her wrist, she has a hard lump where the glue is in her vein. The Big Cahuna said that, over time, the glue will dissolve. By then, the vein will have shut down because of the occlusion. Clare goes back next Friday for a follow-up with the Big Cahuna to make sure that the glue is working. You can't feel the thrill in her pulse anymore, so I have to think it is working. Other than that, the only other noticeable recovery is that Clare is still working the anesthesia out of her body. Her muscles are floppier than usual, especially her upper body. When I pick her up under the arms, there is almost no resistance. Many times, my hands just slide right up her arms and I almost drop her - there is so little resistance, she cannot even hold her trunk muscles tight enough (like a 30-pound newborn!). I have been doing a funny "under-the-butt-first" pick-up, if she needs to be carried up the stairs or in and out of her car seat or dinner chair. I am afraid I am going to pull her arms out of her sockets! The increased floppiness means that Clare has to work harder to do anything, so she is exhausted by lunchtime. Especially since she is back in school four days a week. She had two therapies in school today and we got the brunt of that for the rest of the day. I wish she would nap! The best I can do is have her settle down for a movie, read books on the couch, and do other quiet things, like painting race cars that we can assemble tomorrow. It is very frustrating because I know she needs to nap, but try reasoning with a four-year old over that.

Since Clare is on the mend, I now have some sort of kidney obstruction. (Maybe that's one of the rules about a large family - all of us cannot be healthy at the same time.) After a few days of a new pain in my lower back and other symptoms, I had an ultrasound done this week that showed my right kidney is distended, most likely due to some blockage or infection. I am on antibiotics, but it is becoming increasingly painful, so I am going in for a CT scan tomorrow. I am praying that they find something on the scan. If not, I will be encouraged to undergo a more invasive test that involves an isotope injection. If I do this test, I will not be able to breastfeed Violet for 24 hours. I also cannot take any of the medications the urologist wanted to prescribe to soothe my enlarged kidney because of breastfeeding. So it's been a tough few days and I am trying to figure out what to do. Right now, I am pumping for the first time in six months to bank some breastmilk in case the urologist does want me to do the second test. This is where breastfeeding gets tricky - trying to balance my own health and comfort against my baby's. Right now, I can handle the pain, but I am a little worried about what comes next.

Thursday, July 16, 2009

Home Again

We arrived home with Clare this afternoon a little after 2pm. She has been in great spirits, but still has the rash all over her body which is now itching. She is like a little bear all over the house - rubbing her back up and down on the carpet, shifting from side to side in her chair at dinner, sticking her hand down her pull-up - all in the attempt to calm that furious itch! Before we left Children's today, I talked with a doctor from the anesthesiology department. They are going to flag Clare's file and compare the medications used in her anesthesia from this visit against her past visits and determine if they used anything new. The consensus is that Clare is having an allergic reaction to one of the anesthesia meds. She also spiked another fever this afternoon, which the cardiologist feels is just a reaction to the glue, being an artificial substance in her body. So we filled her up with Tylenol and Benadryl and put her to bed. We are all ready for a good night's sleep. Thank you again to everyone for all their prayers and well-wishes! We all made it through another one.

A New Day

I just got off the phone with Shawn, and Clare Bear is feeling much better. She woke him up at 4:30 this morning with, "Daddy, I feel better!" Her fever is gone and her heart rate is back in the 120s. She is still a little puffy and has the rash, but the doctors are pretty convinced it is a reaction to something in the anesthesia and not a fluid build-up. Shawn said her rash looks more pink now than flaming red, so it is improving. Clare was eating a little breakfast when I called, so if she keeps that down, she will probably be discharged today.

I am going to take Jamie to his allergy shots this morning then head back to Children's. Hopefully to bring Clare back home with me! (Oh, yeah, and Shawn, too!)

Wednesday, July 15, 2009

Successful but Sick

The best news is that the procedures were considered successful. However, they were also incredibly long and Clare ended up under anesthesia for six hours. Other than her open heart surgery, I think this is her longest time under anesthesia so far. So now she is pretty sick from post-anesthesia "complications." Fever, high heart rate, vomiting, unexplained rash over her face, trunk, and back, and fluid build-up. When I left the hospital at 8pm, she was starting to fall asleep. She is still receiving IV fluids since she is unable to keep any water down. She is being treated for her fever, and the nurse was waiting for the pharmacy to send up Benadryl (for the rash) and Lasix (for the fluid). The plan tonight is to treat her various symptoms, keep her as comfortable as possible, and see how she is feeling in the morning. Everyone expects Clare to be much-improved by then and, if she is, she can come home tomorrow.

I am not going to go into tons of details because it is probably boring to most people and I am exhausted, but the frenulectomy was successful in that it was done quickly and with no bleeding. We will not know if it makes a difference until Clare is back in school and working with her speech therapists. The embolization was also successful and the fistula is now closed. The interventional radiologist was able to save her radial artery and just use glue to close off the vein (the vein is not as important as the artery since there are only two arteries in the arm, the ulna artery and the radial artery, but there are numerous veins - here is your anatomy lesson for the day!). The aneurysm was not repaired - because of its placing, it would be very complicated to get to it and, right now, it is not making an impact on her hemodynamically (my dad was impressed I knew that big word - basically the aneurysm is not interfering with blood flow or causing added stress on Clare's heart, like the fistula was). Clare will return to IR in two weeks for another ultrasound scan to be sure the fistula is still closed and blood flow has returned to normal. Then we will just have to keep an eye on her aneurysm periodically to see if it ever develops into something more serious.

All in all, we are very happy with the outcome of today, but pray that Clare gets over the anesthesia effects quickly and can come home tomorrow. We all miss our sweet little girl!

The Waiting Game

I dislike the waiting part of the day almost as much as I dislike soothing the increasingly cranky 4-year old who at Day 2 has already proclaimed she is "all done" with the hospital.

So far this morning has gone off without a hitch. It was a fight to get Clare to take her normal morning meds, so the anesthesiologist gave her Versed (the mellow drug) through her IV instead of orally. (Amy - I totally understand now when you said Avery would just lose it if anyone came near her.) Clare is definitely at her limit with being poked, prodded, stuck, and wired up. We met with the team of doctors and nurses this morning, and the Big Cahuna went over the procedure and even drew a neat little diagram on the dry erase board for us. Depending on what they find when they actually enter Clare's vessels, the procedure may take anywhere from 3-6 hours. So we have some LONG waiting ahead of us. They are going to access the vessels through her groin and put in an arterial monitoring line as well (which I am not crazy about because that is what originally caused this whole mess in the first place almost four years ago!). Some things are still undecided such as how they are going to close off the vessels, whether they can save the radial artery, whether Clare will need a blood transfusion, yada yada yada. So we're just going to wait, wait, wait, and see. We are not allowed to stay with Clare when she is prepped and intubated, so we said our good-byes as they wheeled her away. She was extremely mellow at that point.

Thank you for all the thoughts and prayers this morning. I keep thinking that this is going to get easier some day, but the huge pit in my stomach always comes back as we prepared to hand our little princess over. In the words of our current hospital-expert Amy, "Prepare to be unprepared."

Tuesday, July 14, 2009

Going to Bed Now

Last update of the night - General anesthesia and interventional radiology will just see us in the morning. Lovely. The one big downer of this whole thing (not counting the fact that we're here in the first place) is that with four different departments involved, it's a lot of hoopla just to figure something out. Logistically, Clare's caths go so much smoother because only cardiology is involved. Now we're dealing with cardiology, general anesthesia, general surgery, and IR, so it gets very complicated with who's doing what and who's going where.

We met with the cardiologist tonight who went over the brief amount of information he knew regarding what was going on tomorrow. I have to say that he, his top nurse, and the general surgeon have been fabulous in nailing down these IR people to get this thing done. If it wasn't for them, we would still be in fistula-limbo. (Not sure what that means but it does not sound like a pretty place to be.) The doctors are fascinated by Clare's fistula (it's a rare occurrence in a 4-year old) and everyone wants to feel the thrill and listen to it. One of the doctors even let Shawn and I listen to it with her stethoscope. Not as exciting to us as it was to her, but interesting, I guess.

We also found out that Clare is on for the frenulectomy as well. The general surgeon will come in right at the beginning of anesthesia and clip that tongue once and for all! Hooray! That means that, not only will Clare finally have this done after four years of waiting for the right time, but she won't have to undergo anesthesia a second time in the process.

The IV finally went in around 8:30pm and was every bit as traumatic as I expected. They wrapped Clare tightly in a blanket so she wouldn't kick or flail her other arm. She screamed like a banshee and kept begging me, "Help me, Mama!" It breaks my heart, but all I can do is keep calm and stroke her hair and promise to pick her up when it's all done. Thankfully, the IV nurse made it a one-stick deal. A prize of Mickey Mouse checkers brought a tiny smile to Clare's tear-streaked face when it was done. Shawn was going to lay down with Clare in the hospital bed, put on a movie, and hope she falls asleep quickly. At midnight, the plan is to start her IV fluids so she is well-hydrated in the morning.

Violet and I are in the hotel for the night and ready for sleep. (Violet already beat me there.) I am heading back to the hospital at 7am because Clare will be taken in for anesthesia around 7:30. I will try to update as I can, but we really have no idea what to expect tomorrow. We are just praying for the very best!

More Fun Pics

We're still just waiting so there is nothing else to do but take pictures and post them!
(And I am glad that Clare is smiling now because she won't be once the IV goes in.)
Addendum: So I have to explain some of the photos because Clare was a riot today at the hospital. The top photo is her in her princess nightgown riding around the cardiac floor in the evening. She is such the little charmer. Shawn pulled her around the floor, and she waved at everyone. Practicing for when she is Miss America or something!
The photo of Clare in the bed talking on the phone - it is a play cell phone that she insisted on bringing to the hospital. She would "talk" on it frequently throughout the day. The cardiac floor is a strict no cell-phone floor because of all the equipment, so once you hit the elevators, everyone whips out their cell phones and turns them on, including Shawn and I. And including Clare. As soon as we got to the elevators, Clare would open her pink cell phone as well and start talking.
The last photo is Clare putting hospital bracelets on her stuffed animals. The hospital bracelets are printed on a sheet and come with five ID bracelets and a bunch of labels. Clare's nurse Kathy (awesome lady!) let Clare keep the rest of the bracelets, so Clare put one on each of the pink stuffed animals she brought with her. (Pink is the new favorite color in our house.)

Pre-Op Fun

Oh, the hospital life ain't the life for me!

My goodness - we are told to show up at noon for admittance and pre-op. It is now 7:00pm - Clare has been weighed and measured, an EKG done, and we met with the cardiac anesthesiologist. Seven hours and that is all that has been accomplished so far!! We still have not met with the interventional radiologist, cardiologist, or general anesthesia. Plus the dreaded IV and blood work has not been done yet. But, in the meantime, Clare has had a blast - riding the halls in a little car, painting in the activity room, playing on the hidden playground, splashing in the garden fountains, watching movies, and being served pudding, cheese puffs, and chocolate milk while lounging in bed.

Hopefully the IV will be inserted and blood work drawn before it gets too late, so Clare can go to bed. We do know that Clare's case starts at 8:30am, she will be on fluids via IV and off oral food and drink around midnight, and she will be intubated (on a breathing tube) while under anesthesia. We do not know how long the procedure will be (1-3 hours possibly), what kind of recovery Clare is facing, or even how exactly the procedure will go. The cardiac anesthesiologist (who will not be part of the actual case tomorrow, but has to consult on the anesthesia involved because Clare is a cardiac patient) explained that many of the decisions regarding the case will be made tomorrow once she is in interventional radiology - like whether they will use coil or glue to occlude the vessels or how they even gain access to the site of the fistula (through an artery in the wrist or in the groin).

These are photos of Clare enjoying her pre-op day (at least someone did!). She loved the $12 balloon Daddy bought for her... until it broke its string outside and floated up into the trees. So if you're ever in Prouty Garden at Children's Hospital, you may find that balloon stuck at the top of the trees.

Monday, July 13, 2009


We head down to the hospital tomorrow so Clare can do her pre-op and be admitted for surgery on Wednesday. Not technically surgery - it is a catheter embolization, but surgery is easier to say.

As we get ready for our hospital stay, my thoughts tonight are with two of our friends from our WS-community, Avery and her mom Amy. Avery is one month older than Clare and is undergoing surgery tomorrow morning to have a pacemaker put in. We are sending loads of prayers their way tonight and tomorrow for a successful surgery and that the pacemaker does its work and Avery can get back to being that amazing, sweet, equally-crazy-curly-haired girl that she is!

Thursday, July 09, 2009



... being up a good part of the night with a teething Violet
... finding the perfect exercise outfit only to have Violet grab my bowl of granola and milk and spill it all over me
... getting four children fed and dressed and out the door in time to drop Clare off on time at morning summer school
... going to the allergist so Jamie can receive his sixth round of weekly allergy shots and keeping the kids entertained while we wait quietly in the doctor's office for 30 minutes to be sure he does not have a reaction
... having Simon fall off the curb and cut his lip open

... I was so proud of myself that I actually made it to the gym this morning. Only to have the guy next to me jogging on his treadmill BACKWARDS. Come on? Really? Backwards? Hey, it was an accomplishment I was just walking forward.

Wednesday, July 08, 2009

Familiar Rhythm

As we start our countdown of less than a week until we return to Children's Hospital for a three-day stay, it amazes me how easy it is to slip back into the routine. The routine of mental and physical preparedness for our stay. It has been almost two years since Clare was at Children's for a procedure. That alone amazes me! I feel as if we are finally on the path of Clare outgrowing her pulmonary stenosis. Her cardiologist always told us it would happen one day, but I never truly believed her. It's hard to see that as even a possibility when faced with the harsh reality of cath after cath, as we were in Clare's first year. And just when I had a glimmer of hope and Clare was able to go 15 months between caths - BAM - she had two more back-to-back. But it's been 22 months since her last cath, and she does not return to the cardiologist until... I can't remember now which month she has to go back. That is progress!

The downside to not being in the hospital as frequently is that I do not know what to expect out of this hospital stay. Since I always seem to have a nursing baby these last few years (and that nursing baby is NOT Clare anymore!), Shawn is the parent who will stay with Clare overnight. Violet and I will be with them all day Tuesday, then stay in a hotel down the street from the hospital that night, so we can be there almost all day Wednesday as well. As long as the procedure goes well, though, I will head home Wednesday night to be with Jamie and Simon again. Clare was 2 1/2 years old that last time she was admitted at Children's. Now she is over 4 years old, and I have a feeling that there will be much trauma involved. She has reached the age where she knows what's coming (as in nurses with needles), and the anxiety over any procedure (blood draw, IV stick, x-rays, echo) is worse than the actual procedure. I am already preparing myself that the worst moment in terms of Clare meltdowns will be when they insert her initial IV. And I know the worst moment as a mother will be when the doctors take Clare away from us. That's how prepared I am at the moment. And, of course, I know that you are truly never prepared for any of it.

Tuesday, July 07, 2009

A Date

We finally have a date for Clare's procedure! She will undergo a catheter embolization of her A-V fistula on July 15. This will be done in Interventional Radiology at Children's Hospital. We were able to easily convince the general surgeon of the seriousness of Clare being well-hydrated before undergoing anesthesia. They are going to admit her the night before so she can have fluids via an IV when she is cut off food or drink. Score a HUGE point for us! Her cardiologist wants her to remain overnight after the procedure on the cardiac floor for monitoring, so we are looking at a minimum of a three-day stay at the hospital. I will just be so happy to have this done with!

Monday, July 06, 2009

Photos Photos Photos

I finally got around to updating Jamie's, Clare's, and Simon's yearly photos last week. (I did take Violet for solo photos last month, so she just got in on the group shot this time.) I tried a new photographer at a new studio and LOVED IT! The only photos I were not 100% thrilled with were Simon's and that was because Simon has declared for the past few months that he does not partake in photo sessions. (I have Easter and cousin group shots to prove it!) But his photos are still awesome. Enjoy!

My Kids Rock!

Love It!